Sick Girl Speaks! is now available everywhere I promised...ahead of schedule!
You can see my website for the details.
If you've been to my website recently, you may have to refresh the page (F5 on a PC) to see the new info.
Don't forget to write a review on Amazon after you read it!! :)
Thursday, October 18, 2007
Wednesday, October 17, 2007
What Are the Odds?
I got my author copies of SGS yesterday--they look good! I highly recommend iUniverse. It is still quite surreal to look over and see that book sitting on the coffee table.
Soon after my books arrived I got an email about a book by Amy Silverstein who is a heart transplant recipient. What do you think the name of her book is? Take a guess! Ok, here it is...wait for it...hold...get ready....the title is "Sick Girl"!
Holy cow! What are the odds????!!!!! How spooky and strange.
Soon after my books arrived I got an email about a book by Amy Silverstein who is a heart transplant recipient. What do you think the name of her book is? Take a guess! Ok, here it is...wait for it...hold...get ready....the title is "Sick Girl"!
Holy cow! What are the odds????!!!!! How spooky and strange.
Tuesday, October 16, 2007
I've sorta climbed Mount Everest too
As promised, I read "Into Thin Air" after I finished "Into the Wild". Again, not a topic I am terribly interested in but Krakauer writes so well, I was glued to the pages.
I hadn't really given much thought to climbing Everest before reading this book. I had heard bits and pieces about it--the thing that stuck most firmly in my mind was that the slopes of Everest are littered with dead bodies. When I began the book it was interesting but my resounding opinion was "What a bunch of dummies!" Why would anyone do that to themselves? Why go through the pain and torture and possible death solely for the satisfaction of standing at the top? At the point in the book when Krakauer himself reaches the top (I think it's called the summit?) my perspective was only reinforced. Not only do people spend very little time at the top of Everest but when they get there, they are so exhausted and loopy from lack of oxygen there's no emotion to celebrate. All that's left is the difficult and dangerous task of getting back down.
It was during the section in which Krakauer is making his dissent that something clicked for me. This book was written after an Everest quest gone very bad--many people died. Krakauer, to his credit, spends a generous amount of time reliving the dissent--the time when many mistakes were made--and analyzing his role in his friends' deaths.
He describes walking by people who were, in retrospect, clearly in distress and he didn't take notice. He describes a state of mind in which you walk by dead bodies and it barely registers, much less alarms you. He paints a picture of disorientation and utter selfishness. All he wanted to do was get to his tent and pass out. When others claimed they were okay, he felt relieved they didn't need his help and he kept on going. Meanwhile, the reality was that many people on that mountain were out of their minds with altitude sickness and really did need his help. He was describing what it felt like to be extremely oxygen deprived.
Believe it or not, his descriptions explained a lot for me. There was a time when I could go 4 or 5 days without a shower--it didn't bother me one bit. There were days , usually many in a row, when I was completely numb. I had no feelings and I imagine if I walked by a dead body my reaction would have been equally numb. There was a time when all I could think of was me and how I would get to the next place to rest. There was a time when the world was the least of my concerns--I feel sure I walked by plenty of people who needed my help but I couldn't see it. I was oxygen deprived too.
Perhaps this is one of the reasons climbing Everest is meaningful to people--you walk up and down that mountain with death right next to you. You can't breathe or think properly for weeks, maybe months. Perhaps, through that, a person can have one foot on the other side and still come back--just like I did when I got my transplants. Perhaps, Everest teaches them what it means to be alive.
Or, maybe they're just a bunch of dummies. I dunno.
I hadn't really given much thought to climbing Everest before reading this book. I had heard bits and pieces about it--the thing that stuck most firmly in my mind was that the slopes of Everest are littered with dead bodies. When I began the book it was interesting but my resounding opinion was "What a bunch of dummies!" Why would anyone do that to themselves? Why go through the pain and torture and possible death solely for the satisfaction of standing at the top? At the point in the book when Krakauer himself reaches the top (I think it's called the summit?) my perspective was only reinforced. Not only do people spend very little time at the top of Everest but when they get there, they are so exhausted and loopy from lack of oxygen there's no emotion to celebrate. All that's left is the difficult and dangerous task of getting back down.
It was during the section in which Krakauer is making his dissent that something clicked for me. This book was written after an Everest quest gone very bad--many people died. Krakauer, to his credit, spends a generous amount of time reliving the dissent--the time when many mistakes were made--and analyzing his role in his friends' deaths.
He describes walking by people who were, in retrospect, clearly in distress and he didn't take notice. He describes a state of mind in which you walk by dead bodies and it barely registers, much less alarms you. He paints a picture of disorientation and utter selfishness. All he wanted to do was get to his tent and pass out. When others claimed they were okay, he felt relieved they didn't need his help and he kept on going. Meanwhile, the reality was that many people on that mountain were out of their minds with altitude sickness and really did need his help. He was describing what it felt like to be extremely oxygen deprived.
Believe it or not, his descriptions explained a lot for me. There was a time when I could go 4 or 5 days without a shower--it didn't bother me one bit. There were days , usually many in a row, when I was completely numb. I had no feelings and I imagine if I walked by a dead body my reaction would have been equally numb. There was a time when all I could think of was me and how I would get to the next place to rest. There was a time when the world was the least of my concerns--I feel sure I walked by plenty of people who needed my help but I couldn't see it. I was oxygen deprived too.
Perhaps this is one of the reasons climbing Everest is meaningful to people--you walk up and down that mountain with death right next to you. You can't breathe or think properly for weeks, maybe months. Perhaps, through that, a person can have one foot on the other side and still come back--just like I did when I got my transplants. Perhaps, Everest teaches them what it means to be alive.
Or, maybe they're just a bunch of dummies. I dunno.
Sunday, October 14, 2007
New Frontiers!
I have been playing with Moviemaker this weekend.
I have decided to add videos, podcasts and photos to my website.
So far, the video is the only thing uploaded.
Check it out!
Also, I'm determined to get back to "real" blogging...not just babblings about the book release etc...Hopefully next week.
Having a great weekend.
XXOO
I have decided to add videos, podcasts and photos to my website.
So far, the video is the only thing uploaded.
Check it out!
Also, I'm determined to get back to "real" blogging...not just babblings about the book release etc...Hopefully next week.
Having a great weekend.
XXOO
Saturday, October 13, 2007
Another Night of Losing Sleep
Yup, I couldn't sleep again last night.
But, guess what?
Unlike two nights earlier, I wasn't tossing and turning from wrestling with anxiety or worry.
Last night I couldn't sleep because I was so excited. Things are beginning to come together and I have soooo many plans for when I the book arrives (I have yet to get my copies).
What a difference a day makes!
Yesterday I landed two great gigs. Both are events in April--one being my new workshop and the other is a talk at a large Hospice convention. (When I have all the details I will be sure to post them under the "Schedule" section of my website.)
This is an interesting time for me. Some days I am concerned about the future--will this thing take off in the way I hoped? Some days I feel elated--like things have progressed far beyond my expectations considering I only quit my day job Sept. 1st. Some days I am down right terrified of people's reactions to my book, my message, my choices.
As I have said before, I never anticipated my emotional reaction to the release of this book. It is easy to sit alone in a room typing out thoughts on a computer with an idea that someday people will buy what you have written. Now that it has become a reality, I have an overwhelming desire for those words I have typed to be worthy of their time and money. My emotions wax and wane. This is all I have come to expect--I am only certain of the uncertainty of how I feel moment to moment.
No, there is one more thing I am certain of--I feel more alive than ever before. I love my life and wouldn't change a thing.
But, guess what?
Unlike two nights earlier, I wasn't tossing and turning from wrestling with anxiety or worry.
Last night I couldn't sleep because I was so excited. Things are beginning to come together and I have soooo many plans for when I the book arrives (I have yet to get my copies).
What a difference a day makes!
Yesterday I landed two great gigs. Both are events in April--one being my new workshop and the other is a talk at a large Hospice convention. (When I have all the details I will be sure to post them under the "Schedule" section of my website.)
This is an interesting time for me. Some days I am concerned about the future--will this thing take off in the way I hoped? Some days I feel elated--like things have progressed far beyond my expectations considering I only quit my day job Sept. 1st. Some days I am down right terrified of people's reactions to my book, my message, my choices.
As I have said before, I never anticipated my emotional reaction to the release of this book. It is easy to sit alone in a room typing out thoughts on a computer with an idea that someday people will buy what you have written. Now that it has become a reality, I have an overwhelming desire for those words I have typed to be worthy of their time and money. My emotions wax and wane. This is all I have come to expect--I am only certain of the uncertainty of how I feel moment to moment.
No, there is one more thing I am certain of--I feel more alive than ever before. I love my life and wouldn't change a thing.
Thursday, October 11, 2007
Funny and a little embarrassing
Please know that I did not write this quote that you will find on the publisher's website:
"After more than three decades of living with serious illness, Tiffany Christensen still isn't dead! Sick Girl Speaks! explores the world of this illness warrior."
Isn't that terrible? And hysterical?
My first chapter is called Still Not Dead. That's where they (the publishers) got it from but, the way it's written, it sounds like we are all impatiently waiting for Tiffany to die already. She still isn't dead? My Lord, how much longer do we have to wait??
Funny and a little embarrassing.
Here's the question: it's shocking and will grab someone's attention but is it just too crass? It's a balance between having something bold that will set me a part and having something so out there that it will turn people off. Which do you think it is? Should I keep it or should I request that they remove it from the website? I need your input, please!!!
To make a private comment, you may email me at tiffc73@gmail.com
Thanks!!!!
"After more than three decades of living with serious illness, Tiffany Christensen still isn't dead! Sick Girl Speaks! explores the world of this illness warrior."
Isn't that terrible? And hysterical?
My first chapter is called Still Not Dead. That's where they (the publishers) got it from but, the way it's written, it sounds like we are all impatiently waiting for Tiffany to die already. She still isn't dead? My Lord, how much longer do we have to wait??
Funny and a little embarrassing.
Here's the question: it's shocking and will grab someone's attention but is it just too crass? It's a balance between having something bold that will set me a part and having something so out there that it will turn people off. Which do you think it is? Should I keep it or should I request that they remove it from the website? I need your input, please!!!
To make a private comment, you may email me at tiffc73@gmail.com
Thanks!!!!
Losing Sleep
Good news! My book is now available online!
In about 3 weeks my book will also be available from my website.
If you choose to buy from me, your book will be autographed and I will get a much bigger percentage of the proceeds.
Starting in January, 2008 I will be hosting a different non-profit for three months at a time. During that time, when you buy the book off of my website 10% of what I earn will be donated to that non-profit. The first non-profit to participate in this promotion will be one close to my heart, Project Compassion. I have several other non-profits in mind for this project. If you would like to submit a non-profit to participate, please send me an email at tiffc73@gmail.com.
Here's the part that kept me up last night...there are mistakes in this book. My sister already found a typo in the first 10 pages! Proof reading is not my thing. That's why I hired an editor. I somehow even managed to miss her corrections to my mistakes! When you read this book and you see mistakes, will it diminish the value for you? Will you understand that this was a self-published book limited to all of what that means?
It makes me nervous to know that there are people out there who take grammar and punctuation very seriously and are disgusted and nearly offended by errors. There are those of us, like me, who barely notice things like that. Then there is everyone in the middle. I would hate for my message to be lost because my book is less than perfect. Do you think I have anything to worry about? Should I continue to lose sleep or just get over it?
When you do find mistakes, I would love it if you could send me an email. I will be keeping track of the errors and when I have enough money for a reprint, I will fix them...perhaps that will accompany more chapters and be called a second edition. We'll see!
In about 3 weeks my book will also be available from my website.
If you choose to buy from me, your book will be autographed and I will get a much bigger percentage of the proceeds.
Starting in January, 2008 I will be hosting a different non-profit for three months at a time. During that time, when you buy the book off of my website 10% of what I earn will be donated to that non-profit. The first non-profit to participate in this promotion will be one close to my heart, Project Compassion. I have several other non-profits in mind for this project. If you would like to submit a non-profit to participate, please send me an email at tiffc73@gmail.com.
Here's the part that kept me up last night...there are mistakes in this book. My sister already found a typo in the first 10 pages! Proof reading is not my thing. That's why I hired an editor. I somehow even managed to miss her corrections to my mistakes! When you read this book and you see mistakes, will it diminish the value for you? Will you understand that this was a self-published book limited to all of what that means?
It makes me nervous to know that there are people out there who take grammar and punctuation very seriously and are disgusted and nearly offended by errors. There are those of us, like me, who barely notice things like that. Then there is everyone in the middle. I would hate for my message to be lost because my book is less than perfect. Do you think I have anything to worry about? Should I continue to lose sleep or just get over it?
When you do find mistakes, I would love it if you could send me an email. I will be keeping track of the errors and when I have enough money for a reprint, I will fix them...perhaps that will accompany more chapters and be called a second edition. We'll see!
Saturday, October 6, 2007
Out of My Element
What a funny group we must have looked like to the rough and tumble rangers patrolling our camp site! My husband and his dog are the quintessential outdoors men. In fact, they camped together in the middle of the desert for six months with minimal supplies. Then, on the other hand, you have me and my dog--she's wearing a fuzzy coat and I just keep asking "what do we do now?" Us city girls were a bit lost!
My husband was smart enough to bring us to a camp site that had running well water, bathrooms and hot showers. Granted, we had to walk down the road a bit to get there, but that was the extent of the difficulty there. I really don't know if I would want to go camping without those things...the bathroom was quite comforting to me! So, at the end of it all, I imagine by some people's standards, I haven't really camped at all. Well, we made a campfire and slept on the ground so...that qualifies it as camping in my book. I've learned that I don't like sleeping on the ground very much but I do like being outside all day--that is, if it isn't raining!
I was surprised by how hard it was, even with the luxury of a bathroom and shower. When people talk about camping, I don't usually give much thought to it, but now I will. For people who do it for any length of time, like my hubby has, I tip my hat.
Appropriately, I was reading "Into the Wild" during our stay in the foothills of NC. I had heard rave reviews about the book and was anxious to read it. I had so much difficulty relating to the main character, however. Even though I now was able to have a broader appreciation for his wilderness feat, I just, at my core, can't understand why anyone would want to drop out of the world like that. I understand intellectually that many people feel the same way Chris McCandless did, but I haven't yet found a thread to relate it to my own life in a way that will allow me to feel compassion for his journey and his death. It seems like such a tragic death, a selfish way to treat one's family and a cowardly way to deal with life's difficulties. I know many disagree with me on these points...
As for my own inner journey during my gentle attempt at going into the wild, I discovered something a bit disappointing about myself. On the ride to the mountains and for the first day or so, I was plagued by underlying anxiety. I was only going to be gone for a few days but the lack of "civilization" and methods of communication were quite disconcerting. What if something happened and I got sick? It's so silly and illogical--we were merely 20-30 minutes from a major medical center! Nonetheless,
it took me over a day to shake my fears. This irrational anxiety took me by surprise.
I have transplant buddies who have gone to exotic places--my friend who recently passed away was a great explorer and, among other things, hiked in Butan! Another transplant buddy went to Puerto Rico and another went on a long cruise. When they told me of their journeys, I never doubted that, given the opportunity, I wouldn't give a second thought to doing the same thing. Now, I know, that may not be the case.
Don't get me wrong, I have traveled--mostly to New York and San Fran. But I feel comfortable in those places that if anything goes wrong, there will be people to help me. Would I feel that way if I went to Butan? No way. Would I feel that way in Puerto Rico? Doubtful. Would I feel safe on a cruise? Nope.
I am adventurous with my thoughts and my willingness to take career/personal risks. What I know now is that my adventurous spirit may not extend out to geographical locations! I find that disappointing.
I felt out of my element being out of my element! Perhaps that is what I don't understand about Chris McCandless and others like him that go "Into the Wild." Perhaps there are people who feel most in their element being out of their element. If that is true, I suppose I can relate only in that I enjoy being out of my emotional element and taking personal risks. I have certainly made some impressive errors in my emotional adventures, just as he made some in his physical adventure.
Are there times when you feel out of your element and it invigorates you? What are the ways in which being out of your element fills you with anxiety? Is Chris McCandless unique or is there a part of him in all of us?
Monday, October 1, 2007
Camping and Other News
Tomorrow, October 2nd, my hubby, myself and our two old dogs will be heading to the mountains for a 4 day camping excursion. This will be my first time camping EVER! I am excited. Just keep your fingers crossed that I don't get eaten by any bears...
Here's the other news:
My book is in the final stage of production! I will have the first copies, the author copies, in my sweaty little hands in 2-3 weeks. At that point, my book will be available only through my website and the publisher's website. I think it takes up to 12 weeks before it will be readily available on all of the online stores. Any copy bought directly from me will allow me to have a slightly higher profit and they will be autographed. Very exciting.
Once the book is in my hands, I will be editing this blog and any chapters that are in the book will be cut down significantly. I will continue to blog, however. I have two more books in mind and this blog is the perfect place to explore my latest ideas.
Now, here's your assignment, if you choose to accept it!
I have an idea for my website. I'd like to start a section on the home page called "Ask Tiffany." People can email me with questions about things I've written or about something in their life they want another opinion on. Once a week, I'll pick a question and post it on the website. I will have a link to my blog and post my answer there.
You are welcome to use this as an opportunity to disagree with me, agree with me or just post a question with your blog name so you get a few more viewers. I'm excited about this project and hope to have lots of question in my in-box when I get home from communing with nature!
Here's the email address: tiffany@sickgirlspeaks.com
You'll get a vacation notice but I'll read them when I get home...
Thanks!!
BTW, I will be reading two of Jon Krakauer's books on my trip: "Into the Wild" and "Into Thin Air" (perfect camping books.) If I have time I will also read "Eat Pray Love"
by Elizabeth Gilbert. I'll let you know my reviews!
Here's the other news:
My book is in the final stage of production! I will have the first copies, the author copies, in my sweaty little hands in 2-3 weeks. At that point, my book will be available only through my website and the publisher's website. I think it takes up to 12 weeks before it will be readily available on all of the online stores. Any copy bought directly from me will allow me to have a slightly higher profit and they will be autographed. Very exciting.
Once the book is in my hands, I will be editing this blog and any chapters that are in the book will be cut down significantly. I will continue to blog, however. I have two more books in mind and this blog is the perfect place to explore my latest ideas.
Now, here's your assignment, if you choose to accept it!
I have an idea for my website. I'd like to start a section on the home page called "Ask Tiffany." People can email me with questions about things I've written or about something in their life they want another opinion on. Once a week, I'll pick a question and post it on the website. I will have a link to my blog and post my answer there.
You are welcome to use this as an opportunity to disagree with me, agree with me or just post a question with your blog name so you get a few more viewers. I'm excited about this project and hope to have lots of question in my in-box when I get home from communing with nature!
Here's the email address: tiffany@sickgirlspeaks.com
You'll get a vacation notice but I'll read them when I get home...
Thanks!!
BTW, I will be reading two of Jon Krakauer's books on my trip: "Into the Wild" and "Into Thin Air" (perfect camping books.) If I have time I will also read "Eat Pray Love"
by Elizabeth Gilbert. I'll let you know my reviews!
What's in a name?
When I chose Sick Girl Speaks for my blog title, it was the first thing that popped into my head. I had no intentions of it going much beyond this blog. I certainly never thought it would be the name of the book or the name of my business. But, guess what? Every time I came up with new names for the book, people always told me they prefered SGS. It just stuck.
And now, here I am, for better or worse, stuck with the phrase that labels me a "sick girl."
This morning, someone asked me if I felt, by using this title, I was feeding my subconscious the information that I was, indeed, defined as a sick girl. I am a strong believer in the power of words and this is a concept that I have considered. Especially lately, when I am introducing myself and following my name with Sick Girl Speaks.
As I said, I am stuck with this title for now, so my inclination is to protest and declare that this moniker does not define me. Of course, I don't have direct access to my subconscious mind and therefor can't be sure what is going on in there. However, based on my strong defensive reaction to the question posed, I would have to say it does effect me.
I have always rejected the idea that I was a sick person. This is partly why, until very recently, I did not have any chronically ill friends. I just didn't want to put myself in that box. Even when I was incredibly disabled, I was sure to clarify that my body was sick, I was not.
Ironically, I have begun applying this label to myself at the time of my life in which I am experiencing the best health in all of my 34 years. So, why now?
I think it is partly what I stated above: I never expected it to become my tag line. I also think there was a bit of humor, I said it to myself tongue and cheek.
Perhaps, though, the deeper reason, was that this was the first time I had enough distance from illness to feel comfortable calling myself sick. Perhaps, I finally feel healthy enough to be able to say those words without feeling as though that acknowledgment will cause me to drown. I feel a faint sense of sadness when I say those words. I feel sad for the girl who has been so sick for so long. Maybe there was a time to avoid those words. Maybe now is the time to embrace them and process their meaning.
The truth is, I will always be a sick girl. No matter how healthy I am, I will never forget that that is something that can change in an instant. I have experienced how quickly one can go from healthy to sick. I have seen it happen to those around me. I can never just relax into health. Does that tempt illness or does it strengthen my gratitude for today? Perhaps both?
I don't have a perfect answer for this question because I don't have a crystal ball. If I did, I might be able to say "no, I don't become sick again for 20 years so calling myself a sick girl had no impact."
All I do know, is that balance is key. My job is now to represent the sick folks out there who are currently too sick to speak out for themselves. That is when I assume the role of SGS. I am also many other things and I do other things. Maybe if I am able to keep a good balance, I will not convince my psyche that I desire to become sick again.
My work makes me very happy. It makes me feel strong and very much alive. Maybe that is enough to counteract the label. What do you think?
And now, here I am, for better or worse, stuck with the phrase that labels me a "sick girl."
This morning, someone asked me if I felt, by using this title, I was feeding my subconscious the information that I was, indeed, defined as a sick girl. I am a strong believer in the power of words and this is a concept that I have considered. Especially lately, when I am introducing myself and following my name with Sick Girl Speaks.
As I said, I am stuck with this title for now, so my inclination is to protest and declare that this moniker does not define me. Of course, I don't have direct access to my subconscious mind and therefor can't be sure what is going on in there. However, based on my strong defensive reaction to the question posed, I would have to say it does effect me.
I have always rejected the idea that I was a sick person. This is partly why, until very recently, I did not have any chronically ill friends. I just didn't want to put myself in that box. Even when I was incredibly disabled, I was sure to clarify that my body was sick, I was not.
Ironically, I have begun applying this label to myself at the time of my life in which I am experiencing the best health in all of my 34 years. So, why now?
I think it is partly what I stated above: I never expected it to become my tag line. I also think there was a bit of humor, I said it to myself tongue and cheek.
Perhaps, though, the deeper reason, was that this was the first time I had enough distance from illness to feel comfortable calling myself sick. Perhaps, I finally feel healthy enough to be able to say those words without feeling as though that acknowledgment will cause me to drown. I feel a faint sense of sadness when I say those words. I feel sad for the girl who has been so sick for so long. Maybe there was a time to avoid those words. Maybe now is the time to embrace them and process their meaning.
The truth is, I will always be a sick girl. No matter how healthy I am, I will never forget that that is something that can change in an instant. I have experienced how quickly one can go from healthy to sick. I have seen it happen to those around me. I can never just relax into health. Does that tempt illness or does it strengthen my gratitude for today? Perhaps both?
I don't have a perfect answer for this question because I don't have a crystal ball. If I did, I might be able to say "no, I don't become sick again for 20 years so calling myself a sick girl had no impact."
All I do know, is that balance is key. My job is now to represent the sick folks out there who are currently too sick to speak out for themselves. That is when I assume the role of SGS. I am also many other things and I do other things. Maybe if I am able to keep a good balance, I will not convince my psyche that I desire to become sick again.
My work makes me very happy. It makes me feel strong and very much alive. Maybe that is enough to counteract the label. What do you think?
Monday, September 24, 2007
The gift of planning
It seems that nearly every day I think of something that I can't believe I forgot to include in the book. My sigoth (significant other) keeps telling me that I can put it in the second edition which is true, if there is one. For now, I'm just gonna blog it!
I went to my transplant buddy's memorial service yesterday. As weird as this may sound, I was really looking forward to it. I hadn't had the chance to see her before she died so I was anxious to learn more about how/why she died as well as say my formal goodbyes. Out of respect for those there and my friend, I won't tell any details of the service.
What I will say, is that it reminded me of a lesson I learned long ago and forgot. Plan your own memorial. Even if you aren't sick, just do it. It doesn't have to be elaborately planned, just a few key points. Where do you want it to be held? How are people going to find out that you're sick or passed away? Make a call/email list and give it to someone you trust. Is there a certain song or kind of music you want played?
Most important: Who do you want to speak?? I have been to far too many funerals in which the person doing most of the talking barely knew the deceased. Somehow, in doing their research, they manage to pick out the wrong people to learn about the person and end up painting a picture that just doesn't match up with the person's life. I think there is a need to make that person's life seem perfect or to exaggerate the difficulties. There is nothing more that I want for my service than an accurate and balanced portrayal of all of me. I want the people in the room to remember me not sit there thinking "Did she really say that? That doesn't sound like something she would say!" I have picked my person and if Glen doesn't do it, just forget the whole thing!
Also, I think planning your service and leaving instructions on if you want cremation, burial etc. is a tremendous gift to those left behind. Often, people feel so much pressure to "do right" by the deceased and if they don't know what that person wanted it can be so painful trying to make those decisions. Leave the gift of planning to those you love!
After the memorial yesterday, my sigoth and I had a long talk about the point of memorials and funerals. He doesn't see much need to participate in such a thing. I can understand that but, for me, I feel it's important for four reasons.
1-If I'm up in heaven listening, I imagine it will make me happy to know I'd made an impact.
2-and much more importantly-It will give people that I love an chance to come together and get a 360 degree view of me. We all have parts of our lives that are separate from the other parts and, often, the only time those worlds come together is at a funeral.
3-For people who were not there at the end, it will give them an opportunity to find out how and why I died. It will bring closure for those that can't really feel it because they were not there to witness it.
4-I think it would make my parents feel good to have support.
Do you think funerals and memorials serve a purpose or are just an old custom that should be abandoned? Do you think people would be angry with Jason if he didn't show up to my funeral? Why?
I'm really interested in getting more opinions on this topic. Please leave me comments and give me your perspective on these things!
I went to my transplant buddy's memorial service yesterday. As weird as this may sound, I was really looking forward to it. I hadn't had the chance to see her before she died so I was anxious to learn more about how/why she died as well as say my formal goodbyes. Out of respect for those there and my friend, I won't tell any details of the service.
What I will say, is that it reminded me of a lesson I learned long ago and forgot. Plan your own memorial. Even if you aren't sick, just do it. It doesn't have to be elaborately planned, just a few key points. Where do you want it to be held? How are people going to find out that you're sick or passed away? Make a call/email list and give it to someone you trust. Is there a certain song or kind of music you want played?
Most important: Who do you want to speak?? I have been to far too many funerals in which the person doing most of the talking barely knew the deceased. Somehow, in doing their research, they manage to pick out the wrong people to learn about the person and end up painting a picture that just doesn't match up with the person's life. I think there is a need to make that person's life seem perfect or to exaggerate the difficulties. There is nothing more that I want for my service than an accurate and balanced portrayal of all of me. I want the people in the room to remember me not sit there thinking "Did she really say that? That doesn't sound like something she would say!" I have picked my person and if Glen doesn't do it, just forget the whole thing!
Also, I think planning your service and leaving instructions on if you want cremation, burial etc. is a tremendous gift to those left behind. Often, people feel so much pressure to "do right" by the deceased and if they don't know what that person wanted it can be so painful trying to make those decisions. Leave the gift of planning to those you love!
After the memorial yesterday, my sigoth and I had a long talk about the point of memorials and funerals. He doesn't see much need to participate in such a thing. I can understand that but, for me, I feel it's important for four reasons.
1-If I'm up in heaven listening, I imagine it will make me happy to know I'd made an impact.
2-and much more importantly-It will give people that I love an chance to come together and get a 360 degree view of me. We all have parts of our lives that are separate from the other parts and, often, the only time those worlds come together is at a funeral.
3-For people who were not there at the end, it will give them an opportunity to find out how and why I died. It will bring closure for those that can't really feel it because they were not there to witness it.
4-I think it would make my parents feel good to have support.
Do you think funerals and memorials serve a purpose or are just an old custom that should be abandoned? Do you think people would be angry with Jason if he didn't show up to my funeral? Why?
I'm really interested in getting more opinions on this topic. Please leave me comments and give me your perspective on these things!
Saturday, September 22, 2007
Warning: Uncomfortable Material Ahead!
I'm sorry...I'm gonna do it...I'm gonna talk about that thing nobody wants to talk about...you ready? I am in the throws of one of my major dips into the dark pool of PMS. Was that so bad? Okay, perhaps it was.
I never wanted to think or talk about my PMS...I guess I still don't want to think or talk about it. In the past, I was one of those typical women that could freak out once a month but GOD FORBID somebody suggest it was PMS...especially a man! Whoa. As for men, I imagine the three letters PMS fill them with dread, fear and confusion. Trust me, guys, you don't get it. Trust. Me. I have known many wonderful men who have tried but no. You don't. Stop trying.
For most of my life, my PMS was minimal. A few days of tears with no good reason, sure, but it wasn't every month and it usually passed pretty quickly. After my second transplant, however, my PMS became brutal. (I can only imagine it has something to do with the meds I take and how they interact with my hormones.) About once a month, I would have two days of depression and suicidal thoughts. Yes, that's right, suicidal thoughts. I tried taking some anti-depressants to help get through the rough patch and they helped. However, they made me so nauseous I ended up spending the day on the couch anyway. Eventually, I went cold turkey and found that, the farther out from transplant I got, the less intrusive my PMS became.
I pretty much had put the whole stupid issue out of my mind by the time I met my sigoth (significant other). We had only been together about six months when he mentioned to me that he noticed a pattern in my behavior. Once a month, for about two days, I would talk endlessly about quitting my job to do something more meaningful. During that time, I would also declare that I was coming down with something and should make an appointment to see the docs. Now, Jason is smart. He didn't mention this observation when I was in the middle of a tirade. He mentioned this when I was calm and sensible. I thought it was an interesting idea but not something I gave much thought to.
Over the next few months, Jason started tracking my moods without me knowing. When he had enough data, he let me in on his research. It was astounding. My PMS was quite consistent in its manifestations but just subtle enough that I most likely would have never noticed. My most depressive time happened a week before I began my period and so, when I did start, I never connected the mood with the bodily event. I started paying attention. Jason continued tracking. It got to the point that I would call Jason when I was feeling low and ask him if this was part of my cycle. Usually, it was, and he often followed the confirmation by predicting the future; "And on Thursday and Friday you'll want to quit your job." Sure enough, he would be right.
The result of this understanding was an ability to recognize when I was feeling feelings and when I was feeling hormones. I still feel blue or agitated once a month but I'm able to feel it without acting upon it. In fact, during those two days, acting upon my emotions is strictly prohibited.
So here I am today, with all this warning and PMS experience, and I still feel like I'd prefer to jump out of my skin.
Sometimes it's bad. Today it's bad. I don't want to speak. I don't want to do anything but I don't want to lay around either. I want to be productive but nothing I try to do works out. I have tried sitting inside and I have tried sitting outside. It doesn't matter. I can actually feel the part of my brain that is sending out the gloom and doom signals. I can actually hear the part of me that wants to be happy and I can feel it for a fleeting moment. I visualize taking a lasso and wrangling the PMS part of my brain right out my left ear. I visualize scooping it out with an ice-cream scoop. I feel trapped in my own mind, scratching to get outside this prison that I know doesn't really exist. Nonetheless, I can almost feel my fingernails scrape against the concrete walls.
I know this is PMS but it doesn't stop me from searching my mind for something to alleviate the emotional discomfort. "What can I do? What can I do?" I keep saying in my head and I have to remind myself over and over to just relax and wait for it to pass. At least I know what's going on. At least I'm not trying to fix something in my life that is not actually broken. I'm am grateful for that. Even still, I wish I could just sleep until it's over.
There. I did it. I told you about my PMS and we all survived. There's one more thing to be grateful for...
Note: Jason has always handled this issue with great respect for my feelings. He knows that, no matter the cause, the emotions I have are overwhelming. He doesn't try to argue with me or tell me that I'm overreacting. When I'm in the middle of it, he simply listens to me and supports me. When I calm down, days later, we talk about the role of PMS in my tirades. Because Jason tracks my cycle, he knows what is coming ahead of time. He braces himself and does everything he can to be helpful. Jason is very smart. And sweet. I'm grateful for him too.
I never wanted to think or talk about my PMS...I guess I still don't want to think or talk about it. In the past, I was one of those typical women that could freak out once a month but GOD FORBID somebody suggest it was PMS...especially a man! Whoa. As for men, I imagine the three letters PMS fill them with dread, fear and confusion. Trust me, guys, you don't get it. Trust. Me. I have known many wonderful men who have tried but no. You don't. Stop trying.
For most of my life, my PMS was minimal. A few days of tears with no good reason, sure, but it wasn't every month and it usually passed pretty quickly. After my second transplant, however, my PMS became brutal. (I can only imagine it has something to do with the meds I take and how they interact with my hormones.) About once a month, I would have two days of depression and suicidal thoughts. Yes, that's right, suicidal thoughts. I tried taking some anti-depressants to help get through the rough patch and they helped. However, they made me so nauseous I ended up spending the day on the couch anyway. Eventually, I went cold turkey and found that, the farther out from transplant I got, the less intrusive my PMS became.
I pretty much had put the whole stupid issue out of my mind by the time I met my sigoth (significant other). We had only been together about six months when he mentioned to me that he noticed a pattern in my behavior. Once a month, for about two days, I would talk endlessly about quitting my job to do something more meaningful. During that time, I would also declare that I was coming down with something and should make an appointment to see the docs. Now, Jason is smart. He didn't mention this observation when I was in the middle of a tirade. He mentioned this when I was calm and sensible. I thought it was an interesting idea but not something I gave much thought to.
Over the next few months, Jason started tracking my moods without me knowing. When he had enough data, he let me in on his research. It was astounding. My PMS was quite consistent in its manifestations but just subtle enough that I most likely would have never noticed. My most depressive time happened a week before I began my period and so, when I did start, I never connected the mood with the bodily event. I started paying attention. Jason continued tracking. It got to the point that I would call Jason when I was feeling low and ask him if this was part of my cycle. Usually, it was, and he often followed the confirmation by predicting the future; "And on Thursday and Friday you'll want to quit your job." Sure enough, he would be right.
The result of this understanding was an ability to recognize when I was feeling feelings and when I was feeling hormones. I still feel blue or agitated once a month but I'm able to feel it without acting upon it. In fact, during those two days, acting upon my emotions is strictly prohibited.
So here I am today, with all this warning and PMS experience, and I still feel like I'd prefer to jump out of my skin.
Sometimes it's bad. Today it's bad. I don't want to speak. I don't want to do anything but I don't want to lay around either. I want to be productive but nothing I try to do works out. I have tried sitting inside and I have tried sitting outside. It doesn't matter. I can actually feel the part of my brain that is sending out the gloom and doom signals. I can actually hear the part of me that wants to be happy and I can feel it for a fleeting moment. I visualize taking a lasso and wrangling the PMS part of my brain right out my left ear. I visualize scooping it out with an ice-cream scoop. I feel trapped in my own mind, scratching to get outside this prison that I know doesn't really exist. Nonetheless, I can almost feel my fingernails scrape against the concrete walls.
I know this is PMS but it doesn't stop me from searching my mind for something to alleviate the emotional discomfort. "What can I do? What can I do?" I keep saying in my head and I have to remind myself over and over to just relax and wait for it to pass. At least I know what's going on. At least I'm not trying to fix something in my life that is not actually broken. I'm am grateful for that. Even still, I wish I could just sleep until it's over.
There. I did it. I told you about my PMS and we all survived. There's one more thing to be grateful for...
Note: Jason has always handled this issue with great respect for my feelings. He knows that, no matter the cause, the emotions I have are overwhelming. He doesn't try to argue with me or tell me that I'm overreacting. When I'm in the middle of it, he simply listens to me and supports me. When I calm down, days later, we talk about the role of PMS in my tirades. Because Jason tracks my cycle, he knows what is coming ahead of time. He braces himself and does everything he can to be helpful. Jason is very smart. And sweet. I'm grateful for him too.
Thursday, September 20, 2007
Radical ideas
I find myself between a rock and a hard place. On one side, I have the Western medical model that dictates a person must "fight" for life, at all costs. On the other side, I have people from various spiritual philosophies telling me that illness is something I can transform and be free from if I think or pray correctly.
How about the other option nobody ever mentions? How about accepting where you are no matter what? Yes, I will work to have the best quality of life possible, but when I'm ready to die, I will find peace in ending the "fight." No matter how hard I pray or think, nothing will alter my genes. Does it make me a failure because I have not been able to heal myself? How about the possibility that my genetic illness and subsequent suffering was part of the plan, a gift not a curse? Isn't it possible God knew what he was doing when he gave me this disease?
It has taken me over 30 years to figure out that my personal beliefs surrounding the beauty of my illness are quite a radical.
Here's the deal: I wrote this post and I was venting my frustrations while keeping the fuel for my fire to myself. I don't know why I would do that: the only person who my rants would hurt is too egotistical to care what I have to say anyway.
I have been trying to promote my workshop, "Ten Opportunities of Illness", and , in doing so, I have been calling lots of churches and other spiritual organizations in North Carolina. I called a church in Charlotte yesterday and found my self talking to the female Reverend. Before I could finish my sentence summarizing the workshop, she was on me. She objected to the use of the words "chronic illness" and said that there is no such thing as illness. She told me that when I use words like that I am telling God that I accept illness into my life. She went on and on (in a very judgemental and nasty tone) and basically told me that I wouldn't have illness if I understood the true nature of God and did not allow illness into my life. Oooooo. She made me so mad. I kept my thoughts to myself because it would be inappropriate in that context to argue with her.
Here's what I would have liked to have said...well, after the profanities...
If I am born with a genetic illness but there is no such thing as illness where God is concerned, who made me then?
How do you think the people in your church feel when they come to you hoping to find healing but their illness does not go away? I imagine you have stories you could tell me about the people who have defied the predictions of their doctors and walked away from horrible illness miraculously healed. For each one of those, how many do you think walk out the back door of your church ashamed, sick and more alone than ever before? You don't tell their stories because it would not support your bullshit sermons. You don't tell their stories because they needed compassion and you gave them judgement and they are still sick. You don't tell their stories because they failed in your eyes and they have left you long ago.
Ah. I feel better now. That's the real reason for my post. I'm tempted to say the name of the church but I'll have to think more about whether or not I want to do that.
It has taken me over 30 years to figure out that my personal beliefs surrounding the beauty of my illness are quite a radical.
Here's the deal: I wrote this post and I was venting my frustrations while keeping the fuel for my fire to myself. I don't know why I would do that: the only person who my rants would hurt is too egotistical to care what I have to say anyway.
I have been trying to promote my workshop, "Ten Opportunities of Illness", and , in doing so, I have been calling lots of churches and other spiritual organizations in North Carolina. I called a church in Charlotte yesterday and found my self talking to the female Reverend. Before I could finish my sentence summarizing the workshop, she was on me. She objected to the use of the words "chronic illness" and said that there is no such thing as illness. She told me that when I use words like that I am telling God that I accept illness into my life. She went on and on (in a very judgemental and nasty tone) and basically told me that I wouldn't have illness if I understood the true nature of God and did not allow illness into my life. Oooooo. She made me so mad. I kept my thoughts to myself because it would be inappropriate in that context to argue with her.
Here's what I would have liked to have said...well, after the profanities...
If I am born with a genetic illness but there is no such thing as illness where God is concerned, who made me then?
How do you think the people in your church feel when they come to you hoping to find healing but their illness does not go away? I imagine you have stories you could tell me about the people who have defied the predictions of their doctors and walked away from horrible illness miraculously healed. For each one of those, how many do you think walk out the back door of your church ashamed, sick and more alone than ever before? You don't tell their stories because it would not support your bullshit sermons. You don't tell their stories because they needed compassion and you gave them judgement and they are still sick. You don't tell their stories because they failed in your eyes and they have left you long ago.
Ah. I feel better now. That's the real reason for my post. I'm tempted to say the name of the church but I'll have to think more about whether or not I want to do that.
Sunday, September 16, 2007
I just learned that one of my beloved transplant buddies died a few days ago.
She was an amazing woman--she was an inspiration to me in many ways. I met her before my first transplant and was in awe. At that time she was ten years post-transplant and studying to be a doctor. Her example was one that I clung to. Debbie proved that life after transplant could be full and worthwhile.
Over the years, Debbie and I would run into each other here and there. After awhile we became friends. We had lunches together and talked on the phone. We were a good compliment to each other--she had strengths where I had weaknesses and vice-versa.
Debbie became a shrink and had a very successful private practice. Man, do I envy her achievements.
I'm sad to say that I hadn't spoken to Debbie in a few months. Last we spoke, she was so excited because she just bought an amazing house. She had been battling cancer but it seemed under control. We lost touch but it didn't bother me much--I knew we would reconnect soon and it would be like we hadn't missed a beat.
I had no idea that Debbie's cancer had gotten worse. I had no idea that she wasn't returning my emails because she was very ill. I wish I had pursued it more. I wish I had been able to say goodbye.
It's strange how, even though death is so close to me and those like me, when it happens it still seems like a surprise. I guess when you have been so close to the end and come back over and over, you begin to think you will always rally. The idea of Debbie dying never seemed possible to me...it still feels untrue.
Debbie lived 16 years with her donor lungs--quite an amazing feat! She was an inspiration to me when I needed someone to show me how life post-transplant could be dynamic and valuable. She was a friend with much wisdom and kindness and an openness to take what was offered to her. I will miss her. I will never stop being inspired by her. Thank you, Debbie.
She was an amazing woman--she was an inspiration to me in many ways. I met her before my first transplant and was in awe. At that time she was ten years post-transplant and studying to be a doctor. Her example was one that I clung to. Debbie proved that life after transplant could be full and worthwhile.
Over the years, Debbie and I would run into each other here and there. After awhile we became friends. We had lunches together and talked on the phone. We were a good compliment to each other--she had strengths where I had weaknesses and vice-versa.
Debbie became a shrink and had a very successful private practice. Man, do I envy her achievements.
I'm sad to say that I hadn't spoken to Debbie in a few months. Last we spoke, she was so excited because she just bought an amazing house. She had been battling cancer but it seemed under control. We lost touch but it didn't bother me much--I knew we would reconnect soon and it would be like we hadn't missed a beat.
I had no idea that Debbie's cancer had gotten worse. I had no idea that she wasn't returning my emails because she was very ill. I wish I had pursued it more. I wish I had been able to say goodbye.
It's strange how, even though death is so close to me and those like me, when it happens it still seems like a surprise. I guess when you have been so close to the end and come back over and over, you begin to think you will always rally. The idea of Debbie dying never seemed possible to me...it still feels untrue.
Debbie lived 16 years with her donor lungs--quite an amazing feat! She was an inspiration to me when I needed someone to show me how life post-transplant could be dynamic and valuable. She was a friend with much wisdom and kindness and an openness to take what was offered to her. I will miss her. I will never stop being inspired by her. Thank you, Debbie.
Tuesday, September 11, 2007
Something to Push Against
This started off as a blog entry but ended up something entirely different! I'm thinking I would like to use this as a talk at CF fund raisers and such...Wuddya think?
I don't know about you, but I'm a person who needs something to push against. At work, I need a deadline or I won't get it done. In a game, I need a competitor or I won't care enough to play. In conversation, I most enjoy when I can assume the role of devil's advocate.
Perhaps it's this mentality that makes it possible for cystic fibrosis to be such a perfect companion for me. At every turn, I have something to push against--even if it's just to live my life to the fullest before the clock runs out.
I have been lucky in so many ways. One of those is that I never really went through the "why me?"s for more than a few minutes. I guess, deep down, I always knew the answer to "why me." From my earliest childhood memories, I knew CF was a part of my life for a reason. I won't say I chose it, that's a bit too strong, but I understood that it had a purpose and I understood it was there to teach me.
(Perhaps, before we are born, we do get a chance to choose our teachers. Perhaps, I did choose CF. I don't know.)
I don't mean to say that all of my lessons were easy ones. As a child it was difficult to not be able to run like my peers...gym class was a nightmare. Being so sick so often was not something I faced with glee, certainly. Being young and facing mortality, I mean really facing mortality, was heartbreaking.
But out of all those difficult things emerged qualities of myself of which I am most proud.
In my younger years, I was set apart from my peers in many ways, all of them physical. In a society that is focused on sports and beauty, I didn't measure up. I tried to play sports in school, mostly those forced upon me as I mentioned above in dreaded gym class. I was clumsy and struggled for air. (I imagine I'm clumsy naturally, but I'm just going to chalk that up to CF, okay?) My classmates didn't understand what was wrong with me and they would ridicule my performance.
It didn't take very long for me to find a sport that I could do and really enjoyed--at six I began horseback riding and did that until graduation from high school. With that true love waiting for me after school, it was easier to handle my inabilities on the soccer, basketball and, oh god, dodge ball field. Who invented dodge ball anyway? They really should have kept that bright idea to themselves!
As for my appearance, in middle school I was often teased for being so skinny. Not to mention, I had a really strange hairdo, wore an unfortunate selection of clothes and
smeared bold lines of gray and fuchsia across my eyelids. Even still, the thing that the girls really seemed to hone in on was my weight. "Tiffany Toothpick" was my nickname and I was often the target for the popular crowd's emotional sport. I won't pretend that wasn't a difficult time for me. The end result, however, was that I didn't fall in line with what "all the kids were doing." Their cruelty was my fuel to figure out who I was as an individual. Had I been a part of that crowd, I shudder to think how I would have turned out.
As for being sick so often--that taught me many profound lessons. Live in the moment is one of those. Nothing is permanent is another. But, perhaps my favorite lesson is one that I stumbled upon when I was in college.
I was attending North Carolina School of the Arts in the actor training program. We had many unusual classes during the day. A favorite of mine, and many of the rest of my small class, was an acting course taught by a Turkish woman named Cheedem. Before every class, Cheedem turned off all of the lights in her room and left us alone for about ten minutes. During that time, we all sat on the floor in a circle and meditated. The purpose was to ground us and help connect us before we began working together. Usually, Cheedem would come in and watch us for a minute or two before quietly whispering that it was time to "come back" and get in our seats. The people in my class cherished this time of stillness and peace.
On day, we did our meditation, just like every other day, and Cheedem came in after about ten minutes and sat down, just like usual. On this day, however, she did not sweetly whisper that it was time to get up. Instead, she screamed and clapped and yelled "Get up, Get up, Now Now Now!" People flew up off of the floor, wild eyed and confused. When everyone was standing, she barked "Do what you feel! Do what you feel!" Now, keep in mind, these are drama students--the reactions were oh, so dramatic! A few people stormed out of the room. One woman screamed in Cheedem's face. One guy cried. A lot of people beat the wall. My reaction? I walked back to the place where I had been sitting and sat back down.
For weeks, I thought about that exercise. I felt dull and uninspired because my reaction had been so much less "dynamic" than those of my classmates. One day, Cheedem bumped into me in the hallway and pulled me to the side. She told me that she was puzzled by the reactions of my class and that she was startled by the level of anger and confusion they displayed. She had thought most people would do as I did. After thinking about it more, Cheedem said she realized that it made perfect sense. After all I had been through in my life, I had become accustomed to handling unexpected disruptions and had the ability to recover from them in a way my peers did not. Cheedem touched on something that day that I carry with me always. I am resilient. I will fall, but I pop up like a spring! This resiliency is something I am so proud of. CF taught me that in a profound way.
Finally, I mentioned facing my own mortality. Not in a theoretical kind of way--in a real, no kidding kind of way. There are so many things I learned from that. I had to write a book just to list them all! (Don't forget to get yourself a copy of Sick Girl Speaks! by the way!) Perhaps the most important of all of those lessons was the discovery of who I truly am. When I used to hear people say that, I assumed they meant that they were nice, or smart, or loving or whatever. What I found was a bit deeper than that.
The first part of facing my mortality was going through what I call the Illness Identity Crisis. Essentially, I had to figure out who I was not. I was not an actress--I gave that up when I became very ill. I was not funny--my sense of humor dried up the sicker I got. I was not spiritual--God and I had a falling out for awhile. Who was I if I was not all of these things? I had no idea and I felt very lost. I had no identity, no purpose.
As I became sicker, it began to become clear. It was like the pealing of an onion. Finally, when all of the layers were gone, I was left with the core. I found my core. I can't tell you what that is, unfortunately. There are no adjectives to describe it. There are no duties to define it. All I know is that my core is the permanent part of me that is never sick, never tired and never scared. This depth of knowledge about myself is a gift I carry with me all the time. CF gave me that gift, and so many others.
Today, I am 34. I am healthy and happy. That doesn't change the fact that I need something to push against. I am working to make a living as a public speaker and educate patients and doctors about all that I have learned in my career as a patient. Every day, I push against CF by saying "I will live today so that, when it is time to say my final goodbye, I will be proud of the life I've lived."
I don't ask why me. I am simply humbled by the wisdom of having CF as my life's companion. I have something to push against. While I'm not always happy about it, I can not deny, CF is my greatest teacher.
I don't know about you, but I'm a person who needs something to push against. At work, I need a deadline or I won't get it done. In a game, I need a competitor or I won't care enough to play. In conversation, I most enjoy when I can assume the role of devil's advocate.
Perhaps it's this mentality that makes it possible for cystic fibrosis to be such a perfect companion for me. At every turn, I have something to push against--even if it's just to live my life to the fullest before the clock runs out.
I have been lucky in so many ways. One of those is that I never really went through the "why me?"s for more than a few minutes. I guess, deep down, I always knew the answer to "why me." From my earliest childhood memories, I knew CF was a part of my life for a reason. I won't say I chose it, that's a bit too strong, but I understood that it had a purpose and I understood it was there to teach me.
(Perhaps, before we are born, we do get a chance to choose our teachers. Perhaps, I did choose CF. I don't know.)
I don't mean to say that all of my lessons were easy ones. As a child it was difficult to not be able to run like my peers...gym class was a nightmare. Being so sick so often was not something I faced with glee, certainly. Being young and facing mortality, I mean really facing mortality, was heartbreaking.
But out of all those difficult things emerged qualities of myself of which I am most proud.
In my younger years, I was set apart from my peers in many ways, all of them physical. In a society that is focused on sports and beauty, I didn't measure up. I tried to play sports in school, mostly those forced upon me as I mentioned above in dreaded gym class. I was clumsy and struggled for air. (I imagine I'm clumsy naturally, but I'm just going to chalk that up to CF, okay?) My classmates didn't understand what was wrong with me and they would ridicule my performance.
It didn't take very long for me to find a sport that I could do and really enjoyed--at six I began horseback riding and did that until graduation from high school. With that true love waiting for me after school, it was easier to handle my inabilities on the soccer, basketball and, oh god, dodge ball field. Who invented dodge ball anyway? They really should have kept that bright idea to themselves!
As for my appearance, in middle school I was often teased for being so skinny. Not to mention, I had a really strange hairdo, wore an unfortunate selection of clothes and
smeared bold lines of gray and fuchsia across my eyelids. Even still, the thing that the girls really seemed to hone in on was my weight. "Tiffany Toothpick" was my nickname and I was often the target for the popular crowd's emotional sport. I won't pretend that wasn't a difficult time for me. The end result, however, was that I didn't fall in line with what "all the kids were doing." Their cruelty was my fuel to figure out who I was as an individual. Had I been a part of that crowd, I shudder to think how I would have turned out.
As for being sick so often--that taught me many profound lessons. Live in the moment is one of those. Nothing is permanent is another. But, perhaps my favorite lesson is one that I stumbled upon when I was in college.
I was attending North Carolina School of the Arts in the actor training program. We had many unusual classes during the day. A favorite of mine, and many of the rest of my small class, was an acting course taught by a Turkish woman named Cheedem. Before every class, Cheedem turned off all of the lights in her room and left us alone for about ten minutes. During that time, we all sat on the floor in a circle and meditated. The purpose was to ground us and help connect us before we began working together. Usually, Cheedem would come in and watch us for a minute or two before quietly whispering that it was time to "come back" and get in our seats. The people in my class cherished this time of stillness and peace.
On day, we did our meditation, just like every other day, and Cheedem came in after about ten minutes and sat down, just like usual. On this day, however, she did not sweetly whisper that it was time to get up. Instead, she screamed and clapped and yelled "Get up, Get up, Now Now Now!" People flew up off of the floor, wild eyed and confused. When everyone was standing, she barked "Do what you feel! Do what you feel!" Now, keep in mind, these are drama students--the reactions were oh, so dramatic! A few people stormed out of the room. One woman screamed in Cheedem's face. One guy cried. A lot of people beat the wall. My reaction? I walked back to the place where I had been sitting and sat back down.
For weeks, I thought about that exercise. I felt dull and uninspired because my reaction had been so much less "dynamic" than those of my classmates. One day, Cheedem bumped into me in the hallway and pulled me to the side. She told me that she was puzzled by the reactions of my class and that she was startled by the level of anger and confusion they displayed. She had thought most people would do as I did. After thinking about it more, Cheedem said she realized that it made perfect sense. After all I had been through in my life, I had become accustomed to handling unexpected disruptions and had the ability to recover from them in a way my peers did not. Cheedem touched on something that day that I carry with me always. I am resilient. I will fall, but I pop up like a spring! This resiliency is something I am so proud of. CF taught me that in a profound way.
Finally, I mentioned facing my own mortality. Not in a theoretical kind of way--in a real, no kidding kind of way. There are so many things I learned from that. I had to write a book just to list them all! (Don't forget to get yourself a copy of Sick Girl Speaks! by the way!) Perhaps the most important of all of those lessons was the discovery of who I truly am. When I used to hear people say that, I assumed they meant that they were nice, or smart, or loving or whatever. What I found was a bit deeper than that.
The first part of facing my mortality was going through what I call the Illness Identity Crisis. Essentially, I had to figure out who I was not. I was not an actress--I gave that up when I became very ill. I was not funny--my sense of humor dried up the sicker I got. I was not spiritual--God and I had a falling out for awhile. Who was I if I was not all of these things? I had no idea and I felt very lost. I had no identity, no purpose.
As I became sicker, it began to become clear. It was like the pealing of an onion. Finally, when all of the layers were gone, I was left with the core. I found my core. I can't tell you what that is, unfortunately. There are no adjectives to describe it. There are no duties to define it. All I know is that my core is the permanent part of me that is never sick, never tired and never scared. This depth of knowledge about myself is a gift I carry with me all the time. CF gave me that gift, and so many others.
Today, I am 34. I am healthy and happy. That doesn't change the fact that I need something to push against. I am working to make a living as a public speaker and educate patients and doctors about all that I have learned in my career as a patient. Every day, I push against CF by saying "I will live today so that, when it is time to say my final goodbye, I will be proud of the life I've lived."
I don't ask why me. I am simply humbled by the wisdom of having CF as my life's companion. I have something to push against. While I'm not always happy about it, I can not deny, CF is my greatest teacher.
Sunday, September 9, 2007
Website Bonanza
I've spent all weekend creating a website...whew! I'm tired.
I have no idea what I'm doing so go easy on me!
Any suggestions or comments would be welcome!
www.sickgirlspeaks.com
I have no idea what I'm doing so go easy on me!
Any suggestions or comments would be welcome!
www.sickgirlspeaks.com
Friday, September 7, 2007
Out with a bang!
This has been a topsy-turvy week. I have been overwhelmed with the list of things I need to do to get my name out there and start booking some gigs.
I had a meeting with someone about doing a CF workshop and realized that I won't be able to do workshops for my fellow genetically challenged peeps at all! There are strict rules about allowing CFers in a room together as they may pass certain bacteria to each other. That sincerely makes me sad and, on a selfish note, ruins lots of plans I had to book workshops with the big CF organizations. I was feeling pretty discouraged yesterday.
Today, however, I booked a speaking engagement with the hospital--I'll be talking to hospital chaplains in residency. So cool. That made me feel good.
It's the end of week one and the calender is beginning to fill up. I have Psychiatry Grand Rounds and a Pain forum this month. Next month I have the Chaplain talk. Woven throughout, I have 3 really cool grant proposals I'm a part of that hopefully will get funded. I also have a community pet memorial service I'm planning for November.
I'm starting to see that the bulk of my "gigs" have been within the medical/caregiver community. I think I'll focus more energy in that direction next week.
All in all, this has been a scary week that ended on an exciting BANG!
Can't wait to see what's coming next week!
I had a meeting with someone about doing a CF workshop and realized that I won't be able to do workshops for my fellow genetically challenged peeps at all! There are strict rules about allowing CFers in a room together as they may pass certain bacteria to each other. That sincerely makes me sad and, on a selfish note, ruins lots of plans I had to book workshops with the big CF organizations. I was feeling pretty discouraged yesterday.
Today, however, I booked a speaking engagement with the hospital--I'll be talking to hospital chaplains in residency. So cool. That made me feel good.
It's the end of week one and the calender is beginning to fill up. I have Psychiatry Grand Rounds and a Pain forum this month. Next month I have the Chaplain talk. Woven throughout, I have 3 really cool grant proposals I'm a part of that hopefully will get funded. I also have a community pet memorial service I'm planning for November.
I'm starting to see that the bulk of my "gigs" have been within the medical/caregiver community. I think I'll focus more energy in that direction next week.
All in all, this has been a scary week that ended on an exciting BANG!
Can't wait to see what's coming next week!
Wednesday, September 5, 2007
Potential vs. Reality
The last few days have been, in a way, monumental. I submitted my final manuscript for printing and now have the freedom of no job. I have been anxiously anticipating this day for months.
Why, then, have I been so blaaah? People have been asking how I feel about the book and my response has been less than enthusiastic. I can hear the confusion and disappointment in their voice. I'm confused too. Shouldn't I be over the moon?
It dawned on me that what's bothering me has to do with potential vs. reality. When I was writing the book I was excited by its potential. Now, off in cyberspace waiting to print, it is a reality. It's done. Over. Nothing else to tweak. The creative rush is gone and all I'm left with is the angst of "Is this thing any good?"
The same goes for quitting my job. I couldn't wait for my last day and now...well, I have a lot of work to do and it's all on me. I've gotta figure this thing out so I can make some money! The stakes are higher without any money coming in from the government and, quite frankly, it's scary! I'm not fantasizing about all the things I will do when I have the time--now I have to do them! Reality is setting in and its kinda heavy.
I don't mean to be a whiny baby. I know there are many many people out there who would like this kind of opportunity! I am grateful. I promise.
I'm also just a bit thrown by my own feelings. Like nearly every big event in my life, it isn't what I expected.
I think I'll feel better once I get in the groove. It's just all very new right now.
Why, then, have I been so blaaah? People have been asking how I feel about the book and my response has been less than enthusiastic. I can hear the confusion and disappointment in their voice. I'm confused too. Shouldn't I be over the moon?
It dawned on me that what's bothering me has to do with potential vs. reality. When I was writing the book I was excited by its potential. Now, off in cyberspace waiting to print, it is a reality. It's done. Over. Nothing else to tweak. The creative rush is gone and all I'm left with is the angst of "Is this thing any good?"
The same goes for quitting my job. I couldn't wait for my last day and now...well, I have a lot of work to do and it's all on me. I've gotta figure this thing out so I can make some money! The stakes are higher without any money coming in from the government and, quite frankly, it's scary! I'm not fantasizing about all the things I will do when I have the time--now I have to do them! Reality is setting in and its kinda heavy.
I don't mean to be a whiny baby. I know there are many many people out there who would like this kind of opportunity! I am grateful. I promise.
I'm also just a bit thrown by my own feelings. Like nearly every big event in my life, it isn't what I expected.
I think I'll feel better once I get in the groove. It's just all very new right now.
Tuesday, September 4, 2007
Wooosh!
And there it goes. With one click of a mouse off goes my manuscript to become a real book. (Not unlike Pinocchio going off to become a real boy.) It feels good.
Still having the major doubt mosquito problem, but, the good news is there isn't really much to be done about it now. All I can obsess over now is my marketing materials...which I will start doing soon.
Right now, I need rest. Preparing your future makes you sleepy.
Still having the major doubt mosquito problem, but, the good news is there isn't really much to be done about it now. All I can obsess over now is my marketing materials...which I will start doing soon.
Right now, I need rest. Preparing your future makes you sleepy.
Monday, September 3, 2007
Anybody have any DEET?
Well, while the rest of the country was out eating BBQ and wearing white for the last time, I was diligently laboring (get it? labor day) to finish my book. I have set the deadline for tomorrow and it looks like I'll make it.
I can barely see straight right now so I don't have much to say about being excited, etc.
The self publishing thing is turning out to be a little more complicated than I thought. It's also a bit scary because I am responsible for properly formating the text. If I made a mistake, there's no one who will fix it. If there's a significant mistake, like a page break missing or something, my hard work will turn out looking goofy and unprofessional.
I still think I've made the best choice in self-publishing but it is a little intimidating to have so much responsibility in how the final product turns out.
I've pretty much gotten over my freak out/inferiority complex about Crazy Sexy Cancer. I think there's room for the both of us. Plus, my mission is more public speaking and hers seems more closely tied to her movie. She's awesome and I'm awesome in a different way.
That said, I am in a major doubt cycle. I go through these all the time, this is nothing new. I have come to understand and accept that I go through periods in which I think my work is boring, trite, poorly written...well, really the list could go on and on.
Usually this happens before I give a big talk so I guess it makes sense that I would be going through it the night before I send out my first book to be printed. All I know to do is keep walking forward and get the job done, despite all those circling doubts above my head. They really are like loud mosquitoes in my ear! Anybody have any DEET?
Is this kind of doubt something most of us experience when we're being creative or do I just have serious self-esteem issues?
If you have any tips on how to deal with the doubt mosquitoes, please share!!
I can barely see straight right now so I don't have much to say about being excited, etc.
The self publishing thing is turning out to be a little more complicated than I thought. It's also a bit scary because I am responsible for properly formating the text. If I made a mistake, there's no one who will fix it. If there's a significant mistake, like a page break missing or something, my hard work will turn out looking goofy and unprofessional.
I still think I've made the best choice in self-publishing but it is a little intimidating to have so much responsibility in how the final product turns out.
I've pretty much gotten over my freak out/inferiority complex about Crazy Sexy Cancer. I think there's room for the both of us. Plus, my mission is more public speaking and hers seems more closely tied to her movie. She's awesome and I'm awesome in a different way.
That said, I am in a major doubt cycle. I go through these all the time, this is nothing new. I have come to understand and accept that I go through periods in which I think my work is boring, trite, poorly written...well, really the list could go on and on.
Usually this happens before I give a big talk so I guess it makes sense that I would be going through it the night before I send out my first book to be printed. All I know to do is keep walking forward and get the job done, despite all those circling doubts above my head. They really are like loud mosquitoes in my ear! Anybody have any DEET?
Is this kind of doubt something most of us experience when we're being creative or do I just have serious self-esteem issues?
If you have any tips on how to deal with the doubt mosquitoes, please share!!
Friday, August 31, 2007
Jealous, Scared and Inspired
Holy Cow. Have you seen this girl?
crazy sexy cancer blog
crazy sexy cancer website
Unbelievable. Awesome. Inspiring. Daring. Clever. Brilliant.
Oh, and...boy, am I freaking out.
It's amazing how I can be simultaneously threatened and inspired by this person and her work.
Why am I threatened? Well, to read some of her stuff you'd think one of us stole it from the other. Some of our sentences are nearly identical. Oh yea, and she got it out there way bigger and way faster than me!
That taps into a huge underlying lifelong fear of mine--what if I show up to the party too late and all the good food is gone and all the guest have already gone home? I feel like she's already done what I wanted to do--and her dress is much prettier than mine--so part of me wants to just turn around and go home before I even get to the party.
Why am I inspired? That girl is brilliant. I love her message and the way she tells it. While we have a lot of similarities, we also have a lot of differences. After my ego recovered from watching her amazing movie, I realized that there is room for my message. I also realized that I wanted to make it a stronger one. Her boldness and honesty has inspired me to go to the next level.
I know my reaction was petty. I don't mean to say that I wasn't happy for Kris Carr and all of her success. I really, truly am. She deserves all of the success she can hold onto.
As for me, I trudge on! My last day of work is today. I am chomping at the bit to get started at marketing Sick Girl Speaks! full time. I have a few irons in the fire and hope to have many more very soon.
After seeing Kris Carr's work, I woke up this morning with some clarity. Part of what has bothered me about mt title and my book is that it doesn't have a clear, underlying message. Every book needs that one thing that is the thru-line for every sub-message. It finally dawned on me what mine is: acceptance. My message is all about acceptance of what is. Working to transform it is great but for true peace, there must be acceptance that it make get better, worse or stay the same. Otherwise, you will be devastated over and over.
Based on this new revelation, I have changed my sub-title.
Sick Girl Speaks!
Lessons and Ponderings Along the Winding Road to Acceptance
What do you think?
Watch Kris Carr's movie, read her book and her blog. She rocks.
crazy sexy cancer blog
crazy sexy cancer website
Unbelievable. Awesome. Inspiring. Daring. Clever. Brilliant.
Oh, and...boy, am I freaking out.
It's amazing how I can be simultaneously threatened and inspired by this person and her work.
Why am I threatened? Well, to read some of her stuff you'd think one of us stole it from the other. Some of our sentences are nearly identical. Oh yea, and she got it out there way bigger and way faster than me!
That taps into a huge underlying lifelong fear of mine--what if I show up to the party too late and all the good food is gone and all the guest have already gone home? I feel like she's already done what I wanted to do--and her dress is much prettier than mine--so part of me wants to just turn around and go home before I even get to the party.
Why am I inspired? That girl is brilliant. I love her message and the way she tells it. While we have a lot of similarities, we also have a lot of differences. After my ego recovered from watching her amazing movie, I realized that there is room for my message. I also realized that I wanted to make it a stronger one. Her boldness and honesty has inspired me to go to the next level.
I know my reaction was petty. I don't mean to say that I wasn't happy for Kris Carr and all of her success. I really, truly am. She deserves all of the success she can hold onto.
As for me, I trudge on! My last day of work is today. I am chomping at the bit to get started at marketing Sick Girl Speaks! full time. I have a few irons in the fire and hope to have many more very soon.
After seeing Kris Carr's work, I woke up this morning with some clarity. Part of what has bothered me about mt title and my book is that it doesn't have a clear, underlying message. Every book needs that one thing that is the thru-line for every sub-message. It finally dawned on me what mine is: acceptance. My message is all about acceptance of what is. Working to transform it is great but for true peace, there must be acceptance that it make get better, worse or stay the same. Otherwise, you will be devastated over and over.
Based on this new revelation, I have changed my sub-title.
Sick Girl Speaks!
Lessons and Ponderings Along the Winding Road to Acceptance
What do you think?
Watch Kris Carr's movie, read her book and her blog. She rocks.
Tuesday, August 28, 2007
Training Wheels
I have said for so long that I longed to stand on my own two feet.
I had a goal of becoming financially independent down the road. It looks like SS has decided to make that a reality a little sooner than I had planned it out to be.
Nonetheless, I want to take the training wheels off at some point...why not now?
I had a goal of becoming financially independent down the road. It looks like SS has decided to make that a reality a little sooner than I had planned it out to be.
Nonetheless, I want to take the training wheels off at some point...why not now?
Monday, August 27, 2007
Freaking Out
So far, the vast majority people I have told about my disability status being "revoked" have simply freaked out. Panic on their faces. Fear in their voice.
Is there something I don't know?
Why am I the only one who seems to think I might be able to do this?
Their fear makes me doubt my tentative confidence.
Still trying to decide which plank to walk...
Is there something I don't know?
Why am I the only one who seems to think I might be able to do this?
Their fear makes me doubt my tentative confidence.
Still trying to decide which plank to walk...
Sunday, August 26, 2007
Thinkin' and Bloggin'
Thank you to Laurie at A Chronic Dose! She named me one of the top thinking bloggers. I feel all proud and stuff...
Now, it's my turn. I have to name my top 5. Here goes:
A Chronic Dose: I don't know if it's against the rules to name the blog that named you but I don't care! Laurie has lived with all kinds of maladies. Despite that, she has gotten her MFA, written a book, is a wonderful caregiver to her dogs and is a compassionate support system for her ailing family members. That nutshell of a resume aside, her posts are funny, smart and make me a little jealous that I didn't think of those things first! :) This blog makes me think about how to be a better writer.
Donor Cycle: I always love to see life on the other side of the illness fence. This blog is close to my heart because it is the musings of a transplant coordinator. Seeing life from her world is a real eye opener. Besides, she's hip, insightful and every once in awhile her writings will bring a tear to my eye. This blog makes me think about the perspective of all those professionals I blog about.
Midlife Midwife: I strive to be a more compassionate person but fail more times than I succeed. This woman lives her life with unmatched intensity, consciousness and love. Her stories are fascinating and her heart shines through each one. This blog makes me think about how I can be a better person.
Rachel's Wide World of Lunacy: Rachel deals with the ups and downs of Bipolar Disorder. Her blog is honest and takes you on a roller coaster of experiences. This blog makes me look at the frustrations of non-physical illness--compare and contrast.
Chronic Babe: Okay, we all know that Chronic Babe is one of, if not the best, websites for chicks dealing with chronic illness. I like reading the many different posts and selecting from the many, many topics. That's not what makes me pick this blog, though. Chronic Babe makes me think about going bigger and better. I find that site an inspiration of marketing and vision. She's taken her lemons and made them into a fancy cocktail with a twist of sass. Chronic Babe makes me think about being a better entrepreneur.
Whew! That was harder than I thought! I had plenty more I could name, but a girl has to follow the rules...
Here are the rules for winners. If you choose to participate, please make sure to pass the rules on to the next Thinking Blogs you tag!:
1. If, and only if, you get tagged, write a post with links to five blogs that make you think.
2. Link to this post so people can easily find the exact origin of the meme.
3. Optional: Proudly display the "Thinking Blogger Award" with a link to the post that you wrote.
* This award was started by Ilker Yoldas at The Thinking Blog
Wednesday, August 22, 2007
Dilemma
Well, the day has come. I have lost my disability status.
When I started my job last September, my understanding was that I had a 9 month trial period before they would consider whether or not to take away my disability.
Well, I was sorely mistaken. My trial period actually started in 1998! They tracked every little job, even before my first transplant. Needless to say, I am way past my 9 months.
And guess what? They want me to pay them back all the money they gave me this year! That's got to be a joke, right? No. It's not. And, if it were a joke, it would be a very un-funny one.
On top of that, my last day at work is next Friday. Money was going to be tight around here while I tried to make a career out of my public speaking but now...tight sounds like a luxury.
So, I have a big dilemma. I can apply to be reinstated and hopefully avoid having to pay back the thousands and thousands of dollars.
I can also have the peace of mind knowing that I will be able to eat and drive my car from A to B.
What I won't be able to do is make one red penny. If I do, those benefits are gone immediately.
I stand on the edge of my future. I have no idea if I will be able to make this book and this voice into a successful livelihood. There is no way to know unless I do it.
Do I take the money and settle for nothingness? Do I give up the money and face possible failure and poverty?
What happens if I become a mediocre success? I may not need that monthly check but I will need my Medicare! Unless I become a millionaire and can buy my own insurance, I can not lose that coverage. God willing, when the time comes for them to take my Medicare away, I will either be rich, dead or sick enough to reapply for disability. What options!
My instincts are telling me to have faith and let go of the safety net. I haven't made up my mind yet but that's how I'm leaning.
It's all very scary.
When I started my job last September, my understanding was that I had a 9 month trial period before they would consider whether or not to take away my disability.
Well, I was sorely mistaken. My trial period actually started in 1998! They tracked every little job, even before my first transplant. Needless to say, I am way past my 9 months.
And guess what? They want me to pay them back all the money they gave me this year! That's got to be a joke, right? No. It's not. And, if it were a joke, it would be a very un-funny one.
On top of that, my last day at work is next Friday. Money was going to be tight around here while I tried to make a career out of my public speaking but now...tight sounds like a luxury.
So, I have a big dilemma. I can apply to be reinstated and hopefully avoid having to pay back the thousands and thousands of dollars.
I can also have the peace of mind knowing that I will be able to eat and drive my car from A to B.
What I won't be able to do is make one red penny. If I do, those benefits are gone immediately.
I stand on the edge of my future. I have no idea if I will be able to make this book and this voice into a successful livelihood. There is no way to know unless I do it.
Do I take the money and settle for nothingness? Do I give up the money and face possible failure and poverty?
What happens if I become a mediocre success? I may not need that monthly check but I will need my Medicare! Unless I become a millionaire and can buy my own insurance, I can not lose that coverage. God willing, when the time comes for them to take my Medicare away, I will either be rich, dead or sick enough to reapply for disability. What options!
My instincts are telling me to have faith and let go of the safety net. I haven't made up my mind yet but that's how I'm leaning.
It's all very scary.
Friday, August 17, 2007
10 pages
That's how many pages I can edit in one hour. Does that seem like a lot to you? That seems like not many to me.
50 down, 175 to go...
50 down, 175 to go...
Wednesday, August 15, 2007
Closer and closer!!
My manuscript arrived here today! It's all marked up and ready for edits. I was expecting to be overwhelmed with rewrites but my editor mostly had a bunch of grammatical suggestions. The content needs tweaking here and there but really nothing major. I'm thrilled!!
Once I make my changes I will send the book back to my editor electronically. She will make a final sweep for errors and tada! Done!
Then my little book will go to the printer. At that time I will abbreviate my posts on this blog. I'm sorry but nobody will buy something they can get for free, ya know?
When the book is out I will announce it here and give you links to all the websites that carry it.
I will also be making announcements about speaking engagements on this blog. If you have any ideas for 2008, please let me know.
My plan is to make a web site asap that will have my workshop/speaking schedule, a message board and a way to buy the e-book.
I have many more plans and I can't wait to get going.
Thanks again to all of you who read this blog and helped me keep going. The end of one road is in sight and so is the beginning of the next!
Once I make my changes I will send the book back to my editor electronically. She will make a final sweep for errors and tada! Done!
Then my little book will go to the printer. At that time I will abbreviate my posts on this blog. I'm sorry but nobody will buy something they can get for free, ya know?
When the book is out I will announce it here and give you links to all the websites that carry it.
I will also be making announcements about speaking engagements on this blog. If you have any ideas for 2008, please let me know.
My plan is to make a web site asap that will have my workshop/speaking schedule, a message board and a way to buy the e-book.
I have many more plans and I can't wait to get going.
Thanks again to all of you who read this blog and helped me keep going. The end of one road is in sight and so is the beginning of the next!
Wednesday, August 8, 2007
For a fleeting moment...Woman
Everyone always tells me how lucky I am to look so much younger than I am. At 34, most people mistake me for being about 18. Despite those around me who insist that is a gift, it drives me crazy. Getting treated as though I am a teenager feels less like a gift and more like being stuck in a bad movie plot-line where I am trapped in the wrong body. I have to work double duty to help people see that I have things to say that are worth listening to. As a public speaker, this can be quite discouraging. Sometimes I wish I could wear a t-shirt that says "I am older than you think I am."
Despite my real age, my outward appearance and other's initial perceptions of me have proved to be a challenge to how I regard my self. With my slim body, my youthful face and with being so short, I have never seen a woman when I look in the mirror. My friends complain about their hips and I only wish I could have the curves that define a woman. Inside, I have times when I feel like a grown-up but those feelings can easily diminish if I catch a glimpse of myself in a window. The line between girl and woman is an elusive one for me.
Something happened the other day. It happened so quickly that I almost forgot about it. I don't know what made me remember this morning, but I did.
A few days ago I looked in the mirror and I saw a woman. For a fleeting moment...I looked like a woman.
I don't know if it was because I was standing up straighter or the light was just right. Maybe it's because my hair has grown longer or because I have lost weight. I don't know why, but I saw the woman in me. I loved it. She was stunning.
I hope I will see her again very soon. Maybe, someday, she will be here to stay.
Despite my real age, my outward appearance and other's initial perceptions of me have proved to be a challenge to how I regard my self. With my slim body, my youthful face and with being so short, I have never seen a woman when I look in the mirror. My friends complain about their hips and I only wish I could have the curves that define a woman. Inside, I have times when I feel like a grown-up but those feelings can easily diminish if I catch a glimpse of myself in a window. The line between girl and woman is an elusive one for me.
Something happened the other day. It happened so quickly that I almost forgot about it. I don't know what made me remember this morning, but I did.
A few days ago I looked in the mirror and I saw a woman. For a fleeting moment...I looked like a woman.
I don't know if it was because I was standing up straighter or the light was just right. Maybe it's because my hair has grown longer or because I have lost weight. I don't know why, but I saw the woman in me. I loved it. She was stunning.
I hope I will see her again very soon. Maybe, someday, she will be here to stay.
Saturday, August 4, 2007
Family Support Dynamics
Nonetheless, I have found that no matter what, every family member brings their unique skills and gifts to the table. If these skills and gifts are recognized, they can be an integral part of the support network, even if part of that network can’t stand needles.
Example 1:
Luckily for me, my mother can handle needles, blood and other unpleasant bodily byproducts. My father, on the other hand, tried to be in the room a few times when I was getting an IV and he fainted each time. He doesn’t have the constitution to be the person who will hold my hand when things are being pulled out or poked or cleaned up. There was a time when that might have made him feel bad, but it became clear at some point that there were other things he could do that made a big difference.
My father has always handled the headache of insurance and hospital paperwork. When I was sick, I never had to deal with the annoyance of getting things approved or sorting out the complicated payment issues. I am forever grateful for that.
In addition, Dad did a great job of pitching in when he could to make life easier on Mom and me. I often had to do IV therapy at home and a few of the drugs had to be mixed up less than 1 hour before the dose was given. This was very aggravating, especially in the middle of the night! Nonetheless, my father took this on as his job and I never had to worry about mixing up my meds again. They were always waiting for me when the time came. What a relief.
My father also did a good portion of the spoiling. My appetite was often very poor so when I had a craving for something it was an event to celebrate. Unfortunately, those cravings didn’t always happen at convenient times. My dad was always willing to run out, no matter what time, and track down the food I desired. I remember one time when he actually convinced my favorite Italian place to make me a pizza after they had closed! His willingness to do this made me feel very loved.
Dad avoids direct contact with all things medically painful or physically distressing. (Better that than to scrape him off the floor!) Mom holds my hand during all the procedures while Dad does many other valuable things to support me in my times of need.
Example 2:
Sometimes the contribution a person makes to a difficult situation is entirely unpredictable. My two sisters and their families live nearby and have seen me weekly through all my highs and lows. My brother, on the other hand, lives far away and we only gets to visit a few times a year. Despite the distance, he turned out to be extraordinarily helpful after both of my transplants.
Jay flew down and was by my side, with the rest of my wonderful family, the day after both surgeries. During that time I was intibated and could not speak. This was an especially distressing time for me as I had many questions and comments that had to remain silent. I attempted my version of sign language, more like a morphine-inhibited game of charades, but nobody could understand me. Except Jay.
I don’t know what it was or how he knew but he always comprehended my silly hand signals. Whenever I started trying to communicate, people learned to go get Jay. It was so soothing to know there was someone who could answer my questions and even get my hand signal jokes!
There was no way to predict that Jay was going to be so helpful in that capacity but it was very sweet that he was. It made me feel so much closer to my brother and I will never forget all of our mute conversations; no matter how hazy the drugs were making me feel!
The Lesson:
Support can come in many forms. Taking care of a sick loved one requires a team. It’s easy to place expectations on people that do not match with what they are good at. Families and patients should keep on the look out for what an individual naturally gravitates towards. Would you rather run errands than spend long hours sitting by the bedside? Would you rather have long heart-to-hearts about life and death in lieu of dealing with the insurance company? Everyone has a part to play. The trick is figuring out who does what and honoring each other’s roles as equally valuable.
Thursday, August 2, 2007
System Failure
To Whom It May Concern (And Who Does It Concern?):
For the most part, my political days are over. I marched on
I am writing a book that holds the potential to explore many of our country’s political healthcare issues. In fact, sometimes I feel guilty for not being more involved in that aspect of patient care. Nonetheless, my focus tends to be more on my immediate experience and those things I deem to be within my power as an individual. I don’t really want to deal with politics.
That said, I am feeling nervous about my future and I can not deny the impact our government could have on my life in the coming years. I began working a part time job about six months ago. Because I have been on disability and Medicare, it was my duty to report that I had gone back to work. I’m not nervous because I have done anything wrong. I am nervous because there are a lot of rules and I don’t want to make any mistakes. If I do, I can potentially lose my disability status.
When people learn I am on disability, they sometimes react with surprise. They think because I can walk, talk and stand upright that I should no longer be taking anything from the government. People may judge me because I am on disability but what they don’t understand is that I do not have the energy to work a full time job and I need Medicare. Medicare is directly linked to disability status.
I quit college because of my health and therefore my skill set is limited to lower paying jobs. I do not get benefits where I currently work and even if I did, it’s highly unlikely the office could handle some one like me on their group insurance. I have to approach my work schedule carefully so I can keep my disability status. If I lose my disability, I lose my insurance. Can you even imagine the “pre-existing conditions” list on my private insurance application?
The chance that I could find a company to work for that could provide me with insurance is slim. The prospect that I could pay for my own is simply impossible. What would someone like me do without insurance to pay for all of the transplant medications? The answer to that question is easy: they would die.
All of those ponderings are head spinning but that doesn’t even take into account what would happen if I became terminal or chronically ill for the third time. I would have to quit my job and apply for disability again. What would happen to me in the meantime? How would I survive while I was waiting for Medicare to kick back in? The thought scares me to the bone.
It seems to me a rock and a hard place. If I work, I run the risk of losing necessary, life sustaining government funded coverage. If I don’t work I am not fulfilling the entire goal of transplant: to live a more normal life. Like so many governmental programs, this is one more example of a good idea with no plan to help transition people from one end to the other.
I really have no right to complain. Compared to many other people, I have it good. I have been able to be on Medicare for ten years and have been able to have my father’s insurance as back-up. Medicare paid for two very expensive lung transplants. My insurance pays for a regimen of medication that, in one month, costs about as much as my rent for a year. I am very lucky to be alive and to have gotten the care my insurance provides. I really have no right to complain but I am going to anyway.
I did not get this transplant so that I could sit at home on the couch and collect government money. I also did not go through all of the pain and suffering so that I could live a more normal life, get a job and turn around and lose my insurance. How silly would it be, after all of this, to die because I can’t afford to buy my transplant medications!
Things just don’t add up. Medicare will pay for surgeries that cost a million dollars but won’t follow through and pay for the medications that keep you alive afterwards unless you promise to make less that a certain amount each month? I don’t understand. All I want to do is go from being sick to making a contribution to the world. The organizations that got me well are the same ones standing in my way.
We need a bridge for people like me. Where is the bridge?
Sincerely,
Tiffany
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