Saturday, October 27, 2007

Crazy, Sexy Questions

Well, I finally had the opportunity to watch "Crazy, Sexy Cancer."
It left me with some Crazy, Sexy Questions.

Let me start by saying that Kris Carr is clearly a talented artist. Her movie flowed well, was never boring and was pretty to look at.

Kris was diagnosed with an incurable cancer and had 20-something tumors on her liver and lungs. It looked bad. There is no treatment, chemo etc, so she embarks on a journey to find health with diet and yoga. I found the explorations into more "out there" therapies to be funny and something I could relate to. During the course of the movie, she interacts with several "cancer chicks" who are at some stage of treatment--serious chemo and all the effects. (Those people were my favorite part of the movie.) In the end, we discover that Kris' tumors are so slow moving that the doctor suggests that she refer to them as tumors instead of cancer. She never had one day of sickness during the movie's 4 year span.

Here's my question: Am I alone in feeling that a person with an illness which has no symptoms can't really lump themselves into the same bucket as those of us with serious, active illness and treatments?

I found myself getting angry at Carr for being around women who were truly physically suffering and not acknowledging that her level of illness was very different.
I felt angry at her for talking about her diet and crying about her diet and acting as though she was "being positive" in the face of cancer.
I do not deny the psychological effects of a diagnosis like that. I know there is the need for grieving and feeling your fear.
Why though, did I find myself feeling sorry for the sick people watching her movie?
Because I know some people were watching her walk down the aisle in a wedding dress and their hearts were breaking. They would not get to have another moment like that in their life.

I have written about "Competitive Suffering" and I am aware that is what I am doing.
I need to find out, though, what it is that has triggered my feelings of anger towards this woman.

Kriss Carr was on Oprah talking about facing death. My dream is to be on Oprah one day, so I know that I am just plain jealous. However, how does one really talk about facing death without ever spending one day sick in bed?

Am I just being petty?

Amazon

I have 3 very nice reviews on Amazon.com. I noticed that the more reviews I get, the higher I am on the search list.

If you've read Sick Girl Speaks! please review me!

I'm also looking for some one to read my book who has already read "Sick Girl." I want them to post a comparison on her Amazon reviews. I'll send a free book to the person willing to do that!

Saturday, October 20, 2007

From Diagnosis to Acceptance (continued)

So far I have talked about some of my personal stages of acceptance--yes, I'm not going to call them stages of grief because they are all key players ending with the result of acceptance.

Here's the steps I've covered in the previous blog entry:
Numbness
Panic
Forced Calm (denial-ish)
Anger, Sadness, Bargaining
Opening up to the "safe person"
Confessing and revealing

After months of grieving, saying goodbye to my life and goodbye to those I loved, I moved into the next phase that I call the Daily Grind. This is where I established a routine. I built strategies around how to maximize the convenience of my living space. I had my painting projects to keep my creative juices flowing. I had internal projects on how to become a better person. TV was a source of entertainment and stimulation and, with the help of TIVO, I had a plan of what to watch and when. Life with my illness never became easy but it did become more normal. I had entered the Daily Grind.

As I spent more and more time alone, more and more time unable to do much physically, I began to live a life of "quiet contemplation." (Isn't that a phrase from Thoreau's "Walden"?) As my outer body weakened, my inner body strengthened and I was beginning to feel a deep connection with myself as well as The Divine. I began to feel connected to the Universe in a way I had never experienced before.

This feeling of connection grew deeper and deeper over time. At some point, I had a series of revelations.
1- It was my body that was sick, not my spirit.
2- I had a choice if I wanted to suffer emotionally as well as physically.
3- We all die, why did I think I was so special that I should somehow be exempt?
4- When I left this earth, I would be going home, not leaving it.
5- I had faced what many would consider is the worst case scenario: there was nothing I couldn't process and come to terms with.

These revelations were accompanied by feelings of happiness and often laughter--like my seriousness had been so serious I deserved to be teased a little. These thoughts and feelings gave way to my next step: understanding.

It was like I was seeing the world through a grid. When I saw a problem or heard a friend tell a story of frustration, I could almost see the way that the events in question fit with together and made perfect sense. It was like I could say "Well, if A and B are true than it's only to be expected that Y would happen just as it did!" The universe appeared to me to be a perfect place of balance. I felt so much like an integral part. This where I began to concentrate on That Which Is Important. I attribute this kind of understanding to being so close to the other side--it was as though I had one foot on earth and one foot standing in whatever was awaiting (heaven, the spirit realm, whatever you choose to call it.)

Okay, this is getting way too drawn out so I am going to lump my last three steps together: Peace, Gratitude and Joy. I don't mean to say I never had bad days; please remember what I wrote about all of these phases cycling around. For the most part, however, once I had come to terms with my fate and connected with the universe, I was at peace. Once you've faced the worst, what is there to be in distress about? (I am speaking emotionally, not physically.)
I felt gratitude for the love around me and for the time I spent every day getting to know my true self as well as The Divine. This is what I called being a monastery monk: I was grateful for the privilege to live a life of connection and contemplation, something few people get to do.
I felt joy. Plain and simple.

As I have written about before, that period in my life was a vibrant time and one I think on fondly.
I am so happy I am here, but I know some of the journey that is ahead for the next time I must face my end. It's an intensely difficult road with the potential for amazing and unexpected rewards.


Not everyone who passes away reaches the same place of acceptance I have described. I have two hopes:
1- I hope that many more people will discover the possibility of joy at the end of life, either through me or some one else, and our society's approach to death will change over time.
2- I hope that, no matter how some one felt at the moment of death, that it doesn't matter one stinky bit. I hope that we all feel great peace and joy once we leave the confines of this body.

From Diagnosis to Acceptance

I have two presentations to prepare for Monday and Tuesday. I'm excited to have 2 days to talk with Chaplain Residents (each talk is 1.5 hours) about the patient perspective.

The first talk is called "From Diagnosis to Acceptance; One Patient's Emotional and Spiritual Journey." This is the first talk I've done in which I will be able to address the spiritual element. That should be fun.

I have been thinking about my diagnosis of chronic rejection. I have attempted to trace my reaction time line. Certainly Kubler-Ross got it right, but I have many more "stages" to add onto hers.

For those of you who have gotten the news that you have a serious or terminal illness, I'd be very interested to know if my time line is similar to yours. Like Kubler Ross's five stages, the following stages could cycle back around and did not manifest as a linear process. I have, however, attempted to arrange them in a way that most closely matches the order in which I experienced them.

I got the news that I had chronic rejection, a diagnosis that was commonly terminal, after months of tests and guesses about what might be going on with my lungs. The day the official diagnosis was made, I was in an exam room and was told in a matter-of-fact tone that they had decided it couldn't be anything else.

I felt a wave of nausea and then my reaction was numbness and disorientation. I felt like I was under water and I could barely make out garbled words coming out of my doctor's mouth. I wasn't sad--I was numb. I remember after my appointment, I went to a hospital snack shop. I still felt like I was in a dream--not quite in my body. When I got to the front of the snack line to pay, a man at the door, on his way out, shouted to me "Yea, maybe next time you'll think about getting in the back of the line!" Like coming out of a deep sleep, the anger in his voice roused me and I dumbly said "What?"
"You cut in front of everybody. Maybe next time you'll get to the back of the line!"
All I could reply was "Well, why didn't you say anything?"
He said something else nasty and left. My head was spinning. The man had upset me so and I had no idea why he had been so mean to me. I muttered something to the line of people standing behind me and the woman behind the counter. It was like something out of a movie--I was only met with cold stares.
Looking back, I imagine I did cut in line. I was barely able to see at that point. It amazes me that those people were so furious with me. It taught me a lesson about giving people the benefit of the doubt--especially when you're at a hospital. It may have appeared as though I was rudely cutting in line, when I was actually in the middle of a profound state of numbness and disorientation.


I think I was numb for a few days. When my emotions began to surface, I moved into the next phase: panic. What do I do now? How do I live? Should I drop out of school? Do I take a trip around the world? How could this happen? What does it mean? How long do I have? How will I die? Will I be in pain? What treatments can I try? What do I do now? What do I do now? What the hell do I do now? During this time, I walked around with a pit in my stomach.

Panic is not something the body can sustain for long. I'd estimate I wrestled with my panic for about a week. That level of emotion was draining and painful so I slid into the next phase that I call Forced Calm. Like a switch, I was ok with everything. I assumed the character of a person who was quite evolved and at peace with mortality. I believed I was that person, but I was faking it.
I continued going to school and even added on a new job. I was busy and I was fine.
I remember going to a clinic appointment with a book. I read it before the docs came in. During my talk with the doctor, I asked how long she thought I had left to live and she said about six months. I reacted with a oh-so-calm "thank you" and went right back to reading my book. I thought I was so together! Truth be told, I read the same sentence over and over with no comprehension of what it said.

As my illness became more debilitating, the cracks in my calm exterior became longer, wider and deeper. My facade became impossible to maintain and I had to face the next phase. This is where most of Kubler-Ross' 5 steps moved into focus.
I was angry. How could this happen so soon after transplant? Why would God give me this gift of life only to take it away so soon? I questioned the morality of transplant itself and wanted to start a movement to have it banned. I was angry that my medical team asked me to continue coming in for evaluation. I was angry with other people who were buying houses and making their way in the world. I was angry with God and the entire Western medical system.

I was sad. There's not much to say about that except that I cried...a lot. It felt like a black hole in the middle of my chest that had no hope of closing up or being filled in. Often, I cried to exhaustion and the only thing that brought an end to my tears was sleep. The Illness Identity Crisis had a firm grip.

I made bargains. I tried to negotiate deals with God. I promised to pray more and be a better person if He/She would agree to stop the progression of my disease.

During this time, I did one of the smartest things I could have done: I started seeing a therapist. I call this step the "opening up to a safe person" stage. He wasn't a wizard and I wasn't immediately "fixed." I spent many hours in his office going through all of the emotions I listed. This time laid the ground work for my next two steps: opening up. At first, I felt completely alone and isolated. When I began talking with my therapist, Glen, I felt less alone. I saw Glen as "the safe person", that one person I could tell my deepest and darkest to without having to think or worry about his feelings. The ability to express my emotions, process them out and have an ally in this strange new world, was the spring board for all of my following stages.

So, Glen was my "opening up to a safe person" stage and the next step was "opening up to the un-safe people stage." This I call the "confessing and revealing stage." Everyone I loved fell into the "un-safe people" category. Not because they were mean or hurtful but because I was so scared to hurt them with the gravity of my situation. I knew when I told them how serious my illness had become there would be tears and pain. I dreaded being the one to bring hurt into their lives. By the same token, I did not want to talk with my loved ones about my feelings. They had enough to deal with on their own--I didn't want to add to their burden by revealing how difficult this was for me. Eventually, however, I began to feel safe confessing and revealing to those I loved. It actually became an extremely important component to the rest of the healing left to do.

This is a long post! I need a break! :) To Be Continued...

~The Daily Grind
~Connection
~Revelation
~Understanding
~Peace
~Gratitude
~Joy

Books!


Thank you to everyone who bought Sick Girl Speaks! this week!

It's been very exciting to ship them off to their new homes.

I will be walking on pins and needles until I get some feedback, however. I'm trying not to let my anticipation give me a headache!

I have read most of the book and I like it. Of course, as the author, I read it and think "I should have explained that in more detail" or "I wish I had included that story" but for the most part, I'm happy with it as my first attempt at writing a book.

Yes, there are some pretty significant typos in there. Yes, it makes me cringe to see them. There is a lesson there for me: Slow down and do it right the first time! When I do a project, no matter what it is, I can't wait to see the end--to accomplish the goal. This is the way I have always been. I tried to be conscious of that when doing this project and was successful up to a point. When I turned the corner and saw the finish line, however, I could no longer maintain my patience. This, my friends, is why my book has many typos!

I plan on fixing the typos when I have the money to do so. It will be a while. In the meantime, I have another lesson to embrace: I am good enough, even for typos. I don't mean that in an egotistical kind of way. I mean that I now have to work at being at peace with my project: the parts I like and the parts I would like to change. I have to understand that all of it is a reflection of who I am and, therefor, even with the imperfection it's perfect. It's one more lesson in learning to love myself, flaws and all.

Some people have asked me if I make more profit from the books sold on my website or on Amazon.com. Let me say, order the books from wherever is most convenient for you...To answer the question, I make the most profit from the paperbacks sold on my website.

If you are a patient or a medical professional, please email me about your special discount offer.

Thanks again to all the blog readers out there!

Thursday, October 18, 2007

Everywhere

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!! :)

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.

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.

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

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.

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!!!!

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!

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!

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?