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!

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.

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.

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.

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.

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

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!

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.

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.

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!!