Wednesday, January 30, 2008
Well, the grieving for my friend has taken a weird shape. It's not like the grieving I am used to. Instead of loud and overwhelming, it is quiet and slow. It hits me in small doses and usually brings a tear to my eye but not down my cheek. Today, finally, the dam was broken and I actually cried.
During the last few weeks of Susy's life, I created a private blog for her friends and family. It turned out to be a great way for people to learn about the latest developments in Susy's life and her sad death. It also became a place of community. People who know and love Susy can leave comments and many of them have written me directly with thoughts, feelings and introductions.
It is not a new idea for me that death brings us a gift of a 360 degree view. Through all of the emails from people in her life, most of which I don't know, I learn more about Susy every day. Truthfully I think I have learned more about her in this last week than I would have if she had lived 5 more years and we continued being friends. There's just a different perspective that comes with learning about someone you know through other people--a 360 degree view. A part of my finds this sad and another part just finds it fascinating.
Be it sad or not, I have been overwhelmed (in a good way) by the number of emails in my inbox. People who I never would have known, from all over the country, have become my friends. This makes me happy but it also makes me yearn for Susy.
I want to call her up and tell her about her friend in Georgia who wrote me. As I learn more about her life, I want to ask her more about her life. I didn't know she graduated college with all of those honors. I didn't know she had sooo many people in her life who had CF and transplants. How did she get to know all of those people? She had done more and knew more than I ever realized.
I knew aspects of Susy but not the full picture. As the view becomes more clear and well-rounded, all I want to do is pull up a chair and talk to her about all the things I now know. I had more things to learn from her than I realized. If only I could go back and ask all the right questions and listen, listen, listen.
Tonight, I am still mourning (in my own weird, slow way) the loss of a bright light. Susy was many things to many people and I am just discovering how far reaching her impact really is.
Tonight, I am mourning lost opportunities. There is so much I'd like to talk with her about but my chance is gone. She left before I even knew what to ask.
I have made a note to myself: Ask more questions. Try to get a more well-rounded view of everyone close to me while they are still here to answer the questions I want to know.
Friday, January 25, 2008
My new plan for 2008 was to post multiple times over the weekend and let myself off of the mental hook during the week.
My life is getting busier and busier by the day. It's all very exciting but I just don't have the time for posting Mon-Fri. But that's not the point of today's post.
The point is that I am taking this weekend off from pretty much everything (including blogging) to mourn a dear friend who passed away yesterday.
Susy was my "double double sister." She and I had our second transplant a month a part. We shared a similar medical history and an even more similar sarcastic sense of humor. More often than not, we pointed our sarcastic tongues in the direction of all the stupid medical crap we had/have to go through. We laughed through even the crappiest of it and, underneath, I had a deep sense of satisfaction knowing how much we were not alone as long as we had each other.
Susy left her body yesterday after dealing with stupid chronic rejection for about a year. I am so honored to have been to see her the night before she died. I am so thankful for all the time I was able to spend with her and her family during this last month.
Susy taught me a lot about that line between fight and surrender. I'll admit, sometimes I thought she was crazy (and she knew it) because she just never slowed down. Instead of quitting work and becoming a permanent fixture on the couch, she not only continued working but also entered graduate school! She worked and went to school through the end of last year. She didn't stop until the semester ended--and she got all A's.
Susy has opened my eyes to a new way to live with end stage illness. I'm sure someday, I will take what she has taught me and apply it to my own end stage illness.
Susy was a smart, passionate, funny, beautiful, compassionate person who reached out to so many people in profound ways. She has so many friends that it was impossible for me to keep track of them all. She was a special one.
To my double double sister, my other pea in the pod, my sarcasm twin...my friend. I miss you. My only solace is that you are no longer struggling for breath. My greatest comfort is knowing you have now found peace.
I love you, Suze.
Sunday, January 20, 2008
I can't really tell you how I did. I know I was nervous and I know there were things I thought of later that I wish I had said. I doubt, however, there will ever be an interview in which I say everything perfectly.
There were many wonderful things about the interview--the top of the list had to be meeting Joe and Terry. They are so kind and such pros!
Second on the list, though, was that talking about my book and my work in that way allowed me to diver deeper into the specifics of what my mission really is. Sure, I didn't say it on air, but I'll say it now! :)
I am an optimistic realist. My goal is to look at things (this system, my role as a patient etc.) as honestly as possible and then find strategies to make it better. I am not a politician: I have no desire to change the laws or get involved in system changes. Likewise, I am not a Pollyanna: I have no desire to sugar-coat things and tell everyone it all will be ok.
What I do have a desire is to take my experience and turn into practical "how-to" advice for patients and families. I desire to learn more about "the other side of the curtain" so I can bridge the gap between patient and professional.
I continue to define my role more and more everyday.
I thank Joe and Terry Graedon for an opportunity to do it through talking with them!!
I'll let you know when I find out the air date for my interview!
Leaving school behind was intensely painful. It wasn’t me that wanted to quit, it was this stupid body, these stupid lungs, that kept me from finishing what I had started. What I didn’t know at the time was that walking away from college was only the beginning of a long list of things I would never finish. My CF just kept getting in the way of my big (and little) plans. I had to mourn the loss of my future.
After I left school, I was placed on the lung transplant list. The allocation system was different back then and I knew I had a long wait in front of me. For awhile, I tried to continue on, business as usual. I auditioned for, and got, a part in a community theater play. Everything was going fine until I had a horrible coughing attack in the middle of a performance—the kind that comes from the bottom of your toes and there’s no holding it back. This was embarrassing for me and traumatic for my cast mates and the audience members. This was the last play I was in.
From there, I tried to move into directing but my declining health proved an obstacle once again. The stress and physical exertion it took out of me was too much. By the time the show was up and running, I was in the hospital with a raging lung infection and I never got to see the play I had worked so hard to pull together.
Little by little, all of who I thought I was got stripped away. Who was I if I wasn’t an actor or a director? What was the purpose of my life if I could no longer do the things that gave my life meaning?
And it didn’t stop with my career. As I became sicker, more and more of the things that defined me began to fall away. I got a job as a part-time receptionist but, despite my employer’s enthusiasm for my work, I quit after only a few months. The constant IVs and lung infections made even part-time work too difficult. About the time I went on oxygen full time I stopped dating, traveling, driving and living on my own. My independence had been lost. The world became a place filled with obstacles—even stairs became a threat to my well-being. There was very little left of who I had been.
That was when it happened. After the crying was done and I had mourned my losses, a new part of me began to open up. This was a part of me I had never known before—an inner world I never knew existed. I had met a new best friend, a person who made me laugh and always knew the perfect thing to say. The amazing part was: that best friend was me.
In time, I explored an inner landscape filled with new ideas and a raw honesty. I stopped needing to tell people about who I used to be and what I used to do. Those things no longer felt like an important definition for my life. Instead, I invited people to look past the oxygen tubing and the labored breathing and see the truth of who I was. Through my losses, I had made a brilliant discovery—The Permanent Me.
The Permanent Me did not need labels or job descriptions to know she was valuable. Nor did I need my health to enjoy living. Armed with my new best friend at my side (me) I felt more alive than ever before.
I don’t mean to suggest that I did not have days of pain or difficulty. Waiting for a transplant, after all, has many challenges. But even on my worst days, there was a part of me that was never scared, never sick and never tired. I had connected with the “me” who was fulfilled even if the day's major activity consisted of getting from the couch to the bedroom. I loved myself for merely existing.
Now that I have had two transplants and am enjoying the greatest health of my life, I struggle to remember what it was like to live without society’s labels. I am back in the world, working and trying to find “value” in the time I have on this earth. The idea of losing my independence and giving up all I have made my life to be strikes fear in my heart. I don’t want to say goodbye to everything. I like my labels!
Yet, when the day comes that I have to begin stripping away all of who I have become, I will take solace in knowing that The Permanent Me is waiting, ready to be my best friend again. The Permanent Me has taught me the greatest lesson of all: I am not illness. Even when my body is broken, I am beautiful and irreplaceable. I have nothing to prove—I am perfect just as I am.
My wish for all of those who must suffer the losses that come with illness is that they too will discover The Permanent Me inside.
Sunday, January 13, 2008
With me being a fancy-dancy public speaker now, I decided to treat myself to a little non-essential beauty enhancement. I am a hand person. I notice women when they have pretty hands and nails. For this reason, I got myself acrylics! I love them!
They are not, however, painless. During the time that the nail tech is grinding them down and smoothing them out, there is some pain involved.
A few days ago, I got my first "fill in". This is when the natural nail starts to grow out (I am going somewhere with this, hang in there) and they reapply some of the acrylic solution. There is more grinding and smoothing done at this time.
When the tech was working on the pinky nail of my left hand, the pain was noticeably worse. It burned and hurt enough that it was hard for me to sit still. I wanted to ask the nail tech about it--I had all kinds of questions starting with "Is it normal for it to hurt so much on one nail and not the others?" I didn't ask, though. I just had the feeling that would be a dumb question and one he couldn't answer anyway.
It made me think of all of the times I have wanted to ask my doctor or transplant coordinator a "stupid"* question. By stupid, I mean a strange question that had no answer. Things like "Is it normal for my rib to move like that" or "When I breathe like this, what does it mean?" These are not things that anyone would know off of the top of their head. The only thing my docs could do to answer these kinds of questions would be to run a bunch of expensive tests. The chance of the tests being able to answer the questions is about 0%.
What I realized while I squirmed in my chair as my nail was burning, was that there is always a question behind the question. The question that popped out, had I chosen not to bite my tongue, might have been "Is it normal..." but what I really wanted to know was if the burning was an indication of a nail bed fungus or infection. (This is something that can happen when you get acrylics.) What was driving the question was my mother's voice--she had made me paranoid about getting a fungus since I am immune-suppressed.
I thought of all the "stupid" questions I had thought about asking my medical team. 100% of the questions were rooted in worry. About 85% of them were rooted in a worry directly correlating to some story or half-fact I have heard along the way.
Here's my point:
As a patient, when you find yourself obsessing over a twinge or a tingle, ask yourself what it is that you think it might be. What is the worry and where does the worry come from. From there, it will be much easier to decide how legitimate or silly it would be to page your doctor for a worry consult.
As a medical professional, try to remember that off-the-wall symptom questions have a worry behind them. You may not know what the symptom means but if you ask your patient what they are concerned about, you will likely be able to tell them what that particular ailment would look like or feel like if they had it. By addressing the worry, you have addressed the root of the question.
I, for one, can not call my transplant team for every bodily warning bell that goes off. For most of the bells, I have to wait it out. Otherwise, I'd be on the phone with them at least once a week! It helps me to become conscious about what is at the back of my mind because it's likely that far away thought that causes my anxiety. Most of the time, when I realize what I am actually worried about, I have a good chuckle and happily go about my day. Every once in awhile, I call my team.
Who knew getting a manicure could be so informative?
*Yes, I know there is no such thing as a stupid question. Well, maybe not to some people but I sure have heard some!
I am not one of those mothers who thinks that everyone in the world finds their child as adorable as they do. In fact, I know people (Ahem, Dad) who don't even think my daughter is cute at all! "Weirdest looking dog I've ever seen" I believe was the exact quote.
Oh, well. It's my blog and I'm gonna bore you with my daughter's cuteness anyway!
Here's our little bundle of Whippet joy this morning keeping herself warm on this chilly winter day! Everybody humor me now and say "Awwwwwwwww!!!"
Saturday, January 12, 2008
It's a Book Launch Party for Sick Girl Speaks!
- Meet the author, Tiffany Christensen
- Get a book signed
- Enjoy an author reading
- Bid on carefully selected silent auction items
- Snack on yummy sweets and coffee drinks
About 15 years ago, I struggled through some mandatory dance classes at North Carolina School of the Arts. I didn't know it at the time, but I was only a few years away from having my first double lung transplant. I coughed, wheezed and panted my way through these dance classes, taking many breaks and fighting for air. I was in survival mode and the last thing I cared about was whether or not I "got" the dance moves or not. I was just holding on for dear life and trying to make it through the excruciating exercises.
Since then, I have often fantasized about taking dance classes post-transplant. Now that I can breathe, it seemed like it would be fun and easy!
Last night, I took my first dance class since NCSA. Well, I was right--it was fun. I was also wrong--my lungs had little to do with my dancing ability! I am horrible!!! :) :)
I am double jointed so I look freakish doing some of the "jazz hands" types of things. I am very uncoordinated so I spend most of my time trying to figure out which foot is supposed to have weight on it. During the combination, I franticly look around for help and am 1 beat behind or ahead the routine. I bet you're thinking "That doesn't sound like fun!"
But it was.
The instructor is very sweet and the folks in the class were very generous with their support.
Best of all, I only got winded one or two times. The rest of the 1.5 hour class, I was concentrating on my two left feet. I still may be a terrible dancer--Broadway will never see me headed their way--but there's one big difference...I can breathe.
There are no words to express how beautiful it is to compare yesterday to 15 years ago. Not thinking about breathing is a dream come true.
Now, let's hope my donor had some ability for dance--maybe she can help me out with the "Cats" combination!! :)
In my "magical fantasy," my day of living for Clay would have been a day of great joy and enjoyment of life. However, as it turned out, Monday was one of the hardest days I've had in a long time. I was uninspired at work, my after-work plans seemed to fall through and I spent 3 long hours after dinner writhing in pain from some strange stomach problem.
Even still, I held Clay close to my heart and mind all day. Instead of living a big day for Clay, it turns out I had a hard day and Clay's memory gave me great perspective. Instead of me doing something for him, he did something for me. I had not planned it that way--I wanted to drink in the glory of living and dedicate my intoxication to him. Instead, he reminded me that every day is precious--even the ones filled with disappointments and pain.
I had set out to do a nice thing in honor of a boy who had left this world so quickly. As it turns out, the honor was all mine.
Thank you, Clay.
Sunday, January 6, 2008
Tonight, I got a sweet email from a mom who lost her precious 5 year old boy to CF just last month. She was encouraging me make my dreams come true! Can you believe the generosity some people have in their hearts?
Monday, January 7th, I will live to the fullest in honor of Clay. Our disease took him so soon and the least I can do is remember how lucky I am as often as humanly possible.
I have so many things to live for. My life is so beautiful. Now, I have one more thing to live for--Clay, this one is for you. Happy Monday, everyone.
Live 'em while you got 'em!
Wednesday, January 2, 2008
I wanted to announce a new program I have developed for 2008.
Every two months, I will be picking an important cause--one I personally believe in. During the two months this non-profit or charity is the focus, for any paperback book you buy, that worthy cause will be getting a portion of the proceeds.
Now, you have one more reason to buy Sick Girl Speaks!
January and February's focus is on a very special non-profit: Project Compassion!
Check out the details on my website: www.sickgirlspeaks.com
Health and Happiness to you in 2008!!