What would life be like without your presence in the lives of others? The fourth season of FRINGE is centered around a world without Peter Bishop ~ I get it, this is part of the bigger story ~ but that doesn't mean I like it one little bit!
Actually, I've thought a lot about this theme ever since I was diagnosed with Chiari ~ what would life be like without me on this earth anymore? The concept is a hard one to embrace too closely without letting it consume me whole. I have a questions for other Chiarians and other assorted brain surgery survivors.
How did you cope with the overwhelming feeling that you just might not make it back from brain surgery?
I used to think that I was really good at coping, pushing through very difficult times, but now I'm not so sure. The physical scars, although healed up nicely, will always remain on my skin as constant reminders of the battles I have survived. Now, almost three years post brain surgery, the emotional scars are bubbling up to the surface. Sure, I survived, I'm living, breathing, carrying on at the thing we called life...but at what cost?
I'm not the same person today that I was prior to my Chiari diagnosis. On that profound day,
September 26, 2006, I think I built an instant fortress around myself ~ guarding my emotions, protecting my heart. I think a big part of me wants to walk away from everything prior to surgery and start a new.
The surgeons prepared me for the physical pain I would endure, the long recovery road, but they didn't prepare me for a total fall out of who I am and who I am becoming. This is probably totally gibberish to most readers out there, but I have a feeling a bunch of you know exactly what I am talking about.
I just finished reading another inspiring book ~ Forget Me NOT by Jennifer Lowe-Anker. What an incredible journey the author has had thus far ~ her strength and courage have inspired me to live more in the moment and get started on my own memoir. Ever since I picked up Ghosts of Everest I have been spellbound with the mountain and the mountaineers who climb the highest peak on the planet. You know, you've probably read about many other blogs where I have yammered on and on about Everest (29,035 feet) ~ but seriously, I can't help myself. This feeling that wells up inside me when I open up a book about someones journey up the mountain is indescribable.
I have some theories ~ maybe my brain is re-playing some heart memories of some distant relative who climbed Chomolunga-The Goddess Mother of the World. Perhaps I identify with the incredible endurance of the human spirit to keep moving forward even when you have nothing left to give. Anyway, with each Everest book I have read I have learned about the greatest mountaineers on the planet. Their stories are intertwined in the brotherhood of the rope.
One climber in particular I have grown to greatly admire and respect ~ Conrad Anker. Not long after he discovered George Mallory's body on the North side of Everest he was in a deadly avalanche in which he narrowly escaped. His best friend, Alex Lowe, and Dave Bridges lost their lives that day. Since that tragic day, Conrad has gone on several other expeditions, has started a Khumbu Climbing School and married Jennifer Lowe-Anker.
So, this weekend I was up in the Keene Valley with some friends at the 13th Annual Mountainfest ~ both Conrad and Jennifer Lowe-Anker were doing a slide show presentation about her book and Conrad's expeditions. I had both of them sign some books ~ it was amazing meeting them both! I also had a chance to go on a snow-shoeing outing ~ shhhhhh don't tell my surgeons. There wasn't anything on my discharge papers that said 'no snow-shoeing' ~ it just said no vacuuming for 3 months! Despite the bitter cold ~ it was down in the negatives at night and a high of 13 on Saturday ~ I had a great time this weekend relaxing and breathing in the sweet mountain air.
Today was my first day back at work. Wow ~ 12 weeks really flew by! After spending all day looking at a computer screen my eyes are feeling a little bit googly! Getting back into the swing of things wasn't as hard as I had anticipated and ~ shocker ~ my brain seems to be working better than before the tethered cord surgery.
Something unexpected that happened today was my re-introduction to my desk chair. Clearly, a swiveling desk chair doesn't seem threatening to the average person. I've never had a problem with my chair before ~ but now ~ every time I moved in the chair I winced. I never realized how much I rolled around in the chair during the day. Now I have to be careful not to accidentally fall off the chair or pull my back out of whack while sliding around my cubicle! Maybe if I put some googly eyes on my chair I will know where I stand with the chair. Hmmmm ~ I just might have to search for the perfect pair of googly eyes now!
During my drive to work this morning I heard the song, "In the Blink of an Eye" and realized how time really flew by while I was home recovering. Of course I had lots of grandiose ideas of projects that would keep me from being bored. I still have a long list of movies I have yet to see. Time totally got away from me! What's more amazing is that the memory of the pain I felt seems to have faded. There wasn't one time during my recovery that I broke down and cried from the pain ~ I wasn't expecting that reaction at all. I found out that my pain tolerance is pretty high. These things were encouraging to me. Press on ~ push through to the next obstacle. ~ Sigh ~ So, what's next? Waiting for my real life to begin ~ probably ~ but trying to stay in the here and now and not look too forward into the future.
noun ~ one who lives through affliction verb ~ to remain alive; to carry on despite hardships or trauma; persevere; to live; persist; to cope with a trauma or setback; to outlive
Considering the definitions above it's safe to say that I am a survivor. I can add 'spinal detethering survivor' to my growing list. But wait ~ since I have avoided brain surgery does that make me a 'brain surgery survivor?' Those of you who have had brain decompression probably totally don't agree with me at all ~ and I totally understand where you are coming from. It's a right of passage!
The old survivor guilt feeling is creeping back again ~ I know ~ it sounds narcissistic ~ but I know this feeling. I felt it when my brother died when I was two years old. Why was I left here on earth to live and he died? Then again I felt cheated when my labor/delivery of my first child ended in an emergency c-section to save both of our lives ~ again ~ I survived a near death experience ~ but felt cheated out of going through the whole natural child birth experience. That's a HUGE right of passage ~ I was up for the challenge ~ but God had other plans for me.
This brings me to today ~ it's been exactly one month since my spinal detethering. They knocked me out ~ opened up my back ~ exposed my spinal cord ~ detethered me ~ then I woke up. Alive ~ survived ~ again. I spent 17 months preparing myself for the decompression brain surgery that was scheduled for March 7, 2008. I was ready to hunker down and just muster through it all. Then ~ all of the sudden ~ my surgery has been canceled and I don't have any more Chiari symptoms! Just because I don't feel the effects of my dear brain tail doesn't mean it's gone ~ it's still there, but now it's fully hydrated and happy. My brain tail has received a last minute stay of execution from a call from the governor ~ so the brain tail has survived a near cauterization! Survivor
You can dismiss my post as the rambings of a fully hydrated brain tail ~ me, I am pondering my responsibilities as a survivor and how I can give back others who are going through hardships and trials.
Funny how I type in 'solo' into Google images and it brings up Han Solo ~ I just couldn't resist ~ I am such a child of the 80's! I digress ~ I have been plagued with insomnia the past couple of nights ~ I am blaming the lunar eclipse. So, since I am currently on disability and busy recovering and resting I rolled out of bed around 10:30 this morning. After grabbing a strong mug of coffee I sat down at the kitchen table and put down on paper the long 'to do list' I had been compiling in my mind while tossing and turning all night long. Ahh ~ instant relief to have dumped all that data.
I made several phone calls, crossed off at least half the items on my list. I looked out the window at the sunshine and thought for the first time in three weeks that things are beginning to get back to 'normal'. On a whim, I called to make a hair cut appointment and was elated to secure an appointment 2 hours after I made the call. My first solo driving outing was about to commence.
You see ~ my recovery instructions have been pretty vague. Don't do anything that hurts ~ duh ~ and you can't go back to work until 3 months after your surgery. OK ~ well what about when can I drive? I answered that question this afternoon ~ about three weeks. Backing out of the driveway almost felt like when you are a teenager and you are giddy with the idea of borrowing your parents car to drive around the block! To my surprise, it didn't exactly hurt my back to drive, but I did feel a little tired and slow to react to my surroundings.
So ~ mission accomplished ~ I re-established faith in myself today that I can drive ~ even if it's just a couple of miles down the road. Having that freedom is priceless to me since I have pretty much had to be chauffeured for the past 3 weeks. Also ~ as a bonus had my hair cut for the first time since December. Nothing drastic yet ~ at least not until I am officially cleared by TCI of the potential for brain surgery any time in the near future.
