Friday, January 21, 2011

My heart breaks for Gabby Giffords....

When Gabby Giffords was shot everyone noticed. It was all over the news, I saw it in my friends' Facebook statuses, it was part of everyone's conversations. Today's stories about her was barely an "also happened" but the truth is today, as she leaves the hospital and heads for rehab, is when her fight really begins. For the last two weeks everyone around the country fought with her, now she begins the much harder part of her journey, battling on her own to regain her life.

It seems strange if you have never been where she is, that regaining your life would be harder than the battle for her life she has been in for the last two weeks but it is. During the last two weeks she has pretty much been in the hands of others. The surgeons, the doctors, they could do things to help her, to make her better, to ease her pain, but with entering rehab the battle becomes hers. Others will be there, her husband, her physical therapists, her occupational therapists, her doctors. But they take on a very different role, they are now there for support and instruction but the work, and ultimately the outcome becomes hers to own. It is an incredibly frightening stage she is entering. She will fight this battle as much within her head as she will her body.

When I read yesterday she was going to need to learn to walk, to use her hands and to communicate it my heart broke, because except for the speaking part, I have been where she is, 16 years ago this week actually.

Despite it being over a decade ago I can remember my first days after becoming paralyzed as if it was yesterday. I can remember every thought, emotion and physical sensation. It is truly part of who I am.

For those that haven't read the whole blog let me catch you up. In January 1995 I was 4 years into my battle with Pseudotumor Cerebri (PTC, also known as Idiopathic Intracranial Hypertension or IIH). To that point I had had multiple shunt and eye surgeries, around 75 spinal taps, meningitis, taken every medication on the planet and spent more time in a hospital than I care to recount). My disease was fully out of control and another lumboperitoneal shunt was my only option. At that point surgery was routine for me, this one turned out anything but. During the surgery the shunt displaced and resulted in significant damage to my nervous system and I suffered at least two strokes. Unfortunately the surgeon did not acknowledge what was going on (it would take another couple days til I was even fully believed and we had answers). I couldn't move. I kept telling them I couldn't move, I remember saying it over and over and being told to relax it was nothing. I was sedated and moved to my room. Even after I came to in the neurosurgery unit they weren't prepared for what was going on. I remember calling my neurologist in tears (because no one, including the surgeon, had let her know yet what had happened). By that point all I knew was I couldn't use or feel the entire right side of my body, I couldn't roll over, I couldn't do anything. Had the phone not been dialed for by a nurse even that would have been impossible.

It was all too much for my brain to process, and as I have read about Representative Gifford the last two weeks I try to imagine her waking up to her new reality also. It's a moment I cant even describe. In one minute you realize the simpliest thing you used to take for granted is gone, and you have no idea if it will ever come back. You are still alive, but beyond that NOTHING is like it was a few hours before. Terrifying, overwhelming, unreal, helpless, surreal....are the words that come to mind but they hardly touch it. You keep hoping it is a joke, but you slowly wrap your brain around the reality that it isn't.

The worst part is that no one can tell you if or when you will get better and what better will mean. All those people you thought had all the answer are now just as clueless as you are about what the future holds. You try to read the faces, the looks for the words no one wants to say when you ask questions. You try to hear the whispered comments or see what they are writing to know what they aren't telling you. But the truth, when it comes to the brain and nerve damage, there are no answers anyone can give you. Some people make an instant full recovery, some never get anything back and everything in between. In my case it has been 16 years and it still changes, even recently (the last few weeks) I have noticed a change in where I feel and where I don't on my right side.

For Gabby her next phase will begin today as she enters the rehab stage. She will spend her days with physical and occupational therapists learning to do the simpliest things, holding a pencil or a fork, brushing her teeth, standing, using a walker, tying her shoes.

They seem like such simple things when you write them or say then, we teach them to infants and toddlers, but they will take Gabby days, weeks, months to learn, if ever. It is hard, scary and frustrating work for an adult to be patient doing things over and over, often not well, that we know we should be able to do.

I wasn't very good at it relearning these basic skills. I would get angry at myself, at my body, at those around me. Even though none of it was my doing, or my fault, I felt humiliated, guilty, embarrassed that I wasn't capable of these childish tasks. I remember throwing a handful of marbles across the occupational therapy room because I couldn't pick them up with my fingers on my right hand, I remember laying on the floor in my hospital room crying because I couldn't figure out how to get up when I fell and refused help with it, going barefoot for days because I couldn't face the shoe laces again.

I wish I could say that part gets any easier, but I still battle that at times, as in some ways I am still in that rehab and working on some of these items in the gym. And sadly I handle it just as badly 16 years later. I feel like a complete fool when we are working on me trying to learn still to manage stairs, or when my right hand wont grip a weight right and I have to hand it off to readjust it. I have clothes I would love to wear but refuse to take out of my closet because my hand cant manage the closures on them. I have activities I would love to be part of but wont try because I dont trust my body. I don't tell anyone these things any more, but I still sit and cry or swear over them to myself.

The pace of rehab far outlasts the interest of a public who sees news happen in cycles lasting minutes, of people's concerns which will move on and wane in days or even of some of those around Gabby who will tire of it after weeks or months. And even for her therapists their belief that she can go further will also end, they will eventually discharge her to live with whatever she has gotten back and with hopes she will go further, but with no promise that will happen.

Yet for Gabby, and anyone else who has to relearn to use their body, time is unending. You don't have an option for out or to be done, or to move on. The time drags slowly and painfully into years and decades, but life is never the same. The external scars heal, people forget what happened, you learn to cover it up, to work around it, to make it invisible to many, but as much as I keep seeing the words "full recovery" in news stories, I know from being there that is merely a medical term. Ms. Giffords life and body will never be completely familar to her again, she will spend the rest of her life trying to relearn. My heart goes out to her!!!!

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