The 17th of December is always a rough day for me. It has been for the last 14 years. Wow…14 years. I can hardly believe it has been that long. Today, all those years ago, changed my life. In some ways for the better. No…in MOST ways for the better, but still this day is hard for me. I always get a little bit down. I always feel a little blue, and then, on the 18th I get on with my life and remember how lucky I am.
December 17, 1996 began early for me. I had to be to the hospital by 6 AM if I remember correctly. It was the first day I was not worried about anything. For some reason I was very calm. I was also certain I was going to die. I don’t know why, but I thought I would. I was having Spinal Fusion surgery. I’d been told without it, I had maybe ten years left to live, if that. My organs would start to crush one another and death would be painful. I had no real choice in this. In matters of life or death we most almost always pick life. I am no different. However, the surgery also came with a 50% chance I would no longer walk.
I was terrified of not being able to walk. My father and Pam always made it clear if you stop walking then you give up. I was not a quitter. Yes, I have a degenerative, progressive muscle disease. The progression was slow, but it was happening. Still, I could not help but feel like if I stopped walking it would be my fault. I would not have tried hard enough. I was under this immense pressure to remain on my feet, so the prospect of not being able to walk was inconceivable to me. It was not an option.
I spent 14 hours in surgery, 2-3 days hooked up to tubes. I was in and out of consciousness barely able to remember anything. Then I was hooked up to morphine in my IV and I became a total dick. Everything and everyone pissed me off. I was too tender to move much. Every movement hurt. Trying to get me on my feet was quite unsuccessful. They told me to give it time to heal. I had grown four inches overnight and had absolutely no sense of balance. My doctors said that was normal. We’d try again later. Then came the complications.
My incision opened up. It is common for people who have taken steroids such as prednisone, as I had a few years before this for asthma complications. Then it got infected with e Coli. My doctor was at my house on New Years Eve checking my bandages. I had medicine pressed and packed into the hole in my back. It was so painful I would grip my bed railings and shake them. I was on so much medicine I regurgitated everything in me, sometimes even the pills and water. I couldn’t eat anything and every food I smelled made me nauseous. I also developed thrush and was on medicine for that, as well. An electrode from the surgery burned a hole in my hairline. I had a scab over the charred flesh. Over the past 14 years some of it has grown back, but I still have a random bald spot where the center of the electrode was. My hair manages to hide it now, because it is no longer such a big patch, but at the time, it was a scab that began to peel into my hair.
A few months passed and things got better. I could have died from my infection, but I didn’t. Yet, I still couldn’t walk. Now that I was on the mend, Pam started pushing me to get up. I went through Physical Therapy but still couldn’t stand without someone holding me up. Pam pushed me into water therapy. It helped my arms, but again I could not gain enough strength to stand. I developed a massive phobia of falling because in an effort to get me to stand, I was dropped more than once. It got so bad I would cry, scream and have a breakdown any time anyone tried to make me stand because my legs felt weak and wobbly and I felt like I could not do it. My body would be worked into exhaustion. Still, standing on my own, was out of my grasp.
To encourage me to learn to stand and walk again, while I was at MDA camp, Pam gave back my Hoyer lift to the medical company from which we were renting it. I came home to the new régime of getting me on my feet. I was required to wiggle myself in and out of bed, because I could not lift myself into it. Some nights it took over an hour for me to do this. It was physically taxing to wiggle, but asking for help into bed was not an option.
I received my first wheelchair (I had been using an electric scooter until then) in September 2007. My doctor requested I get one as it gave me much better back and neck support than my scooter did. Honestly, going into a wheelchair, for me, was a relief. Those last few years walking had become hard. I was always falling and hurting myself. I had sprained my ankles and feet more times than I could count. I missed out on a lot of social opportunities because I became too tired from walking. A wheelchair meant I could finally rest and it gave me independence to get around and participate with my peers. Some of my greatest memories are racing around my High School with my best friend, Ron, in our wheelchairs.
I did not feel like I was giving up. I felt like I was regaining my freedom and blossoming into something new…kind of like a caterpillar blossoms into a brand new butterfly. Not everyone felt that way. Parents put way too much emphasis on wanting their kids to walk and less on all the things their children still CAN do, in spite of their disability. They do not realize the massive pressure they put on their children with their expectations, while they should be encouraging their kids to follow their dreams and finding alternative methods and ways for them to attain their greatest goals.
I, personally, have begun to accept the fact that the path my disability took is not under my control. Still that day, 14 years ago, nine days before my sweet 16th birthday, will never be forgotten. As much as I am grateful for my wheelchair, it is a day like today where I feel glum about having to use it. I feel frustrated I cannot just hop up and take myself to the bathroom or slide into the shower for a hot bath. I am sad I have to have Ash lift my arms up to give her a hug. I want to curl up on the couch with her and watch a movie, but I can’t. This is the day that reminds me of all my can’ts.
Two years ago, to add to the sadness of the day, my grandmother Melba Louise Ogle Ryan, a woman we called Noonie, who baked me birthday cakes, shared salads with me and chased me around to spank my butt with a wooden spoon when I was bad (in the most loving of ways) passed away. When she went into hospice earlier in December I just knew she’d die on the 17th. As much as I miss my abilty to walk, I also miss my Noonie.
Well, the day is almost over, and tomorrow I will wake up happier. Gone will be the glum and I will return to doing everything and anything I can in my life, as a blogger/writer/editor, and on my career path for school. But…for one day I simply cannot forget…14 years alive…14 years unable to stand/walk…14 years of mixed emotions.
[tags]wheelchair, walking, Spinal Muscular Atrophy, memories, family, grandmother, death, sadness, loss[/tags]