Being disabled; that is something that most of us who are lucky enough (and it is luck) to be able-bodied, don’t even consider. I was one of those smug, athletic people who, although having compassion, had absolutely no comprehension of the trials and indignities of the disabled. My symptoms actually came on very gradually, losing balance, dropped foot (although I didn’t recognize it), and constant pain in my entire body. When I look back at this I failed to put these symptoms together and just treated each one as it came. It started out with my knee surgery, which I never seemed to recover from, and it progressed to numbness of my toes, and bad lumbar pain. I was diagnosed with spinal stenosis, had surgery which I expected to solve the pain problem, but as time went on, my life became a nightmare when I actually became worse and only 2 weeks after the surgery, had to use a cane. The worst part was that I began to realize that I had extreme limitations not in just walking, but just in everyday life; things I always took for granted. Driving (if that’s what you’d call it) became a challenge because my right leg was so weak (partial paralysis) that it was an effort to move my foot from the gas to the brake pedal. So then I would compensate and press on the gas pedal extra hard, which would actually deactivate the brake, causing the car to lurch forward and then I’d have to slam on the brake. I had so many close calls–and can only thank God that I didn’t slam into people or cars, killing someone or myself. I would have severe anxiety, even saying a prayer in the car, each time I had to drive. I’d start stopping the car way early so I didn’t run into the car in front of me. I’d drive over to Walmart and when my parking space was too far, I would ask myself, “Do you really need that cheese?” and I would just drive away. When I did go into the store, I’d walk around with a shopping cart (even when I had only one item) because it provided some stability like a walker–which is really what I needed but my pride would not let me use it. In Starbucks, I would just abandon the idea of getting to a specific seat if it meant maneuvering past people. When standing talking to people, I would notice they would have their arms out, always ready to catch me, because my balance was so bad. But the main thing I noticed about being disabled was the shame, humiliation, anger and helplessness I felt in public. I was angry because my body would not do what I wanted it to. Once when my nerve pain was through the roof, I went to the Y, only to discover that the Adapted Aquatics (disabled) pool was closed. I then decided to try using the hot tub, but once I managed to get in, I literally could not lift myself out. The entire time I was in the tub, I wondered how I would achieve that feat, so I could not even enjoy it. I finally managed to grab onto the railing and crawl out, all the while feeling totally embarrassed. When I tried to use the regular pool, I could not climb in and out of the small steps; very humiliating. It is so hard when your body just does not do what your brain says. These were constant indignities that the average person does not experience. But, one thing I noticed was the feeling of being invisible–people don’t want to look at you when you are disabled. Even the doctors abandoned me because I had symptoms that they couldn’t pinpoint. You get looked upon as if your brain is disabled, not just your body. I was lucky enough to finally escape that nightmare and will be forever grateful. But what about people who have a chronic, progressive disease such as MS, where there is no cure, only management. My friend suffers from MS and she has to rely on others to do basic things for her, such as laundry, shopping, driving to doctor’s appointments, etc. She cannot go anywhere unless it is prearranged and often times her “ride” does not show up or is late, necessitating her to postpone or cancel her appointment. She must rely totally on others and her autonomy is non-existent. It is a constant battle with the medical profession, grocery stores, caregivers, family members, and she does not have control of basic everyday things that most of us take for granted. Even her immediate family has abandoned her because in their eyes, she takes too much pain medication, although they have no idea that pain is one of the side-effects of MS. When you are disabled, life is different and one cannot understand it unless you’ve have had a glimpse into that world. I cannot say that I was lucky to have had the experience I did, but it showed me how the world views the disabled. It is amazing how many people don’t understand what it is like as a disabled person, and think that it couldn’t possibly happen to them. But I am here to say that it CAN and it DOES happen, when your life is going well, and you think that you are golden, and nothing can touch you. But just like anything, you cannot truly put yourself into another’s place without experiencing their pain. What it comes down to is that anybody who is “different” becomes invisible, be it not being able to walk, having a deformity, or being a little person. It is human nature to first want to stare, then look away (and pretend that they can’t see it) at the same time; just like a fatal car accident on the expressway, where you just cannot stop staring because you keep thinking, “Thank God that is not me.” But it can be!
EMG – Saturday – December 29th – I went for the EMG yesterday and it showed some abnormality in the L5 and S1 levels of the spine. He said that this may account for the peculiar symptoms that I have in my legs. Monday I am calling and requesting that they send me for a CT scan before my appointment on Jan 7th. If I need to have additional surgery, I don’t want then diddling around for a few more weeks before they get me in. I want to have it and begin the process of healing again. I saw Michael who has had lots of experience with botched back surgery and she suggested her doctor. But, who knows if I will get to see him. I will try the current doctors and if they keep waiting and waiting to see me, then I will try someone else. I cannot and will not live a half life, especially if there is a way to be fixed. These doctors have no compassion and they have no idea how horrific it is to wake up each day with absolutely no change and to be told to “be patient” when you know that something is totally wrong and you keep getting the run-around over and over. Of course I am not progressing; they didn’t totally address the problem!!! I will demand that they get the next test in ASAP and if they are uncooperative, I will see another doctor; simple as that!