Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace my doctor ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.
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!
No Improvement – 12/5/12 – Wednesday – I woke up in pain because I am laying off the ibuprofen due to my impending facial surgery on the 11th. I really don’t realize how much the ibuprofen helps me. I took the stupid steroid pills which so far have yielded as much of a result as the surgery itself. I do my exercises at home, trying to remember all of them from PT yesterday. I had a little hope yesterday because the therapist gave me some, but left to my own devices, that hope rapidly dissipates. The other night I went to a meeting and saw Frank who had spinal surgery the day before I did. He is doing great and improving rapidly. That stuck in my mind and I know that I should be happy for him yet I cannot help but feel jealous and angry. Then today I went to a meeting in the afternoon only to see yet another person who had surgery last week and is improving. Yet, here I am, 4 weeks out and I have literally no improvement, and I am in fact worse, in some respects. I cannot walk properly and my right leg is weak. I drag my foot and am scared while in the car because my reaction time is not good. It all came to a head this afternoon and I blew a gasket. It started because I was doing my cleaning, which takes me forever. Then I started to get resentful because I thought of Frank who only has to concentrate on getting better and has a wife to clean and cook. I, on the other hand, have to do all this by myself. I cannot just let my house go to pot; it needed cleaning but it wiped me out completely. Then I got angry and resentful that I have to do this alone, and it snowballed from there into a full-blown meltdown, complete with crying and ranting and raving. I called Gail to see if she could speak to Maudy (a spiritualist) and call me with some guidance. I could not stop crying while on the phone, and must have sounded pathetic. This is just too much for me to take on some days, and the trigger was seeing others improving while I am left in the dust with no discernable idea of when or if I will get any better at all. It is also so frustrating that I cannot talk directly to the doctor.