Why is it that some people seem to live a charmed life. Nothing bad ever happens to them—they sail through life with nothing major going wrong.
Why is it that some people seem to live a charmed life. Nothing bad ever happens to them—they sail through life with nothing major going wrong. That is my one question—why?
I get up in the morning with a vague feeling of anxiety that almost never leaves me. I am not one to feel sorry for myself and hate being on the pity pot. Yet I feel jealous of women with their big cleavages and think about what if they got this damn disease. How about all those women with their big manes of hair, so confident that nothing can touch them. Well, this fucking disease doesn’t care about that and this life is a mine field. You can be going along, all smug, posting your “best life” on Facebook, when suddenly your life as you know it comes to a screeching halt. That is how it is—we are all one second away from disaster.
When my friend Janet got the news that she had MDS (myelodysplastic syndrome) the disease which ultimately killed her, she called it the “train wreck.” That describes it exactly –a feeling of disbelief and confusion. Any faith that you thought you had is shaken. “How could this be?” you ask yourself, knowing that you are not invincible and the grim reaper has come to your doorstep.
Having had the big C 34 years ago, for some strange reason I felt that was it. I was sure that I would never get cancer ever again—that my turn had come and I came through it. But that’s not the way things work in the world. So, I put my big girl brave face out there and made it my mission to fight this. I was determined to remain positive and I actually did. On the days I had an infusion for 3 hours I actually was in good spirits. I tried to analyze why that was so and I can only surmise that I felt cared for and loved. My friend would come over, bring me lunch, and we would chat. I guess you would say I did not suffer from many chemo side effects so I was lucky (or blessed depending upon where you come from).
I counted down the chemo cycles (I had 6) and posted pictures of me getting the infusion. People responded and I felt loved again. But a strange thing happened after the last cycle—I felt let down and depressed. One would think I would feel wonderful and relieved but I was just the opposite. I didn’t know what to do with myself and I simply felt abandoned. I was no longer special and my purpose in life, which turned out to be just getting through the chemo, was gone. I felt that I lost my purpose. I have been struggling to get that back and I am having a hard time. People don’t understand how I feel—they think I should be happy, happy, and grateful. I am grateful it is over but I am left with the residual fear of having this return. I think crazy thoughts and get into my own head that I somehow have metastatic cancer and I will surely die of this. I have a mammogram next month and my head tells me that I have cancer in the other breast now. I speak to other cancer survivors and many of them feel like me, so maybe I’m not unique, but I still can’t shake these feelings.
Logically, I know that we must “live in the day” and not the past or future because you miss the beauty of the moment. Yet I catch myself thinking about 10 years down the road sometimes and it is frightening. I engage in the “what ifs” which only increases my anxiety because the future is fraught with those nasty mine fields.
I know this is not exactly a very inspirational piece but this is how I feel. I have kept this inside of myself and whenever someone asks me how I feel, I simply say, “Fine” or “OK” when I really want to say, “I am fucking depressed and anxious”. But nobody wants to hear that—all they want to hear is that you are good so they can feel good too.
There was no lightening or thunderbolt or exact period of time or date but it came on very gradually—so gradually that I actually did not even notice the change in my body.
I was still an avid runner living in Augusta in 2011. Hindsight is a wonderful thing and we all have 20/20, but at the time, I couldn’t even fathom that something devastating was brewing. Looking back, I remember running my regular 6-10 mile route when I began to “trip.” At first I attributed this to just being clumsy, which I never was before. It is amazing how the human mind can deny and deny something that is so obviously wrong. Running, previously my most enjoyable past time, began to be fraught with anxiety about whether or not I would trip and fall. Each time I ventured out, I would lecture myself on “lifting my right foot up.” When I did trip, I would chide myself by saying, “What’s wrong with you—PICK UP YOUR FOOT, IDIOT?” But invariably no matter how much I tried, my right foot would not lift far enough off the ground, resulting in tripping. One day, after a very frustrating and anxiety-ridden run, I checked the tread of my sneakers and I saw that the toe of the right sneaker was almost completely worn down, while the left sneaker was fine. Yet I still thought I was merely clumsy. A few days before Thanksgiving, I went to Kroger to buy food for a dish and took a huge fall in the parking lot, spilling my grocery bag. I quickly got up and tried to figure out what had happened. Apparently while getting to my car, my right foot did not clear the curb—more like dragged—and down I went. Fortunately or unfortunately I seemed to be walking normally so this pattern continued until August 2012.
As an obsessive runner I had multiple knee surgeries over the years for a ripped meniscus. In August 2012, I underwent one more surgery on my damaged right knee. I had every confidence that I would recover as I had before, although I was told I should not run anymore. I accepted that and I was just grateful that finally I would be pain free. However, my knee never got better and continued to be so painful where I could walk only with a marked limp. I tried all kinds of shots in my knee but it would not heal properly.
In addition, for a while I had bad lumber pain, especially in the morning. I thought I just needed a new mattress and, no matter how many mattresses I tried (I drove the mattress store employees crazy) my low back pain persisted. But it was not only lumbar pain—my whole body hurt and my toes were numb. I went to my internist, and after doing a cursory exam he concluded that I didn’t have any disc involvement and put me on an anti-inflammatory medication. I asked him if I should at least get an MRI, and he rejected that idea due to the cost. I emphasized to him that MY WHOLE BODY ACHED, but nothing was ordered. I finally decided that I would “self-refer” to a neurosurgeon. I went to the Neuroscience facility on Steven’s Creek Road and saw Dr. B, an osteopath, the first person before referral to a surgeon. He ordered a lumber MRI and it revealed spinal stenosis, pretty common in someone my age. We decided on a course of epidural steroid injections, which proved to be mildly successful for about a week. Then after two courses of this treatment, the pain returned and he finally referred me to one of the neurosurgeons (Dr. S) in that practice. My surgery was scheduled for Election Day 2012 and I had high hopes of becoming pain free again. At that time I was a massage therapist, and it was very difficult to practice my occupation and bend over, trying to relieve others’ pain, when my back was killing me. I went home from the hospital the next day with a plan to do lots of walking and get myself back on track for a quick recovery. However that was not the way it played out. Within a week, I was having balance trouble and within two weeks I was reluctantly using a cane to get around. My right knee was just as painful as ever and I could not walk without a limp and cane. I began to have nerve pain that I almost could not identify because I had never experienced that before. I frantically searched the Internet for some type of explanation and came up with “failed back surgery” as the culprit because I read story after story of patients who never recovered from lumbar surgery.
Now my 4 month long nightmare began in earnest. I went back to the Neuroscience practice and spoke with the surgeon’s very unsympathetic physician’s assistant who said, “give it time” and that the “nerve root needed to heal.” So, I tried to do just that, but instead of seeing improvement, my symptoms became worse and worse. At this point, I had severe burning and tingling nerve pain from my waist to my toes. I had a mysterious pressure on my abdomen and back whenever I stood which was relieved only when I sat or lay down. My right leg was cold to the touch, beginning to atrophy, and I could not lift it properly, much less walk without a cane. What made this so nightmarish was that NOBODY BELIEVED ME. Each time I went in for a check up, I was told over and over, “Well, this is so unusual. We’ve never seen this before”, as if it must be psychosomatic in nature—that was the implication. In the meantime, I was so debilitated at this point that I had to keep crutches and a cane by my bed so I could get into the bathroom at night. I actually drove, but with my heart in my mouth because my right leg, which was partially paralyzed, didn’t function properly. I had so many close calls that I knew God had to be traveling with me each time I ventured out. I had to lift my leg up with my hands to get it in the car and my biggest fear was that I would kill a person or family while driving. When I went shopping I would try to park as close as I could to the store, sometimes abandoning my mission because it was too far to walk. Everything that we take for granted was an effort and it gave me a great appreciation for what disabled people deal with on a regular basis. I asked the physician’s assistant if she could take pity on me and write a note for me to get a disabled car tag, but she refused stating, “Those are only given to people who are totally paralyzed” which is untrue. I ended up getting one from my orthopedist instead.
I went in for another LUMBER MRI because they wanted to see if the surgical site gave them any clues, which it didn’t. I was suffering, both physically and psychologically and I began to lose hope. But I soldered on and each day I would wake up with HOPE that maybe the nerve root was finally healing and maybe, just maybe, I could at least walk a little better. Some days I would fool myself into believing that there was a tiny bit of improvement and my mood would be bolstered. But that positive mood was dashed the next day when, upon waking, it became apparent that I was not any better, and in fact, probably worse. We all know that HOPE is everything, and I had none. So, at this point, I began to consider suicide every morning, even planning the method. I believe that what kept me going was that I employed a 12 step program tool of thinking in terms of “one day at a time.” I would think, “OK, whatever you want to do, you can put this off until tomorrow” and that kept me going in the world for another day. On days that I was so depressed, I would force myself to go to the gym, and although I didn’t go into the regular gym because I was embarrassed by my debilitated state, I went to the disabled pool. It was there that I would find some gratitude because, although here I was, withered polio-like leg, ambling into the pool with the use of my cane, I saw people far worse than me—quadriplegics with happy expressions in the pool. I saw wheelchair-bound people and said, “Thank You God.”
I continued going to the Neuroscience practice for checkups, only to be shuffled back and forth to various departments. All the while, they were baffled by my deteriorated state. One day they decided to perform an EMG and I was so hopeful that finally they would find the reason for my crippling condition. It was New Years Eve of 2012 when, while sitting in my car, I received a call from the nurse stating that, “The EMG showed nothing but an old radiculopathy.” In English—nothing new and nothing that would account for my deterioration. That day was significant in that I just sat there, totally numb and disbelieving, my last hope dashed, and thought that I could not bring myself to go on in the world. A friend of mine happened to see me, and asked if I was OK and suggested we go to Starbucks, which saved me for another day.
The next person to see me at that practice was the pain management doctor who gave me the news in an abrupt manner, that he could not help me. He prescribed Lyrica and Neurontin for nerve pain, but all it did was cause me to fall because it made my muscles weak, so I stopped that immediately. I was so angry at his lack of empathy and bad bedside manner but it turned out to be the best thing that happened because he referred me back to the original doctor, going full circle. Dr. B, the osteopath, sat and actually thought about what might be going on and what my options were. He treated me as a person and his kind, thoughtful manner was appreciated. The new plan was to embark on yet another course of epidural steroid injections, but suddenly a thought occurred to him—what if we order a thoracic MRI? After the MRI I went back to his office with no expectations, but maybe a little hope. As soon as he pulled up the MRI on the screen, his eyes lit up because the MRI revealed a small benign tumor (meningioma) pressing on T3 of the spinal cord. Boom—my world exploded in a good way. He excitedly said, “Here’s your problem. This meningioma is pressing on T3, causing all your symptoms.” It was as if God came down from the heavens and blessed me—I was so ecstatic that words cannot describe it. I am brought to tears when I think of that moment. He quickly referred me back to the original surgeon, Dr. S, who was shocked and humbled. I actually did not want to use the same surgeon, but I realized she knew my case, and I could get this done very soon. Just prior to surgery I discovered an article from a Japanese case study that said, “If a patient is not recovering from lumber surgery, the surgeon should consider the possibility of a thoracic meningioma.” I sure wish I had seen that article months before, but at least it was finally correctly diagnosed. The spinal surgery, scheduled for a week later, was rough but successful. Right out of the recovery room, I clearly remember me lifting my right leg, unaided, and being elated. After a hard 5 days in the hospital, in severe pain, I was released. A home care nurse was ordered for 2 weeks and I dismissed her after a week. My walker went into the garage along with my cane and crutches. I am athletic and I began to recover so quickly due to my previous good shape and I began going to the gym again. I had to be careful that nobody slapped me on my back for a while, which would send me to the moon but other than that, it was fine. My damaged knee began to heal, and my atrophied and cold right leg began to warm and plump out, looking normal again. Here’s the thing, I was bitter at first for all the doctors who I felt failed me starting initially with my internist and I even considered hiring a lawyer to sue. But, I then began to think about gratitude and forgiveness and by the grace of God, a solution to my suffering was found. I began to think that maybe my travails helped me be more empathetic to the disabled, an experience I never would have had otherwise. On March 1st it will be 4 years since I got my life back. But, each time I perform an otherwise unremarkable feat such as walking briskly across the room, or climbing stairs unaided, I am in awe. Sometimes I am merely in Walmart and I marvel at how fast I can walk, or in an airport, briskly passing people on the way to my connection. It is amazing and miraculous and I will never stop being grateful.
I dive in after my little boy who has fallen into the ocean, frantically calling out to him, “Baby, baby, where are you?” I spot him underwater, slowly sinking, and I swim toward him, extending my hand, “Baby, baby, grab my hand. PLEASE GRAB MY HAND!” He stretches his arm out toward me but doesn’t quite reach me and continues his slow motion descent further and further down. I call out to him again, “Baby, PLEASE GRAB MY HAND”, and he makes one last try, and almost makes it but just as his fingertips barely touch mine, he slips away. As I watch helplessly as he descends deeper and deeper into the ocean depths, a sense of hopelessness and total remorse engulfs me, realizing that I can never save him. Then I wake up.
I am attached to my son. I am he and he is me—we are one and we always were. We are attached surely as if our livers, or lungs, or hearts were in the same body. I feel him and I cannot separate myself. I know for sure that I will not survive if one day I get the phone call that I have been dreading for so many years. I will cease to exist, if not physically, but spiritually—my soul will surely die and time will stop. I wonder why God puts people in the world for suffering while others live a charmed life. I go through each day, trying to become a “Lasagna noodle” and I am sometimes successful. But, alas, that serene state never lasts because I cannot get the vision out of my mind of my child, being shunned by everyone, alone, and looking like the Unabomber, hoody, sunglasses, and surgical mask, trying to navigate the world—running from all the entities chasing and trying to kill him.
Mental illness has taken his soul just as if he were a victim of a Body Snatcher—for he kind of resembles himself, but his essence is gone. He has become “someone I used to know” but don’t anymore. I can fool myself on some days and sometimes when I am at Church I can pretend in my daydream that he is sitting right beside me, worshipping God and feeling the rhythmic beat of the Christian Rock band. I can daydream that he is OK now and that he is back in his right mind. A sense of peace and serenity surrounds me and for a short period of time I can actually believe that anything is possible and I have hope again. But then reality creeps back into my world and I know I am powerless.
Today I have come to the realization that I can never save my boy—only God can. Unlike when he was a baby, he is a grown man and I have no control in his life. Although I had that dream so long ago, I can still remember it because it never felt like an actual dream—more like a premonition. I can pray and hope that one-day the stars and the moon will align and somehow he will be saved. But realistically I do not feel that will ever happen although I still hold out hope; when you lose hope that is the end and I am not ready to accept that yet.
This is my Testimony that I wrote a number of months ago. It has actually been 3 years and 4 months since my surgery but I wanted to post this because I had not done so before:
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 one of my doctors 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.
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.
When I was a child I remember thinking that in the far-off futuristic year of 2000 I would be “old” at the age of 48. How funny it is that one’s idea of what is OLD changes so drastically as we rapidly (and it happens so damn fast) approach the age that we thought was OLD before; we keep on re-setting the bar. I was really depressed when I was about to turn 26 because in my mind, once you passed 25 you were close to 30–that dreaded age. In the movie Planet of the Apes (which came out when I was 14) one of the characters famously said, “Don’t trust anyone over 30”, which was the young people’s anthem during that time period. And how about that movie, “Logan’s Run” where nobody in that society was over 29 because you were “put out to pasture” at the ripe old age of 30. You know you’re getting older when you begin to think of 45 as “young” where you used to think of it as OLD. Each time I hit a milestone I want to believe that I am still young, and in my mind I am. In many cultures, an older person is respected, but not in the U.S. When was it decided that once you turn 50 or (God forbid) 60, you became less valuable than you were when you were younger? As I approached that dreaded age of 60, I felt less and less desirable, valuable, and worthwhile. I literally spent an entire year of my life dreading that number. I admit that part of that was my own prejudice derived from my impression of what an “older” woman was. But the media also perpetrates that age prejudice (except for celebrities—where age doesn’t seem to apply) where they lump everyone into the “senior” category once you turn 60. It’s strange that you could be 59 one day and then the next day when you turn 60, you are automatically deemed “elderly.” That word automatically conjures up people in rocking chairs, whiling away their “golden” years, waiting to die. Elderly implies that a person has no goals or dreams or aspirations. It implies that these people don’t know how to use a computer, or text, or use an iPad, or an IPhone, or other gadgets deemed too complex for their rapidly deteriorating brains. The image that one gets is of dumpy bodies, unable to run, spin, workout much (except the Silver Sneakers class). That whole picture could not be more wrong because just like anybody of any age, there are a great many variations of how each of us age. I for one was very debilitated before my spinal tumor was discovered, but before that I had been a vital and athletic woman of a certain age, and prided myself on it. When I was ambling along with my cane, I felt truly OLD, but anyone with a tumor compressing their spinal cord would have the same symptoms and probably felt the same way. Once the tumor was removed, my recovery was rapid and I returned to my workout regimen, gradually increasing it and one year later, I am almost back to pre-tumor form. But what I know for sure and I wish the younger set would understand, is that no matter what your age, you are an individual and if you were so inclined to be very goal oriented, and vital, you will not stop being so. I wish I could change society’s attitude about aging, but what is most important is changing my own attitude. Until I can look at myself (and the hell with other’s opinions) and feel beautiful (inside and out) nothing will change. I still have a long way to go, but the more I recognize my attributes and stop focusing on my physical flaws, the more I will learn to value and love myself. Like anything, that is a process and hopefully someday I will achieve this goal.
Every so often, I find myself getting impatient with someone ambling across the street with a cane. It’s so easy to forget that less than a year and a half ago, that was me. Sometimes when I quickly get up from a seat, and stride very briskly to the other side of the room for something, I find it amazing. Unlike most people who are not impaired, I am acutely aware of how well I simply “walk” and never take it for granted. I know that just plain “walking” without losing balance, fear of falling, or having to hang onto the walls is a gift. Sometimes I become aware that my feet, belly, legs, and back are no longer numb and tingling. I look at my right leg, which was withered as if I had polio, and see a nice, plump muscular leg again. I know that not having my crutch parked beside my bed for help in the middle of the night, is something I never thought I would experience again. Just like anything, it is human nature to not appreciate what you have until you lose it. Things that I thought I would never do again, such as running (a run/walk now) I am doing. I was a prisoner to my disability, never being able to just pick up and go, and I will be forever grateful for that miracle bestowed upon me. OK, if I had not persevered and kept insisting that something was wrong with me, and not just accepted a life of an invalid, I would not have had that “miracle.” So, it all went together and my tenacity was in itself, divine intervention, I believe. When I remember to practice gratitude and appreciation for how I was literally given my life back from the brink, I have a better day. When I focus on the same old petty, annoying, neurotic insecurities (which I will probably never totally lose) I am lost. I know that I have been given a daily reprieve and there are no guarantees in life, but for now, my life is infinitely better than it was, and I cannot forget that.
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!
Miracles can come in all shapes and sizes; the trick is recognizing them. I don’t think that miracles have to be huge–sometimes they happen very quietly, and would go unnoticed by anyone else other than the recipient. An example of an amazing miracle for me was, after months of physical deterioration and suicidal hopelessness, the culprit of my symptoms was finally discovered. The ensuing surgery and recovery over the past year has been nothing short of miraculous. Just walking, having balance, working out vigorously, driving without fear, are activities that others take for granted, but I am in awe. Sometimes miracles come in baby steps. After being diagnosed with a potentially terminal illness, my wonderful friend Janet was at the point of giving up. She was having chemotherapy to hopefully prepare her for a possible stem cell transplant, but her blood counts were not good. But shortly afterward, she called me with great news–it seems her blast counts had dropped to the right level, clearing the way for her stem cell transplant. Now, about two months post transplant, she is doing amazingly well with her new immune system (acquired from her formally estranged brother). It has been a long haul but if that is not a miracle, then I don’t know what is. My friend Jane, who has MS, has been suffering from swollen feet for four months, which was a big mystery to her many doctors. She finally put the puzzle together and learned from the pharmacist that a drug she was taking (which she didn’t even need) was the cause. The swelling is abating gradually, which is a real miracle. If you look around you will see miracles in your every day life. But recognizing them when they are not the burning bush variety doesn’t always happen.
There are no coincidences in God’s world; sometimes when you think a relationship is dead it is resurrected by someone beyond the grave. When I was a kid, I used to spend so much time at Janet’s house that I was almost a family member. However, her older brother was such an annoying bully that I tried to avoid him when I could. She was nothing like him and as the years passed, and they both went their separate ways, their relationship became more and more fractured. There was so much animosity between them over the years, which grew and grew. Michael had a very dysfunctional relationship with his Mom, and was jealous of Janet as well because he felt she was the favorite. The last time Michael was at Janet’s house, he had a particularly violent argument with her husband. But this was just the culmination of years of misunderstanding and anger. After that Michael was banned from her home and they completely lost contact for years. But I guess her Mom had other ideas. Her Mom gradually began to show signs of Alzheimer’s disease and Janet dealt with this, eventually obtaining guardianship. At this point, she lived in Georgia and her Mom nearby in S.C. All this time, Janet lived in fear that her “crazy” brother would somehow come swooping down and cause trouble. He did not agree that she required care in an assisted living facility, but he never offered an alternative. Just before she died Michael got into a huge altercation with his Mom, while visiting her. He ended up driving away in anger leaving her standing outside of Walmart. He did come back for her but this was so horrifying to Janet and confirmed that he was still the same old loose cannon. But, she had not really heard the entire story. So, when her mom died at 85, Janet was sure that her “evil” nutcase brother would show up, demanding his share of her estate. But, the opposite occurred; he was strangely reasonable. Since there were estate matters that required both of their attention, she had to force herself to reestablish a relationship. When she absolutely had to call him, she always tried so hard to just leave messages and not speak to him directly. But, somehow, she ended up actually talking to him, and listening to his side of everything. They actually began a real relationship; one that they never had before. Over a period of months, they began to call each other, talking for hours about everything. If that was not miraculous enough, when Janet was diagnosed with MDS, she needed a perfect HLA match for the stem cell transplant. She asked him, not knowing if he would even get tested, and thinking he probably might not even be a match. Most often a same sex sibling is a match, but he agreed to be tested and turned out to be a perfect match. He has agreed to be her donor, and will effectively save her life. Recently they were both in Atlanta for some testing (where the SCT will be done) and her husband, Bill, took a picture. Janet texted it to me and it was so moving, seeing them both sitting close together and smiling. To make it even more perfect, Michael said, “Listen Bill. I just want to apologize for speaking to you like that the last time I was at your house.” Wow, that just about blew Janet away. Bill accepted and Michael and him were chatting throughout the evening. Who would’ve ever thought that would be possible? I told Janet that her Mom arranged that reunion. I think she is smiling down on them now, knowing that there is finally a bond. Coincidence? I don’t think so!
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