The Road to Disabiltiy

The story will begin in the summer of 1997. I was about to go on a special trip with my son to the Boundary Waters of Canada, and enjoy the pristine wilderness for 8 days. The preparation for the trip was a source of excitement. We planned to fish everyday, and the trip would include about 60 miles of paddling and portaging through the lakes of the Boundary Waters. All seemed to be going well.

I worked for an insurance company as the manager of the Loss Control Department. I frequently worked nights, and usually worked hard. This trip was to be a welcome diversion from the usual. As the trip started I began to notice early on that I could not do things like I used to be able to do. I have always been a strong man, but I was noticing that I was not the man I used to be. The kids were basically carrying Mr. "V". I had a lot of difficulty lifting the canoe, which is necessary to portage. I was having a lot of difficulty carrying the backpacks, which was also necessary for the portages. I was basically having a lot of difficulties. This was disappointing since I had better plans for the trip. Despite these difficulties we had a great trip, caught a lot of fish, saw some beautiful country, enjoyed being with my son and the others in our group, and generally I'm very grateful for a dream trip.

After this trip, I gradually started to experience an unusual fatigue. By the Fall I was finding myself sleeping on the weekends a lot. This was out of character for me. I usually spent my weekends working in my yard, doing things around the house, paying bills, etc. I found myself being very tired, and since I was not one to be lazy, I felt like if I was tired I deserved to lay down. I found myself laying down more and more. Rather than being concerned about my health, I blamed myself for being lazy. This went on through the Fall. I was convinced that this problem was a matter of getting old and lazy and that the solution was to work out and lose weight. I began working on the treadmill harder and harder. Two things seemed strange. I couldn't seem to lose any weight, and in the past I could lose weight very easily. And I could really not make much progress on the treadmill. At this point I blamed myself for all of the problems I was having.

The fatigue got worse. I found myself barely being able to drag myself home from work, and frequently when I did, I would walk in, sit down with my coat and hat still on, and fall asleep until my wife came home from work at 9:30, still with my coat and hat on. She would wake me to go to bed, and I would get up the next morning only to start the process over again. My two secretaries at work were getting concerned about me, and confided in me that I was falling a sleep at my desk. In the meantime I'm trying harder and harder to do the treadmill longer and faster, and the only result is that I am falling down trying to do this. I knew one of my knees was bad so I went to the orthopedic surgeon, he took x-rays, and basically quickly came to the conclusion that I needed a new knee. As these things usually take time to diagnose and schedule, it was March '98 before I went in for my new knee.

My new knee was great. The therapy was not difficult and I made good progress getting the use of my leg back to normal. In the meantime, the fatigue was getting worse. I finally concluded that the problem was not all my fault. I went to my primary physician, and explained the problem with fatigue. He came up with the idea that I could have sleep apnea. He got me scheduled for a sleep lab (which took months). I went and the guy came out of his control room and explained to me that I had a good case of sleep apnea. I questioned what that meant and learned that the solution was to wear a mask connected to something called a CPAP (continuous positive air pressure) when I sleep. It sounded quite uncomfortable, but if wearing it would make the fatigue go away, I was all for it, and actually in a hurry. I was getting concerned, and thought that this CPAP would be the silver bullet, and I would be normal again.

Shortly after the CPAP joined my life, in the summer of '98, My son and I were to go on another dream trip. We were headed for the New River in West Virginia. We were to do white water rafting in class 5 rapids ( 5 being the most severe). I had a huge amount of trouble on this trip. I could not take sitting in the raft for most of these rapids and generally ended up in the fetal position at the bottom of the raft. I found that after I made it to the ground to lay in my sleeping bag, I could not lift myself back up again. I felt worse about this than I did about the Boundary Waters. I began to realize that I was in trouble.

It was becoming clear that things were not going to be normal. To make matters worse, my secretaries weren't the only ones noticing my difficulties at work. My boss found out about the sleep apnea, and not completely understanding it, he concluded that I was dangerous in a company car. In truth, his concerns were justified, even though he completely misunderstood sleep apnea. Also, my secretaries weren't the only ones catching me sleeping at my desk, and truthfully my work was beginning to suffer. I was still having severe fatigue even though the CPAP was supposed to give instant relief. And now my job was starting to get into jeopardy. In October '98 they figured out a way to fire me, and did just that. This was just six months after an interim raise and after 20 years with this company. After a couple of setbacks in my life, I was finally starting to get things working for me, I had two kids about to start college, and although my wife worked, we needed my income. I was devastated and fearful of being broke in short order. And the fatigue was getting worse.

I went back to my primary physician and explained that I had lost my job and that I still had this disabling fatigue. He sent me to a shrink and they concluded I was depressed and that the depression was causing the fatigue. I guess it was true that I had plenty to be depressed about. I was put on medication for depression. Oddly one of the side effects of the medication was fatigue.

In the meantime I didn't know what to do, so I started my own company with the intention of servicing 3 agents. The company actually started business in January '99. The first agent I hooked up with was a great guy and tried to take care of me. Unfortunately, my progress hooking up with other agents was being undermined by my old boss. He would get called because he was the last name on my resume, and potential agents would subsequently ask me about the sleep apnea. So I was getting nowhere. To make matters worse I was falling asleep in meetings with my one agent, and in meetings with clients. Things were looking very grim and I had no idea what to do about it. Eventually, one of our customers accused me of being drunk, and that started some serious trouble. Of course I was not drunk, had nothing to drink, no drugs, just walking funny because my legs had started giving out. But the agent could not argue with the customer, and in an effort to placate all concerned threatened to lay me off for a while. It just so happened I had been in negotiations with another company to be their Loss Control manager. I had gotten the job the day before my agent friend needed to lay me off for being drunk. When he told me he was going to have to lay me off for a while, I was able to thank him for everything and quit.

There were going to be problems at the new job (which started February '99) that I did not see coming, and some that I was afraid would pop up and rear their ugly heads. My new boss was very resentful toward me, probably because I was pushed down his throat by the Vice President, who was the friend pulling for me to get this job. That would make things bad enough, but I had to help things along by falling asleep in the first meeting that I had to attend. Not to mentioned only a month or so into the job, the boss walked into my office and I was asleep. He waited for me to wake up. He was not a happy camper, and in some respects I didn't blame him. I explained that the problem was medical and that I was in the process of figuring out what the problem was, and needless to say I sounded positive about the whole thing even though I was in a panic. I had to go to Texas for a meeting. The boss told me that if I fell asleep I would be fired. I got some diet pills from a buddy of mine that I was pretty sure would keep me awake, and they did, and I dodged that bullet.

The relationship was not good, however. I was never really sure if someone was put up to this, but I suddenly found myself being accused of sexual harassment, over a misunderstanding. I kind of resented the whole implication, but I was not on good paper anyway. By the time I had been there just shy of six months, I said something to the Human Resources guy that made him realize that getting rid of me before six months was up would be a lot easier than waiting. And thus they fired me. At the time I was having to commute from Aurora to downtown Chicago and taking the train, the whole ball of wax. I was falling down on the street walking to the office and having difficulty not falling in the office. My body was starting to get contorted, like I had cerebral palsy or something. I found there were many things I could not do around the house and my son JJ had to do things for me. My wife had long since taken over the bills in an attempt to keep our credit from being completely ruined, since I couldn't drag myself to do that anymore. I had just been fired from 2 jobs and was in trouble with the third.

I started looking up my symptoms on the internet and came to the conclusion that I had a rapidly advanced case of MS. The shrinks that said I was depressed finally gave up and concluded there wasn't anything wrong with me that a shrink could fix. They sent me back to my primary physician. This time I told him more of the story, and when he heard that I was falling down and that I had extreme muscle atrophy in my arms and legs, he finally got a little more clever. He told me to call and schedule an MRI. I called and they said they could get me in by November. It was now September '99. I told the MRI lab that I couldn't wait that long, that if they couldn't do better than that, I would just check into the emergency room. They said they could squeeze me in with an appointment for a few days later. I said that would work. This quick appointment would be very significant to the story . In the meantime I'm dwelling on the symptoms that I see on the internet, and although I now see the foolishness of doing that, it seemed OK to a desperate person at the time. Perhaps I have not embellished enough on the consequences of this fatigue that was plaguing me, but I felt like my life was going down the toilet. I remember sitting in my office at home, just days before the MRI, fairly sure I had a rapidly advancing MS, and praying to God, just as hard as I could pray to just let me have one more day being kind of normal. My facial expression had "sick" written all over it, and my body was contorted like I was crippled. I had started having bowel and bladder control problems, and I won't even explain how bad that was. I had lost two jobs and probably would have lost the other. We were going through our savings way too fast. And prospects for a job looked grim.

The day of the MRI I asked the technician when the MRI would be read. This was a Thursday. He said possibly by Friday, but more likely by Monday I would know the results. The MRI was at like 9:30am. At 11:30am our phone rang and it was my primary care physician. He said that he needed to seem me immediately, and by that he meant now. He said that they have found out what was wrong with me and that it will be fixed, but that it was very serious. He said that I needed to come to his office to get a cervical collar, and an appointment with a neurosurgeon right away. He said not to make any quick movements and take it easy. When I went to see him, he explained that I apparently had injured my neck at some point and that the injury was rather severe. He said that the neurosurgeon would fill me in the rest of the way.

I got an appointment with the neurosurgeon the next day. That should have given me a small clue as to how serious this was. When I met the neurosurgeon, he was a great guy, but he freaked out when he looked at my MRI. He said that surgery would be necessary immediately. He asked his nurse to book me Monday and she said that he was full. He said later Monday night, and she said that he was booked up until late Monday. He said then Tuesday. So Tuesday it would be. I was excited that they would fix my physical problems, but of course some problems were not going to be fixed by surgery.

I was supposed to be in St. Louis the coming weekend for my parents fiftieth wedding anniversary. I asked the doctor if that was a problem. He said no its not a problem, but you won't be there. I said I have to be there. He said, no you have to get this surgery . I asked " won't I be better by then?" He said "No, and for your parents anniversary we will save your life." I guess I was starting to take this seriously. Well it probably seemed a little dramatic, but I went home and video taped a toast to my parents for their anniversary. I hated to miss their fiftieth anniversary, but it looked like I had no choice. It was still sinking in how serious this was.

The weekend was sort of strange as I wore the cervical collar and pretended like I was doing something different like not moving very much. I didn't move very much anyway by then. I had asked the doctor about MS, at which point I found out that it would have taken several MRI's to diagnose MS. They told me not to worry about MS, that I had enough problems for the moment. They explained that the procedure I would be getting was called a lamenectomy. The nurse said that they usually go through your neck and soon after the operation I would be as good as new. Piece of cake. Right!!

Tuesday came and I was ready to get fixed. If you have ever been in for surgery, you know what the pre-surgery was like. I was under the knife for 6 hours. They did a quintuplet lamenectomy. They cut the back off of five vertebrae, fixed the disks, and generally straightened my spine to the way it was supposed to be. They did not go through my neck. There was too much work to do to, so they went through my back. When I came out of surgery I felt very strange, and in many ways relieved. I could definitely tell something had been fixed. But the doctor told me that I was not allowed to get off of my back. I was to lay on my back until he said I could move or sit up or whatever. I had no idea how long I would be on my back. It turned out that I had to stay on my back for 6 days. On the sixth day, he said I could sit up. The sixth day was the Sunday after my parents fiftieth wedding anniversary, and my parents came up from St. Louis to see me. I think they were surprised. I had gone downhill so fast, that I'm sure I looked very different from the last time they saw me.

I was in shock when I would ask the doctor everyday if I could sit up and he would say no. By the end of six days I was going crazy, not to mention extremely constipated. The day after I could sit up, I asked if I could get an enema and a port-a-potty. This is when things started to get interesting. I thought I would get an enema, run over to the port-a-potty and take a dump. To my surprise, I got the enema, but when I went to stand and head for the port-a-potty I discovered I could not stand up. I had to be carried. What is this? I thought this was supposed to be a piece of cake and I would be better. It looked like that plan was scrapped.

I remember being hyper-emotional after the surgery. The hospital chaplain came into my room and asked me what was wrong. I told her it was a long story and she said she wanted to hear it. I told her the story and when I was finished she asked me where God was all this time. I burst into tears and told her that God had his hand on my shoulder and that if He hadn't I would have never made it this far.

I discovered soon after the chaplain visit that I would be transferred to the other hospital for physical therapy. The other hospital was a gift. It was a nice private room, modern, nice bed, lots of room, private bath. I was to learn how to walk and dress myself. That was part of my therapy. The first part of my therapy every morning was to get up and dress myself. Sounds easy enough, but it usually took me forty-five minutes to an hour depending on whether one of the nice nurses helped me or not.

We (everyone in therapy) all ate at one dining room table and I would go to meals in my wheelchair. Eventually I could get to meals with a walker. I even got to where I could navigate stairs and get in and out of a car. When I mastered all of these things, after about two weeks of therapy, I was sent home.

I was very glad to get home. I knew that my health was the most important current project, but I could not ignore the fact that I was out of a job, and not likely to be able to get one for a while. My back home experience was a little strange. My wife had to go to work, but she would leave food for me in tupperware. The first day taught us a lesson. I couldn't get the tupperware open. I didn't have the strength. I thought I was going to starve to death. I was a little disappointed in how I was doing. I had prayed for one normal day, and I thought I would be better, but apparently, at least for a while, God had other plans and I was going to be worse. The neurosurgeon told me after the surgery that I should be happy to be alive. He said that if they had not found the problem with my neck for 4 more weeks, I would have been in a wheelchair for life. And if it had taken 6 weeks, I would have been dead. I am glad that I was persistent when they tried to schedule my MRI two months later.

While I was in the hospital they discovered that my blood pressure was high. Six months after I got out of the hospital I would find out that I had diabetes. So I would be able to list hypertension and diabetes on my medical resume, not to mention sleep apnea and a total knee replacement. My recovery was slow. I was worried about getting a job and everyone else was worrying about me. I hunted for a job for the entire year after the surgery and was disappointed time and time again. I tried to pull every favor I thought I could reel in. No luck.
Finally I came up with something that resembled a job. This was February 2001. It was with a temp company as their safety director. It many ways it was like what I did for the insurance company. The guy promised certain bonuses and certain raises. It all turned out to be a bunch of bull. I had to commute 2 hours to and from work everyday. The guy that hired me had no idea what I was doing or what I was supposed to do, and I don't think he was happy, not to mention the fact that he was sabotaging my work by calling injured employees names where they could hear him. But it really didn't matter. I suddenly found myself getting worse again with the same symptoms. I started falling down frequently. I was starting to get sleepy at work. I thought this really isn't fair, and mainly tended to blame it on the lamenectomy. One day I fell down in the dining area outside of our office, and they called my wife and asked if they should worry. She worried and had me come home, and then took me to the emergency room. It was August 2001.

The emergency room took my problem seriously. They got an immediate MRI, had a couple of neurologists examine me, and a few other doctors. They wanted to continue testing , but decided they could let me go home to see my boy become an eagle scout. I was to see each of the neurologists in their office like the next week. They also told me not to go back to that job until they figured out what was wrong with me. Apparently I had had four mini-strokes. There was some fear that I could have a larger stroke. In one of my meetings with the neurologists I was told that there was something in the MRI that the neurosurgeon could probably fix. So I met with the neurosurgeon. He said I had an Arnold Chiari. It is a condition where the cerebellum tries to squeeze through the opening in the skull with the brain stem. It is a genetic problem that I was born with. Ironically the symptoms would be very much like the neck injury that I had had repaired. The neurosurgeon explained that the problem would require surgery, and that he did not feel qualified to do it.

He referred me to some quack that tried to tell me that the real problem was a brain tumor. He asked me why we didn't have the MRI done with contrast so that he could see the tumor. I told him that the MRI was done with contrast and that I didn't have a tumor and that I was there to get the Arnold Chiari fixed. My neurosurgeon referred me to someone else after that. Dr. Charbell is a renowned neurosurgeon who does hundreds of these Chiari decompressions a year. A very nice man and very knowledgeable. I was very happy to be under his care. He scheduled the surgery for a month away, January 2002. He said I would need that much time to have the tests done that I needed for him to do the surgery. This turned out to be true. There were a lot of tests prior to the Chiari decompression. He also said that they could not tell how much of an effect the surgery would have until they got in and saw how bad the compression of the brain stem was.

When I had my first surgery, I really didn't have time to request prayers from friends, etc. This time I had plenty of warning and did request prayer from everybody I could get to listen to me and there were a bunch. I took all of the tests that I needed and I was ready for the surgery.

The surgery was supposed to last about 4 hours, but I think it took a little longer. I woke up in intensive care. I really felt pretty good, I stayed in intensive care for another day and they gave me a really nice private room. I was supposed to be in the hospital for 6 days. The next morning after having only been in the hospital for two and a half days, the doctor came into my room and asked how I was doing. I told him that if he could find three large men, I would gladly kick their ass. He said "Do you really feel that good?" I told him that I did and he said I should go home. I said I thought I was supposed to be in for six days. He said, "Well, we'll check you out." They sent two neurologists in to give me neurological exams, and the conclusion was that I should go home. The nurses said they had never seen anything like it. Everybody else that they have seen getting this procedure spent the first four days in tears over the pain. I was going home after two and a half days. It was like a minor miracle. I just knew that the prayers had something to do with this quick recovery.

I went home and all was good. I felt like skipping. I immediately started to do chores around the house. I was feeling too good to be true. My prayer for just one day of being almost like normal was being answered and possibly even a great deal more. I couldn't have been happier. Four days later I got a headache. It kept getting worse, until finally I thought it was the worst headache I ever had, and we called the doctor. He said come to the hospital immediately. It was 4:00 am. The hospital was in the city. I asked the doctor if he meant the morning , and he said no, now. So we jumped in the car and headed for the emergency room at UIC in the city. Shortly after we got there and they had a chance to draw some blood from the area around the brain stem, they decided they would have to open me up and clean the incision, so I was back on the table. After they finished and took more tests, they concluded that I had an infection in my brain stem. This meant that I had to stay in the hospital until they were somewhat sure they took care of the infection, i.e. lots of antibiotics. I would be in the hospital for 10 days and suffered the entire time. At one point the incision started leaking brain fluid and the surgeon rushed in and sewed up my head without taking time for the anesthesia. Then I had to wait to make sure that my skull would not leak. I started to get a really bad headache and they explained that brain fluid had leaked into my skull and that brain fluid is an abrasive. I had to wait for the headache to go away.

I would go home with a pic in my arm, a type of IV that stays in your arm for up to six months. I would have a home nurse assigned to come to my house a couple of times a week to make sure I wasn't having any trouble administering the antibiotics via the pic and to clean the pic and my arm. I did fairly well through this process which lasted about six weeks. I felt like I was getting better, but then I started to take a turn for the worse. All of the neurologists and neurosurgeons, and doctors said the same thing. "Get on disability". So at this point with the home nurse , etc., I started applying for Social Security Disability. There were huge amounts of paperwork, and then you have to wait six months after you have applied. In that six months I went down hill. My wife ended up having a hospital bed put in the living room so that I would not have to use the stairs, except occasional baths. My wife and my daughter basically took turns coming home to feed me meals. I was asleep for almost everything and my appearance was that of a very sick man.

It seems strange that I could have required a total knee replacement, a quintuplet lamenectomy, an Arnold Chiari decompression, be diagnosed with diabetes, hypertension, sleep apnea, depression, and at one point a brain tumor, and have had four mini-strokes, an infection on my brain stem, terminated from two jobs, and walked away from two more due to health reasons in just the last few years. In order to get Social Security Disability you have to submit a report telling how many visits you have made to the doctor or lab in the last year. We had the doctors office run a printout for us and to our surprise all of what happened in the past year took eighty visits. Staying alive had taken on a new importance. Taking my blood sugar reading and blood pressure every morning, taking the necessary medications, sleeping with my mask and CPAP, exercising as much as possible, and watching my diet, all became part of my daily schedule.

It would be easy to feel cheated and be bitter over what had happened. Depression could very easily occur. But as my doctor says, I should be glad to be alive, and I am. I never would have thought we could make it without my job. But my wife found a better job in the middle of this process and we have learned to live on disability and her pay. My health continues to improve, and I am hopeful that I can be gainfully employed again some day. This may be hard to believe, but when all is said and done, I am very grateful to the doctors, my family, and to God for what I have, my health, or at least what's left of it, my family, my home, and a ton of friends. Things could be a lot worse. I have formalized my prayer regiment, and I pray everyday. And everyday I thank God for another beautiful day and for my health. I asked for one day and He gave me so much more.

As for the two insurance companies that had no patience for someone with a medical problem, they both went out of business right after they let me go. One of these companies had been in business in this country over a hundred years. I feel real bad for them.

This may not be the most typical path to disability, but it worked for me. While still using the hospital bed in the living room, I went to a neurologist. I was having other symptoms including difficulty swallowing, slurred speech, a very clumsy gait, and reduced mobility of my joints. He concluded that I had ALS (Lou Gehrig's Disease). He said that it would be difficult to confirm, but that if I got better, I must not have it. I am happy to report that I do not have it. Everyone says that I am doing remarkably better. I walk almost normal, I use the stairs without much difficulty, I drive, and my speech is clear, and I have little or no difficulty swallowing. There is hope for me yet. My wife and daughter say that I am a "walking miracle." I don't know about that, but I do know that God has taken good care of me, and all glory and praise go to Him.