Has it really been 14 years?

I turned 54 today. Well, actually yesterday, so I am one day into my 54th year. I can’t imagine how I’ve survived this long, considering how I’ve abused my body with sugar and salt; I smoked cigarettes for years- kicked the habit 14 years ago. I don’t exercise much these days and I know it will be the eventual death of me. I understand that I’d lose weight, that eating better and an hour of exercise would work wonders for me. Yet, I can’t seem to do it. My cholesterol is high, too. One might say I am the epiphany of our modern culture, the foster child of the tail end of the baby boom.

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The thing is, I try to blame my life situation on illness and try to fool myself into thinking I am helpless. It is a shallow lie but a formidable denial of my own authenticity. I was raised with the puritan work ethic. How can it be that such a value is etched into my sole, yet I haven’t worked for over four years?
Of course I am depressed, since I’ve chosen to avoid being responsible for myself. I admit it. I could most certainly do a lot more than I am doing regardless of my circumstance. I feel guilty during every business day since I stopped working. Somehow, I feel less guilty on Saturdays and Sundays and holidays when the rest of Americans take legitimate days away from the office. That’s right, I do feel my typical level of guilt on President’s day.

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What other foolish things have I been up to? My, I have a long list, which includes the fact that I beat myself up regularly when it comes to being aware of how little productivity I achieve. Another quagmire stands out predominantly; I rely on loans from my father to survive. Yep, the very man who raised me to be a hard worker. I have no idea as to how I will repay the debt other than when time comes I receive an inheritance from him. Yes, I’ll repay my father upon his death, and settle my debt with his estate so that my brother and sister do not get short changed.

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I’ve taken it upon myself to resolve friendships by ignoring the potential gains in working toward maintaining them. That is, I have far fewer friends these days since I became a recluse bum who lives on the charity of my family. I feel embarrassed when I see old friends who continue to excel. But I wasn’t always like this. I had to work at it. And over the years I’ve gotten good at not doing much. I learned to live my life through the portal of a computer screen for the most part. Perhaps this downfall is the saving grace that keeps me alive today, that gives me an outlet and a means of communication.

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Up till a few months ago I was in psychiatric care and attend counseling sessions every other week. I did so for four years until my psychiatrist decided my condition was stable and my therapist retired into private practice, where I couldn’t follow her since I don’t have insurance. Certainly the medications and therapy helped, and since my dysthymic condition is chronic it seems ironic that I no longer require care. At least that what they told me anyway; that my condition is more difficult to treat than someone who suffers from a major depression, but they were terminating my care despite this realization.

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The truth be known, although I’ve never admitted it, I have felt suicidal. I never told them that, nor have I told anyone, come to think of it. Since I worked as a counselor many years ago I realize that having a plan to commit suicide is not a good thing, but such is life. I could never kill myself while my parents are alive, so their good health has kept me from doing it. That, and since my sister has had mental health issues throughout her adult life, I’d feel hypocritical if I killed myself after telling her that hope is always there, if you can just see it. And even if you don’t, perhaps down the road she will. Actually, she has been doing much better theses days and I’m thrilled in this regard. I hope I see it, through this fog of war with myself.

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Another reason why I haven’t killed myself, and probably could not go through with my plan even after my parents are gone, is my brother. I love him so much and we have been close all of our lives. My committing suicide would probably put him over the edge, rendering him perpetually depressed for the rest of his life. I just can’t see doing that to him. At least that’s how I feel today. I couldn’t live with myself if I killed myself and he became incapacitated through losing his beloved brother.

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The most important aspect of my treatment was a realization that I truly am disabled. I find this strange because being told since I was a kid to pull myself by my own boot straps, accepting the fact that I’ve pulled so hard those lousy straps broke right off is quite difficult! I’m looking at them right now and if I could glue them back on and pull on them some more I’d do so, especially if it would make my father proud of me. But such is not the case. Reality has sunk in that I suffer from a series of aliments that render myself disabled in regard to work.

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If only my government would think so it might ease the burden by releasing me from family support. Yes, I’m waiting for a court date- a hearing with SSD- waiting to learn they don’t see me as disabled sufficient to receive support. I was on food stamps for a year, too. They cut me off of the $185 a month I received and still do not know why. It was the only form of community support I could get, sad as it is in the good old USA. I can’t seem to get my case worker to return my calls, so what money I received as a Christmas gift will go toward food instead of a necessary visit to the dentist I’ve postponed because I don’t have the money for a crown or two and a tooth extraction. I’ve tried to find help, but where I live doesn’t have free dental clinics; there is one place that treats people who work and don’t make enough money to afford treatment, but they wouldn’t see me because I’m not working.

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To add insult to injury, the clinic that my therapist sent me to last April said I am now intelligible for full support, since I told them back then I subside on loans I receive from my father. They said they considered it income. They said if I were paying my bills with credit cards I’d be eligible for additional discounts, or if I received money from a bank. The fact that the State has provided me with food stamps having the same report, that I don’t have to pay taxes on these loans, or that their affiliated hospital let me off of blood work bills because I qualified for their poor-guy program didn’t impress them. Rather, they said that I was responsible for 50% of the bills incurred, even after their employees said all I had to pay was a $5 co-pay at the time of services. Grrrr

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I learned that I was somehow denied this month’s food stamps on the same day I spoke with the billing department at the “free clinic”. It triggered another anxiety attack, for which I do accept responsibility. I mean, no one can force me into a panic attack without my permission. What concerned me was that I don’t have money for treatment, and without a physician or psychiatrist I won’t be able to get my medication for my recently diagnosed Diabetes, my mental health issues, my sleeping pills or Allopurinal that prevents my gout… and my anti-cholesterol drug. Crap. I’m feeling anxious again, so perhaps I should change my line of thinking here. I don’t want to use more of my anxiety pills if I won’t be able to replenish my supply. My life seems so chock full of catch 22s.

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How is it that I am disabled, you might ask at this point? Well, my key ailment is chronic fatigue brought on by nerve damage inflicted by Guillian Barre Syndrome (GBS) 14 years ago this month. Most people that suffer from the disease fully recover, but unfortunately I suffer from a few fun residuals. I can walk and talk fine, but not for long periods of time. If you look at me I don’t appear disabled at all, yet I constantly feel run down. It doesn’t help that I also suffer from sleep apnea, too. I’m on heavy dosages of sleeping pills and wear a c-pap machine when I sleep. That is, when I try to sleep. So, even when I get a good 6 hrs in I feel like crap. Mind you, the sleeping pills work in that I receive a much deeper level of sleep when I take them, but it does little to help my chronic fatigue.

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Are you getting a slight feel for what I mean when I infer that a series of illnesses combined have created the perfect storm for me? Not that I am ungrateful in that I realize so many other people are worse off than me, that I could do more for myself but do not.

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During the past 14 years of my life I’ve lived a slow spiral down to bring me to this place, this point of considering suicide. I would be lying if I told you my life was going fine prior to GBS, but I had a lot more going for me than the average person. I had a good paying job- earned $60,000 in commissions during my first year of recovery and that was after the company took me off of my base salary, and I spent most of that year on a couch in my living room. I worked hard the previous year and it paid off. I earned $82,000 the year prior to my illness, too, and even more the previous year. So, one might say that I was pretty productive prior to my illness. Now, I live on $12,000/year to pay for my meager lifestyle, after pulling in my belt substantially, using my savings to subsidize my gradual demise. Now, I’m a dependent and my retirement will consist of… ohh, that’s right… you have to work in order to retire. Rats!

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Strange as it may sound, the first three years of recovery were painful, but from a psychological perspective I had the right attitude. I began to feel extremely depressed and frustrated during my third year of recovery. That was when I realized this sense of fatigue wasn’t getting any better, that my neurological recovery plateaued leaving me with residuals I didn’t expect. Age- the lack of eating right and exercising- has not been kind to me, as well, which complicates my conditions. I really should do something about that.

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My neurologist said I would recover fully and I believed him. I did everything within my power to get well. He either lied to me or lacked the knowledge that some GBS patients suffer from debilitating chronic fatigue, among other ailments such as pain in my hands and feet, neck cramps and other muscular difficulties. I learned about how other GBS patients were suffering from similar residuals after I started to search the internet for similar cases. There are a lot of us, come to find, having on-going problems and many who are far more devastated than my case.

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I became active at the GBS Foundation-International’s web forums. The stories of suffering is heartbreaking. I did my best to help GBSers and family members who came to the site looking for answers. In doing so, I learned a lot about the disease and myself in the process. But I avoided seeking counseling because I knew I could use my determination and will power to win the day, to make me a better man by bullying through my ailments. After all, I wasn’t a sissy!

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I burned out on forum participation about four years ago. It was tough participating in a forum that wreaked of pain, suffering and perpetual illness. I’d like to think I helped a few who read my posts. I visit infrequently these days, even got myself purposely banned from the site after taking issue with a comment by another participant. I lost my cool, perhaps placing myself in a position so that I could rationalize walking away from those horrid problems. When I read posts from patients or family members concerned about residuals after just a year of recovery, I’d do my best to point out not to be concerned with residuals until after three years of recovery, perhaps a bit more.

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I’d best not get into detail as to what causes fatigue in many, many individuals with GBS. The truth is it is neurological damage that causes it, and since there are so few who contract the condition not much is being done in terms of research. This is true of most rare neurological disorders. But many of us are not perceived by the health networks as disabled individuals. In fact, if it were not for the sleep apnea I’d be a lot more functional. I mean, I can deal with the pain and even the depression, but while working I experienced an ever increasing number of anxiety attacks when I couldn’t preform the work toward the end of the week.

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But, you know, I held many jobs during the last 14 years. That is, until I get fired for taking too many sick days or not meeting acceptable performance levels, primarily because I have a tough time concentrating on the tasks at hand. I’d go out for lunch and take a power nap in my car. In outside sales positions I’d tell my boss I was out in the field calling on customers when, in reality, I would go home and take a nap. I’d close my office door and just sit there resting until the day was through. Truth is I took these jobs knowing I couldn’t do them for long, but it’s a lot easier to hide fatigue problems in an outside sales job than an inside telemarketing one, I tell ya.

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During my last job- about three years ago- I went to work for a previous manager who was my team leader during the onset of my GBS experience, who was also a casual friend. I worked hard trying to maintain the level of performance they expected from me back then, but eventually they had to let me go. Anyway, after working for him for almost three months this last go-round, I told him that I had an anxiety attack prior to a sales call, that I was late for one appointment and had to cancel my second appointment of the day… so I could drive home and get some rest. He fired me the following day. Thanks, Bob! I don’t blame him because I couldn’t do the work. I realize this now, after many hours of mental health therapy.

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I also tried working in inside sales jobs, but it seems no matter what I do I run out of steam after a few days, then begin to experience anxiety attacks. Again, if the anxiety were the only residual of my post-GBS life I could deal with it, but having an attack wipes me out physically. Frequently after having a panic attack- or cutting the grass for that matter- I have to call in sick or make up stories to cover myself as best I could.

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I know that my behavior is what eats at me and lowers my self-esteem to the point to where I don’t feel confident in doing just about anything anymore. It’s the lying and the excuses that get to my self-conscience. There are just so many excuses I can deal out before an employer or friend or lover begins to see me through tainted eyes. The bottom line is that when I make commitments to do anything I frequently back out because I don’t feel well. Period. But try and explain the truth, to remain authentic, and the consequence is a realization that they see I am unreliable.

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Why is it, then , that these people who eventually see me as unreliable don’t see me as disabled? Because I look fine when you stand before me, looking at me and how I typically move. With enough rest I can actually do constructive things, too, but on any given day I cannot count on myself to feel up to the tasks. Hence, how many times will a friend schedule an activity only to receive an excuse, or the truth for that matter, that I don’t feel well enough to follow through with a commitment? I feel horrible about not being able to achieve what seem to be simple goals. What’s more ,the less I do the tougher it is to do much of anything. Hell, I wouldn’t hire someone like me ether, nor would I in the past– prior to my condition– perceive someone full of excuses as anything but lazy and of lower character than my hard working self.

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A friend once asked me to describe the sensation I experience when it comes to fatigue. I refereed to a scene in a movie that horrified me when I saw it for the first time because it hit me like a ton of bricks. Ironically, it was a scene in from The Princess Bride, of all things. It was when the hubris character, Westley (played by Cary Elwes), was forced by the antagonist, Count Tyrone Rugen (played superbly by Christopher Guest), under a tree and into a torture chamber. The evil man drained all of Westly’s vitality, rendering him immobilized. Andre the Giant had to haul him around on his back until he regained his energy just in time to thwart the evil doer.

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That’s what happened to me. I was sapped of my vitality, but unlike Westley, it never returned sufficient for me to sward fight without consequences the following day. Imagine how unhappy the princess would have been to realize Westley would never fully recover, effecting his ability to work or have vigorous sex or be counted upon to attend the important charity events at the castle! Add to this an inability to sleep correctly, to concentrate on complex tasks, etc. Lived happily ever after … NOT!

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I recently had a similar experience while playing a video game called The Elder Scrolls:Oblivion; a role playing game in which you are the hero. Your task is to complete quests to achieve various rewards like gold or better armor or enchanted weapons… lots of fun.

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Anyway, one of the side quests called Stendarr’s Mercy caught me off-guard. In the quest I was confronted by a young man who was afflicted by a family curse called the Curse of the Consumed; the poor fellow was stricken to a bed in a church, affected by an inherited fatigue as the main ingredient of the curse. In order to help him I had to take on the curse myself, which increased my character’s level of fatigue considerably and made it difficult to wield a sward in battle or to move swiftly; my ordeal continued with the quest line until I received a blessing from a spiritual character that removed the effects of the curse. I was then tasked to trek back to the afflicted man and touch him with this blessing, thereby forever lifting the curse from him and his family line. Yikes, this freaked me out a bit in that the parody of the quest with my own life was remarkable.

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What really effected me emotionally was when I completed the quest by touching the poor guy in order to relive him of his ailment. He jumped out of bed full of energy, thanked me quickly, then burst up the stairs and out of the church like a fireball! He was cured, as was my character, but I, in my real life, was still afflicted. This condition I suffer from frequently feels like a curse! Unfortunately, no hero has come to cure me. I stopped playing the game and went into my bedroom and sulked for a while, feeling isolated by this terrible Curse of the Consumed, forever to live out my days like this.

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But it also reminded me of the many blessings that surround me each day, that I have been given life as opposed to perishing, the love of my family and friends (and two cats who spend a lot of time with me). I summarized that my true quest is to try and find something I can do that may alleviate the pain of another, as I did in the game quest. I still have potential to be a hero, far be it an energetic one. And they say that violent games are bad for you! Ha!

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The truth be know, I am a coward and not a hero. I am not at all like Christopher Reeves, who took on the life of a quadriplegic with grace and elegance far greater than what I’ll ever muster, with my seemingly trivial ailments. I aspire to be more like him, but fall short of the mark. He is my hero and I wish I could feel such courage in my own life. I’d like to feel a greater peace with my life situation, like many of the GBSers who have it far worse than me. Perhaps someday. When I think of him my issues are not all that bad, you know?

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In the mean time, I’ll try to accept the help from others with a humility even though it grates against my ingrained work ethics, to accept my limitations knowing regardless of them I can still do more than what I am currently doing. Writing this expression took a lot of effort, so perhaps this is the beginning of feeling better about myself. But if you find a hero that can lift this curse, please send them my way.