I know, I seem to write a lot of “open letters” – but mostly I write them as open letters because I have very low expectations that anyone with any authority in such matters would actually care about what I have to say. Even so, I still need to try to express it – “get it out of my system” so to speak.
This one is to the judges who decide eligibility for US Social Security Disability programs.
We’ve talked once, and you’ve been in contact with my lawyer several times, about my pending claim for disability. The fact that I have a permanent military-service-related disability is well documented and not in dispute. You do seem to have some issues over what some call my acting “against medical advice” – so I thought some explanation would be called for.
I first had trouble with the leg that is home to my disability one week before I turned 18 years old. It took the US Army 3 weeks to find the problem, do the biopsy, and give me a diagnosis (bone tumor) and treatment program. I was in severe pain the entire 3 weeks, and could not walk at all due to not being able to put weight on that leg. After the biopsy, I was informed that I was permanently disabled. It took 6 months for me to be willing to believe that – 6 months during which I returned to the hospital over a dozen times for stress fractures around the biopsy site.
Becoming convinced that I actually did have a disability, I then began to follow “medical advice” – to the letter. I never exceeded the limits the doctors imposed on me, took the pills they gave me for pain, did the physical therapy they assigned me, and 6 months later had recovered enough mobility to walk unassisted for short distances. The US Army surgeons who worked with me said I would NEVER be able to exceed walking one mile per day – total. That includes the trip to the shower, trips to the bathroom and coffee pot, going out with my wife – everything. Not more than a mile. That was the high end estimate back when I was still young and mostly fit at 155 pounds.
I’m now over 50 years old, and my most recent trip to the bathroom scale put me at 224 pounds. I have trouble walking around the block. Still, that isn’t really what this letter is about. I had my first migraine headache about 20 years after that biopsy. I had been taking prescription strength pain killers for the pain in my leg for 20 years. During that entire time, nobody ever once told me that migraine headaches are a known side-effect of long term use of pain killers. Even after I was diagnosed with migraine headaches by the St. Louis VA hospital, nobody shared that piece of information. Not once was I told that I was buying 20 years of nearly-normal functionality by sacrificing the rest of my life. I had to find a copy of the Physician’s Desk Reference and learn it on my own. But, if you look in the fine-print information on every drug I was given for that pain over the previous 20 years, it is there to be found. Tylenol, 800 mg. Motrin, Tylenol 3 with Codine – and several others that are now over-the-counter – they all state in the fine print that the migraine headache side-effect is a known possibility.
Yet you think I should continue to trust the very same types of people who were never once honest with me about the possible harm their treatment protocols were doing. Even worse, the ones I work with now won’t discuss the implications of the drugs they want me to take for the migraines, either. If I were to blindly follow their recommendations, how much worse can I expect to be when I turn 60? Or, fate willing, 70? Are you honestly suggesting that I throw intelligent caution to the wind and cooperate with their prescriptions that might lead to my early death?