I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Tuesday, August 28, 2018

Remember Your Doctors

Another chapter in my horror story has finally ended. After three years of probation, the Department of Education informed me that my college grants have been officially erased under total and permanent disability, and that they are no longer monitoring me as of a month ago. What this means is that I am incapable of completing my education or securing gainful employment due to being declared disabled as documented by my physician. In my last year of college, I was so bad off I couldn't sit up long enough to eat a full meal or shave my legs, much less make it through my online classes, and campus classes had almost literally killed me a few months prior. Social Security acknowledged my permanent disability shortly after that, back in 2012, but the DoE's TPD department also needed proof from a doctor. The Muscular Dystrophy clinic ignored my letter, but thankfully, my former Nephrologist Dr. Fulop came to the rescue.

Dr. Fulop is no longer my doctor (I was told he moved back to Hungary), but this is the second or third time that he has saved my ass. When I arrived in his office in a partially paralytic state years ago, it was pretty clear that I needed help, but he didn't know that relatives were already discussing what kind of nursing home to put me in. And until I wrote him in 2015, he probably didn't know I was at risk of losing a percentage of SS Disability income to the Dept of Ed either, which would have surely ruined me completely, as things are financially very difficult as it is. We had problems in the beginning, but eventually put our anxieties aside and communicated effectively. I have no doubt I'm still here today because he listened and cared about my perils. I wish I could talk to him and at least thank him for saving me from a terrible fate. I hope he knows that he is my friend, and I'm really grateful to him for turning my life around. It's a very emotional thing to recall, even now.

My current Nephrologist is super sweet, and he seems to know more about me than I know about him, so I don't know what's been said or documented. At any rate, I consider myself lucky to have him, and I hope to God he stays. I can say without hesitation that for those with chronic illnesses, it is absolutely crushing to lose a good doctor. Sometimes, they are among only a few consistent and compassionate listeners in our lives.

I still have some dark moments. Author F. Scott Fitzgerald wrote "The loneliest moment in someone's life is when they are watching their whole world fall apart, and all they can do is stare blankly." I live these words day in and day out. I had plans for my life like everybody else. I was going to rise above the trauma and pain, reach my educational, career, and non-profit goals, achieve the independence I so fiercely longed for, and be somebody. Instead, I wonder why on Earth I was even born. I'm tired. Sometimes, I just want this to be over. But then I remember how Dr. B is always happy to see me, picks on me like a dad, and tries to make sure I have all of my prescriptions. I'd be dead as a door nail without him. I remember Dr. C who wants to know more about my weirdness so he can spread the word and maybe patients in the future won't suffer as much. He asks that I not lose hope because somehow he knows that I have. I hardly know how to respond to his kindness. I want to have coffee with him or something, and I never want to have coffee with anybody. Drs. Witt and Hillman continue to see me at Muscular Dystrophy clinic once a year even though they know there isn't a thing they can do for me. Primary Periodic Paralysis being acknowledged as a form of Muscular Dystrophy was a life-saving turning point as they agreed to re-diagnose me with Periodic Paralysis and refer me to the renal clinic across the hall, where I met Dr. F. It took going through years of hell to get to this point, but I have hit the freaking jackpot of physicians.

So I remember them, and the respect they've shown me, and I think maybe the world isn't quite as terrible as it seems, and I take a deep breath, and I pray, and I continue to seek a life worth living.