Saturday, March 28, 2015

The first week of spring. Some thoughts.

Even in the absolute best of circumstances, life with this disease would still be incredibly challenging. Let me imagine just for one second what the best of all circumstances might look like: limitless supplies of money, enough caregivers to ensure that no one person ever gets sick of me, a personal chef to deal with the challenges of the Wahl's diet I am on, a housecleaner and a personal assistant. My personal assistant would have one of the worst jobs ever: he or she would manage my finances, schedule my appointments, deal with health insurance and Medicare snafus, run errands, file my paperwork and organize my life in full. Above all, the best of circumstances requires a rock solid emotional support system. Additional perks should include, a fully accessible house (bathroom included), an accessible vehicle and a dog friendly dog. Even then, even if I somehow found myself in a disabled persons utopia, I would still feel like a prisoner in my own body, I would still watch strangers move with a seething and suffocating jealousy and I would still feel a noose tightening around my heart every time I passed the high school track.

And though I have said it before I will say it again: the notion that time heals all wounds is a fallacy. With a progressive disease like mine, time is not a friend. Time enables nothing more than the lesions that currently exist in my brain to cause further, irreparable damage to my nervous system. Time actually depletes my hope because as my level of disability increases I know the chance to reverse the damage decreases. For the past almost 18 years my doctors fought aggressively to stop the progression so that one day, if there ever were a cure, my body would not be too far gone to reap the rewards. Unfortunately though, despite everyone's greatest efforts, no one has ever been able to push a pause button on my progression: not the multitudinous immunomodulating drugs, not the immunosuppressive drugs, not the human immunoglobulin, not the experimental treatments and most definitely not the chemotherapy. My disease is stronger than the strongest of medical treatments, the smartest of doctors, the savviest of acupuncturists and the most stubborn and determined of patients. It is even apparently stronger than God because more people than I can count have been praying for me since the day I was diagnosed.

I have never accepted this disease lying down, I have done every single physical activity that I could with as much vigor as possible from the confines of this body; I taught myself to swim and once I could swim more than 50 meters without fearing I might drown, I taught myself to love it. And now from the uncomfortable seat of my motorized wheelchair, I question almost every single thing that I have done or haven't done along the way: did I drink too much alcohol in college? Did I overdo it in the pool over the years and overheat my body too much? Were my first several years of teaching so stressful that I contributed to my own demise? Did I anger God along the way? Did my body need more sleep than I gave it? Is my faith not strong enough? Did I wait too long to try this crazy diet? Did I give up on one of the experimental drugs too soon? Do I need more human immunoglobulin? Why did I ever try chemo? Should I have stayed on chemo longer? What about physical therapy? I did super intense physical therapy in Baltimore, should I have started that sooner? Should I have fought harder? Did I fight too hard?

I can literally drive myself insane with all of these questions. Especially knowing that I ignored some pretty serious gut feelings along the way. What I've learned however is that a negative gut feeling feels remarkably similar to nerves and what sane person would not fear chemotherapy? Regardless, I had something that I can retrospectively identify as a clear "bad feeling" before I started the chemotherapy, and what did I do? Ignore it. Of course there is no guarantee, I could be worse off right now had I not gotten the chemo or tried the cocktail of pharmaceuticals that my doctor offered me. I might have progressed faster had I not swam a mile a day for years, and who knows what could've happened to me if I worked at a soul sucking desk job instead of as a stressed out but 100% fulfilled teacher. The questioning, the second–guessing and the self blame never end. They. Never. End.

So why did I bring this up? I guess because I just want someone to understand that sometimes it just sucks and there is nothing anyone can do to make it better. Please do not remind me of everything I should be grateful for; please do not tell me that I am loved; do not try to convince me it will be okay; and please, please do not remind me that things could be much worse. I already fear that on a daily basis. Every once in a while I am just sad and I need a little bit of patience. I absolutely appreciate my friends and my support system and my family and the beautiful accessible house I live in. I appreciate my girlfriend and the fact that she has single-handedly infused more hope into my life than I have felt in over a decade. I love the fact that I truly do not feel alone in the struggles against this disease and that I have people on my team willing to help, willing to figure things out, and willing to support me when I am at my worst. Unfortunately however, despite all of this, sometimes I am still sad. Especially when it is beautiful outside and all I want to do is go for a run.


3 comments:

kim said...

OMG. I wrote a much longer reply that I just deleted. You wrote it So Perfectly. So authentically. So honestly. OMGods. Thank you. xoxo

Anonymous said...

For my multiple sclerosis I tried a drug called DMT it has changed my life...yes it's an ayahuasca hallucinogenic, but it is from a plant and no worse that drug cocktails and chemo...I think I can cure myself one day

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