It's indescribably saddening to see a disease detain you in the prison of your own body. You look back at your former life with nostalgic envy, realizing you took it for granted. You took it all for granted: every run, every vacation, every day without pain or fatigue, every exciting day and night out on South Beach with friends, when you had the potential to say “yes” to almost every exciting invitation instead of, “No, I’m too sick” to any suggestion at all, even though your dreams and desires to participate have not died with your physical wellness.
If you can run, run races or run around with your loved ones, tasting the air and feeling the sun shine on your face, its warmth enveloping you without any ill effects. If you can see, go traveling and experience the different peoples and languages and cultures that make this world such a magnificent place to inhabit. Strive to understand them and not judge them. Take in all of life's exquisite adventure; devour it like someone starved.
There are people out there who cannot do these things: people who are confined to beds and wheelchairs, people tethered to their homes, or people who can engage with the world but feel imprisoned by their own bodies as they project “normalcy” out into the world but struggle to maintain what is just simply smoke and mirrors. Do it for those people. I am one of those people. Do it for me.
What I would give for “normal” — even for “boring” — feelings that many people detest. How I would love to get up early to the sound of an alarm clock jarring me out of a sweet dreamland for yet another predictable day of monotony at a job I kind-of-sort-of like, or maybe hate. To get up out of bed, brush my teeth, shower, get dressed, eat breakfast and leave for another day at the office instead of settling into the rigor that is the management of a “progressive and incurable neurological disease,” hoping that my well-disciplined routine will allow me one more day of maintenance. I’m holding my ground as the army of progression pushes forward. It may have more men and weaponry and experience, but I have a little stubbornness and a lot of untiring faith.
I wake up every day, bracing for the attack and hoping for surrender. I lock and load, green juice in one hand, natural supplements in the other, and I begin my morning routine of treatments, stretching and meditation all in the hopes that I can have some semblance of a day. If I don’t, the disease gains ground and I lose productivity.
Sometimes, I want to give up. Hell, every third day I wonder if it’s the day I throw in the proverbial towel and let the disease walk all over me on its way to its next unsuspecting victim. But a little voice always whispers to me, “Today isn’t the day. Get up. March on.”
But I don’t quite know where the voice comes from. It sounds like my own voice, but it's much more omniscient, wiser than I, with a distinguished confidence and an incomparable conviction, components my words sorely lack.
I always listen. I don’t say, “Give me a break. It’s not going to get better. I’m so tired of this.” I just shake my head yes, and I continue on until the next moment of crisis. It’s a habitual conversation, always starting and ending the same, but I continue to engage it. I think it brings comfort knowing that some universal voice always provides such an unambiguous answer to my question.
What if that ubiquitous voice told me it’s time to relinquish the fight for survival and renounce all possibility of a miraculous healing? Would I? Could I? This is a question I often ask myself when I'm longing for that intuitive utterance to offer no more hope, when I'm eager to lie down and sleep and dream of days gone by. But I guess I’ll never know until that day comes.
Be wise. Don't take your health, your greatest wealth, for granted, and do what it takes — however difficult, or pricey, or time-consuming or inconvenient — to maintain it.