Personal experience has made me keenly aware that joyful moments are just that: moments. They are fleeting, and while we may try to immortalize them they will never truly last forever. All we can really do is appreciate happiness as fully as possible while we have it and, during inevitable dark times, hold on to the knowledge that it will return.
Chronic illness is constantly accompanied by its own particular brand of emotional rollercoaster. I cannot count the number of times that I have unknowingly pinned most of my potential happiness on a promising treatment or hope for a miracle cure, only to be disappointed and suffer the crash. In my efforts to not become jaded by the occasionally harsh realities of life, I left myself vulnerable to crushing letdowns. When you’re chronically ill, particularly undiagnosed and chronically ill, complacency can lead to your health deteriorating. You cannot ever lose hope for a diagnosis and treatment, or you will also lose your current and future quality of life.
I have, however, let myself get a little bit too confident in my optimism lately and far overestimated my physical capacities in the process. I spent a lot of time on my (admittedly faulty) feet, slept less than I should have, and spent a lot of time disconnected from my feeding tube, all in an effort to keep up the appearance of a healthy young adult living life to the fullest. While a combination of tube feeds, the correct medications and lifestyle modifications have brought a great deal of medical stability into my life, my body remains ill. My body will always, to some degree, be ill; no matter how much effort I throw into forgetting. When I attempt to push these facts away, my chronic illnesses ultimately bring themselves to the forefront every time and force me to face reality. This past week, I experienced yet another reality check.
I had known that I was pushing my physical limits for weeks. I was working consistently and exercising on a regular basis, then experienced the sensory intensity of New York accompanied by a lot of time on my feet, and then nearly immediately brought a puppy into my life – cue a lack of sleep. In my world of complex neurological conditions, this is a perfect scenario for a major flare-up of symptoms. Like clockwork, a major flare ensued, and I found myself bed-bound for nearly a week.
Having recently experienced what felt like relatively limitless freedom in New York, my body reminding me of it’s faults was quite a blow. Realizing that your sense of invincibility has boundaries can be crippling at times. However, experiencing said freedom came with unexpected benefits. Feeling so on top of the world gave me a sense of hope, a more realistic inner voice telling me that my goals, no matter how lofty, are in fact achievable and that setbacks are not the end of the road. I will likely not receive a miracle cure. There are, however, ways to chase my dreams within my scope of physical ability. I just have to find them.
Sabina Catherine 