Loneliness. Anger. Fear. Laughter.
“Pray that your loneliness may spur you into finding something to live for, great enough to die for.” – Dag Hammarskjold
I find myself wrapped in my own darkness these days. Regardless of the number of close friends and family that provide comfort, I cannot help but feel alone – forced into a self-inflicted isolation. In this solitary state I boil over with a mixture of emotions from pure desperation to crippling resentment. I fear life, I fear death, but most of all I fear that this is my new “normal” – though, admittedly, anxiety has always resided inside me even before these complications. I catch myself resenting seemingly healthy individuals on the street. The key is I catch it and remind myself that the diseases I fight are (mostly) invisible to others. Judge not lest ye be judged.
Strangely enough I find laughter every day, even as I step into the shadows. This has not always been true. It certainly wasn’t true six months ago. But overall I have (mostly) regained my sense of humor. If I don’t find a way to laugh, I spiral back into despair. I still experience days, such as yesterday, when I can do nothing more than crawl into a corner and sob into my pillow, mascara streaking across my face. There are days I pick myself up, only to drop right back down. My husband tries to console me, but my condition is not exactly relatable to what most individuals my age have experienced.
Yet the sun rises each morning, and I am given the opportunity to trudge forward and make progress. I learned a long time ago that I am in control of range of motion improvements. Even my pain level is under my control to a degree. I do not always make the right decisions. Sometimes I choose the passive road, though I soon pay for that momentary lapse in judgement. But each rising sun resets how I perceive my disabilities. Every day is starkly different.
The Challenges of Rarity
The most important thing I seem to always forget is I am not alone – we are not alone. It is the single thought that can pull me from darkness when all else seems to fail. Maybe there are two of us near my home, perhaps there are two hundred. What I do know is we must find ways to connect with each other: raise awareness and form support groups.
“I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back.” – Maya Angelou