Cold, crummy weather makes me absolutely miserable. During the recent storms that blasted through New England, I think I cried more times within their few-day span than I had collectively in the last few months. Hurricanes don't scare native Floridians, but I was alone for the duration of Sandy- and that hurricane brought snow. Cosmo started freaking out before the wind started blowing, and his strange behavior (panting, whining, relentlessly licking his paws) made me nervous that if we really needed help, we might not be able to find it if people in Cambridge and Somerville were seriously hurt by the storm.
Aside from the weather, I'm discovering that seasonal depression is a serious pain in the wobbly parts. I've read about large numbers of people with Crohn's that struggle with anxiety and depression without living in darkness in winter months. I've dealt with my share of mood swings during my recent flare, and just when I think there couldn't be anything else to knock me on my ass into a snowy, slush trap, it seems there is always more. Unfortunately, the list of tragic roles of a Crohn's patient doesn't stop at sick person.
I was pretty damn pleased with my Halloween costume this year, but I do have a trunk full of other faces. Some are fun to wear, they make me feel good. But the others, they're the ugly kind that make you pee a little when you glimpse one on a haunted hay ride.
We've got a serious responsibility to keep whatever ails us in check, right? Research and experimentation in pain and symptom management, too. There's also sticking up for one's self in trying social situations. Relationship maintenance is a big job, and you can go ahead and dump regular, 'normal' activity in there -if you can swing it. Sacrifice is a word that the sick know too well. I've lost many people in my life because watching someone suffer so much isn't something that many people can stomach. It's almost as if the Universe had given me a buzzer that went off when the people I let in just shouldn't have been around. They left, and I moved on- without resentment or anger, because I realize that these situations aren't easy for everyone.
Being tested in huge ways makes for an incredible spirit. I don't hold grudges or carry frustration about being misunderstood around with me too much these days. I'll admit, for a while I thought that keeping the hurt close would feel better eventually, somehow. I was so, so wrong. That mask was uncomfy, super hot, and smelled like my mouth.
When you don't put yourself out there, you can't complain when you hear things about people's uninformed shit talking, or that you've been totally mocked in public about not having been able to work for the last couple of years. How will anyone know how much you've planned for yourself in the time you were on your ass? Or that standing for too long could result in two down days, or a serious (and even more embarrassing) accident. Though since I got my poop card in the mail, I worry a little less about that last one.
So right off the bat, sick people are care givers and students, plan-breakers and fact checkers, objects of ridicule, and sufferers of lack of stimulation. We are strength when others need it, and even more when we really need it ourselves. We know how to let go, and mourn accordingly. We can make moments what we need them to be, and adapt in emergency situations. There used to be times when I wished for a normal life. When I hoped to just go back to the way things were before I got sick.
The truth is, having Crohn's Disease has made me a better person. I guess in some ways, it even saved my soul. I learned things that most people will never understand. I found strength within myself, and chose to rise above what I'd never have thought to in the past. I know what it feels like to love myself, and the body I've been given.
For the first time in a long time, I'm seeing what I look like without any masks.
And I could really get used to it.
