There’s so many serious moments in life, especially when battling chronic illness. These past few years have seen more tears from me than my whole years prior combined. But I also know you don’t have to be out of your trial to experience joy. You are allowed to laugh during the rain pour. You are allowed to make fun of your illness. Hopefully those who are experiencing chronic illness or have others in their lives who experience these struggles can at least have a smile from this article.
1.) Anything in the “pajama family” becomes top drawer material. The line between pajama and not pajama becomes murky. Skinny jeans move to the back of the closet with anything slouchy taking its place. If it means being twinsies with the geriatric crew, so be it.
2.) The Superficial Hygiene Is Nowhere to Be Found. You’re too tired to do anything with your hair which leads you to the discovery of your roots. Literally, any presence of dye has disappeared from your hair cuticle leaving you with your God- given color pigmentation- for better and for worse. I told my husband, Michael that once I’m better I want to dye my hair bright red, the color of Phoenix in X-Men…we’ll see if that ever comes about.
3.) It’s better to make up a weirdo name for yourself as a default than syndrome / disease “fill in the blank.” Even though education on your illness and becoming your own doctor is extremely beneficial, you sometimes become defined by your illness. A minor solution? Make up your own name. Let’s see…I’ve been dubbed Storm from X-Men because of my persistent rolling back of the eyes that wouldn’t be humanly possible without my condition. I have genetic mutations; I many times cannot be touched without a severe reaction…leading me to another nickname- Rogue from the X-Men. We’ve heard a couple of my docs say they’re happy both Michael & I can have light-hearted moments in spite of our circumstances.
4.) Your necessities are a little…unusual. For years now, I have a food bar I can grab to satiate my hunger because well, my diet limitations are pretty vast. Eating a meal bar fills me enough to where I’m at least not salivating over boston cream donuts. My purple ear plugs have been a must before leaving the house because of my sensory issues.
5.) You wish you could tap into mind control to do normal activities…like clean.
There’re times I look around and see a dish with leftover crumbs and clothes strewn about. Inwardly I’m bugged by this to no end, which makes me wish all the more that I could somehow tap into mind control to pick up objects at will.
6.) You invent games as a healthy escapism from pain. Whenever I have those really bad days, my husband and I play the game, “Remember When, And I Look Forward to When.” Essentially, we look back into the past, pick out a happy memory to tell and launch into a storytelling venture. The second half is a little trickier. You look into the future and retrieve an invisible, hasn’t happened yet ‘memory.’ It’s something we would like to do…like galloping on horses on a faraway beach. Sometimes those dreams seem unattainable, but they keep us looking forward to an uncertain future.
7.) You find that movie/tv show that feels like home. Do you ever pull out your favorite movie and/or TV show that feels so close to home because you’ve memorized every single line and could basically run a one man show because your memorization of the lines and movements of the characters are etched in your brain? When you’re sick, you just want to revisit those film moments that feel like home.
I wish I could have a group of people to sit down with and therapeutically ‘make fun of our illness’ together. I had a taste of this when I was in the west coast for treatment. So many people were struggling in health to varying extents, but all that I can remember were cheerleaders for each other. We named this one dear woman my “seizure buddy.” Difficulty with speech would halt Lorraine mid-sentence, accompanied by a quake of involuntary jolts- but she would amazingly laugh through her predicament. Her teasing comments about her health was pleasantly contagious. What a joy it is to have a light heart no matter our condition. Just know I’m with you friend, in spirit and maybe at the very least, a webcam chat one day.