Dear you and I,
It has come to my attention that most of my life has been dedicated to dealing with chronic illness. Being chronically ill is a full time job (that doesn’t pay), and this blog has taken over a tremendous amount of my passion as I pour everything I have into it on a (mostly) regular basis in order to help both myself and others feel heard. I don’t mind this, but as my fingers furiously type away, sometimes the idea that there is more to me than my medical history slips right through them.
When I was 15 chronic illness fused itself into my young life. Being so young, it was a struggle to go through all the life changes I needed to. Many people tried to console me using the phrases, “you aren’t your illness,” or “that isn’t the only thing about you.” Well, at first this was meant as consolation, but as time went on it seemed to feel more of a way to either differ from the fact that people didn’t know what to say to me, or the fact that people didn’t want to hear about it at all.
Over time I learned that I have no choice but to live my life differently than most others my age and those phrases began to irritate me. It is extremely easy for someone who is not chronically ill to tell someone they are more than their illness. They haven’t the slightest idea the strength, courage, bravery, and effort it takes to be a chronically ill person. As I continue my life with my special needs and my chronic pain I can’t help but think, “how could my chronic illness NOT be a tremendous part of me?”
Nowadays it irritates me when I am told that I am not my illness; the phrase feels dismissive. I am my illness. I have no choice but to be because not accepting it is far from healthy, and I already have plenty of health issues on my list. Rather than choosing to be or not be my illness, I now choose to be my illness as well as other things and to encompass it all.
This blog has transformed into purely being about illness to being about every part of me. Sometimes I worry that I deter too far away from the main subject, but nearly everything I write comes back to my health, because my health is a tremendous part of me. It affects how I move, how I live, how I breathe, and how I think, not because I don’t have the strength to fight it, but because I realize that I must stop fighting altogether and instead learn to coexist with it. Of course this is much easier said than done; but I’m working on it, okay?
All this being said, I do think it is important to remind myself of other things that are a part of my life that make me the person that I am. last year I made a post of things about me that don’t relate to my illness, and as I drove home late last night down a mostly empty freeway, I realized that I would love to do that once again. My darling readers, I present to you, a written selfie.
- I love to laugh. Laughter is one of my favorite things about being a person, and my humor is largely what has helped me survive my difficult life. I pride myself on making people laugh in the absolute worst of times, even if I’m in a hospital bed hooked up like a cyborg. I am so thankful to the people in my life who laugh with me. The only thing better than laughter, is laughing with the people you love.
- Compliments about my personality make me a glittering, sparkling, happy thing. I think it is wonderful when people compliment how I look, however, when people compliment my personality or how I think, well, it’s a good way to make my heart glow.
- Two of my favorite movies are O Brother, Where Art Thou? and We Are Titans, which is extremely odd considering that most movies I love are nerdy, Sci-Fi sort of things.
- Getting hand written letters in the mail, at least to me, is one of the best feelings in the whole entire world.
- I have an insatiable sweet tooth and I completely blame my grandmother for this, as I definitely inherited it from her. We especially have an affinity for icecream. Aside from icecream I also like, well, just about anything I’m not allergic to.
- I love nature. Though I am not nearly as physically capable as I wish I was, I greatly enjoy being in forests and on sandy beaches. Both are landscapes I desperately miss about my home state, California. Don’t even get me started about redwood trees!
- I used to play bass guitar and piano. I still play my bass guitar on occasion. Aside from them, my favorite instruments are ukulele, violin, and accordion. Don’t ask why I love accordion- just go with it.
- When I was a child I was terrified of bugs (especially spiders), people with beards, dogs, and bandaids. 20 years later, I love beardy people as well as dogs and the bandaid thing I’m neutral about. Spiders can still go fuck themselves. Actually, they really shouldn’t, we don’t need more of them!
It has become extremely important to me that I acknowledge my pain and sickness. However, the rest of me deserves equal acknowledgement which doesn’t always happen. All of my parts, the painful, the strange, and the lovely make up who I am; who says some are more important than the others?
If I stand too close I might fall in,
But if I’m too far gone I’ll never win.
If you believe in me I might just want to spend some time with you again.
I’m afraid I tend to disappear into an anxious state when you draw near .
There is no reasoning, it’s quite a silly thing ,
But it’s the way I’ve been for years.