Tuesday, May 3, 2016

The Blessing That Is My Chronic Illness

When I was in my mid-twenties I had a very poignant conversation with my fiance, now my husband. “You know I can’t have kids, right? You know I probably wont live much past 30?” Anyone who has ever been in their mid-twenties probably already knows that 30 sounds really far away and really old. I’m assuming that that’s likely the reason he kind of brushed off my commentary about my mysterious ailment.
Now nearing my mid-30s I’m sometimes astounded that I am still here. More surprised then I was at having a kid and not dying by age 30. Not nearly as shocked as I was shortly after turning 30 that I had an actual disease with a name and not just some vile and awkward thing I had to deal with three times per year. I was diagnosed with cyclical vomiting syndrome nearly three years ago. That diagnoses changed my life.
This whole blog is dedicated to my illness, so the fact that a simple diagnoses changed my life is a bit of an understatement. Being diagnosed turned me into a gosh dang superhero!
I’ve had this disease as long as I’ve had memory. It became a part of my very existence. It’s like I spent my childhood, adolescence and twenties carrying an elephant. For imagery sake, let’s say the elephant was an adorable baby during my childhood and nearly full-grown in my twenties. I turned 30 and the elephant jumped off my back and  rejoined its herd. How did that leave me? It left me with a rock hard back is what it did.
There is no cure for either cyclical vomiting syndrome or mitochondrial disease. But there are people all over the world who’ve been diagnosed and now know how to manage their disease. I’m one of those lucky people. The heavy load I’ve carried my entire life has been lifted.
Because my young life had added difficulty, I simply learned how to do life differently. It’s a difference that now fills me with joy and my life habits are so beneficial to me. In short, my illness was a blessing. The many blessings of it are listed below.
  1. My Bills Are Always Paid Three Months in Advance
I never knew when I’d end up bedridden or in the hospital. All I ever knew was that it was inevitable. My bills were always paid way in advance. I’ve always had a savings account to pay for any deductible I may acquire.
2. I Achieved All My Goals
Three years into my diagnoses sans fear that my body will fail me, I still don’t understand what dreams are. I never had any. I can say now that my dream has always been to go a year without nearly puking to death. I’ve done that. My dream came true. That said, I did grow up in a generation that promised hard work would lead to the life of your dreams and that with enough sweat equity I could have anything I wanted. Knowing as an adult that the above teaching is complete b.s., I still heard it repeatedly and it taught me to make goals. I made plenty of them. They were small goals like going here or accomplishing this, ect… and I always reached my goal…right before I landed in the emergency room that is.
3. I Don’t Care If People Don’t Like Me
If someone isn’t treating me how I think I should be treated I walk away from them so fast. I didn’t ask to be here. I didn’t ask to spend a lot of my childhood in a room reading books because I was so sickly I couldn’t keep up with other kids. It’s not my fault I didn’t get to develop like other people. I have a terroir all my own. I don’t do anything to anyone. I help people more than most. Sure, I see the world a bit different. But I wouldn’t want it any other way. That said, I’m not proud of how little I understand passive communication. I’ve lost dozens of friends over this. When this happens I call it Sheldon Coopering. Or when I accidentally Sheldon Coopered someone. One example I would use would be that I’ve been in situations where someone’s said, “Man I’m thirsty.” My response will usually be, “Oh that sucks.” But if someone says to me, “Hey could you get me a drink of water?” I’ll always jump up to get it. I don’t understand the cause of this. It seems gender-biased, but I don’t really have much insight on whether women are expected to understand passive communication better than men. All I know is I’ve ticked off a lot of people because I don’t speak passive. But I always brush it off. Again, I didn’t ask to be here or to try and interpret that stuff. I’d much rather be soaking up the sun anyway.
4. I Don’t Waste Time Not Liking People
Although I do have a preference for responsible dog lovers-especially flat-coat owners!- I don’t waste a minute disliking someone. Honestly, I don’t understand why someone “likes” or “dislikes” a person. My character assertions revolve around if I think the person is a sociopath, a narcissist, or someone who is punitive towards others or animals in anyway. If you’re none of those, then we’re good. I’ve had people look right at me and tell me they didn’t like me because of the shape of my nose. I’ve also had people tell me they didn’t like me because I reminded them of the cheerleaders they went to high school with. The ones they hated (anyone I went to high school with, lets all share a collective chuckle.) One time I even overheard a person explaining to someone else how they didn’t like me. This was the conversation: A) Yeah I really don’t like her. B) But why? She seems so nice. A) Yeah, I don’t know. I just don’t.
Yeah, I totally don’t get that stuff. It seems like mental illness to me. It seems pretty common though. I thought this Time article summed up my feelings on this subject pretty well–especially the last sentence. For the record I am not Autistic nor do I have Asbergers. I actually had a test done. People who are either cannot understand wit. I not only understand wit, it’s kinda my life. I’m just some lady with a high I.Q who spent her childhood in a room with books. I’m like Nell but with a high I.Q.
5. I Have A High I.Q.
Again, nothing I asked for. In fact, I’ve referred to my high I.Q. as “The Curse”. If I had been able to choose my childhood it would have been right down the middle, not of such a sickly constitution I ended up a well-read adult who constantly calls out other people’s b.s. just by happenstance. Another way I don’t keep friends.
6. I Get To Be Simple
I still can’t believe I get to feel like other people do. I’m no longer carrying a heavy elephant that makes every day harder. I no longer have to spend every day anxious,  not anxious about other people or anything I’m doing, but anxious that my body will trip over itself before I have a chance to reach my goal. Now I get to still be sorta young with a healthy body that most people in their 20s and 30s take for granted. I get to be a vibrant part of my community and my world. I have been given the wisdom of empathy to the suffering of others, yet I’m still young enough to be of help. I’m getting to help others maintain their health and have longevity. I get to be salt-of-the-Earth. For that I am blessed.

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