Unapologetically Disabled: In the Beginning….

…I wasn’t disabled. I am now, and rather unapologetically. I’d like to share my journey with you, and hopefully correct some misconceptions in your minds along the way. That’s my goal, anyway. There’s so many stereotypes out there, so many that I once believed. Perhaps by writing, I can erase some of that.

I wasn’t born disabled. The most I can say that was unusual about my childhood was that I was very introverted. I grew up in a huge family with half of my cousins on a 5-acre property where we lived near my grandparents, my dad’s brothers and my aunts. I have the best family in the world, and they understood when I wanted to read a book while hiding up a tree or in the woods. Knowing that my parents wouldn’t have the money to help send me to college, I joined the Navy when I was 19.

I was assigned to an aircraft carrier when I was 21. My first indication that something was wrong was two-fold: I started limping from knee pain and my wrists stopped bending. I went to medical and was accused of faking it. This went on for over a year, and my physical condition deteriorated. I had no support from my command except from my friends. (One of those friends is now my husband of 17 years!) No one believed me. I kept bothering medical about it, until they told me that I would go to Captain’s Mast if I showed up again. (Captain’s Mast is a non-judicial punishment where you go before the Captain of the ship. It usually results in loss of pay, rank, and restriction to the ship for a couple of months.) Finally, when I had been aboard the ship for almost 3 years, they got a new doctor. I could barely walk and was pounding any painkillers I could to stay walking. Nothing killed the pain at this point. It seemed like every joint in my body was on fire constantly. I had also developed a crooked, “goose-neck” middle finger.

I took the chance and saw the new doctor, who took one look at my crooked finger and went pale. He ordered a ton of tests, and I finally had an answer. Rheumatoid Disease. At the young age of 23 I had the joints of an 80 year old. Seriously, my grandfather in his 80s walked better than me. My immune system was attacking my joints, and sometimes ignoring viruses and bacteria and all the stuff your immune system is supposed to eat. I was immediately removed from the ship and placed on biologics. The doctors informed me that within ten years, I would be totally disabled, unable to walk, and dependent on my family for my care. (Twenty years later, I took a solo trip to Germany to study German, so take that doc!) Biologics have been a life saver despite their controversial nature, but that’s another blog for another day.

Along the way, I’ve gained a few more “labels” that all relate to having RD, since my immune system couldn’t be satisfied with snacking on my joints. My official list of labels includes RD, Sjogren’s, Cricoarytenoid Arthritis, Psoriatic Arthritis, and Diabetes. I honestly just say I have RD and Diabetes. (I blame diabetes on both my grandfathers. Flippin’ genetics.) The rest are really just fancy ways to say what all my immune system likes to snack on, so I think it all goes together. In all fairness, though, my immune system does eat most of the stuff its supposed to. It just likes my body, too. I use a walker or cane for balance to get around most days, and all day trips require a wheelchair. Around the house or my family, I may not use anything because I’m not really embarrassed if they see me land on my rear end. Out in public, I don’t take the chance of falling.

In addition to RD, I also have mental health disorders. These are harder to talk about, and I never really have until now. I don’t think most of my family really knows about them because they are tied to things in my past that are not service connected or fully connected to having RD. I have depression, which is partially RD related. But I also have General/Social anxiety disorder, and Social Phobia. General Anxiety disorder doesn’t just mean I’m a nervous individual and you can just tell me to calm down. It’s a physical condition in my brain. Something about alterations in neurotransmitters, I think. There’s scholarly articles on it. Social anxiety/social phobia doesn’t mean that I’m just an introvert. It means that crowds and anything else social are as real a phobia to me as spiders, heights, or flying is to other people.

So how can I blog? Easy. I’m not looking at the people reading this. One of the biggest manifestations of my social phobia that I’ve noticed is that I write better than I speak to others. There’s no way I could say all this in person, but I like to think I’m a pretty decent writer.

Life goes on, in any case. I’ve managed to get two degrees along the way, Biology and Mathematics. I work around the physical disability to the best of my abilities. (That sounds like a joke my dad would make.) I’m in the process of getting treatment for my mental health, and I do quite well. I’m a teacher, and starting graduate school in the spring. I have a fantastic support system in my husband and both of our families. But life presents challenges even with the most fantastic support system, because so many people have no first-hand knowledge of what it’s like to be in my body.

Hence, the blog.

I hope to write on not just challenges I encounter, but issues that arise on various issues such as accessibility, disabled rights, health care, and ableism in general. In closing, I’d like to leave you with a quote from Stella Young to consider. I’m not sure who she is, but I really like the quote.

“I use the term ‘disabled people’ quite deliberately, because I subscribe to what’s called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses.”