Just Be

 We all evolve and change. We learn something new with each step we take and each person we meet... from fleeting moments to lifelong memories. It's inevitable.

Ten years ago, in a moment of kicking and screaming change, I requested an inspiring words list from my friends (that one is at the bottom of the page). Last month, I did it again. I realized I was resisting yet another change of this year... and I still kind of am. However, I just looked at that list again and I'm actually pretty proud of how my friends see me. And it helps.

Ending this year, I find myself starting over again. And it's fucking frustrating. Again. I'm learning a new diagnosis and how to control it.. and how I react to it. While I temporarily made progress with walking, I'm back in my wheelchair with a leg that doesn't work; on top of rebuilding the muscle I lost while getting that new diagnosis and the subsequent recovery. My stomach keeps shutting off. Migraines are stupid. Aaaaand all of that is wreaking havoc on my mental and emotional health.

Fortunately, my stubborn and determined is strong, and currently getting stronger. My rebellion and defiance might be sneaking out as well, it happens when my limits feel too crushing. Or I get too many of those "feel sorry" stares. Or too many things change at once and I can't keep up. Or my frustrations affect others. Or I'm just tired of all the bullshit. Right now, it's all of it.

And so once again I have to take a moment to simply sit down and let the waves wash over me, let go of everything so that I can find myself in the chaos. What parts of me survived the seizures, how to heal enough to get walking again, to regain the energy I need to rise again and fight, to be emotionally ready to ask for and accept help (I currently need and appreciate and love the help I have, but it's also hard because it is needed). Most of all, taking the time to learn my new brand of chaos makes it easier to just be.

Medical Hijinx

 Medical Hijinx. I coined this phrase several years ago to signal some kind of medical rant as I fought for diagnosis and/or treatment. I haven't had to use it in a while. Today, I'll be using it for its original purpose and for one I never thought I'd have to.

Last year, I finally got an official diagnosis of Functional Neurological Disorder. It came as my body was deteriorating further, and right before the leg spasms turned into dystonia. My new neurologist quickly became unresponsive, leading to two ER visits to try to help my leg. It got worse again in December, so did my neurologist's response time. As I slowly accepted that my left side is now riddled with spasms and muscle weakness, I had a couple orthopedic appointments in the hopes they could help or at least back me up. I only got their support in telling my neurologist to get her shit together or refer me to someone else. I have long preached changing doctors if you feel your current one isn't taking care of you. This was my final paragraph to her; I am sorry you're going through some personal things and the holidays have made things crazy, but if you can't take care of me or don't have time to respond, I have to request you refer me to someone else. It is way too frustrating to be deteriorating like this despite taking care of myself, working out, and having treatment just out of my reach. Thankfully, she agreed with me and is referring me to one of her colleagues.

Now for the thing I didn't expect I would need to rant about.

I was recently admonished for not sharing everything I'm going through on social media, leaving others to *gasp!* ask me themselves. And I just want to say you're damn right I don't share everything, I never have. I simply share more than others in order to get some subjects out in the open because I hate the phrase "we don't talk about that." (mental illness, chronic illness, chronic pain, sensory and learning disorders, disability....)

This goes to a narrative the disabled community is currently bringing to light; our medical history is none of your business. I can't tell you how many strangers ask me probing questions about why I use a wheelchair.. I've taken to answering them the same way I answer curious children: my legs don't work very well.

And while I have your attention, I've accepted that I'm going to be an inspiration, but you better damn well do something with it; don't tell people about me and not have your own accomplishment to share, I don't care how small it is. Get out of bed a few minutes earlier, do a lap around your living room during a commercial break, replace an unhealthy snack with a healthy one, pick up a weight once or twice, sit outside for a few minutes. That's where I started and currently where I am again. Use those small victories to build some bigger ones.

Slow progress is still progress

 

"No offense, but you look like an athlete." This was said to me years ago, after a pause to take a quick glance at my wheelchair. My answer was "I AM an athlete." And proceeded to show them photos of the various adaptive sports I had tried so far. Admittedly, this wasn't long after I'd started using my wheelchair regularly, so I still had the "runner" physique. Now I have the "hauling over 200lbs around and playing various sports with just my upper body" physique.

This is my best illustration of how much my upper body grew in just the first 3 years!

This is what I think of whenever someone asks me how I can be an athlete with several chronic illnesses (especially the various forms of dysautonomia), a neurological disorder, and a wheelchair. None of those things preclude me from sports. In fact, some of them made me more likely to be able to participate. I recently went to the Angel City Games and was talking about I had always wanted to do a triathlon, but didn't do it until I was using a wheelchair... simply because I had more support as a wheelchair athlete than I did as an athlete with a bad leg.

Soooo, back to the photo at the top. Most of the people posting on social media about chronic illness and dysautonomia and disorders and wheelchairs have fallen victim to doctors going straight to all the things they can't do instead of all the things they can do or the things they can improve or the things they can adapt. They're generally surprised when I come in say that I essentially accepted that I had to entirely start over and work my way back into being active. It took me 3 years. And last year, I had to start again.. not entirely from the beginning, but it was a huge blow. It's not done yet as my doctor and/or insurance are dragging their heels on treatment. 

When I first started over, it was a win if I simply stood for an extra minute, or took an extra step, or sat up a couple extra seconds. When I started rowing, I couldn't sit up on my own because I couldn't lean back or to the left; three years later, my core was really strong, unfortunately it was taken away again last year. I'm working on it again. Society tells us we should make big, noticeable gains when we work out and that's just not true. It takes time (and some fancy lighting sometimes ;) ) to get those before and after shots.

Also, like I said, slow progress is better than no progress. Be proud every little bit of improvement you manage to earn.