Wednesday, April 23, 2014

Try This Exercise

Able-bodied friends! I would like you all to consider something. Please think about it with focus and not with the cursory attention we typically use to scan the internet.

1) Disability is a social construct. (More on that later.)

2) How many times have you judged someone's worth, even passively, based on limited information of nebulous origin, and then distilled it into "inspiring" or "pitiful" or "scary"?

2) What would you do if you were suddenly unable to live your life the way you're currently living it? Say, part of your body suddenly malfunctions beyond repair and you simply...can't. Not "won't", no choice - CAN'T.

An exercise! From the moment you next try to get out of bed, think about how you'd do it. If each of your skeletal muscles won't move when you ask them to, your joints paralyze you with fire at the slightest movement, or your mind is padlocked against your will and refuses to engage outside of itself; think about the sheer amount of energy it might take (physically, mentally, and emotionally) just to get out of your bed. Now, move through every miniscule step of your daily routine with this intention.

How's that grip on your toothbrush? Do you need help zipping your pants or getting into your shirt? Can you type today? Can you have a conversation on the telephone? Can you get to a meeting on an upper floor of a building that has no elevator? Is it easy for you to get to the bathroom and into a stall by yourself at work? Can you use the kitchen in the same way? Can you get through the doors in every building by yourself with ease? Can you easily step off the curb and get across the street before the light changes? Have you had tears in your eyes all day and little support from people who don't understand why today is so different from yesterday? Are you just trying to live your life like everyone else?

This list could be infinitely longer, but you get the idea.

Please share your results!

Monday, April 21, 2014

My Current Personal Experience With Herd (Community) Immunity

Reason #27591 why herd immunity is so important: Even though I would really, reeeaaally like to, I can't get an MMR (measles/mumps/rubella) booster because I am immunosuppressed and could get sick from it. This is unfortunate timing for me since there have been cases of measles popping up in Seattle.

Most of you are healthy and will not get sick from this vaccine. Herd immunity has been suffering since healthy people have been choosing not to vaccinate themselves or their healthy children. (All vaccines and their timing are not created equal, but this is not the thread in which to discuss that.) One result of this has been the new cases of measles in Seattle. I cannot protect myself from it any further than I already have, so herd immunity is incredibly important to me.

HEALTHY ADULTS AND CHILDREN: Please understand - you can incubate measles and not get sick yourself, BUT you can pass it on to people like me who are more prone to serious complications from it.

I DO NOT WANT TO DEAL WITH MEASLES. Please don't give it to me. If you think you've been exposed, please let me know which rooms you've walked into recently so I can avoid the airborne droplets. As always, do keep inviting me to events and let me decide whether or not to show up instead of making that decision for me.

I don't want this thread to devolve into angry jabs, I just think it's extremely important that people have a face to put with this situation. It is very real.

***EDIT 4/26: My doctor and I discussed this issue further and he concluded that at my current level of immunosuppression, the risk of me catching measles at this time was more concerning than the possible side effects from the vaccine. I was admittedly a bit nervous because the MMR vaccine is live, but I got it four days ago and haven't yet noticed any complications beyond being extra exhausted. I am relieved that I have the added protection (even though it might not work as well because I'm immunosuppressed.)

Friday, April 18, 2014

Conversation: No Need For Fear

Of all the adjectives in all the world, my life cannot be described as boring. It is captivating and complicated and swings from exhilarating to tragic at mind-boggling intervals (not just because I'm bipolar, heh). I have heard that it can sometimes be difficult to know what to say to me based on all of that. Examples include: Your energy is so intense that I'm afraid to approach you; Frankly, disabilities scare me; I have no idea what to say to someone who's lost a child when mine is standing right here; I don't know how so many terrible things could actually happen to one person; etc. Those are all valid feelings and I understand them. In this society, most of us are simply not taught how to navigate other people's difficult times. I've had lots of practice on both sides and I still sometimes feel lost and awkward when it comes to others.

It's true that I don't have a lot of energy to use at any given time, but I am a person who would much rather address important topics than not talk about them at all. Forever ignoring major issues is not my style.

Please don't be afraid to talk to me. Sincerely. About anything. Things have been this way for long enough that I'm an expert wave rider. If you have enough interest in my life to talk about it, why not speak with me directly? I wouldn't keep putting myself out here if I didn't welcome conversation. Through this lens, I've learned myriad life lessons and sharpened my sense of self-awareness. I'm not particularly fragile and there's no need for pity. I'll accept love, though! I love love.