When I tell people about my summer fellowship at the ALS Assocation, the first thing they generally do is congratulate me.  I’m working toward a dual master’s in social work and public health, and for someone interested in access to health care and disability advocacy I can’t really think of a better placement.  When I tell them what ALS is and that I’m working to help the ALSA find better ways to loan medical equipment to patients, they usually (in various ways) ask me two questions – whether I think it’ll be hard for me, and whether the patients manage to have any kind of quality of life.

I met my best friend Stephanie at the beginning of eighth grade when she’d just moved to my hometown from Detroit.  We started talking because we both loved Star Wars, but our friendship was close and fast and is still tight.  She lives in Berlin now, but I think of her every spring when the crocuses come and send her pictures as the spears break through the crust of hard packed winter soil and come into bloom.

Me and Stephanie, a few summers ago in Europe.  It’s blurry because it was taken by a drunk Australian standing on a table.

Her father was diagnosed with multiple sclerosis in our last year of high school.  He was like a second father to me and took us on trips, to the Renaissance Festival, to the metroparks, to the art museum.  He never went to college, but he was an intelligent man with a large library and whenever I came over I would always see him watching documentaries.  The last time I saw Mark was a few years ago, before I started testosterone shots and my voice dropped a few octaves and a thicket of dark hair grew over my jaw.

When I saw him, he could barely speak but I knew he was glad to see me.  The History Channel on the TV was the only light in the room, and it cast a gray pall over everything it touched.  I walked next to him as he rolled his walker outside and smoked a cigarette.  I told him I was leaving for grad school and I talked with him about my career plans because I knew he would like it.  I wanted to see him before, because he knew a girl and he wouldn’t recognize the man I would become.

When someone’s body deteriorates they find a lot of ways to hold on to their dignity.  Some are hopeful, some deny it until they can’t anymore, some laugh about it and wink at you as they grip your hand with a toddler’s strength.  Most of them use their walkers or wheelchairs or canes like they’re part of them now, because human beings are infinitely adaptable.  They can type into a computer to communicate and they can walk around the zoo with their grandchildren.  It reminded me of the reasons I was drawn to work with people with disabilities in the first place: we can help to remind people of a thousand reasons to feel human.

ALS is not the same disease as MS, but I thought about Mark when I was sitting in at the support group during my first day at the ALS Association.  I have a spinal cord injury myself – another story – and my social work field practicum my first year of grad school was in a hospital.  Sick or dying people don’t shake me the way that they would have seven years ago when I graduated from undergrad, and that was good, because it let me listen.  I’m doing my best to become a professional listener.  In fact, the only parts of my week that I haven’t spent program planning have been spent listening, which is also good – my patients and the people I work with at the ALS Association have a lot to teach me this summer.

You can find more information at the ALSA’s website, alsohio.org.