Sometimes, when I miss the internet I’ll text emojis. Sometimes it’s rapid fire. Most of the time I’ll read the old posts I’ve liked to like them all again. Often it’s a makeup tutorial. There’ll be long gaps in conversation but mostly I trust in the return. That’s what holding space is: trusting the return.
Spellbound by the opening of HAGS by Jenny Zhang. Drop what you’re doing and buy the thing: http://souslespaves.bigcartel.com/product/guillotine-series-7-hags
Catching a train.
Union Station, New Orleans.
I took a pill two hours before I went to the house tonight because my idea of the ride felt too intense. It was D’s last night and all the clients and staff packed into the living room and sweat and cried a bit while eating burgers and chips. On the dry erase board hanging by the SNAP shelfs were three hashtags written in red:
A room full of black and brown bodies hugging because a healer is moving on feels right. I met V tonight, the other identity of S and they put their hand on my shoulder while I was staring at the dry erase. We miss you. They looked fabulous in long sleeves and black leather boots. All A’s in summer school. I miss you too. Have you tried the peach pie? I hear the cake is dry. The everyday heartbreak of dry chocolate cake means that we exist. I’ve been thinking about love and being unlovable for most of the summer and I don’t know. Maybe it’s all butterflies for school to start but I love peach pie and I love everyone in that house. Maybe love is being willing to burn for your existence. Maybe red dry erase is more than an empty headline about analog politics and digital publics.
Anger is a powerful motivator. I have been thinking about starting this blog for a while. I have been taking notes for a lot longer. I have been playing around with Tumblr for a week or two, but it was not until I got mad as hell today that I had the energy and motivation to write my first entry. So, we will begin our story right smack dab in the middle of things and we will likely zoom backwards and forwards in time from here.
There have been many videos and many thoughtful and not-so-thoughtful critiques posted about the ALS bucket challenge in the past week. Of all the articles that I have read, one comes the closest to saying what I would have last week had I the time or energy: MJ Dinius, “On the ALS Ice Bucket Challenge and Ferguson,” on Avidly. I have posted a separate link to the article if you are interested.
I offer this post as a supplement to that one. Dinius makes the point that rather than getting all caught up in the volunteerism and self-congratulatory generosity of the bucket challenge, we ought to insist on structural changes to our health care and insurance systems. ALS is a terrible disease to get not only because of what it does to your body and your quality of life but also because almost none of your needs and/or costs will be covered by health insurance.
Today, Dustin and I learned that the ONLY care services for which health insurance has provided any support whatsoever will be withdrawn—for good. ALS falls through the cracks of the health insurance system as we know it. I don’t know if you are aware of it, but according to most health insurance providers, bathing, eating, and toilet-ing are not medical necessities. But let’s put this into context: we are talking about living and dying in a country that force feeds prisoners, who dare to protest their abuse and living conditions or the illegality of their imprisonment in the first place with hunger strikes.
As of today, the physical therapists (PT), occupational therapists (OT) and home health aids (who help with bathing) will all go away and they are not likely to return. They are going away b/c health insurance only covers services or procedures that lead to patient rehabilitation and/or recovery. So where does that leave people with terminal illnesses? For someone with ALS, PT is not about regaining strength or functioning. It is about making Dustin more comfortable in a body that is unimaginably uncomfortable most of the time. Physical therapy is a stretching session, during which the PT performs range-of-motion stretches on Dustin. These stretches relieve the physical suffering he endures as someone with chronic muscle spasticity beyond what most of us could imagine. Remember how your body felt on the tightest day of your life, whether due to the after effects of a strenuous workout or the overall tightening caused by stress, and then tighten that exponentially. Within the health care system, this program is coded as maintenance rather than rehabilitation. Maintenance is not covered.
A colleague who teaches at LSU wrote about her experience caring for her husband who has ALS, work, family, politics, ethics, and other issues. She’s an amazing thinker and wonderful person. It’s a long post. It’s hard reading, but there’s so much more to read if you click through. I’ve been thinking about it all morning. As someone who lost a grandfather to ALS, who’s constantly afraid of developing genetic ALS, who cares about ethics and justice, her post really struck a nerve.
In New York the summer will end somewhere on Thursday or maybe next week. I start school on Friday and others go past Labor Day but it’s coming. The summer of 2014 in our northern hemisphere has been merciless and cruel. Two men were shot four blocks my front stoop less than 10 days ago. I can feel the broken ribs in every breath the midwest takes. The live oaks still weep down south even as these last few months were relatively cool. I got my haircut. I’ve pressed a shirt. But. The start of schools feels different this go. So much of what I do is built around ritual and a scholastic calendar. I need new signs, based on final exams or classroom discussion. Make my chart based on listening to students, my numbers are attendance. It’ll all be retrogrades. Whatever. It doesn’t take psychic to know we need a lift this time.
I’m traveling to Los Angeles by train first week of November. Chicago the next. Putting in for early promotion by January. I’ve got a good case, they say. Who knows. Been through three graduations at my AFC house in the last six months. Tomorrow the woman who trained me is leaving and we’re throwing her a BBQ. Everything feels like a lost episode of the X-Files where the planets are all lined up or gravity’s out of whack and everyone can see it all coming but in the end they just sit around and stare at one another in bewilderment and then it’s on to the next. Do you remember the end of the 20th century? Is this that again? No white men killing office workers or bombing Olympics, just black and brown boys getting aced by cops and women of color going to jail. If you listen closely you can hear even the most nihilistic folks sort of catching their breath, not really believing how fucked up it all is, not knowing if it’s still ok to go full scale I told you so. (It isn’t).
If the future’s female she’s black or brown and teaching us to forgive the impossible. If we’re exhausted now imagine how the future feels. Let’s make this fall the future of each student alive, week after week.