I’ve avoided writing on this site for months now. There was plenty to write about, but I just couldn’t bring myself to share most of it. The emotional intensity of the last several months left me tired, and sad, and unable to make enough sense of what was going on to post anything.
Fifteen months ago my mother was diagnosed with ALS (Amyotrophic lateral sclerosis – better known in the U.S. as Lou Gehrig’s Disease). Mom was a proud, private person and she didn’t want anyone to know what was going on. Of course I respected that wish. But over the months that followed, honoring her need for privacy became more and more complex. Except for cute puppy pix I have stayed very quiet or cryptic in social media, and almost all of my online publication and research has ceased. All of my communication skills, it seems, were dedicated to fighting this insidious, despicable, cruel disease.
There is no cure for ALS. What is profoundly worse in some ways is that there is no treatment. All anyone can do is monitor the disease’s onslaught and try to help the patient suffer through it. And they do suffer. I truly cannot imagine how the doctors and nurses and therapists and social workers make it through every day knowing this – having no hope to give other than the possibility that someday there will be a drug trial. It must be exhausting and debilitating for them, and yet they demonstrate grace and kindness at every turn. And they helped us make decisions and support Mom in ways I could never have predicted. If you look at ALS literature and online forums there is a lot of mention of caregivers. I couldn’t wrap my head around that for a long time: my preconceived notion of a caregiver was someone you hired. But we – my siblings and our family – were ultimately Mom’s caregivers We arranged for treatments and negotiated with agencies and fought with insurance companies and prepared ourselves for what might be coming next so that we could help Mom come to grips with it. And when we weren’t doing that, we were trying to come to terms with all of this for ourselves.
For the past year we’ve raced back and forth to Connecticut to do whatever we could. We took turns going to the bi-monthly doctor appointments; we interviewed assisted living facilities. Mom decided she wanted to be at home, so we rented and bought equipment; we built ramps and stair glides. Ultimately one of us was always staying with her – either my sister and brother-in-law or I were sleeping in the room over the garage. My brother was making regular trips, too. We hired visiting nurses and CNA’s to do what we couldn’t, but we needed to be there. This school year my incredibly understanding bosses at Georgia Tech gave me the time and teaching flexibility to be away from campus – at first once a month but ultimately every 7-10 days. They helped me to design a hybrid course that would allow me to teach remotely without undermiing the student experience (I’ll talk about how/whether/if that worked some other time.) I will always be incredibly grateful to them for giving me the opportunity to be with Mom and my family so frequently
Everything since last summer is a blur. I wrote job applications while sitting in Mom’s family room and Skyped with students from that freezing room over the garage, but events of the fall and winter all mix together in a way I can’t sort out. Weather was our enemy – Hurricane Sandy, Snowmageddon – and holidays were hardly happy. Although one of us was always in the house, my sister and I realized we didn’t actually see one another for almost two months – we talked at least twice a day and texted constantly but were never in the same physical space.
We are a close family – and I’ve learned that in some ways we are unusually close. We’re particularly good at dealing with trauma. My sister, brother, and their spouses divided up tasks based on our strengths and abilities. We configured our (and Mom’s) laptops and iPads and smartphones, maxed out our data plans, relied profoundly on Dropbox and Google docs and Skype. We were glued to our phones (I still flinch when someone texts me.) We did everything we could, but it feels like we were always one step too slow or didn’t anticipate the one thing we should have been prepared for.
ALS is horrible and cruel. It affects motor neurons in the brain and spine. First affected are the extremities – it becomes more difficult to walk, to stand, to sit, to hold a glass or a fork. Then it affects the throat and lungs, so that it becomes impossible to swallow, to eat, to talk. The one thing it doesn’t affect is the brain. Mom was trapped in a body that increasingly became a tomb and yet *she* was in there. Because it is so rare, most health care agencies aren’t trained in what to expect. Sometimes angrily we had to stop a new nurse or aide from infantilizing Mom. They would shout at her as if she were deaf. They talked as they might to a child, assuming she was mentally diminished. We bought Mom an iPad for her 75th birthday last summer, and that iPad became her lifeline. She was able to e-mail, and text, do her banking (!) , listen to music and audio books until the last few days. It was through her texts that she could express her personality, and be funny, and let us know she loved us, and tell us what she wanted and what she didn’t.
Mom died on March 24. We knew it was coming, and we were all there with her those last few days. My nieces and nephew were beautiful; Mom rallied each time she knew they were coming, and they wrestled with their fear and confusion to hold her hands and make her laugh. And Mom was there with us. And for that I am also grateful.
My sister suggested that we’re all experiencing a weird form of PTSD, and I think she’s right. For the first few weeks I would not let my phone out of my reach in case of emergency. I fstill feel like I’ve forgotten to call a doctor or nurse or hospice or the pharmacy. I wake up panicked, thinking that I’ve heard Mom calling for help. I’m angry and depressed and giddy and exhausted and wired and confused. I haven’t been able to focus on grading – if I finish grading that means the semester is over and if the semester is over that means the past four months are over and there’s no going back. I’m not sure what I’ll do with time.
My contract at Georgia Tech has come to a close and I’ll be starting a new job this summer. There are conferences to plan and articles to edit and write, and research to pick up again. I need to find a place to live, pack up my stuff, and move on.
The world has moved on in the periiphery for the past year. Wonderful things and horrible things have happened. I’m starting to engage with people again, but that’s proving difficult. I’m still cautious about posting to Twitter and Facebook, and writing this post has been both dreadful and cathartic. After re-reading it I know it lacks much in terms of structure and there are huge gaps in narrative, but I think I’ll leave it as is. Perhaps some other time I’ll try and write something more sensible. Consider this brain-dump an attempt to connect.