When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.
Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.” When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.
“I feel pain when I see young people in wheelchairs.”
This statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy.
I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator. I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go.
When my husband, Khoren — who has secondary-progressive MS — complained of excruciating pain down both arms and something that felt like a toothache, he took some ibuprofen. Just when we started to become familiar with his usual MS-related aches and pains, a new symptom seemed to be coming on to the scene. Great.
I didn’t want to make a big deal of it, but I’d never seen that look of distress on his face before. When he sat up in bed, it gave him some relief, but that strategy soon stopped working. He took a muscle relaxer and another drug for nerve pain that he typically skipped. He decided to head out to the living room so one of us could sleep. I told him I’d turn our noise machine off in the bedroom so I could hear if something went wrong. As it turns out, that was the smartest fluke of a decision I’d ever made in my life.
I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm.
To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.
I have on occasion thought about moving away from Connecticut, where I have lived for 30 years, and returning to my home state, Maryland.
But whenever I start reviewing all the things I love about Maryland, I remember all the things – the people, places and experiences – I would miss if I left my current home.