So I said I might post some of my MS ramblings here. Fair warning: this is long and not at all well organized or well written. It was all kind of stream of consciousness. I have gone back and taken out some of the whiny bullshit, though. After all, I'm not the one with the disease. I'm not completely sure why I'm posting it. Maybe it's because my wife is an amazing woman who deals with all this with an awe inspiring amount of grace, pride, and dignity and never let's me sing her praises.
I should be preparing for a huge party, but I’m not. In fact, the look in my wife’s eyes when I broached the subject a couple months ago told me that not only would the party not be happening, but should I move forward and make it a surprise I could expect to live the rest of my life severely hobbled and in extreme pain. I’ve learned to pay attention to her looks.
We first discussed the idea two years ago. My wife wanted to celebrate the five-year anniversary of being diagnosed with multiple sclerosis. The reason: in the old days, before the invention of drugs that can slow the progress of the disease, life expectancy for an MS sufferer could average five years. That anniversary is in two weeks and, while we won’t be having the party, we have been discussing her experiences more and more lately. What I refuse to discuss with her in great detail are my own experiences taking care of her through all of it. Besides, she already knows.
While I try to be understanding and usually succeed, I have to admit that I’ve lost it once or twice. Once, I made a frustrated and undeserved remark while we sat at an infusion center on Christmas, my wife receiving a two-hour solu-medrol drip. Instead of the anger that would be well deserved, she reached over (despite the excruciating pain it caused her to touch me) and said, “The only important thing is that you’re here with me.” I don’t know that I could handle it with such grace.
The specific symptoms of MS vary from person to person. It’s not my intention to get mired in technical details, so suffice it to say that the immune system basically attacks the brain and spinal chord, causing short-circuits in the signals between the brain and nerves. For instance, my wife once was experiencing pain in her arms from the breeze of the ceiling fan. She said it was like the nerves told the brain “breeze” but the brain heard “someone’s stabbing me with a knife.” It’s a crapshoot which part of the brain will be affected and, therefore, which part of the body will have problems.
The one symptom that all multiple sclerosis patients seem to share, though, is fatigue. Though it usually worsens as the temperature rises and later in the day, it really can be unpredictable. This is often one of the hardest things a caregiver will have to learn to accommodate. My wife and I can have an ambitious day of shopping planned only to scrap everything and return home minutes after arriving at the first store. Other times, she has the stamina to stay out all day. We’ve hosted parties where I’ve suddenly had to take over the bulk of her duties when the fatigue comes over her right in the middle of the evening. It took us a long time to learn to deal with, but we’ve gradually worked out a system of codes that allows me cover for her quite seamlessly. And we’ve learned to leave a lot of room in our schedule.
Speaking of codes, we’ve developed them for public gatherings as well. If we’re at a dinner party or family function, we have code words (for when we’re near each other) and gestures (for across the room) that let me know exactly what she’s experiencing – fatigue, partial blindness, an inability to walk on one side of her body – so I can smooth our escape and get her out of the building without anyone knowing what’s happening.
Multiple sclerosis is a disease that lurks and ambushes, especially the relapsing-remitting form. My wife can go a year without a flare-up or have multiple flare-ups within the space of three months. I’ve noticed there’s always a part of me continually on guard. When I’m away from her I unconsciously check my phone just in case. I never know when I’ll receive a call telling me she’s lying on the floor and can’t move.
One early morning my wife was up before me and doing crunches in the living room. Suddenly, the entire right side of her body seized and she could barely move it. I’m a heavy sleeper and when she called out for me I didn’t hear. She managed over the course of twenty minutes to find a way to roll over and drag herself into the bedroom. I finally woke up and lifted her into bed. It was the start of a flare-up.
I remember returning home from work during the first semester of my wife’s grad school. It was her first time acting as facilitator of her seminar and she’d put a lot of work into it. As I entered the house, I could hear crying in the office. She should have left for school long before. I walked into the office. She looked up at me with wet cheeks, her fingers splayed unnaturally in front of her. “I can’t type,” she said. She had been working on the last handouts for two hours and barely typed three sentences. If you live with someone with this disease, you never know what you’ll be called on to do. I became a very fast typist that day.
It infects every part of our lives. When touring houses to buy the primary consideration was where to put handicapped ramps in the event we need them, whether the house was easy to maneuver a wheelchair in, and where to put handrails. It hurts to have to make these considerations for a person who is only thirty-one and has always been physically active. The chances that she will eventually need the wheelchair are very high. And most likely long before she is elderly. Whenever we enter a room, I quickly scan for obstructions just in case she has problems walking. Around the house, everything is arranged for ease of movement during an attack.
The worst flare-up she ever had combined most of her usual symptoms (tingling, fatigue, loss of motor function on the right side of her body, spasticity) and added a new one: excruciating pain whenever most anything touched her. Even the feel of the sheets against her skin caused her to cry out. As a caregiver, the best tool I have is touch. As she lay in bed shaking with sobs, moaning in pain, sometimes even screaming when the air breezed her skin just so, for hours on end, my heart ached to know I couldn’t comfort her. I wanted to walk out of the room and cry knowing my wife was lying next to me and I couldn’t reach over and hold her.
Lately, the cognitive problems have started. She sometimes trails off in the middle of a sentence and begins a new one and is forgetting words more and more. When we met with the neurologist a few weeks ago, she complained of seeing people at work and knowing she was supposed to recognize them, but was drawing complete blanks. She was given a few memory tests and didn’t perform very well. I know long-term memory loss is rare in MS patients, but I can’t help wondering from time to time lately whether one day she’ll forget my name.
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