Before Lynn was diagnosed with MS, my experience with the condition was from a distance. I knew of a third cousin with it that family members talked about in sympathetic tones of doom. I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully. I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy, Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming. We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…” Lynn didn’t want to have anything to do with any of it. He gave it to me; said, “tell me what you think,” and turned his back on the entire thing. At that point, I believe he was too depressed to let anything in. He wanted to be in denial and would not even let us say aloud that he had MS. His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
With second-hand MS, I didn’t actually have the condition, but I experienced the condition through Lynn. As his caregiver, I went through the emotional adjustment, became the resource library of knowledge about what was happening, and sought out ways to help with each new symptom that he experienced. In the early days, my role was, more or less, his emotional confidante. Lynn was not good about sharing how he felt so I picked up the signals of depression, anxiety, anger, frustration, fear…and would find ways to discuss them without “naming” them.
I also became his “guardian angel.” Lynn was very stubborn about refusing to change his behaviors in order to adapt to the symptoms he was having (another symptom of “if I ignore it, maybe it will go away”). I would move things out of the way so he would not be as likely to stumble or so he would have access to a wall to use for support. I remember him falling all the time and then struggling to get up. Often he would not allow me to help until he was too exhausted to keep going it alone. I searched for and found devices to help in such situations. I bought a “creeper” that I could roll him onto to move him to a better location when he fell. I had small stools of various heights I could use to prop him on to get the leverage I needed to help him off the ground. I would look, listen, anticipate, and react to changes that indicated the “condition” needed further attention; then I would inform the doctor of those changes after Lynn’s response to, “how are you doing,” was always, “just fine; no problems.”
As his relapsing-remitting MS gradually changed to secondary-progressive, my participation in the disease process grew. I began taking on more and more responsibility for our home, the children, outside activities, etc. More and more equipment began entering our home that needed to be stored, cleaned, repaired, and put away as new devices were needed. He began to be able to do less for himself. At first, he just needed assistance in getting into the shower; then, he needed me to fully bathe him. He went from using special utensils and plates for eating to me feeding him. He became unable to empty his bladder or bowels without my assistance. Now, he needs me to help with just about everything he does as far as self-care is considered. Once, I get him started for the day, he’s good on his own till he needs something scratched, more to drink, bladder emptied, clothes adjusted, computer screen moved, TV channel changed, or something to eat. As you can see, even when he doesn’t “need” me, he needs me. Other than experiencing the same pain, fatigue, or other sensations he has, I experience his condition just as he does; only second-hand.
Just like second-hand smoke, the MS caregiver receives the exhaled toxins of the internalized condition. As his caregiver, I “finish” what he starts. I buffer the emotions he spews. I carry out the movement his mind tells him is needed. I experience his life though the second-hand “smoke” that flows out of his MS existence. And just like second-hand smoke, I experience the side-effects of those toxins—the fatigue, lack of sleep, inability to find the time to care for myself, and eventually, I anticipate I’ll have my own medical conditions arising out of being a full-time caregiver. I fully expect not to live as long as I would have otherwise due to the abuse my body takes daily. Therefore, his condition has become my condition and together we face the challenges and the triumphs that is a part of living with MS.
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