I’m Feeling Useless in a Time of Need – An MS Patient Leader’s story

In the days after 9/11, we all did what we could do. Families opened their homes to stranded travelers. We queued for hours to give blood. Chef friends from around New England went to Manhattan to help feed the army of responders.

I, on the other hand, was recovering from a dose of mitoxantrone as part of my fight to find a multiple sclerosis (MS) equilibrium. The chemical in my system meant I couldn’t give blood, and I had to all but sequester myself, as the drug kills off the immune cells for a couple of weeks.

MS had recently made working impossible, and I was on short-term disability, which would soon turn to long-term and then permanent disability status.

Those were days of quiet desperation for me. Alone without social contact or much in the way of connectivity (I’d just moved into a new apartment, so the cable and internet hadn’t been connected yet), and so recently sidelined from my work life, I felt burdensome to a society in need — inadequate on so many levels.

Now I’m more acclimated to my life with MS. I know my limitations, and I’ve found a way to be of use to society within the bounds of those limits. But now, I am sidelined again.

As a nation and the world cries out for help to pitch in during the COVID-19 crisis I am, once again, unable to answer the call.

Within 24 hours of the call for retired and otherwise unemployed healthcare professionals to help in Ireland, 50,000 people raised their hand. I was trained as first-aid responder during my time in the U.S. Coast Guard. My skills would be rusty, but there would be something I could do … but no. MS.

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Again, my sisters and brothers from behind the cooking line who have had to hang up their aprons because of restaurant and hotel closures are shedding their toques and donning hair nets in hospital and nursing home kitchens to spell tired kitchen staff and help feed amassed healthcare workers who are making Herculean efforts. Thanks to MS, I couldn’t stand at a professional stovetop long enough to make an omelet.

Local sports clubs are delivering food and medicine to the elderly and the otherwise medically fragile. I no longer drive much due to, you guessed it, multiple sclerosis.

Even the places many of us have volunteered for in the past, such as MS organizations, churches, synagogues, mosques, sports clubs, scouts, and the like are closed or their activities severely curtailed by the response to this virus. So we can’t even pitch in there.

I suppose the topper to this whole experience is that I am now one of those with a compromised immune system who must self-isolate, both to keep myself from contracting the virus and to not become a further burden on a healthcare system that’s set to be overwhelmed, as we’ve seen in other parts of the world.

This isn’t the first time I’ve felt a missing sense of purpose. It’s been almost 19 years since the feeling became one that I know others with MS and various health conditions are sharing. There is no comfort in knowing that others are coping with a sense of worthlessness. There is even less in knowing that many of us are also scared for the same reasons everyone else in the world is worried.