The Cruelty and Kindness of Life with MS

At The Liberty Bell finally!

There is nothing good about living with Multiple Sclerosis. However many good things happen while you are living with Multiple Sclerosis. The former sometimes makes it difficult to appreciate the latter. Lately I have been reflecting on both. I think it is important for my partner Chris that I acknowledge, because it’s his MS and not mine, that life can be cruel. It helps him remember that I am aware and present, and I am not oblivious of his challenges, especially the ones I can’t share because they affect only him. Simultaneously, I find us often remarking on how generous and gentle the world can be in spite of those challenges, and sometimes because of them. It’s important to be aware of that, too, and to remain grateful.

I have spoken before about some of the biggest losses we have mourned in the last 4 years. It’s been so long I had almost forgotten how often Chris would force me to go on long walks with him. Chris has not forgotten. In Manhattan, in Red Bank, NJ, at the mall, in the park. I hated it so much. He loved it. Chris had a walking lifestyle until his MS diagnosis. He has lived in world cities where that’s all you do. He misses this terribly. These days though, maybe not as much as he misses the consistent energy he used to have. MS-related fatigue is one of the most pernicious symptoms because it can ruin everything. It derails plans, events you looked forward to, an activity in the middle of the day, or even first thing in the morning. It hits out of nowhere. While he’s getting ready for work. While enjoying dinner with his friends. While he is already sitting down on the couch doing nothing! And it makes it impossible for him to enjoy any of those things. We find ourselves looking forward to scheduled plans with a mixture of excitement and anxiety.

Persistent pain has similar effects. It colors the whole day, his whole being. It makes it impossible to be present in the moment, happy and fortunate though it may be. It also hits pretty quickly, and makes it hard to make plans. It causes him to cancel plans as well, which he hates to do. But more pervasive than the fatigue, the pain, and the mobility issues is the uncertainty about the future. We are often reminded that we should prepare for this to get worse, not better, and not if but when. That particular cruelty is one we still don’t share with each other, engaging in a little denial, embracing the present for now.

Chris works on his arm ink, to outline his arm pain.

As a partner, there’s not much I do in the way of sharing the load. If you know us, you know I am totally winging it. What I can do, and what I try to do everyday, is remind him that we are lucky. To be fair, if you know Chris at all you are aware he never needs reminding. He walks through life grateful and smiling. We have both become much more appreciative of life’s small kindnesses and I am not so sure if that would be the case if not for the MS. And examples of those small kindnesses are everywhere.

We just wrapped up a relatively mild winter season. However winter is generally dreaded in our house. We can’t shake the anxious feeling that precedes the need to shovel. Our driveway is giant. I am 4 feet 11 inches tall and weigh 100 pounds. I can maybe shovel a corner of the driveway before I collapse into a useless heap. There’s also the footpath that we are responsible for. It’s all fraught. Luckily in the past 3 years we have experienced what it feels like to be surrounded by generous spirits. We have two neighbors across the street who have watched Chris struggle and don’t hesitate to help. It happens, I believe, without even a second thought. Every snowfall, we essentially wake up to a freshly snow-blown driveway, ready for me to make my way to work, a clean and compliant footpath, and a perfectly clear path to our front door. We have expressed our thanks with bottles of scotch, baskets of cookies, gift cards, etc. It’s clear that our neighbors expect nothing in return. We also have a lovely nurse who lives next door, who constantly checks on Chris, is mindful and generous with advice, and will often bring up our trash can and place it next to our garage, to save Chris that particular struggle which has in the past resulted in some nasty falls.

And that’s just relative strangers! There are other, more subtle examples of generosity that are not lost on me, and these are from our family and friends. They are organic, and no less appreciated. It’s in the patience shown when we are late, the allowances made when deciding where to meet up for special events, the consideration that is always unspoken regarding activities, venue choices, and the expectation of our participation. My mom, notorious for her Latin Mom guilt trips, no longer ever flexes that muscle with us, even if it means we go a month without visiting, to avoid the long drive on the weekends and allow Chris to spend that time recharging his batteries.

There are the phone calls to check in, the visits, the sensitive and tactful questions, the emails with advice and relevant articles from co-workers, the flexibility from bosses who understand about the bad days. There is that comraderie he feels with our dearest friend also living with MS, a kinship I wish didn’t exist and at the same time am incredibly grateful for. And of course there is a bit of luck, completely blind fortune. That we have private health insurance paid for by my employer. That we are both gainfully employed and can find joy in trips and comforts that many dealing with Chris’s disease can’t.

In short, it’s a mixed bag. Its a complicated flavor palette, and we would be doing ourselves a disservice if we didn’t embrace the lot. Fully and humbly accepting this super shitty situation, while concurrently conceding that it’s not that bad, for Christ’s sake, lots of people have it worse, you are terrifically lucky, so stop whining already!

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