I Am Feeling the Itch

Sometimes, I feel the itch to do things I used to do before MS, like travel, hike, golf, and stand up to pee. Recently, I've felt the itch to socialize with people, like I did before the pandemic. I miss fine dining, casual dining, grabbing a drink downtown, and asking outrageous and inappropriate questions of our friends in person instead of through Zoom. Irreverence doesn’t carry the same punch in two dimensions.

A different type of itch

The itches I will address today, however, are the ordinary ones that pop up all over my body — no more or less often than the average person. Because of my MS progression, I can no longer reach these itches to scratch them. The most common and most infuriating are the ones on my face and head. For most of my life, I didn’t think about scratching my itches any more than I thought about digesting my food or pumping my blood. It just happened.

Today, with my hands lying useless on my lap, these unscratched itches vacillate between annoying and maddening. Out of desperation, I’ve called into action all 43 muscles in my face. If the itch is on my forehead, I might furrow and then unfurrow my brow while simultaneously raising and lowering my eyebrows. It rarely helps. Still, I feel better for having tried. If anyone were to spy me during these times, they might think I was going crazy, and they might be right.

I may be going crazy

If the itch is on the left side of my nose, I sometimes slide my lips to the right as far as I can, in pursuit of relief. A small child, observing me, might ask her mom, “Why are that man's lips on the side of his face instead of under his nose?”

When I eventually give up on the facial gymnastics, I must decide if I’m going to ride out the drip, drip, drip of this slow torture, or if I’m going to ask my wife Kim to scratch it for me. I try not to take advantage of her good nature or otherwise drive her crazy. I love her as a life partner and rely upon her as a caregiver. Neither of those relationships flourishes if she is reduced to pleading with the universe, “I need five minutes of peace. Is that too much to ask? Five minutes?”

So, I try to find something to distract my mind, because I know the itch feeds off my discomfort. If I stop giving it my attention, it gets bored and goes away. Yet, sometimes I crack under the pressure and call for Kim.

Considering a different kind of help

I read somewhere that I could qualify for a Capuchin monkey as a service animal, like a service dog but with opposable thumbs, and that this monkey could scratch my itches. True story. I ran the idea by Kim and Casco. Kim rolled her eyes and shook her head no. Casco meowed and went back to pretending I don’t exist. Then again, that's how he responds to all my overtures. Bottom line — I don’t see a service monkey in our future.

The inability to scratch my itches has become one of the top 100 things I most hate about having MS. It ranks well below the inability to walk, but it is right in the mix with the inability to, say, put on and take off sunglasses. If a magical fairy approached me (could also be a wizard or a genie) and gave me the choice of restoring my ability to put on and take off my sunglasses or my ability to scratch my itches, I cannot guess which I would choose.

I would probably say, “Is that the best you can do?”

Unexpected losses

People don’t think about these more obscure abilities that we lose when we have MS. I know I didn’t worry about scratching itches for the first 17 years or so after my diagnosis. I never said, “I can’t walk anymore, but at least I can still scratch my itches.”

Itch scratchability wasn’t on my radar. MS takes so much. What will it take next?