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17 May 2017

Lost and Found

Marilyn McArthur discusses multiple sclerosis, numbness and mindfulness in her latest blog post for Overcoming Multiple Sclerosis.

The weekend hike was a complete success start to finish, because my locomotion was good that day, and I was able to keep up with the others.

Then I noticed my phone was missing. My dear friends cheerfully conducted the obligatory search, all the way back to the meadow where we had rested and taken a group photo with that very phone.

Experiencing numbness

It made no sense, the phone was nowhere to be found, and we said our goodbyes with me swallowing my shame for being the weak link in this outing after all. Back in cell phone range, we dialed my number, the phone rang softly, and we pulled over fast and jumped out of the car to look for it.

The muffled bleat emanated from my pants leg, in the vicinity of my ankle. I pulled the thing out like it was a hot potato, and stared at it on the ground.

My skinny jeans had held it securely in place, after it traveled down from my waistband where I stashed it instead of in the back pocket of my jeans. Later at my desk, I took up an essay I had begun on the health benefits of meditation for dealing with numbness in multiple sclerosis.

I meandered through an internet search of science, news and videos about stress-induced injuries to neurological functioning, and it led me to the dead end of numbness and its scarier partner, paralysis.

Mindfulness vs incapacity

With my self-respect still smarting from the phone debacle, I felt the muddle of emotion and sensation that living with multiple sclerosis is, between the sweet soft breath of mindfulness and the looming threat of total physical incapacitation.

Other people meditate to save their lives as well, but to arrive at being in the present moment with multiple sclerosis has its own peculiar challenges, and not all of them are readily perceived.

Numbness (loss of sensation), if it is mild, can escape a person’s notice. My fingers don’t feel numb to me, but they’ve grown clumsy enough that I don’t like to knit or even thread a needle any more.

Same with the feet; they do not feel numb to me. I just know they don’t grip the earth as well as they used to on an icy path or rugged terrain.

Numbness is the absence of feeling, so no, I do not usually feel anything wrong with my hands or feet. It can work that way also with paralysis (loss of strength and voluntary motion). It is impossible to generalize about these two, however.

Numbness and paralysis

Numbness and paralysis can present together, or not; either one may be accompanied by pain, or not. Either one may come and go, or not, and take up permanent residence instead.

I do not feel paralysis on days I lie in bed too tired to move my bones. It is easier to admit to fatigue than think of loss of strength as a prelude to paralysis.

Furthermore, since numbness and paralysis can develop slowly, unbeknown to us, we do not necessarily know how we come off to other people. Someone in the family once told me I had “the look.” He learned the term from a colleague whose wife has MS, and it relieved him to have the change he saw in me acknowledged with a label. Mild facial paralysis can be a telltale sign of the onset of MS. Who knew? My face did not feel any different, although that news flash stung for sure. I didn’t know my face was being called a name behind my back.It all adds up to a weird mix of desensitization processes on the one hand, of dulled nerves that can leave me slow on the uptake, coupled with a sensitivity that makes me startle at the drop of a hat, not to mention the super sensitivity of self-consciousness, a constant companion once you know for sure you look funny when you walk.

It started with my phone...

And I mean really, how mortifying, to go around for hours and not notice you have a phone on your foot. It’s all so embarrassing, no wonder MS is not a topic of polite conversation.

More important, embarrassment, denial, and numbness can conspire to keep a person on the inside of a strongly defended façade.

The one occasion I saw people with MS come out of their shell and just hang around with their defenses dropped was at the Overcoming MS symposium in Boston last November.

One hundred or so people traveled from all over to spend a day together and hear the Overcoming MS team, Professor Jelinek, Associate Professor Craig Hassed, and others, speak on various aspects of the Overcoming MS Program. There was a certain je ne sais quoi in the room, the élan of people unexpectedly released from the constraints that accrue in service of self-protection.

Release from self-consciousness

With direct gazes and easy smiles and what the heck, allowing ourselves to be seen as we were, quirks and all, we mingled with ease in a palpable release from habitual self-consciousness.

It was rather marvelous, what we spontaneously created that day, in the windowless basement of a city conference center. And the thing is, this open exposure did not feel like vulnerability, it felt like strength.

The logic of this alchemy I found spelled out in Brené Brown’s TED Talk on the power of vulnerability. “We numb ourselves”, she said, meaning the whole of the western world, as we over-eat, over-medicate, and addict ourselves into an oblivion of desensitization.

And she is not even talking about the literal disconnection of nerves; or maybe she is. In any case, desensitized, we disconnect. Disconnected, we do not thrive. Read that any way you want. The question comes down to how we wear our vulnerability.

Do we put up our dukes, to preempt attacks? We know that the tension needed to hold a fighting stance sends neurotoxic substances coursing through the body perpetually. I for one give up.

It is simply a fight I cannot win. Living openly with vulnerability, on the other hand, Dr. Brown found to be a defining characteristic of people who are healthy and resilient, mentally and physically. This positive spin on vulnerability resonates with what we know about the benefits of mindfulness. Both entail willingness to be open to the world as it presents itself, with no expectation of perfection in oneself or others.

 A vulnerable stance understands that the world is full of uncertainties and challenges, and that those are better approached with the curiosity of a problem-solver than aggrieved indignation and anger.

As the saying goes, “the only way out is through.” In meditation, this means literally breathing awareness into and through the body. The face, for example, likes a little attention.

Be kind to yourself

Sometimes I start a body scan at the face instead of the feet. Like make-up, you can apply relaxation to facial muscles, sending awareness and some fresh oxygen to your tensed up temples, eyes, jaw, the whole darn head. Reasoning has it, with both mindfulness and vulnerability, that you are not going to get anywhere if you are not kind to yourself.

So go ahead and try it. Try being tolerant of your limitations today. Make an effort to discipline your mind, and not allow it to downgrade yourself or others. Catch it when it rambles aimlessly, when you ought to be paying attention to something. We cannot know for certain if rehearsing the regeneration of nerves will do the trick, but we can imagine that it can. We can imagine that connections which have been interrupted or even severed can be reestablished. And to some extent they can; science is steadily documenting the marvelous capability we have to reconnect, reignite a spark, turn on a light. Finding something that was lost can make you laugh all the way home!

Note: Here is a good animation about nerve damage and regeneration. Today with a brain training technique, even paraplegics have experienced partial recovery of movement and sensation. In the New Yorker magazine, Dr. Siddhartha Mukherjee tells a story about Love in the Time of Numbness. Anton Chekhov traveled very far, to un-numb himself from the rigors of life as a physician in tsarist Russia. Mukherjee muses on comparable threats of desensitization in our time.