Something Old:The Reluctant Hand, Married to MS (written in 2018)

“I will give you a small glass of water because that is all you need. Only take what you need. A small glass, not a big glass because then you will waste and throw it out. All you need is a small glass.” — Shifu Yan Fan (Shaolin Temple, Los Angeles)

On our most recent trip to New York, my husband, children and I went, to the Holiday Train Lights at the New York Botanic Gardens. As I do before every single excursion, I mentally calculated all the walking I would have to do- from the parking lot, up the stairs to the exhibit, through the mile long path of the show, back to the car. I plotted it out, anticipated and worried if I should bring my cane, a stroller, or if I could simply rely on my husband, on holding his hand. There is no space for impulsivity with MS, every move is carefully planned; the idea being to control the small things that I can instead of the big things that I cannot.

I love my husband. He is absolutely the love of my life. There is no other. I have loved him, in one way or another, since the moment I first saw him 26 years ago. I can still see him just as I did all of those years ago and in those moments, I see myself back then too. He is so much my other half, that sometimes, I see myself in him and find that I am mistakenly angry at him for my own failures, my disappointments in myself. Of all the wrongs, all the bad choices and experiences, he is the right. This is truth. There is no but that will follow. We chose each other, however, what neither of us chose, were my diagnosis with MS during our first year of marriage. So when we got married, he did not choose a partner with MS and I did not knowingly choose him as my partner in this journey with this illness. He is not perfect, I am not perfect and collectively, we are not perfect in this marriage of ours to an uninvited third party- MS. And so I come to this place where I wonder, in advance of this simple outing, if I can rely on him to hold his hand.

As it turned out that day, I did need to hold his hand. I made it up the stairs and through half of the lights perfectly happily independently until the floor changed from smooth carpet to uneven, potentially hazardous, tiles. At that point, I reluctantly reached for his reluctant hand. And I held it for the rest of the time, acutely aware of how it felt; our hands, almost an entity onto themselves. Both of our hands were reluctant; his not holding back, not wanting the responsibility, the weight, the pressure and mine, not wanting pity and dependence and helplessness. It is amazing how a feeling so subtle, almost unnoticeable, like the friction between two hands on a cold winter day, can elicit so much emotion and information. If we acutely pay attention to our bodies, we learn so much about our minds and if we trust in this knowledge gained, there is so much potential in what we can challenge our bodies to do. Just like the small glass of water, we can take just a little, just what we need, and make the absolute most of it.

Before the first symptoms of MS appeared, now almost 12 years ago, I was active, athletic, and risk-taking adventurous. I am still all of those things in my imagination, in my heart and soul. But in reality, in this physical objective reality, I am not (right now). When my husband and I said our carefully written vows, I was that person. That was whom he married and that was my self-perception as I married him. We were, both of us really, unfortunately dealt a challenging hand very early on in our marriage. And just as we reluctantly, at times, accept each other’s hand, we both, united, reluctantly accept that uninvited hand.

While I can’t speak for my husband, I understand his reluctant hand—the burden of chronic illness despite my optimism and active pursuit of health, the fear for our future, the inherent limitations; the weight of illness is a heavy one. Even though I try constantly to maintain a lightness of being, the weight is undeniably a heavy one. And the responsibility in holding my hand is far greater than can be normally imagined. At times it may seem as if my life literally depends on it.

When I was first diagnosed, I shut everyone out. I didn’t want anyone to mention MS, to ask questions, to say I’m sorry, to say anything. I wanted silence. Nothing. I have always been independent and I have never liked help or felt comfortable with sympathy, always reluctant, too much so, to ask for a hand. This was a very sudden scenario where I might need to ask for help, a lot of help. Asking for it, meant acceptance, defeat, and a loss of self-sufficiency. While my relationship to this diagnosis has evolved, my hand, as it reaches for support, is still reluctant. In those moments, I feel sad, dependent, and weak. Of the two of us, my hand is by far the most reluctant.

I realize that my reluctance is not directed towards the support offered by my husband, but instead, it is my reluctance of accepting defeat to that other hand-MS. I accept this diagnosis. It is fact. I have this. It’s in me, a part of me, until it is not, in one way or another. But it will never have me, it will never define me, and I will never lean on that hand in helplessness. What that means specifically is that I will never not try something because of MS, I will never stop hoping, and I will continue, in my work, to develop a method of self-healing. My physical endurance and work towards healing will not cede defeat nor succumb to reluctance.

However, when I reach for a physical hand, despite whatever fight I have in me, I still feel defeat. Even though I am not defeated, I am feeling defeat. What I realize now after writing this, is that if I can lightly grip a helping hand, drink just a little water, take in just enough help so that I can establish my own footing and feel self-empowered, then perhaps I can train my hand to no longer be the reluctant one; perhaps I can feel supported and self-sufficient simultaneously. Without any reluctance.