I wrote last year when my divorce was official that my health was one of many contributing factors to the end of my ten-year relationship and five-year marriage. In the midst of transplant, declaring the end of my marriage, staying alive through HSCT, getting to the divorce, and subsequently closing a major chapter of my life, I realized I didn’t have the time or space to reflect, to mourn, to grieve the loss of that person in my life who I thought I would grow old with. Writing brought me comfort and a way to make sense of the chaos of my life. I even managed to get paid for it and write my “how to” for Hello Divorce.

In January this year, the divorce hit me like a ton of bricks. I’ve gone through many an emotion from hatred to disappointment, sadness, and grief. But the thing I keep coming back to, even a year later, is that I have no idea what the marriage vow “in sickness and in health” even means. I have no idea what the gold standard is or what we should expect of another human. What is a realistic expectation of another person when your physical abilities change? Are physical changes easier or more difficult than mental changes? Does the choice to stand by someone’s side alter if the individual affected has personal agency over the change? Is disability more palatable if the person had no choice in the matter? I did not catch MS. I did not cause my swift deterioration and disease progression. I in fact tried everything from terrifying pharmaceuticals to diets to physical therapy. I thought I could meditate my neurodegeneration away.

Throughout my life — health and illness — it never occurred to me to question if my friends would stick by my side if things got tough. I never thought I would lose my family members. Never, for a single moment, did I think my neighbors would fade away because they couldn’t handle what was going on; that they would look at me differently because I now use mobility aids.

I have been and continue to wrestle with my feelings, my grief and my healing, because if I’m honest, this gets to the heart of what I feared and even anticipated from my spouse.

Why does a marriage require a vow, but friendships don’t? Why in the wedding vows and ceremony do we make the other person say, “You should really stick around and help when times get tough. You’re going to, right?” I think it’s there because it provides a theoretical insurance policy.

We should be there for those we love, because we love them, period.

2013

Ten years ago, when I was diagnosed with MS on my birthday, my boyfriend at the time (turned husband, turned ex-husband) stuck by my side. He was solid, steady, unconcerned and unphased. He was the first to say, “I love you,” the first to declare he would marry me, years before he asked. I told him at the time that I would understand if he wanted out of our new, untested relationship; I wouldn’t hold it against him. I meant this. I gave him a legitimate “out” in the face of uncertainty. A life of chronic illness and possible disability was a heavy burden on a new relationship. He told me I was crazy, he loved me. He was in it; MS didn’t change how he felt about me.

I remember thinking, though I never shared this with him, that I am not sure I would have made the same choice. I am not sure, in a brand-new relationship, that I would be able to handle the ups and downs of disease. I’m a planner, the uncertainty would be my kryptonite. I was also less certain about him, about our love.

He was supposed to be a groomsman in a wedding in wine country. He changed his plans, told his buddy he was sorry, got on a plane and flew to me. My mom left and he arrived like a changing of the guards. He friended my friends and family on Facebook and planned an entire birthday re-do to replace the one I lost in the hospital. He told me he would need to always be at his federal job in order to ensure my health care coverage; he needed to make sure I was taken care of. He even proposed on my birthday “to take the day back for good.”

His steadfastness, calmness, and determined nature were comforting in a time of absolute catastrophe. I couldn’t believe my luck. Friends and family members praised him for how he acted in the face of my diagnosis.

Fast Forward 10 Years

I realized somewhere in the last 12 months that although I probably would not have stuck by the side of a new boyfriend diagnosed with MS were our situations reversed, I would never have done what he did during transplant. I would never have quiet-quit our marriage, refused counseling, and outside help. I wouldn’t have hidden away, refused to help, to try, to participate when my partner needed me most. I wouldn’t have let the fact that other people were stepping up, confirm that it was ok to retreat, to avoid, to not even try.

I’m an avid reader and Jane Austen fan and I shall plagiarize her narrative in Pride and Prejudice referring to Mr. Darcy and Mr. Wickham: “One had all the goodness, the other all the appearance of it.” The difference in this case is there’s a 10-year change of the same person, not two different individuals. My ex-husband was there for me when it didn’t take much and absent when he was needed. He said all the right things in the beginning and had none of the substance to back any of it up.

I found comfort in reflection. I no longer blame myself for a bad choice, wasted time, and fleeting years. The man I married, is not the man I divorced. The reverse is true for me as well and he has his own perspective and opinions. We are supposed to grow and change; but I thought we signed up to do that together. Up until the day before our divorce, he held to the fact that he was there for me and did everything right, that he was blameless. I didn’t choose poorly; people change, and some become stronger, braver, more vibrant and brilliant in the face of adversity and others run scared, hide and retreat into their reality, their privilege and their safe delusions.

Watching Couples

I see the vow carried out in so many different ways as I witness other marriages. Is part of the couple supposed to bear the entire responsibility if one member does nothing to maintain their health? Is one person in charge of caring about health and wellness; food, exercise, doctors’ visits and everything in between? What about the administrative burden of scheduling checkups, annual visits, preventative screenings? What if one person feels their health is guaranteed without any participation as if they are untouchable and infallible?

What does the marriage contract mean when someone loses their executive function and their personality as can happen with Alzheimer’s, dementia and even MS? I don’t have answers to any of these questions. I don’t think there is one way it happens. And I think there are couples who are better suited to support one another than other couples.

I watch. I witness. I wonder.

I still don’t know any outward sign to determine who is up to the task of being a caregiver. Who intuitively knows how to help. Who does not require a to-do list to show up and complete basic tasks that contribute to a shared life. I don’t know the rules. I am ill prepared. How do we differentiate the weak from the strong? Is it all chance?

Experience and Programming

I have zero faith in men right now. Even writing that, I know I shouldn’t let one experience dictate my opinions of an entire gender. But when someone says they will be there, I question their sincerity. When someone says I’m beautiful, I don’t believe them, I question their motives. I’ve learned to be disappointed rather than to trust. I’m programmed to assume I will be forgotten, discarded, and lied to rather than cherished and taken care of. I was utterly disposable once; it will happen again. 

Amidst my transplant and divorce people around me, people close to me, were worried about my ex-husband. Still in writing this, this fact astounds me. People assumed I was strong and could handle it, and that something must be really wrong for him, with him. Was he ok? Did he have the support he needed? Did I know?

I’ve become incredibly strong and resilient because I had to, not because I wanted to.

My Enlighted Modus Operandi

The standards for my friends are now the standards for potential partners. I made that mistake before, and it shan’t be repeated. I’m not here to give anyone a cheat sheet on how to care for me; figure it out, ask questions, try and fail, but step up. I don’t want someone to “help out” when the thing they are allegedly helping with is actually a task that contributes to our mutual life; and nowhere is that task automatically delegated to me because of my can-do attitude or my gender.

I see good men in friends’ partners, and I think they are the exception, not the rule. I continue to watch and fight my negative bias. At my core, I am hopeful. I believe there are good people, good men. But in my life, “one true love” or “soul mate” was never something I aspired to. I have never sought “my better half” because I’ve always been whole. I’ve always loved the single life and relished in my solitude.

I was lonelier in a bad marriage than I have ever been in my own company.

Absent of a vow or ceremony, I know the people in my life who are here for better and for worse, in sickness and in health, till death do us part and that’s more than enough.

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