I have been incredibly transparent throughout my health journey with HSCT and consciously chose, even in difficult times, to focus on the positive. My attention remains on the people who showed up, loved and supported me, and did whatever was needed to get me through the most intense medical time I’ve ever faced… but that’s not the whole story.
Being a caregiver — the support system, the inner circle to someone going through what I have this year — is not easy. And the reality is, not everyone can handle it.
I’m four months post-transplant and finally starting to feel like myself again. I have the mental and physical bandwidth to focus on something other than staying alive and fighting for my life. That means shedding light on the other major update in my life: I’m getting divorced.
None of us have a roadmap for support and there is no guarantee that those we love will rise to the occasion. I found myself in the middle of the two extremes. One person (the one who I exchanged vows with) exited my life. He chose to not participate in my care, our home, our life. In the other extreme, an overwhelming amount of friends and family swooped in, identifying the deficit, and rose to the occasion to ensure I was safe in my time of need.
Nobody gets married expecting to get divorced and most people take the vow “in sickness and in health” without actually thinking about what that could entail. Even knowing I had MS, I suspect he never thought about the true repercussions of my diagnosis prior to proposing. According to the CDC, six in 10 adults have a chronic disease in the U.S. and four in 10 have more than two.
I knew that what I needed from him and asked for, was not unreasonable. I also knew, no matter how well I communicated my needs (and I’m a professional communicator!), he was not going to meet my definition of a good partner. After much reflection and introspection, I came to know that I would rather struggle alone than be in a relationship where I wasn’t supported. Toughing it out in my marriage, despite the mental, emotional and physical strain of a toxic relationship, was not worth it to me.
Now, and over the last several months, I’ve had to be selfish. My life was at stake; I didn’t have spare time or extra energy to communicate how to help me or how to be supportive, I needed him to do and to be. He either could not or would not be the support I continue to need.
I couldn’t carry the communication burden of our relationship and focus on my health, healing and survival. I came home from the hospital in May and asked for a divorce. I don’t know when the right time during a medical trauma to ask for a divorce is. Is it ever a good time to further blow up a life? There is fighting a losing a battle, there are hard truths and there is action. I am a doer. I find solutions. I made the choice to separate and seek a divorce smack dab in the middle of the hardest season of my life. It was not an easy decision or one taken lightly, but I would not compromise my values or my health any longer. I refuse to accept less than I need and I deserve.
I have flippantly said to some, “I think he thinks I was just out for a teeth cleaning.” I joke but it’s true – he wasn’t there, he never saw the bad. He was not with me when I had chemo at any point. He didn’t stay with me while I was in the emergency department for 18 hours. He visited me once the entire month I was in the hospital and only after I was on the mend. He wasn’t there when I stopped breathing, turned gray or when my blood pressure dropped to 70/40. He wasn’t there when my eyes rolled back, an emergency response team was called or when I couldn’t eat. Other people were there, not him.
To this day, he has never verbalized that my illness, my disease progression and my HSCT treatment were too much for him to handle. To be honest, I wish he would, but I’m not holding my breath. He might claim that he was there for me or that we had problems all along. But in this case, actions speak louder than words and his inaction spoke even louder.
I’ve dealt with a tremendous amount of grief this summer. My body and heart have been put through the ringer. I chose to focus on the good and lean into the friends and family who lift me up but it’s been a roller coaster to say the least. I’ve had to let go of the hopes and dreams I took into my marriage and the version of myself in that partnership. I’m dealing with massive feelings of abandonment and identity. I will need to learn to open up about my illness and disability when I start dating again.
I’m grieving the old versions of me and working to shed self-imposed expectations of what life looks like. I’m simultaneously grieving the past version of myself as I step into the new me. One person’s lack of support does not negate the dozens of people who have been there for me every step of the way. I do not wish him ill will, but I do wish him gone.
One response to “In sickness and in health… or not”
I love you so. This is so raw and pure. Thank you for sharing this. Thank you for continuing to tell your story and help other by doing so. You are utterly and profoundly amazing.