“I don’t have a name. I don’t know what to do.
The only thing I know for certain is that I must begin to heal.
Just like every time my life was re-created, I had to begin restoring the foundered part of my being: the lost relationships, the familiarity of a neighborhood, the sense of the person I might have been. There is an algebraic term for the technique for distributing two binomials, called the FOIL method. It stands for first, outer; inner, last. And that is exactly how I have learned to repair myself time after time: from the outside in.”
p.233 “The Girl She Used to Be,” by David Cristofano
I am not the person I used to be. Kirsten was first diagnosed with a benign tumor shortly after our youngest daughter, Hayley, was born in 2003. Drugs, surgery, surgery, surgery… It was something that concerned us both, and we knew in our heads that she likely wouldn’t live until she was old, but because it was benign it didn’t affect our lives much. Then, in 2012, our worlds came crashing down. She was extremely weak and frail, and her body was showing serious signs that all was not well. A simple blood test alarmed her doctors and she was admitted to the hospital. It was there, a day later, that she fell out of bed and fractured her neck. It was also there that her adrenal glands were removed to save her life. Internal bleeding after that surgery nearly killed her again. In the space of a few days she had come close to dying at least three times. Doctors assured me that, despite her being put on a ventilator, it was premature to discuss her end-of-life wishes.
I was by her bed coordinating her care until she was healthy to go into rehab. Then I was with her at rehab. Fortunately, my employer had a compassionate heart. Kirsten learned how to walk again and her neck healed. Eventually, she came home.
The intervening years have been difficult. Without an adrenal response, Kirsten’s stress feedback didn’t, and she would get quite unreasonable, irrational, paranoid, and sad. This stressed out me and the girls significantly. Kirsten was still her sweet, kind, strong self, but not even she could out-will her disease. We visited her oncologist at Dana-Farber in Boston regularly. Until she was no longer able, she continued to work at the hospital. At least once a week I’d get a call from her colleagues or boss that she’d gone down to the emergency department for one reason or another. Could be potassium levels. Could be just incoherence.
My world collapsed. I had been quite social, attending book clubs, tweetups, developer meetups, and regular coffee and lunch with friends. As Kirsten needed me and my stress levels exeeded my capacity to handle them, I retreated into tennis. It was my self-care, and likely saved my life. It created in my loads of guilt, though. Nothing was going to make things right. Taking care of myself meant taking a break from helping Kirsten and the girls. Putting everything into them meant I’d increasingly less capability to do even that. It was a catch-22 with the highest stakes.
Since Kirsten died in May 2016 I have sunken into the deepest abyss of grief, depression, and anxiety. I take care of the girls as good as I know how. We moved into a new loft. I try to perform well at work, although admittedly I lack motivation. Some days I just sit on the couch not doing anything. I’m not taking pictures, which I loved immensely before my life fell apart.
I want to be “me” again. I desperately do. It’s only been in the past couple weeks that that even seems possible to me. And that possibility fills me with excitement. I got a gym membership and have been lifting weights every other day. I have also returned to playing tennis, which I stopped after Kirsten died. The guilty associations I had with tennis took all the fun out of it. I have also gotten a psychotherapist. I was seriously depressed and my grief trajectory was in serious decline. Making the call—doing something for myself—had a profound affect on me. It’s been beneficial meeting weekly with him, but the most significant change was a result of just taking that first step. I’m looking forward to getting back on the water this spring, both in my kayak and on a stand-up paddleboard. I also joined a grief writing group, which should be terrific.
While most of the changes in me from the person I used to be are negative, they aren’t all. Becoming a single dad has required me to take a much more active role in my three teenage daughters’ lives, which I have absolutely loved. It’s busy, for sure, between groceries and chores and homework and violin lessons and everything else. Kirsten was an exceptional mother and master logistician. I’m nowhere near as good as she was, but I’m improving every day. She made it look easy.
While the stress of my life these past few years has been intense and sometimes unbearable, I am hopeful and optimistic for my future. My life is now mostly unencumbered and ready for me to write the next chapter. A widow friend of mine told me that our grief doesn’t get smaller with time, but that we expand our lives so that it seems so relatively. Kirsten will always be my princess, but I have a lot of life left and so many good things and people to live it well for. She wanted that for me.