Creating space to pause, reflect and share experiences with dying and death

Showing up is enough

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Showing up is enough

The first time I saw my husband’s scar the length of his chest, he told me it was from a biking accident. I had no reason to believe otherwise, so I didn’t ask many questions.  About a month later, when I saw his medic alert necklace and asked him about it, he came clean and revealed that he had had a heart transplant eight years previous when he was 30. Curious and fascinated, I asked many questions. He had been hesitant to tell me the first time due to the wide variety of reactions he had previously received from other friends: from love and acceptance through to distancing and keeping him at arms length. He just never knew how people would react to that information.  He didn’t want to scare me away.

With my privilege of good health (and for the most part, that of those closest to me) and my limited knowledge about transplants, I did not at that time understand my husband’s intimate knowledge and experience of death, and dying, nor the fact that thinking about and coming to terms with his own death was part of his everyday life now.  At times overwhelming and all-consuming, and at times (hopefully most of the time), on the back-burner — something always running in the background. Certainly not something most people our age were grappling with.

Early on in our relationship, I noticed that he had a great capacity for living in the moment.  Something I had not been very good at before we met. And something that I think comes sharply into focus when you have the experience of confronting death head on. With time, I have learned to be more present and mindful.  Through his example and through that of others. Our life now, 13 years later, and with a son, is good.  Medically speaking, there are good years and bad. The birth of our son, was life-changing, as it is for most new parents.  While I was going through my own transition and finding my way in a new role, I did not realize that a big part of my husband’s own transition was coming to terms with the notion that he might not be around for the duration of raising his child into adulthood. I think it haunted him (and likely still does) for especially the first years of our son’s life. His yearly transplant anniversary is simultaneously a celebration of another year and a feeling of trepidation with the eternal question ‘How much longer have we got?’.

At the apex of his anxiety about this, I suggested we ask one of his doctors directly about how long heart transplants last.  On the practical side, I was struggling with how to plan for the future.  We do not have the presumption that my husband will live to old age.  But we also don’t have the presumption that he won’t. Life insurance is out of the question.  So if he dies at a young age, how do we plan for my son and myself who will be left behind? But we also want to make the most of our time together now. We don’t want to put things off for later, because later might not happen. On the emotional side, the question of life expectancy (especially with a young child) was getting to my husband more and more with each passing year. So we asked.  And the doctor said ‘Live your life.  Everything is good now. If and when the time comes, there are things we can do, from smaller interventions, right up to another transplant.’  Her direct approach and honesty was so helpful. It helped us confront the ever expanding elephant in the room.

Since that first discussion about his transplant (and even before when my dad was diagnosed with and treated for prostate cancer — a very different experience for me in confronting my own parent’s mortality), we have sadly faced the death of family and too many young friends. I appreciate the frank (and funny) discussions I had with our friend who had esophageal cancer and died at 35. Among other things, he really helped me understand what it was like to be constantly in and out of hospitals and why, at one point, you just don’t want to go anymore.  It gave me so much more empathy for why my husband drags his feet sometimes for follow-up appointments. Three of my good friends lost their husbands way too early (not that there is ever a good time), all of them leaving sons behind. From the three of them I have witnessed more grace than I thought was humanly possible. They have all taught me that death is something that needs to be talked about and that it is not something that is neatly packaged or something that is a one-size-fits-all experience. They’ve also taught me that showing up is perhaps the most important thing.  You may be awkward, not know what to say or do.  And you in fact may do the wrong things.  But you need to do them.  And learn how to be helpful in a time of great sorrow and loss.  Denial and avoiding the hard stuff is not helpful. They’ve also given me a window of what I may experience one day. I wish they did not give me those things, and that I would have learned them another way. I want to take their pain away, and I hate it that I can’t.

Friends often ask me how we go about our day to day, knowing what we do know about my husband’s medical situation. My answer is pretty much the same as the doctors:  We live our lives. We cook and spend time together and have fun.  We get irritated with each other and struggle with small stuff and big stuff. We’re getting better and better at appreciating each other and showing our love. As years pass, I am more able to cut out the things in my life that don’t matter or take away from what does matter. And, at times, we think about death.  One foot in front of the other and trying to smell the roses along the way. It’s what we’ve got, and perhaps that is enough.