The Grief Keeps Coming

When you are chronically ill or dynamically disabled, you must constantly let go of the person you used to be.

Photo by Mike Labrum on Unsplash

I had my first adult experience with grief when I was 22 and my dad died.

I learned that grief made some people so uncomfortable that they kept quiet or tried to console me with a silver lining. I learned that support sometimes came from unexpected places, from the people who’d known grief too. And I’ll never forget that when I asked somebody for some grace because I could barely get out of bed in the morning let alone show up perfectly in all of my relationships, she suggested that I was lying about my grief.

Imagine that feeling for just a second. Imagine losing your father after watching him steadily decline for five years. Imagine trying to act normally at school and in public, even though you can’t quite remember what normal even looks like. Imagine that somebody you care about tells you that they saw you acting normally, and so you must not really be grieving that much. You must be using your grief as an excuse.

Now imagine that you’re grieving yourself. Imagine that you built an entire life filled with friends and hobbies and work that you loved. And imagine that either suddenly or gradually, you had to give up that life because your body became too sick to keep up. Imagine trying to tell somebody you care about that you are grieving your good health, and imagine they tell you not to be such a pessimist. Imagine they tell you that you have nothing to grieve at all.

When I interview people about their experiences with chronic illness and dynamic disability, we always start at the beginning. Some people have been sick since childhood, and some people are quick to tell me how active they were. Many people tell me that being an athlete was a core part of their identity, and that losing that identity has been one of the most difficult parts of adjusting to life with chronic illness. But it’s not just athletics; people also talk about how their careers or their volunteer commitments or their social lives were core parts of their identities. And people talk about how hard it is to let those identities go, to grieve the person that they used to be.

When I talk about the pieces of myself that I’ve lost, healthy friends and family members are quick to look for solutions. I used to love backcountry camping. I loved the meditative experience of paddling a canoe all day and I loved the bond you develop when you share that experience with other people and I loved the freedom of using my body without worrying how it looked all the time. But now I need to sleep or rest for about 16 hours a day and I need to travel with an emergency kit to manage my symptoms and I absolutely cannot sleep on the ground.

And there are workarounds for all of these problems, of course. Maybe I could rent a canoe and stay at a lodge. Maybe I could plan much shorter paddling days than I used to. Maybe I could just turn my phone off and enjoy a day at the beach. These are the types of things people suggest when they don’t want to engage my grief. But the truth is that I’m not looking for adaptations because I don’t actually miss canoeing. I miss being a person who could spend weeks in the woods with her friends. I am grieving her and no amount of accommodation will make that grief go away.

And I don’t need advice about how to adapt to my new life because I am adapting constantly. Some days, like today, I can sit at the computer and write and feel exactly the way I used to when I wrote almost every day. And some days I lie in bed with my eyes closed listening to a romance novel audiobook and wishing that there were any type of adaptation that would allow my foggy brain to form thoughts that were coherent enough to write down. Sometimes I spend weeks or months like that. Sometimes I wonder if I’ll ever be able to write like this again and I’m flooded with grief for the person I used to be, the person who could write every day.

There is no silver lining to this kind of grief. There is just the truth, that we often find out we are more resilient than we realize. We keep letting go of these defining pieces of ourselves and we keep building new identities that we can sustain on our very worst days and we keep grieving.

And of course grieving for yourself is not the same as grieving for a loved one. On most days, when I think of my dad I feel a fond ache. Sometimes the grief feels fresh again, like when I decided to marry somebody who my dad had never met and it felt like every wedding ritual was designed to remind me that he was gone. Losing him was cataclysmic, but it only happened once. Nobody told me to work harder to bring him back or to find new ways to keep him in my life.

Although it has been 10 years since my dad died, people still respond with compassion when I bring it up. Recently I went to see a physiatrist to ask whether my cervical stenosis might be causing some of my most debilitating symptoms. As I described what had brought me in — the nerve pain, the fatigue, the racing heart — she was very matter-of-fact and kept her eyes on her computer. When she took my family history and I told her that my dad had died from early-onset Alzheimer’s, she looked up from her computer to sincerely tell me how sorry she was.

And that’s what I want for all of us who are grieving ourselves. I want us to be surrounded by people who see our grief as valid and human and worthy of compassion. I want them to understand that our grief isn’t over because our loss hasn’t ended. When we see a new doctor and describe everything that we’ve lost, I want that doctor to look up from their computer and sincerely tell us how sorry they are.

Some of us might be grieving for the rest of our lives, and that’s okay. It doesn’t need to be fixed.