Photo by Melanie Wasser on Unsplash

Living with the grief of chronic illness

It is spring in Alaska, which means that the sun is out, the weather is warm enough to go outside without a coat, and the snow is clinging in stubborn mounds across the city. It is a tightrope kind of season. Summer is approaching, but everything is still brown and ugly. The air is full of dust from the gravel spread everywhere to keep the roads safe. Cars are covered in muddy water — and everything feels dirty. It’s a hard dichotomy — the hope of summer, the sense of it, and the constant cling of winter. Inevitably, in a fit of reckless abandon, I pull out a summer dress and sandals. That is the day it usually snows again — winter's last hurrah before finally settling into the short summer season.

It brings to mind the nature of grief. My grief feels suspended in an Alaskan springtime. There are times when there are glimmers of hope. Sometimes I see pieces of my daughter that are full of life and energy. Maybe she will write a song (she is a musician, or was before this disease). Maybe she will write a story or tell me about a dream. We will laugh over a tik tok or bicker over the garbage on her floor. For those moments, things will feel close to normal. I can feel it the way I can smell summer in the air when I open my patio door. It is just so almost there. But then the snow comes. She lies exhausted after sorting through makeup to give to a friend. She loses her words when telling me about something she read. She needs a wheelchair to leave her room. This grief is not clean. There is no neatly defined process for it, no five steps. It is one step forward two steps back, and it feels like a hole we keep digging deeper.

I think there are 3 things about this kind of grief that make it so hard to bear. The first is guilt. My daughter is lovely. She is generous and kind. She wants me to live life and doesn’t begrudge me one good thing. But I still feel guilty. There is so much that I can do that she can’t — and it’s hard not to be reminded of that when I am feeling happy. The guilt also extends to my exasperation over having to do the little things involved with caretaking. For example, yesterday my daughter wanted me to get all her makeup out of her closet so she could sort it. I sighed heavily and tried to get out of it. She used to work at Ulta and has quite a collection. Plus, I hate going into her closet — it feels completely overwhelming. She just sat there and calmly said, “I’m going to make an appeal because I can’t get up to get the things I need.” She was right, and I felt guilty. I thanked her for her patient response to my irritation and she said she is working on it because she understands the irritation is warranted. This thing is a constant dance of balancing needs, which is really very difficult when one person is at the mercy of another.

The second thing about this kind of grief is that it is constant. I have people ask me all the time how my daughter is doing. There are different kinds of askers — those who feel sorry for us, those who feel obligated, and those who want to help. Those who feel sorry for us often ask, but avoid conversations about it. The ones who feel obligated are hard because I can feel them cringing, and I don’t know what to say since “she’s good” is a complete lie. And for those who want to help — well god bless them. I just wish I knew how they could. It is a difficult thing because my daughter's disease does not have a cure. She has ME/CFS and though some get better, many do not. There is empathy fatigue at play. There is also disbelief and fear. It is difficult to be around people that I have been friends with and watch them struggle with how to interact with me now. There is a barrier that I didn’t invite or intend but is there nonetheless. And there is just nothing to be done about it. I can’t make anyone feel better about my daughter’s illness, and I’m not sure I have the emotional fortitude to confront anyone about it.

Lastly, this grief is uncertain. It is this heaviness around me that I can’t lift or solve. I spend a lot of time googling things about ME/CFS, POTS, EDS, and the rest of the things Megan has. I try to find something to hold on to — some kind of map that marks a way to go from here. But there is nothing. I feel like if things were more concrete, I could plan my grieving better. I could talk to my friends and we would all feel the relief that comes from labels and definitions, timelines, and treatment plans. But there is none of that here. There is complexity, emerging symptoms, lost dreams, and a few good days mixed with many bad ones. Sometimes I feel as though I am overreacting and that everything will be fine. Other days I can’t stop shaking because I am sure that the next trip to the hospital will be the last, or I read that people with her condition are 5 times as likely to die of cardiac arrest, or I’m standing at her door after a hard night and am afraid of what I will see when I open it.

In the middle of all of this, I have to be a functioning person. I have to raise my boys and hold down a job. I have to find ways to feel joy and bring that into my home for my sake and for hers. I open her window to feel the fresh warmth of spring and I go about my day doing my best to live life as normally as possible. But the snow still clings stubbornly to pieces of my consciousness, always at battle with the hope of summer.

I am an intervention coordinator at a large Title 1 middle school. I care deeply about people and I like to find solutions if I can. Life is hard. Let's be kind

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