Grieving the Loss of the Life I Used to Have

A couple of weeks ago, I wrote about how my partner has been encouraging me to figure out what makes me happy, now that my abilities, opportunities and limitations have all changed thanks to my illness. I was gung-ho about this quest, and thought about little else for over a week. Frustratingly, as I began trying to do things I used to like, I either found that I was no longer able to do them, or that I found little or no pleasure in doing them. As my failed attempts to pursue happiness started to accumulate, it became clear that my priority needed to temporarily shift from pursuit of happiness to depression management.

This week ended up providing a good opportunity for me to explore this depression, and to uncover and process some distinct sadness. My body gave out unequivocally, and it was a common cold that proved to be the straw that broke the camel’s back. By last Monday, on top of my daily baseline of intense pains and fatigue, my continued asthma flareup left me with extremely low energy and high discomfort. I forced my body to go to all of my appointments that day, only to hear bad news there: my health insurance has stopped covering my pain rehabilitation program, a week and a half shy of the program’s graduation ceremony. I came home emotionally deflated, with my body worn down, and I made a beeline for my bed. Thanks to a measly cold, I was stuck in that bed for days to come.

Usually, when I’m feeling really down, I do what it takes to get out into the world. I know that depression is a deceptive mistress, who will whisper bad advice in my ear at every juncture, telling me to run from friends and activity and sunlight, when those are the very things that have a chance of improving my mood. Unfortunately, when I’m acutely ill, taking care of myself and letting my body recuperate can feel a lot like listening to depression’s bad advice to hide from the world. Be that as it may, I had no choice in the matter, so I spent most of the week wallowing in bed.

Recently, a therapist complimented my ability to keep fighting the good fight, while trying to help others to do so, and while openly facing the fact that being sick just plain sucks. She recommended that I read the Young Adult novel The Fault in Our Stars, a book that deals with cancer in the same kind of head-on, honest, and wryly humorous way that I aspire to deal with my life. When I became bedbound this week, first I slept (and slept and slept), then I cried (a lot), and as soon as I’d finished tending to those urgent matters, I listened to the audio version of this book in its entirety. The book, and the timing of my first read-through, were perfect.

I spent much of the book wondering why its subject matter was resonating so deeply, and how reading about a struggle with potentially terminal illness could feel so familiar. I felt guilty, like I was re-appropriating cancer grief, and wallowing in it. I spent many uncomfortable and guilty hours trying to figure out what all this was about. Finally, I made the connection; I may not be actively dying, but a year and a half ago, life as I knew it screeched to a halt for me, and I have yet to come to terms with how unlikely I am to recover all the security, control, hopes and abilities that I once took for granted.

I have no concept of how long it might take for me to grieve and accept all that I’ve lost. I know I’ve taken a big step in the right direction just by admitting how sad this is, how scary it is, and by starting to recognize the extent of the loss.

Tonight, I learned that I’m not the only one pondering this particular brand of sadness. Another Tumblr user nailed describing it, and concisely too: “Being diagnosed chronically ill isn’t a death sentence but it’s a life sentence. I’m still trying to figure out which is worse.”


One thought on “Grieving the Loss of the Life I Used to Have

  1. When you are next ready to think about what types of activities might make you happy, think about what sorts of things you find rewarding. I have a chronic illness, too, and went from a Type- A sort in the computer industry to being fully disabled in a relatively short time. I’ve been in a slow but steady reduction of physical capability since, and so have had to adjust several times.

    Here’s some things I learned about myself – I am pleased when I feel like help others. So for awhile I volunteered to explain tech at the local library, which gave me motivation to get out each week, and made me happy when I solved someone’s problem. When my child and her friends were graduating from college, I tried to help them with their job searches. Etc. It’s good to feel needed even if I can’t do dishes any more

    I like to solve problems! So I also try to engage in a support group for my particular health issues. I eventually had to give up the volunteering, but I’m always looking for one time opportunities to do research for someone, or help them with a resume, or other small things that might help.

    I like history, so I got involved in doing genealogy. It also gave me a chance to reconnect some family members.

    This is not to say these are the right things for you, it’s just when you are ready, start thinking about what sorts of things you find satisfying or rewarding. Working with your hands, doing crafts, being outside, problem solving, playing music, listening to the radio, answering a question.

    You’ve already found one thing – helping others by blogging about chronic illness.

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