A Glimpse Into the Grief of Chronic Illness
Last summer I tried visiting a friend in Asheville not realizing how severe my condition or symptoms were. After spending a few minutes at a coffee shop and not being able to walk around more than a 5 minutes in a gemstone shop, I knew something was incredibly wrong.
Everything about the weight about my sickness came crashing down on me in that moment. Although I had to stop working about 6 weeks prior to that time, it was also clear that I was not getting better, and my condition was only progressing. We ended up going back to my friend’s house without going to dinner. Emotionally distraught, I laid sobbing on the bed, holding onto my tiny crystals I had picked up at the store. My friend who handled that moment with the fierce grace of a sage, just sat there stroking my hair and wiping my tears, telling me everything was going to be ok.
It was that weekend that I entered the darkest phase of my sickness. Everything I knew about problem solving, and information I had received about stress and rest was not working. My world had collapsed, and all I could think about on that bed was, “This is really bad, and I don’t know what to do.”
The remainder of that weekend was quiet and gray. We drove back to Charlotte not saying much of anything. I think the terror of my illness was starting to weigh on my husband as well. We thought that I was going to get better after I began my work sabbatical. We thought rest and decompressing was the answer. But that had been going on for weeks without any improvement. Only the drastic worsening of my symptoms was our reality.
That ushered in the next nearly year of my illness.
My husband and I both agreed, nothing in our 10 years of marriage, measured in difficulty to my chronic illness. I believe that it was nearly as hard on him as me. He was my full-time care giver on top of working a full-time job and keeping up everything around the house. I can only imagine the agony and helplessness he felt watching his once vital and healthy wife, lie limp and lifeless, wondering if and how she was ever going to get better.
I realize that I did not share many of the horrific details with friends or family during that time because I was terrified of what was going on, and talking about it only augmented the problem. I have heard it said there is a different between, “Living a story vs. Telling a story.” We were living a story.
I am just now starting to tell portions of it.
Only now am I sharing that I had to stop taking piano lessons because my arm would intermittently stop working. Or that I could only stand on my legs for a minute or two without them giving out. Or I would have days where I couldn’t walk at all from muscle weakness and numbness…This was just part of it. I also felt like I had the symptoms of mono every damn day. Sore throat, absolutely NO energy. It was fucking hell. I could go on…
The preservation of the severity of our situation was the only way to survive it. Talking about it only made us both feel worse. Having no shortages of, “have you tried this?” was also not helpful. We had to protect the fragility of the situation in the best way we knew how.
I also realize I was in denial in the early stages of my illness thinking I could continue working or go back to school. I look back at that and say, “what the hell was I thinking?” I couldn’t even submit the online graduate school application myself because my motor skills weren’t strong enough. I couldn’t drive. Many days I couldn’t even hold a pencil.
So, I am just now getting to the place in my recovery and healing, where I can really process the depths of the repressed grief and how depressed I was living like this. Part of writing this helps with processing and letting it go. It’s also to help people understand what it’s like to have a loved one dealing with chronic illness.
Part of me has been reticent to share details because I don’t want the focus to be on my suffering, but I also realize it is healing to share our collective stories. How many of us know someone with cancer or dealing with a horrific illness or life situation? Every single one of us, I’m certain. Hoping that by sharing my grief, yours feel shared and temporary.
The grief must be acknowledged though for something to heal fully. That is also why I am now so passionate about the answers I found to heal. I know how desperate and awful some people are in the throws of addiction, illness and loss. Passing through that grief and suffering is necessary though, andit cannot be bypassed.
Within the last month, I was able to catch up with my friend whose bed I drenched salty tears all over last year on the trip to Asheville. When she saw how much better I had gotten since the last time she saw me and I described my transformation, she started to sob. We had come full circle. The tears were no longer mine or sorrow, but hers of gladness.
Grief doesn’t have the final word. Sickness isn’t the last straw. Death isn’t the end.
This too shall pass.