I spend the predominance of my time these days in three locations: the driver’s seat of my car, my office chair at work, and my couch. A typical day starts on the couch as I read the Bible and pray (and just as often lay there in pain from a recent bathroom visit), followed by 45-minutes of taking medicine, applying creams to counter skin GVHD, eating what I can force myself to, and otherwise getting ready for the workday.
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| Photo by Eje Gustafsson; https://creativecommons.org/licenses/by/2.0/legalcode |
I’ll spend the next hour driving to work, sitting uncomfortably in my Civic, listening to podcasts or music, or just thinking. Once I arrive at work and put my lunch in the refrigerator, I head to my chair and work on my computer for most of the day, getting up as little as I can. Simply being vertical for too long is a sometimes a challenge.
After 6 hours or so of work and another hour-long drive, my thoughts tend to focus on the couch. I’m usually tired and something is hurting. I’m getting home lately before Christi has dinner ready, so I usually can spend a few minutes lying down.
Not My Style
I don’t like living this way. I was never like this before I got sick. Sure, I would rest from time to time, reading or watching a movie from the couch, but otherwise I was interacting with the girls somehow or being productive in some other way. These days, limited energy, pain, and discomfort steer me away from activity and toward relief.
My frustration has gotten the better of me, as well. I’ve been more irritable with my daughters when they play (two volumes: loud and window-shattering). I’ve also been harsh with Christi recently, something she absolutely didn’t deserve and for which I am ashamed. She has since forgiven me. Still, none of them deserve it and should receive my patient affection, not feel the sharp blade of my personal exasperation.
It’s very frustrating being so limited and consistently feeling lousy. I’ve asked God to take this cup from me, but He is silent. That doesn’t mean He isn’t listening or has stopped loving me, just that He is being silent about this for now for reasons that He only knows.
My boss uses the metaphor of an injured racehorse. I’ve got a bum ankle and am not ready to run yet. If allowed to, then I’m likely to make the injury worse and threaten my career (life). If made to properly rest and heal, then I’ll come back as strong as ever. I want to run vey badly, but am confined to the stable for now.
What to Do?
I haven’t lost perspective and am not on the verge of giving up. I know there are many people who envy my position. Even though I’m living much of my life on my living room couch, it’s better than a hospital bed or a coffin. But I’m nearing nine months post-transplant and expected to be much closer to healthy by now. I should have tempered my expectations.
So what do we do in times like these? Whatever you can. Sometimes I feel well enough to play with the girls for a while or to help Christi clean up the kitchen after dinner. So I do it. Other times I don’t, so I rest on the couch. Sometimes my appetite is better than others so I try to eat a little more. Other times I force myself to choke down enough calories to barely sustain myself, usually with Christi’s loving admonitions and smoothie-making.
This is temporary, but temporary is a relative term. One day I’ll be on the other side of this and so thankful that I’m running again, playing hide-and-seek with my daughters, and fixing Christi’s flower beds. In the meantime, I’ll sit in my chair or lie on the couch, as I need to, asking God for perseverance and relief and thanking Him for my many blessings.