Today I went out for coffee with one of my favorite people, R. It has been one of those weeks for us both; she has a dog with a stomach virus, which forced her to operate on disrupted sleep for the week, a tall order for someone who expends extra energy on EVERYTHING due to her Cerebral Palsy. Moreover, she was battling bureaucracy this week, attempting to undo an oversight at her medicaid agency that rendered her daughter’s behavioral health prescription invalid. R. is one of those people who problem solves as easily as some people breathe, but even she couldn’t penetrate the bureaucracy this week. Still no prescription and it is now Friday. Sigh.
As for me, I made it through a week on my new heart failure prescription, which is, actually, one half of the pediatric dose; I have about five more jumps before I get to the target dose. I realize, as is typical for me and R, our lives mirror one another in intriguing ways: We are both tired this week and we are both ruled by meds, one way or another.
I’m just sitting down to write, finding, as is often the case, that time with R. helps me to process what I’m experiencing. Either my half-dose or my heart failure, or perhaps both, is tiring me in ways I notice only gradually. For example, I’m out for coffee today, which makes me acknowledge that I’m tired by the time I walk down the hall, let alone get to the coffee shop. I need to balance my indoor life with my need to enter into the greater world. Yet, even as I write this, I am realizing that the pleasure of getting out was, I think, too heavily undercut by my physiological response; I’m better off right now just having coffee at home with R. But what of the other losses this week? The heavy drop in my blood pressure necessitated changes in small pleasures I might have otherwise had (such as a bath at night to relax), but even more than that, I now know, after time with brillant R, I’m exhausted from problem solving.
I can’t suck in enough oxygen, I just can’t. From there, I’m slowed down by meds and I’m slowed down in consuming these life saving meds by my paltry blood pressure; all of it is fatiguing in synergistic ways.
So what have we here? This is the same question I asked the last time I wrote. I have a half life. I think it is important to name it as such. I have residues from my fuller life, much as a medication might remain in our bodies as a lingering echo.
I know first hand that my condition can, and probably will, take a higher toll before I can get better – if I get better. I know what it’s like to be so depleted that I cannot read ( a favorite half-life pastime of mine); that I cannot write; that I cannot cook. I try to remain grateful for what I can do; however, in listening to my problem-solving friend recount her challenges this week, I am moved by how much energy she puts into working around obstacles. There is a cost to this. There’s always a cost to being brilliant at work arounds. What happens when I am working so very hard to cope? It’s tiring, yes. It’s also an obscuring activity, deflecting from loss, from full acknowledgment of how hard something is.
I have to be brave enough to name this.
What do I miss this week? First and foremost, I miss being with my granddaughter fully. I miss having the energy to go out with my husband. I miss the spontaneity of running out to do an errand. I miss having a glass of wine. I miss walking downtown. I miss traveling. I miss sleeping without oxygen and a ventilator. I miss baths.
Heart failure is gradual and it is acute. I’ve let go of many things. In this respect, the acute phase is easier for me this time. Things that I regained were always clearly just on loan to me. I never ask doctors that question: How long do I have? I know I’m on borrowed time. I just want to eke out all that I can. I’d love to beat the odds and get another five or ten years or more.
Even half life years.