Oh how quickly we/I forget. Lately my right eye has been occasionally drifting further right - out of alignment with my left eye. When it happens it impairs my already impaired coordination and depth perception and balance. I don’t know why it happens. I do know that remembering back to my first hospital stay, at the end of 2010 and early 2011, helps realign my perspective. Or, in terms someone traveling through Milwaukee’s airport might understand, it helps recombobulate. After my initial surgeries in 2010 (2) I stayed in the ICU for almost two weeks to avoid a shunt placement, like I have now. From the ICU I spent a few days in the “regular” hospital before moving to the “rehab” floor. In rehab I worked on a number of things, going from basically bed ridden and not walking to walking down the street to a grocery store to prepare a meal. Once I came home ( just in time to see the Packers win the Super Bowl) I had home health care, where therapists came to me. A little while later I went to out-patient rehab where I went to the therapists. Physical, occupational, and speech on the rehab floor through out-patient therapy (for me occupational therapy concentrated on vision). The point, which is very helpful to remember when recombobulating, is that it took over a year for me to learn how to operate in my altered state (Green Bay didn’t win the next Super Bowl but our engagement occupied plenty of time).
While all the dates don’t align nicely, the broader point is that “recovery” took a long time. Some patience is important. Just like I couldn’t immediately, and never really could, jump into my pre-Cancer self after my initial surgeries, I can’t jump into a time before now, now. As I know firsthand “recovery” may take more than a few days, or weeks, or months. Merely operating “acceptably” could easily take over a year.
Determining acceptability is as unique as the individual making the determination. And part of that determination requires determining exactly what is “acceptable.” Although the point at which you, me, the patient, determines acceptability does not bind them forever to that one point in time. It’s a part of a process that can/may, bend, slowly (depending on the patients patience) towards recovery. That’s important to think about when my eye starts to drift, or if I’m sleepy, or I have a headache… Accepting that the issue, whatever the issue, is a part (A space Part: belonging to; NOT apart: separate from) of the entire process of living. Ultimately that’s my goal! Continue to live. Continue to be a part and not apart. Remembering the past, remembering some of the difficulties, helps make the overall process more palatable. It helps me recombobulate to a more accepting mindset. And a year may not even be long enough, but at least it extends the mental timeframe I had. It helps me accept the way things are now.
Except, of course, if something feels awry - then further investigation and instance is necessary. I realize that’s not extraordinarily helpful - “be patient when you should and insistent when you should.” How does one know when they “should” be one way or another (good question me)? One doesn’t (poor answer me). But, since this advice is mostly for me, you just have to feel it. That’s the wisdom years of experience have brought, “you just have to feel it.” Maybe Malcolm Gladwell will write the next Blink about brain cancer. Ironically my eye drifting right instigates some blinking.
In service of my continuance as a part of the living clan, I will likely take my sixth set of CCNU pills on Wednesday night, October 9th. The 9th (earlier) is also the date of my next Avastin infusion. My next MRI will likely happen in mid to late-October. A hard date has not been set yet.