I’m struggling with how to express my thoughts.
I wish I was keeping up with my blog. I wish I was keeping up with relatives and friends. I wish I could adequately thank the Stroke Center for all they’ve done for me. I wish I didn’t always feel so far behind.
Every day I get 100 tokens. It takes 1 token an hour to survive (asleep in bed). It takes about 25 tokens an hour to go to church or physical therapy or go to a potluck or drive a car (or ride a bus or bike or even ride in a car…moving vehicles are not my thing) . It takes about 20 tokens an hour to go to work. It takes about 10 tokens an hour to shower or brush my hair or do other self-care or to do low-grade stuff with my kids (facilitate them doing artwork, watch while they play, put them to bed, read them a story). It takes 5 tokens an hour to eat. It takes 2 tokens an hour to lie on the couch doing nothing.
When I did PT, I would use 50-75 tokens just to do PT. That would leave enough tokens for the rest of the day to use 1-2 an hour. When I go to work, I use 40-60 tokens just to go to work, again leaving only 2-3 an hour for the rest of the day.
When I first had my stroke, I did nothing except PT, work, and lie on the couch (expending a few extra tokens to blog while lying on the couch). That’s all I had tokens for. That was fine for awhile. But now I’m looking at my life for the long haul. And I’m sick and tired of having to pay for everything I do. I used to live my life freely, certainly facing the consequences if I had too much on my plate, but generally being able to use my time as I wanted. Now there’s a meter always running, demanding that I pay up.
What happens if I don’t pay? What happens if I run out of tokens? My arm floats away from me; I fall; I can’t sleep and lie awake spinning uncontrollably; I cling to the bed to try to try to gain some stability; I feel through-the-roof anxiety; I feel a random but intense desire to die. So I’ve learned. Save enough to pay the meter. There is no free parking.
There was a lot of flooding here in Colorado recently…some people had almost no warning to grab their most precious possessions (perhaps just a pet or a child) and get out.
What would you grab?
With the stroke, I at least have the privilege of changing my mind about what to grab. Those first few months, I grabbed my recovery first and my job second. People from different facets of my life have been contacting me wondering when I’m coming back or why I’m not around or not blogging. It comes down to what I would grab in a fire or a flood. Like most moms, I’d grab my kids. If I lost every item I owned but still had my family, I’d be okay. But I’ve had to jettison many people and activities that I value in order to hang on to the most important.
I’m trying to be sensible…I realize that homelessness is not a good option so I’m still working just enough to not quite squeak by financially (we’re making up the difference by selling stuff on Craigslist). Unlike so many people who tell me they are “barely squeaking by,” I really mean it. We’re comfortably below the federal poverty level. Lucky us.
I typed this while nursing my daughter. I’m about to carry her downstairs to sleep. By the time I come back up, my son will likely be home from helping Daddy dismantle a swing set someone is handing down to us. We’ll eat supper together, and spend a little time just the three of us before bed. I don’t know how long it will take to recover from my strokes, but I do know that these early years with my children can never be replaced. So if you ever wonder where I am, assume I’m cuddling.