It’s my birthday today—big 44.
So. It’s a good time to take stock of the situation. Even a momentary glance at the overview of my life yields a pretty good picture. Good marriage, two beautiful children, lovely house and land, lots of good friends, freedom from cubicles and the dull grind of hours and paychecks.
On the flip side, my health has been a hassle and I have no career whatsoever. On the first topic, I can say the trend is steadily good. I have fewer and fewer days of impairment, more days of normalcy. I’m still trying to get into this research study on POTS and exercise, which would help a lot towards pushing me forward. It’s bogged down apparently in red tape at the Cleveland Clinic. Meanwhile, I’m trying to simply exercise more and push myself a little harder than I normally would. On Monday I ramped up my efforts a bit on the recumbent bike—rode for 45 minutes on a higher level. Not sure if it’s related but soon thereafter came down with a cold and had to cancel out of vestibular therapy on Wednesday. It’s a delicate balance of challenging myself but not too much.
Careerwise, it’s all been at a stand still for about a decade of pregnancy and child-rearing. But there’s a light at the end of the tunnel now—Elias will go to full-day school next fall and my scant two hours of non-kid time will expand to close to six! Now, there’s a patch of time in which a person can exercise, get groceries, put away the dishes, AND still have time left over to actually do some writing. That will be a game-changer for me and I’m excited about it.
Meanwhile, I had this idea come to me the other day, for a children’s book that I would write and my mom (sculptor and visual artist Doris Park) and my aunt Marilyn (calligrapher and animator Marilyn Zornado) would collaborate with me on. It’s an alphabet book that I would write (rhyming couplets about animals) and research, my mom would illustrate, and my aunt would hand-letter in her beautiful way. I pitched it to both of them and they are on board, so now I’m setting out on researching it and putting it together. It’s so fun to have something non-drudgery-related, non-kid-related, and non-dizziness-related to focus on. The fact that I have mental space for it says to me that really I’m getting well. A year ago I was purely in survival mode and had no hope of taking on an additional task of any kind. Now it seems plausible, even good!
It’s a recovery. It’s a slow, uneven recovery, but it IS happening. Sometimes change is hard to see up close, but at my last birthday I was barely functional, nearly falling often, lying down every possible minute. Elias was a year younger and that much harder to manage. Isaac was having a horrible school year and I could do little to help him cope better when I was having such a hard time myself. His miserable fighting—sometimes even physical fighting—against going to school, his crying and screaming and raising hell, was combined with my terrible, exhausting, despair-ridden, hopeless seeming ailment. I questioned the safety of driving the kids to school. I lied at the BMV when they asked if I had a fainting disorder. I bowed out of driving theclass to skiing. Every night, I had to stop cooking dinner and lie down, repeatedly. Sometimes I had to lie down immediately on the kitchen floor to avoid falling. There were times I couldn’t get warm, even when Ben made a roaring fire and I lay so close to it that my clothes were scorching. And although I had seen so many doctors, I still didn’t have a diagnosis or treatment that was helping with any of that. God—it’s only in retrospect thatit becomes obvious to me just how rough it was.
A long way from today… Isaac trotted into school happily, carrying a large corrugated sword Ben had made for him (one of a set for their production of the Nutcracker.) Elias assaulted my hind end as usual, but I like to think I handled it better today. I dropped them off, came home and cleaned out the car, put away the dishes, and trotted around the house like a normal person. My illness was not on my mind at all—because it’s low-grade enough now that I can ignore it most of the time. The sun is shining. I have another hour in the quiet house. And I think it’s going to be a good year.