In an earlier post, How Things Got Better, I talked about the process I went through to choose Boise, Idaho as a place that would help support my health. I thought I would write a few more posts this summer about my (mis)adventures dealing with health problems.
From the time I contracted Lyme Disease in 2009, to the time I moved to Boise in 2014, I struggled a lot with my health. The most difficult thing for me was not the pain, weakness, chills, or fever, but rather the sense of isolation I experienced. The Austin social scene was all about the moveable feast; by not being mobile or healthy, I missed out on the sense of community I’d come to rely on. I began to feel as if life was like a beautiful circle, and I’d been somehow cast outside of its bounds, into a shadowy nether realm. The only people who seemed to make the effort to reach out to me now were Netflix, Amazon, television advertisers, and mail order catalogues.
And a few very dear friends. Thank you.
All this is to say: there were two aspects to getting through this time; the emotional / spiritual, and the purely logistical. The emotional/spiritual was comprised of questions like, “If I used to have friends before illness stripped my talents away, and my friends don’t come see me anymore, did I ever really have friends in the first place?” ***
The logistical was more like this: “If I don’t get out of this house soon, I promise you I will lose what little grip on sanity I have left!”
The challenge I had with my illness was that my health was extremely variable, and I was too ill to drive safely in car-centered Texas. This led me to articulate the 5 Stages of Health:
#1: I am too weak to get out of bed.
#2: I am too weak to leave the house.
#3: I am feeling well enough to do something easy, as long as I have a way to get there and back.
#4: I am feeling well enough that I could do something energy-intensive, such as walking in a park, as long as I have a way to get there and back.
#5: I am strong enough both to do an activity, and to transport myself there and back.
So, as you can see, if you are at Stage #5, you are more or less independent. You may still have health problems, but they are not holding you back from mobility or activity. I was rarely in Stage #5.
On the other hand, if you’re at Stage #1 or #2, mobility isn’t even a problem because it’s not really an issue. If your head is split in two with a horrible migraine, you don’t really care whether, in theory, you’d be well enough to drive today.
The problem is when you’re at Stage #3 or #4 — well enough to engage in activity, but not well enough to be independent. Too often, when I lived in Texas, I would be stuck inside even when I was at a “4” level, because of a lack of appropriate transportation.
What do I mean by this? Well, a person with ok health but no car can plan to take a taxi to a special event. However, a person with extremely variable health may spend $20 for a taxi to an event, only to realize 20 minutes later that a dizzy spell is coming on and she has to get home right away. Maybe by now the taxis are all taken and she must wait, extremely sick, out in public, at the event.
Or maybe the taxi arrives promptly, and she goes home, having spent $40 to exhaust herself, and take a round trip straight back to her home, and not go to an event.
Because of this variability, and also the expense and inconvenience, the person with poor variable health really needs either a loved one who is willing to put her first — to drive her and take her home when she needs — or some form of transport that’s under her control. Otherwise, the fear of collapse while out in a public space is too great, and she stays home. Again.
This is particularly frustrating because healing from illness is a mental game as well as a physical one. If you spend all month being diligent and cautious, and finally have a day where you’re at Stage #4, you want to experience some positive reward for your efforts. If, however, the only reward is that you are merely well enough to feel even more keenly the bars of your prison, then there is almost no incentive towards getting better. In such a scenario, there are no repetitions of success when you improve, only repetitions of failure, and it can be extremely difficult to crawl one’s way towards a better life.
The wonderful thing about moving to a walkable city like Boise is that I finally get to build on my successes, rather than only suffer from them. I have things I can do when I can only walk 3 blocks, things I can do when I can walk 8, and even other places I can get to when I can walk a mile or more. As I’ve mentioned before, the dry climate is very supportive of my health, but so too is the knowledge that, if I can get just a little stronger, I can experience even more success. That in itself is an incredible incentive to work even harder at my recovery.
If I were to suggest a takeaway from this experience, it would be that if you or someone you know is struggling with something very hard — whether it’s recovery from an illness or learning a difficult subject in school — make sure that, for each measure of progress you gain, you also gain a commensurate reward. If you have to achieve perfection before you can even start living your life, you’re playing the wrong game.
*** It can lead to even deeper (and more confusing) trains of thought, such as,
“Aren’t all relationships, at their source, mere transactions?”
“Do we ever really ‘love’ anyone, or do we just love what they can do for us?”
“When even something as fundamental as someone’s personality can be changed in an instant by illness or accident, how can we promise to love someone ‘forever?'”