People ask me occasionally if I'm "doing better," and it's hard to know what to say to that, especially without turning my response into a five minute monologue. But I've been thinking about that question a lot, and here's the real answer:
Yes, I am doing better. Not in the way that you mean, or the way that I had hoped for. But it is better.
I still have a rotten disease that touches every minute of every day and may do so for the rest of my life. I still struggle with pain and fatigue and frustration and disappointment and loneliness and a feeling that I'm missing out and letting people down, especially my husband and children. I still have bad days and good days and ok days and really terrible days when I feel desperate and hopeless and just want to stay in bed and cry.
But I am better too.
I am better at evaluating what I can do on a given day and making good choices so that I don't end up making things worse for myself.
I am better at deciding when it's worth pushing myself a bit to do something I really care want to do, even if I pay for it later - And then resolving not to regret it afterwards. Because sometimes it's just worth it.
I am better at accepting a bad day without worrying too much about whether it will turn into a bad week or a bad month.
I am better at enjoying the good days without getting my hopes up that the next day will be good too.
I am better about being clear about what I need and not feeling guilty about it, even if that means I'm laying on the couch while my friends clean up my kitchen.
I am better at dealing with a bad night without tears or anger and still letting my poor husband get some rest. (At least some of the time.)
I am better at letting go of worries about the future, about where I'll be next year, or in 5 years, or 20, and focusing on the joys of this moment in my life.
I am better at facing the morning with gratitude and prayer, rather than whininess and grumbling. (Usually.)
I am better at recognizing that everyone has their own struggles and not presuming that everyone, or even anyone, has got it easier than me.
Also - my feet really are better. Not great, but not as bad as they once were. Things change slowly, so sometimes it's hard to tell, but I do notice little things: I got dressed the other day standing up, rather than sitting down like I've had to do for so long. I have been able to be on my feet long enough to hang laundry on the line outside (using the dryer, especially on beautiful summer days, was driving me crazy!). The pain when my feet first touch the ground in the morning is not so sharp anymore. And I think, on a good day, I look a lot less like Frankenstein's monster when I'm walking around. (If I'm wrong about this, please don't tell me.) So, I am very grateful for all of those things.
And during the summer I have more time to rest, free of the crazy schedule of my work and the kids' school and activities. It's a great luxury, I know, to have summers (mostly) off, and I am having fewer really bad days right now. Whether that's because I'm improving a bit, or because I don't have to push so hard all the time during these glorious summer weeks, I don't know. But I am grateful for that as well.
There's another kind of better - one where our life goes back to normal, and I don't deal with pain all the time, and I have the energy to live the life I was living before all of this. I honestly don't know if that better is coming any time soon, or at all, and I'm working on being ok with that.
But this kind of better is good too.
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Nothing happens automatically in the spiritual life. Joy does not simply happen to us. We have to choose joy and keep choosing it every day. It is a choice based on the knowledge that we belong to God and have found in God our refuge. - Henri Nouwen
