W: John Muir said, “We need beauty as much as bread.” I think that says it in a nutshell. It feeds us in a very crucial way. It feeds our souls. We’re not just physical bodies. We’re also spiritual bodies and we have a soul. We need to feed that as well or we don’t feel alive in the fullest sense, in the most important sense.
I was very drawn to flowers. I always have been. I love gardening and walking around the neighborhood looking at all the flowers my neighbors keep. Even just having a couple of cut flowers by my bedside meant so much to me when I was ill…or to look out the window. Fortunately I have a view out my bedroom window of the tops of trees and some hedges and ivy –– very lush and green. I love just watching the change of light and the way the leaves look at different times of day. I could watch for hours and it was very soothing and healing. We don’t often have time to do that when we’re healthy and live such hectic and busy lives. That is one of the benefits of slowing down.
Obviously you wouldn’t ever choose to be ill for those benefits, but if you’re going to find a silver lining, that’s probably it –– that you’re forced to slow down and spend a lot of time just looking and noticing. I think that’s a very important aspect of healing. In fact, I think it’s no accident that the body makes you slow down to that pace where you do notice things and pay attention and absorb detail. I think that aids healing. Even as I got better, I never lost that sense of the importance of just taking a moment to look at the clouds or stroll through the neighborhood slowly and take in my neighbors’ gardens, take in the colors and look at the changing leaves. That is just so crucial to a kind of inner balance and well-being. I hope I won’t ever get so busy that I lose that sense.
R: By the end of your book, you were slowly but surely improving. How are you doing now?
W: All things considered, I’m doing very well. Every year I continue to get better and I’m doing the best that I’ve done since I had the huge collapse in 1995. I’m not back to my pre-1995 level. That still seems a ways off in the sense that I’m still largely at home. In order to work and to write and to see family and friends, I have do most of that from home. I get out a little for a walk or a lunch out. I probably go shopping once or twice a year for an hour. Bill and I get away for a couple of days a year. That’s because I put a lot of energy into work. So, I’m doing really well and am pleased that every year I continue to get better. But as everyone knows, it’s slow and it’s incremental. I’m just thrilled that I’m one of the lucky ones that continues to get better.
To give another, more concrete example, the first year when I was so ill, I was able to be sitting up or out of bed for maybe an hour a day. The second year it was two hours a day, the third year, three hours a day. Now in my eleventh year, I’d say I have about an 11 or 12-hour day of being up out of bed and doing things. It may just be sitting in the chair reading or it may be doing the dishes or cooking dinner, but I’m up and doing things.
R: What is the most important or significant thing you’ve learned through your experiences with this illness?
W: These always sound like clichés, but they’re so true. The main one is appreciation. I just appreciate every day how much I have because I’m so much better than I was. I appreciate enormously being able to walk four blocks. To be able to leave the house and go for a walk is fantastic. And to be able to talk is wonderful. To be able to visit with friends or go out to a restaurant with my partner or a friend –– I just appreciate those things everyday. I think when you’ve had those things stripped from your life and then you slowly get them back, you just never lose that sense of appreciation.
R: If you could give one piece of advice to other CFS/FM patients, what would that be?
W: Again, they’re clichés, but trusting yourself and having faith in yourself. I think that’s the thing that got me through and that gets so many people through. All of the disinformation, all of the misunderstanding, all of the ideas that people have that are inaccurate about you and your illness –– to be able to set that aside and just have faith in yourself and what you know to be true about your illness, about your body, about what you can and can’t do –– that’s just so important. Beyond that, certainly the whole issue of just staying within your energy envelope. Not succumbing to pressures from people who don’t understand but doing what you know to be right for your body at the time. Do as much as you can but not more than you can on any given day. I do think that’s what’s key.
