About a year ago, we wrote an essay called "Toe Curls, Merry Go Rounds, and Stress Over PD." I had had a new symptom surface that made me stop and think about how I was distressing myself about Parkinson's disease. My experience wasn't all that unique. We all experience new symptoms from time to time because we have a progressive disease. In fact, a lot of us have been through some really rough times lately with such changes. Beyond dealing with the physical symptoms, on the emotional side, some of us seem to be able to handle those changes without distressing ourselves, while others feel devastated by them. In the past year my PD has progressed, but many of the things I learned a year ago about coping still are valid. As many of you have observed in the metaphors, we often can't change what's happening to us, but we frequently do have more control than we realize over how we react to what happens. It is easy to forget to remember stuff we've learned, so it seems like a good idea to revise and revisit some of the concepts from that first essay. I was sitting in a yoga class trying to do a pose that involved pressing the soles of your feet against each other. At one point, my instructor asked the students to press the toes of one foot against the toes of the other foot. As I tried, I became aware that my toes were curled up and I could not do this, although everyone else was doing it without any trouble. Suddenly I became aware of another symptom of PD. I had heard of "toe curling" but never thought much about it. But here it was. I was self-conscious about it at first, but soon dismissed the toe curls as a non-issue and continued with the class. As the class went on, I reflected that even as I have become more aware of my PD, I have also become more aware of my wholeness and value as a person, my "inner worth." Now, over the past year, those toe curls have become more intense. They cause me their share of physical pain and although this is stressful, I am not distressing myself over them. There have been other new symptoms, too, and changes/increases in medication, but I am dealing with those changes as well. I feel lucky, and I am…but I also am realizing more and more that I create a good deal of my luck by the attitude inside my head. Having PD is like being shot with an arrow called Disease (See The Twisted Arrow). We all felt the hurt when we were first diagnosed with PD. Ranting to myself about how terrible and unfair it is that I have yet another symptom would be like grabbing hold of that PD arrow with my hand and twisting it, making the wound bigger. It would be easy to say to myself with alarm, "Oh no, what next!" as I lapse into worry and "awful-izing" ("This sure is an awful disease!" "Isn't it awful that I have this disease!"). Then, instead of dealing with PD, I would be fighting it and getting more stressed and worried. I'm learning to not make the injury worse by twisting the arrow. A friend I met on another website wrote to me about her struggle with anger. She has had PD for ten years and has a lot of back pain despite three back surgeries. She wrote: "I just feel like I'm on a Merry-Go-Round. And on those days that are pity party days, I get to thinking that this is so unfair. It's not right that one person should have all this to contend with." She seems to be saying, "If life was fair, we wouldn't be on this PD merry-go-round." But since when does the definition of the word "life" contain the word "fair"?! Whether or not we Should be on this merry-go-round, we ARE-- and there is nothing we can do about it! I don't know about you, but I don't see anyone standing on the side and asking if I would like to get off. For me, the goal is to ride it as well as I can, to be the best darn merry-go-round rider I can be. That doesn't mean happily accepting everything that comes your way, so much as gritting your teeth and working with what is. Anger just makes the merry-go-round go faster and feel even more out of control. Regarding fairness: Just imagine that in a national election there is a question on the ballot, which asks, "Was it fair that (Your Name) got PD?" And that night when the votes are tallied, the answer comes in 3 billion to none, "No!!!!" Do you feel better? Actually, you probably feel even angrier. Twist, twist, twist! "See, everyone agrees, it WASN'T fair! I knew it all along!" But really, fairness is kind of irrelevant. Whether it's fair or not, we have PD, and so now we ride the merry-go-round. Reducing Dis-ease Bill reminded me that there's a big difference between disease and dis-ease. Heaven knows, I'm still diseased, but I guess what I've been talking about here is how I'm learning some ways to reduce my dis-ease (dis-comfort, dis-stress) over Parkinsons. As a result I have a sense of well being, even in the midst of not being well. The great majority of people associate worth with deeds, actions, and performance, and so, when I write about inner worth…you might be saying "yes, but" to yourself. "Yes, but. . . I can't do the things I used to be able to do and I miss them terribly." But if we dwell on what's wrong instead of what's right, we experience all the dis-comfort, dis-stress, dis-ease. What I'm learning is that I need to focus on today….on what I can do….and I need to use my skills and sensibilities differently. In yoga class that meant doing what feels right for me rather than worrying about what others think. It meant working with rather than against my PD. So I have new symptoms. So what?!?! Focusing on what I can't do just stresses/distresses me. I can't pull out that PD arrow. It's too big and in too deep. But I can and do work to keep my hands off of that arrow--leaving it alone because, although it hurts, it can't twist itself. And meanwhile, I focus my attention on all those secondary arrows I shoot myself with (the Should statements, the What-Ifs, the Awfuls). Acceptance Some people believe that we should never accept PD, but instead, we should fight it. But "accepting" PD does not mean giving up and giving in to it. And hence, acceptance is not a "losing" position, i.e., "you've JUST got to accept it!" Yuck!! What a wimpy, wussy position that would be! On the contrary, real acceptance is --Looking for ways to counter new symptoms, to reduce them, and to live better with them --Being pro-active by tackling a problem and resolving it as well and thoroughly as possible --Acting out of practical adaptive thinking about what will help you most, rather than out of anger, embarrassment, and twisting of arrows. The focus is on thinking, not on upset feelings, because the latter tear you up. --Changing what you can change, and letting go of the Need to change what you can't. (Serenity Prayer) It is true that I STRONGLY dislike PD, but I don't HATE it because that level of anger makes me twist the PD arrow and adds dis-ease to the disease. And I don't need that!!! When I am angry enough to cause dis-ease and dis-stress, my PD symptoms get worse. My tremor kicks up wildly and my neck stiffens even more. The issue isn't so much "don't fight." It's "use your head, not your emotions." We just finished watching a couple of western movies. In those, the "hot heads" always end up getting killed or hurt badly when they fight. It's the ones who stay cool, though determined, who draw quickest, shoot straightest, and hit their target. So in this sense, acceptance doesn't mean to take off your guns. It has to do with fighting cool and not dis-easing yourself. Yes, PD is stressful. But if you dis-stress yourself over it, you will shoot yourself in the foot, for sure!
Distress
(with a lot of input from Bill)
ChatRoom Edgeof the Forest Home Page (Note: What follows is not meant to imply that it's not OK to feel sad or grieve or feel angry over our losses. But these emotions can take over and make you feel out of control. Some of this we can deal with ourselves, but some of it may be due to biochemical changes. If you are dealing with intense and prolonged anger, sadness, or depression, please do seek professional help.)
A "New" PD Symptom
It Isn't Fair!
--Going with what IS rather that what Should be