Change Sucks, But There It Is.

 The following is from a series of posts I made on the adults/teens with clubfoot Facebook group, and felt they deserved to be posted here for easy access by people who may not have joined that group yet. I will also post some of the more incisive comments group members have made on this series. Your comments are also highly regarded, so please weigh in.

 

Sue's injury, and the accounts of many clubbies who pushed a bit too hard, and are paying a price, got me to thinking how we are sort of trapped by both the circumstances of our PCF, and our deep desire to "be normal." That is, to be able to do if not everything others do, at least what we desire to do, at a level we (let's face it) created for ourselves. Of course, those two things are pretty intertwined, so it would be hard to be completely certain which is operating at a given moment.

I keep going back to the parallel between PCF and post-polio syndrome. The original advice was to go and stay active, after all, you've been "fixed." But the truth is there is more going on than misaligned joints - far more. The upshot is, we PCFs will in many instances acquire additional strains and injuries merely from attempting to maintain our own "normal," such as we may have been able to maintain ten, fifteen years back. Unfortunately, this is simply not sustainable - our soft tissues - muscles, tendons, ligaments, fascia - all have varying levels of weakness and probably deterioration that can catch up to us when we aren't looking.

I think for me, and I suspect for many others, the better choice is to not push it, to just go to a comfortable level and then rest. Is this disappointing? To be sure, because we've been crawling long enough, and the inner urge is to fly. But it is the probable outcome that every time we push off to launch, we will pay a price. So finding that happy medium is the trick, which will be different for all. But find it we must. Either that, or invest in a large body-sized bag of ice.

To continue my rant: In my observations of people in general over the years, I have noticed one thing in particular that is true for probably 99% of the people in the world (besides not being among the 1% wealthy elites, of course.) We are creatures of habit. If we have a problem, we try to get it fixed, but will settle for a less-than-perfect fix if we can at least continue with our "habits," be that our work, our leisure, or whatever. The same applies to our health, and by clear extension, our comfort level. If we can get at least within, say, 80% of where we were before something changed, well, we can live with that. Because what we aren't comfortable with, in general, is change - mostly because it takes too much work. Too much reorganizing ourselves to find the comfort spots that change imposes. Too much adjusting our sense of propriety and sense of self to the new regime.

But change, as it is said, is the only real constant. We humans just tend to either forget that, or ignore it because it's not the way we "want it." A cold, for example, is change, and besides the physical manifestations, all that a cold imposes on us makes us cranky and resentful, even a bit outraged that we have to deal with such an imposition.

So let's consider us clubbies: we START with change - the expectations and judgements of others regarding who we are, what we are capable of, how we should or should not fit in their lives. The irregular impact of surgeries, doctor visits, The accommodations we have to make to situations as we encounter them at school, in the workplace, and just living life in public places. So it is small wonder we seek a solution to our pain and discomfort not only to find relief from such pain, but to get to some stage of regularity in our lives. When we find it, even if less than ideal, I think we have a difficult time when Change hits us again, especially if that change is a further limitation on our options for living with some comfort. When we find that a certain activity is no longer going to work for us, no one should be surprised that we should feel angry, or saddened over this change, one that may no longer be a temporary one. Acceptance of lessened abilities is pretty damned hard, but especially when that has been a part of a life-long struggle. It's no surprise that little voice inside our heads cry's foul.

I can offer no solution to this dilemma, only suggest an idea: practice change. It's going to happen anyway, so make the best of it. Read outside your comfort zone. Eat at a restaurant you've never tried before. Try an activity that you were never interested in before, just to shake yourself out of the cobwebs. Rearrange your furniture every six months. Even little things can work: if you usually put your left sock on first, start putting your right one on first, instead. Find little habits you have, and change them in some way. This type of exercise, I think, helps a lot when something changes that we did not ask for, that makes our lives more difficult, because what's really at stake is our own sense of self-worth. When our capacity and abilities are diminished, we feel it as an attack not merely on our bodies, but on our entire sense of self, and self-worth is a big part of that. So finding ways to embrace change can help our over-all resilience, can help us better cope with adversity. We have enough dis-ability. The ability to increase acceptance of change is something we clubbies are better suited to practice than for many people. After all, we started that way.

Some Comments:

Jilli Anderson ...... I agree with you that the better choice is not to push it. However, I find myself making the same idiotic decision repeatedly to "do it now" and "pay for it later." If I could only listen to my own advice! :)

Sherri Hewitt How very true... but .... I don't take "no' for answer or in my foots case "I'm too stiff today...." I just off the couch a minute ago and my foot balked because it had stiffened up...wouldn't bend. That's what I get for being on my feet all day :)


Elizabeth Komos Wow, I really needed to read what you wrote. I've been crying for the last two hours because of the pain, but also the frustration. 1) the trip for Christmas made me push too hard to try and keep up and prove to everyone that I'm okay.... 2) i realized just how dependent I am. Hubs is out of town and the dogs are no use when I can't walk. Wheelchair is downstairs in garage and I can't get to it.... In stuck. I hope I have finally learned my lesson on pushing it too far so that I appear normal in others' eyes.

Jilli Anderson I think, for me, I pretty much know what my limits are. It's more of a matter of wanting to be capable of doing more. I know what you mean, Elizabeth. I did a little of the same thing at Christmas. I wanted other people to not make allowances for me when we were out and about. I hate being the one that the plans change for. I get so tired of being asked, "are you okay?" 9 times out of 10 I say, "Yes, I'm fine." 9 times out of 10, I know I'm not, but I wish I were, so I just keep going. If that makes any sense.

Lucia Quental Elizabeth, I've done very crazy things in the past, like climbing a huge mountain w/ a group of pros and getting lost. I walked for 18 hours, but at the time I was 16, and wanted to prove to myself that I could do it. I think that there's some good in doing things like that, because it shows to yourself what you are made of. But I also think it is a little crazy and one time is enough. So, maybe this was your mountain? I hope you are feeling better. 

Lucia Quental ......Getting old is a constant change, loss is so difficult to deal with. I find the only way is to mourn what you lost, and then let go of it. Thats why I believe anyone with a disability should do some therapy, if only to learn to loose. Thanks for being there for me.