This week, I got a new issue of the magazine, "Momentum," the publication released by the National Multiple Sclerosis Society on a quarterly basis (you can read this issue here: http://publications.nationalmssociety.org/momentum/spring2012#pg3).
Overwhelmingly, I was taken back to 10, 15, and 20 years ago, and the deep emotional reactions I had when that magazine arrived. For a long time, even though I had officially been diagnosed, I was unwilling to "own" what that meant. The rapidity with which I was diagnosed, at a time when there were NO TREATMENTS available (other than those that had a mild effect on symptoms), was very nearly more than I could take. The diagnosis turned my world on its head, and I searched for anything to help me function. It was the early nineties, and the internet had not evolved to the mega-machine that it is now, so I spent hours and hours in libraries, bookstores, and eventually, in so-called "new age" churches.
Even today, I cringe when I hear other people with MS talk about "my MS." I don't ever refer to it as "mine," because you know what? I don't want it, I didn't ask for it, and I would be ecstatic if it was cured tomorrow. I don't think my feelings about having MS fit neatly into The Five Stages of Grief, as famously described by Elisabeth Kübler-Ross. Perhaps you're thinking that I'm in denial:
This first stage of grieving helps us to survive the loss1 . In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.
As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface. The truth is, when you have MS, you’re in a never-ending cycle of the stages of grief. When I was first diagnosed, I felt as though I'd been hit by the proverbial Mack truck:
Now, almost 21 years since diagnosis, I do not feel that any *healing process has begun. But I have noted some painful milestones, which we can call losses1:
Can't run anymore, but can jog a little, after my (then) 4-year-old daughter as she skips to kindergarten.
Unable to jog, even a little, but still take 2-mile walks on a regular basis.
After walking ½ mile or so, have to stop and rest for a few minutes, but then can keep going. I can repeat this several times.
Standing for more than 25 minutes or so results in a strange heaviness in my legs. I have to use extra care when walking after a period of standing, to avoid looking uncoordinated.
When shopping, I always use a cart, even if only grabbing a couple of items. Somehow it feels “safer.”
When trying to walk, I experience “foot drop,” and turn back home.
After shopping and unloading groceries, I “fall” into my car, then drink from a cold drink, resting for a couple of minutes before driving home.
So gradually, I lost functions. They were relatively small, and I could still take care of my kids, and work, and do all the household things that I’d always done. I knew I couldn’t do many things that I used to take for granted, and I mourned those. I remember thinking that any new people I meet wouldn’t really know “me,” because they would never see me running 4 or 5 miles, or dancing for hours. They wouldn’t realize what a dynamo I was!
That 4-year old daughter? I will be attending her graduation when she is awarded her Master's in social work in a few short months.
I can't begin to express how much I yearn to have only those minor losses, which really weren't minor, but I could work with them. Since breaking my ankle last summer, I have noticed a decline. I keep telling myself that things will improve. I'm deconditioned, I need to get back into shape! Things will turn around!
I don't know if they will.
Everything, and I do mean everything, takes a very long time for me to accomplish. From moving about in the morning when I first wake up, to showering and getting dressed, everyday activities take about twice as long as they did even a year ago.
Time was, I had days that were difficult, but they usually yielded to better ones when walking was easier. Now, I vacillate between denial, bargaining, anger, and depression, all the while feeling, oh yes, you better believe that I accept this: it's no longer an option! When an acquaintance comments that I appear to be limping, I can't feign "an old injury" anymore. A cane goes with me everywhere.
So when my new issue of Momentum came, I noticed that I found information throughout the magazine that warrants further study. I find myself keeping notes (in the new, digital mode) about all kinds of things, that I used to casually ignore, because I just didn't need that stuff.
I used to suffer some fairly minor disabilities, and yet, inwardly I cried like a child.
Now I am suffering some more significant disabilities. And I am going through all damn five of those stages on a daily, sometimes hourly basis. Because MS is relentless. It doesn't care that you've already adapted and adapted again and again, and even flourished in the face of its destruction. It just keeps on keeping on.
It's all relative.