One of my favorite paintings is Christina’s World, by the great American artist, Andrew  Wyeth.  For years now, a reproduction of the painting has hung on my living room wall.  The subject of the painting is a middle aged woman, crippled by polio, who Wyeth observed crawling to her neighbor’s field.  The painting always had an impact on me, the composition that Wyeth uses to dramatically heighten the vastness of the landscape, the absence of trees, the empty sky and the weathered buildings, and the woman, somehow both small and large, dominated by and dominating the landscape at the same time, with her withered arms and twisted feet and faded pink dress.

These days, when I look at the painting, I am reminded of my own experiences with Parkinson’s Disease.  I don’t mean to imply that I am anywhere close to the severity of Christina’s polio.  But I recognize the position Wyeth stages her in, leaning on her side, her arm bent under her, as the same position I find myself in when trying to roll myself over in bed, particularly in the morning, when it has been several hours since I last took my meds.  Everything is slow, from getting dressed to eating to taking the garbage out, and is only getting slower.  So I can relate to crawling across an open field.

If I had to summarize my current condition, I’d divide the days into three categories:  The good, the bad, and the crummy.

The good days are still the vast majority.  On the good days I feel pretty good most of the day.  The “off“-periods (times during which the effectiveness of my medications is wearing off) are four or more hours apart, and when they hit, they aren’t too bad.  On good days, my episodes of daytime fatigue aren’t too bad, usually hitting in the late morning, and a half hour or so sitting in my recliner, awake or asleep, seems to adequately re-charge me.

The bad days are the days when the wearing off occurs more frequently, sometimes as frequent as every three hours, and are more severe.   At their worst, my entire body is overtaken by a discomforting rigidity, or stiffness.   At these times I shuffle more than walk, and at the very worst, every movement, no matter how minor, is very difficult.   This is how I wake up most mornings, and getting dressed, particularly bending over and putting socks on, can take several minutes.  If I’ve eaten too much or the wrong things since I last took my meds, my wearing off periods are accompanied by stomach nausea and/or severe acid reflux.  On the bad days, the fatigue persists, and becomes incapacitating.  The bad days typically occur a day or two after doing something physical, after overdoing it.  There is also a greater likelihood of loss of balance during these times.  I’ve had four falls during the last month.

I built a wooden compost box for my wife’s flower garden, to generate good planting soil.  She puts yard waste, coffee grounds, egg shells, etc. A few days ago, while moving the new box into place next to our barn, I leaned too far forward and fell over the side and right into it. It took me about five minutes to get myself up and out. Another time, about two weeks ago, I was in a public men’s room at a gas station, urinating, when, as the trickle slowed down, I moved forward a bit and apparently had my head bent too far forward. I felt myself falling forward, right over the toilet – fortunately, my head broke the fall, smacking loudly into the wall – I put a small dent in the drywall but didn’t break through.

The scariest fall happened the day before yesterday.  I was carrying an armload of dirty laundry down the basement when I lost my balance and fell hard down the last three steps.  The scary thing about these falls is you can feel yourself losing your balance, it’s like it’s in slow motion, but you can’t get your arms or hands up quick enough to brace yourself.   I was lucky in that I only wrenched my right knee, it could have been a whole lot worse.  But, of course, the next day not only did my knee hurt, but the off-periods were more intense because of it.

I’d estimate that currently the good days outnumber the bad days by about three to one.

Then there are the crummy days.  A good day or a bad day can also be a crummy day.  Crummy days are the days when I think about my condition, days when I realize how bad the bad days are, and days when I realize that even the best good days aren’t as good as the most average run of the mill days prior to my diagnosis were.  The crummy days are the days when I realize how much I’ve declined, and how much worse it’s going to get.  I also feel, on the crummy days, an incredible sense of isolation, and that I am, like Christina in the painting, a solitary figure in an empty landscape.  In short, the crummy days are days when I feel sorry for myself.

I don’t have too many crummy days.  I normally try to stay positive and keep them at bay.  But I’d be dishonest if I said they didn’t exist.   I think it’s important to do whatever one can to minimize the crummy days, and I think it is equally important to recognize they can’t be completely avoided.  I think it’s important not only that I understand this, but that the people close to me do, too.

I’ve written a great deal about the new perspective I’ve gained since having Parkinson’s and the new found appreciation of every day miracles I never noticed before.  These things are true and real, and they bring me comfort, but in the end, one thing above all remains true:

It sucks to be sick.