Rain, and We Do Need It.
Last night brought bright lightning and long, ominous sounding rolls of thunder interspersed with loud booms suggesting someone nearby was feeling the losses of lightning strikes on electrical power lines. The rain followed, falling in heavy drops that had cars and trucks splashing quickly on the road beyond our windows. But it stopped as quickly as it had begun.
Our lilacs had just begun to open, and the dogwood tree to bloom. The rain returned today with a heavy downfall again; we’re not sure whether there will be any blossoms left on the dogwood tomorrow. But the lilac will survive and thrive, as it had just begun to open. I have always had a lilac nearby … in the city where I grew up, it bloomed every May in the back yard surrounded by coal ash from the furnace. At our first house beyond the city, it grew outside our second floor windows, sending its wonderful aroma into the windows on late May nights. And now here at our home, we have a number of lilac bushes: some from my parents’ home, and some from Rick’s parents’ home… some are out in front by the driveway, and some out back, but none close enough to our bedroom window to share their scent. We had a woman tell us a few years ago that our lilacs out front were the most fragrant she had ever encountered … pretty good for a bush that had been transplanted only a few springs before.
I can appreciate the beauty of the blossoms, but no longer sense their scents. My olfactory sense declined about six years ago, when I first began the nightly injections of ‘disease modifying drugs’ for multiple sclerosis. With it went most of my sense of taste as well. Down to only three senses now, I’m learning to appreciate each of them more. Hearing will be next to go, and has begun already. I often ask my husband to turn up the television when the newscasters look like they’re saying something interesting, and he obligingly does so without comment.
The other two, the senses of touch and vision, are both vulnerable as well. I have an altered sense of touch in my left fingertips, and can easily (if foolishly) lift a hot bowl out of the microwave without pain using my left hand. Of course, there’s a danger in that, and so I’m careful to use my right hand to avoid a burn.
Vision is the sense I am most afraid of losing. Hot weather often causes double and blurred vision for people with multiple sclerosis, but that is a temporary, not damaging loss, caused by the irritation of the myelin-impaired nerves that control the muscles that focus our intricate vision. I do have a cataract, and have had it now for over twenty years; the ophthalmologist told me that when it is ready for removal I will be the one to come asking for the surgery, but I’m not there yet. He says it has been ready for years, but it does not bother me often enough to risk eye surgery. I hear they get better at it year by year, and it is a very simple procedure now. Even better for me … I can wait a few more. When heat bothers my vision, I am free now not to have to drive to work. I can close one eye to eliminate double vision. I can sit down when walking becomes challenging due to dizziness connected to vision. Retirement does have its advantages.
Six years ago, I was enjoying the scent of lilacs; I was enjoying the taste of beef stew, turkey and squash and cranberry; I was listening to the birds’ chatter as I sat on the porch writing in my journal on a Sunday morning. I was knitting, and sewing, and embroidering with students in school, with nimble fingers that could then handle multiple strands of colored yarn, and intricate patterns of knitting stitches. And I could match colors from memory when shopping in a fabric store.
Five senses … six years later, I’ve lost most of smell and taste, some of hearing and touch, and preciously guard from the sun my vision. I put on my sunglasses before I go outdoors, whether it is sunny or cloudy, foggy or early evening. In a store lit by bright lights I wear them indoors as well. I can still type despite the tremor in my left hand (though the letters a,q and z (my granddaughters’ initials!) and upper case letters of the right side of the keyboard often result in double letters as the tremor hits keys twice. I most often have to retype the pronoun I as my left pinky’s weakness leaves it in lower case even though I consciously hit the shift key.
Do I blame the DMD for these losses? Do I accept them as age-related? Am I more honest in admitting to these signs of decline because of my diagnosis? I don’t know the answers to those questions. I don’t ask others if their less-dominant hand’s fingertips have lost feeling. I don’t know whether people continue to enjoy the taste of food as much as they once did as children … I do know that they seem not to have lost their sense of smell, as they often share their delight in the scent of flowers. When we had a skunk take up residence under our barn one spring the smell was very difficult for Rick to deal with, and yet I never even sensed a whiff of it. Some losses are gifts, I guess.
I enjoy reading, and typing these blog entries, and my book reviews. I can still see the computer screen (though I do dim it more than others might) and I can always enlarge the font on it when my eyes grow tired. I can, with a magnifying glass, thread the needle on my sewing machine when I jam the automatic needle threader (as I did earlier today … and I will be searching tomorrow for an address where I might be able to order a replacement part for that.) I read many books on the Kindle Rick and Rob gave to me a few years ago, as that also allows for font-size adjustment. I try now and then to write in my spiral notebook journal … but often my mind wanders before my fingers cramp up. I guess it is because, sitting in the parlor and writing in what used to be my writing chair, where once I would sit for hours writing hundreds of words on scores of pages … commentary on our lives, our world, our families … my job, my students, my partners … all of those memories come rushing back when I sit to write in my notebook, and my mind is lost in the reveries. Typing on the laptop is different. It is purposeful, not lackadaisical. Type is more formal, and so more focused. It’s hard to explain, but easy to understand.
And so that is what’s been on my mind this week … the changes brought with the DMDs … the injections now admittedly ineffective, judged so by study after study, and yet continually prescribed and accepted by doctors and their patients. I am amazed that there is not more outcry about their failure. I am resentful that I may have endangered my self, and my senses, by accepting and acquiescing to the difficult injections for so long. And yet others are going on in their second decade of these medications. I am not. I believe I am better without them. But I cannot retrieve what I have lost to them … or to age … or to the diagnosis itself. It’s hard to explain, as I’ve said many times. But it’s easy to understand.
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