In the Good Old Summertime

by Dean Kramer 
July, 2002


I love my ideas about summer in the country. I think of pasta Primavera made with fresh, home-grown produce, the smell of suntan lotion with its promise of long days of indolence by the pond, and afternoons reading under shade trees or on a porch with a glass of lemonade. I receive requests from city-dwelling friends looking to escape to Cripple Creek for a day. These calls inspire my Merchant/Ivory movie fantasies involving croquet and white linen frocks, sparkling cider in crystal glasses and desultory conversation on firefly speckled evenings. Sometimes these things actually happen, sort of. But there are other, less delightful, realities of summer at Cripple Creek— tick and flea control in a two-room, four-dog house, several kinds of biting flies, a burgeoning crop of poison ivy, and the challenges of a summer with MS.

During the cooler months the Baclofen I take for spasticity works quite well. Through trial and error I've found the dosage which allows me some relief from spasm yet still affords me control over my gait and my bladder. But as the weather turns hot and humid I have to adjust my dosage to account for the increased flaccidity I experience due to overheating. And because my brain has been affected by MS also, each year I forget I have to do this until I find myself, on the first really hot summer's day, walking like Gumby. The thing is, this can happen so fast— one minute I'm setting out across the yard at my normal, slightly halting pace. The next thing I know, it's as if I've turned into a slo-mo human Jell-O mold. I experience an initial panic, "Oh, my God! My MS is getting worse!" And then the voice of reason (we all have one— mine currently sounds like Yoda) says, "No. Remember? Decrease your Baclofen you must, because summer it now is."

I have work outside which I both need to do and enjoy doing. In the spring and fall I am obsessed with getting as much done as I can before the weather is too hot or too cold for me to function well. In summer I have acres to mow and fence lines to be kept free of weeds on a regular basis. I have tools to help with these tasks. I use a riding mower. And, because I can't pull the cord on a gas-powered one and I have great distances to cover, I use a cordless electric weed-eater and a four-wheel-drive scooter to take me to the weeds. In addition, I have necessarily learned to be gentle with myself. When I begin staggering dizzily in circles the voice of reason says, "Not every task needs to be completed today. Why not go have some lemonade and read for a while?" Despite these aids, both material and mental, sooner or later, I decompensate neurologically, become fatigued, or both. Then, feet flopping, I trip, stumble and lurch my way along. Sometimes this happens after only a brief period of work time. On other days though I may decompensate I have only minimal fatigue. Thus I am able to flop, trip, stumble and lurch for a much longer period of time. Viewed from a distance I must be quite a sight. Gumby waving a weed-eater around is probably downright alarming. Nevertheless, I so enjoy working outside and the feeling of competence it brings that I do tend to push myself a bit. Eventually, though, I return indoors where I encounter the thus-far endless air conditioner war. Those of you who are fortunate, as I am, in having air conditioning and who live, as I do, with others may know whereof I write. For me, this war is fought on several fronts. There is the battle I have with myself early each summer over the electricity bill. On one hand, cool air costs money. On the other hand, I want to be able to function. This dilemma is always resolved in favor of my being able to move. After all, I have to get to the mailbox to pay the electric bill. There is also the annual struggle to find a thermostat setting that allows me to function but does not frost the windows or cause the dogs to grow their winter coats too early. That struggle is ongoing because mid-Atlantic weather is very changeable. Another ongoing struggle features two people with differing tolerances for heat and cold. Twink, who is spending her first full summer with me, is just coming to terms with my heat-related MS difficulties. She is gradually beginning to see that though one can always put more clothing on, there is a limit to how much one can decently take off. While her awareness develops, we are holding discussions and negotiations on perceived appropriate amounts of air conditioning. Usually, these talks are civil though sometimes her voice is distorted by her chattering teeth and muffled by the woolen scarves that protect her face from frostbite.

There are several options for people with MS who must cope with summer's heat and humidity. For instance, I have a misting spray-bottle with a fan attached which I bought at a discount department store. I keep it cold in the refrigerator until it's needed. There are gel-filled neckerchiefs and vests one can buy, soaked in water and refrigerated before wearing, they provide relief from the heat. Some of the vests are pricey but the neckerchiefs are relatively inexpensive. One could even buy a fishing vest and load the pockets with frozen gel-packs. I'd write more about these helpful products, but it's humid and in the 90s here today. I'm home alone with the ac cranked, and I find I must go scrape ice off the windows and defrost the dogs. I'm planning to enjoy the summer in both fantasy and reality. I hope you enjoy yours, too.