In my own shoes: Friend isn’t about to let a disease run the rest of her life

In my own shoes: Friend isn’t about to let a disease run the rest of her life

The Westerly Sun

Her name is Linda...and she has ALS.

She delivered the devastating news a few weeks ago in a “form letter” sent to all her friends. She chose to break it this way because she didn’t want to hear the pity in people’s voices or see long faces, because as she wrote, “We’re all terminal. We’re all going to die anyway.”

The letter went on to relate that although a neurologist was more than 90 percent sure she had amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease) and was referring her to a specialist to confirm the diagnosis, she was not buying into the gloom and doom. “I am going to focus on what I can do,” she stated emphatically with her trademark positive attitude. If you know Linda, you know that’s quite a lot.

Having retired from a career in banking just a couple of years ago, Linda has always focused on giving and service. She knits little hats for newborns at the hospital, she is always trolling the aisles of Barnes & Noble to see what books might excite her, then ordering additional copies for friends, veterans, seniors, hospitals, and others who might share the same interests. Her mind has always been sharp, and ALS will not weaken it; so she continues to labor over Sudoku, devour books and magazines, and steadfastly listens to Will Shortz, the New York Times puzzle maven who shares a mic weekly on National Public Radio, challenging her with ridiculously complicated puzzles.

What won’t she do? She will not, at least not at this time, read about what’s in store for her down the road as she prepares to battle ALS. “I am focused on what I can do,” she has proclaimed ebulliently; and indeed all her many letters and notes to us that have followed have “CAN DO!” somewhere within the lines. She writes absolutely nothing about illness nor disability; instead, in a recent note thanking us for sending the puzzle section from the Providence Journal, she wrote, “These are awesome puzzles I can share with at least four people. One is all about bridges — not covered ones, but I will still type it up for the harvest supper the New York State Covered Bridge Society has in November. And I plan on passing another story you sent to Clear Path for Veterans.” That’s who Linda is, and no neurodegenerative disease will quell that desire to pass on to others her zest for life and its fun challenges.

I’m certain pessimists out there will say, “Who is she kidding?” and the answer is, “no one.” Linda is a highly intelligent woman; she just chooses to look at what she has been doing, can do now, and what she will still be able to do as the disease diminishes her motor skills. Linda is plain and simply not buying into throwing in the proverbial towel, feeling sorry for herself, or climbing into bed and pulling the covers over her head.

I don’t think I would react that way, nor would most people I know; but then again, Linda has always been a very special breed. You may ask, “so she believes the glass is half full?” Uh-uh. To Linda, the glass is always full to the brim, it’s just that every now and then she’ll tell you, a few drops get spilled.

There’s a lesson to be learned here. Whether someone is in a wheelchair, pale and bald from cancer therapy, or given a dark medical diagnosis, they don’t want to be pitied. They don’t want to be talked down to like they’re children. They certainly don’t want your long face and your tears; they have cried plenty of their own. And they especially don’t want you to pretend everything’s fine, either. They want your friendship, your honesty, and your ear. They may want very much to talk about their affliction; and if they do, engage them… don’t change the subject! They need to talk, and you need to hear whatever they want and need to say.

Linda is currently seeking a support group and has been given a number of resources in her area. If an ALS support group is geared similarly for those who suffer with addiction, I fully expect her to introduce herself by saying, “My name is Linda… and I CAN DO!”

Rona Mann has been a freelance writer for The Sun for 16 years, including her “In Their Shoes” features. She has written three books: one about the towns and villages in our area, one about growing up in the ’50s, and one that recounts untold veterans’ stories from WWII to the present. She can be reached at: six07co@att.net or 401- 539-7762.


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