My husband died of cancer in early October 20 years ago. Allan was someone who needed to be in charge. I came of age in the 1950s so that was fine with me, more or less, for 30 years. I’d been self-sufficient before we married so the transition to handling finances after his death wasn’t difficult. Although his absence left a huge hole in my heart, never to be filled, the joys of independence gradually began to help fill the void. In the decade after his death I traveled extensively. First there was a river barge trip in France. Then a visit with friends in the UK to witness the christening of my goddaughter. A stay in a villa in Italy. Two weeks driving across Basque Country in northern Spain. Always with friends. Always memorable.
International travel came to a halt after the diagnosis of myositis in 2013. After several tests, including a biopsy, the neurologist was hesitant to break the news that my version (IBM) is non-curable, non-treatable and progressive. And so it is.
Myositis has taught me countless valuable lessons. It was rough at first having to negotiate the outside world as a “disabled” person. However, from the get-go I’ve refused to be identified by this condition. Of course people are curious about why I need a walker. I try to give them a simple description and change the subject If they want details Google provides them.
Lesson No. 1: Adjustments, as you may imagine, have been constant. I’ve been fortunate to build an impressive group of friends/family and caregivers who are all part of an extensive web of support. My caregivers are paid well. My friends are generous and kind and funny. Because myositis is progressive, I’ve gradually needed to hire more helpers. They also become friends/extended family. Or they move on. Everyone in all categories quickly learns that pity isn’t tolerated. Ever. There’s always room for friendship and compassion.
Lesson No. 2: If you don’t know of Stella Young, I highly recommend her TED talks. She was a brilliant advocate for disabled rights in Australia. She put her points across with intelligence and wit. I found her hilarious. If we can’t laugh about ourselves or our wacky world we’re doomed. Stella was an early teacher. She died way too young but left a huge legacy.
Lesson No. 3: Aside from Stella’s wise words, I am constantly taught gratitude by the reactions of strangers when I’m away from home. No need to ask for assistance. It happens automatically. I cannot approach a door without someone hurrying to hold it open. When waiting in a restaurant there’s always someone jumping up to offer a seat. It’s not pity. It’s purely kindness. And empathy. When I walk into a crowded restaurant pushing my rollator, folks carefully move chairs to give room to pass. Those are just a few daily examples.
Lesson No. 4: At first it was painful being outside the safety of home. I was self-conscious, awkward, unused to being “different.” Gradually another lesson was learned. Eleanor Roosevelt’s words taught me well: “You wouldn’t worry so much about what others think of you if you realized how seldom they do.” She was spot on. I’m no longer so uncomfortable in public. People see folks using walkers all the time. They may have mothers or grandmothers in the same shape. No big deal.
I won’t ever call myositis a blessing but it has taught valuable life lessons and an outpouring of love, empathy and concern that is beyond measure.
Susan Mines is a Terra Linda resident. IJ readers are invited to share their stories of love, dating, parenting, marriage, friendship and other experiences for our How It Is column, which runs Tuesdays in the Lifestyles section. All stories must not have been published in part or in its entirety previously. Send your stories of no more than 500 words to lifestyles@marinij.com. Please write How It Is in the subject line. The IJ reserves the right to edit them for publication. Please include your full name, address and a daytime phone number.
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From loss to freedom to a diagnosis to life lessons and love - Marin Independent Journal
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