Get Out Guide: Dealing with Disability


– Dana Murguia –

Although I know full and well that I am not the only ‘well-spouse’ my age, I sometimes feel like it. At 46 years old, I hear people my age complain about bad backs, wrinkles (the barely visible kind, as in ‘man, I don’t look 30 anymore’ – but who am I kidding? I am not a fan of those vertical flesh furrows under my clavicles, as if all these years my breasts have had a secret plot to pull my head into its neck), and reading glasses. My chronological cohorts lament these things as if they are the worst hallmarks of middle age that they can imagine. Then there are the sporadic Facebook posts from these same folks about some distant cousin, mother, or grandfather – someone who is battling cancer or fondly remembered after losing said battle. For my peers, chronic illness is typically at the periphery of their vision; a distant threat and unwelcome reminder of the inevitable.

Not so in our household. My husband was diagnosed with progressive MS in 2009. We have journeyed from his body doing some pretty weird, mysterious stuff, progressing to his walking like a robot with a side-kick gate, swinging gate and finally to his diagnosis. He now uses a wheelchair and I break the 10th commandment daily while coveting the freedom and seeming frivolity of the ambulatory couples I see ages 40, 50, 60 and beyond. Oh to take a retirement trip to Hawaii, or even the local harbor a mile away, and walk around together.

And yet, with this disability – I hate the words ‘illness’, ‘ailment’, ‘sickness’ and ‘condition’ – comes the clarity of fortune. I appreciate every good day that we have and wonder if the love story with my husband would be so savored if I did not know that every day now is a gift.

He thanks me for nearly everything that I do for him, and I know that this is not the case for many caretakers. He gets angry with the disease, curses, and gets discouraged. So far, and as with all things in reference to progressive MS, there is the tendency to say ‘knock wood’, the fact that we are in love has not dissipated due to the stress of dealing with disability.

With such a diagnosis, there is a tendency to wait for the other shoe to drop. Right now is good, but what about tomorrow? We hedge this lingering threat with defiant humor. During our last trip to the PT pool, my husband boarded his exit ride out of the water on the PVC wheel chair. During the trip up the ramp, he puts up with the possibility of his elbow being jammed on the side bars if we don’t watch closely enough while pushing him out (scary!). Or his butt starts to float off the seat, putting his body into a prone position which makes his “toning” start up. Toning is a blessing and a curse for him. When he tries to stand to get into a car, or into bed, or if he is walking his marathon 50 feet with a walker, his legs’ tendency to go rigid and stick out straight helps him stand up. Try to bend those suckers during a toning round and you will hurt your arm *spoken from experience*. Last week when my husband was leaving the pool in the PVC chair and his legs toned, taking him off the seat so that he floated out of the chair and nearly ran his legs into the wall, he said dryly, “Confucius says, ‘your f*cked’”. Sometimes it takes a sick sense of humor to survive caregiving and disability. Every time I think of his statement it makes me laugh. Maybe you had to be there.

– Dana is the founder and owner of CareMatch, the leading caregiver employment company in Humboldt County.

Read the full length article on her blog:

Emerald contributor since March 2012


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