How My Husband and I Became ‘Permanently Enabled’

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by Annie Dixon |

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The truth is, my husband is a motorhead. Like most of the rest of the world, I think Ronald is a great artist, divinely inspired to create delicate images of profound beauty. But he and my mechanic brother know he only does that to fund his passion for fast and funky cars.

Over the years, the man I married has owned and tinkered with all sorts of exotic motors. He was raised with Jowett Jupiters and Javelins. Arriving in America in his early 20s, he indulged in a series of short flings with all the sweet young things made in Detroit. However, his attention and loyalty quickly returned to classic vehicular expatriates.

Vintage Jaguars and Land Rovers were his weak spot, and he garaged a procession of V-12s, saloons, and Range Rovers in various states of restoration and disrepair. He was happy to indulge my fascination of MGBs, finding me a pageant blue convertible that had rolled off the assembly line the same year I graduated high school. We went from zero to 60 in all kinds of style. Then, he was diagnosed with aHUS and went from cruising to parked.

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Let Me Sleep on It

Driving Mr. Ronald

When he first ventured out after three weeks in the hospital, it was only to the cancer center for Soliris (eculizumab) infusions every two weeks. I chauffeured him and parked as close as possible, ran into the lobby, and brought a loaner wheelchair out to the car. He had to be pushed across the lot, into the elevator, and through the clinic to reach the recliner where he refueled.

Constantly clad in slippers and with a PICC line dangling from his arm, my husband was obviously a patient in need of assistance. The doctor mentioned that he could authorize a handicap parking permit for us. My automotive enthusiast scoffed at the idea, but he was not the one pushing the wheelchair. I asked how complicated and expensive the process was. Turns out, a six-month permit could be issued based on the doctor’s signature and a $5 fee. Sign me up.

Permanent handicap license plates were an option as well. But we weren’t ready to contemplate the fact that his condition might be permanent. And we owned more than one car and optimistically thought we might need to drive the company truck again. Permanent plates struck us as defeatist, uncool, and unprofessional. A placard that hangs from the rearview mirror and is valid for six months seemed perfect.

On the road again

Over the summer, the swelling in Ronald’s feet went down and he could wear shoes again. Later, the fall weather meant long sleeves covered the medical apparatus protruding from his arm. Those who didn’t know how sick he was couldn’t tell. But I knew. I saw how slowly he moved, his hesitancy to commit to an excursion to the grocery store, his willingness to have me drop him at the door and park the car.

We renewed the permit quite a few times. As he was weaned from the infusions, I made a couple trips to the cancer center just to get the doctor’s signature in between appointments. After three years of signing applications for six-month permits, the hematologist substituted the form for a permanent permit. I hadn’t realized we could have a permanent permit with ordinary license plates. This was the perfect long-term solution. I like to call it “permanently enabled.”

We still don’t go out as easily or often as we used to. But when we do, I carry the handicap parking tag in my purse. It is my secret weapon that I can hang from the rearview mirror to make a two-block trek to the restaurant disappear. And that can make the difference between having a social life or not. Besides, it looks defiant in the windshield of a sporty convertible.


Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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