Daily living

“Without leaps of imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning.” ― Gloria Steinem For as long as I can remember, my father has always had a saying: “Perfect planning prevents piss-poor performance.” Much to my husband’s frustration, though, I’m still…

OK, I know I look silly wearing this — maybe even scary — but the Father’s Day gift I received from my son and his family is really cool, especially for someone with multiple sclerosis. Just in time for the hot days of summer, I now have a…

It’s a decision most of us with a chronic illness have to make sooner or later: When do we disclose our illness, and to whom, and how do we do it? Thirty-one-year-old Katie Coleman faced that decision not long ago. Coleman has stage 4 kidney cancer, and, in April, she…

The last few years have been rough for a whole host of reasons, and I think it’s safe to say that most of us in the United States feel utterly lost and burnt out. There’s no shortage of things to be stressed about and afraid of. I feel like…

There is a more heavyweight subject I could inflict on you lot, but let’s put our feet up this week. Even I can do it with the one leg. My wife, Jane, and I celebrated our 30th wedding anniversary last Friday. You’d have thought we’d have planned a big…

After two days — 16 hours of it spent on the road — and 1,104 miles, I hadn’t had a single accident. My bladder control meds must’ve worked. The semiannual trip my wife and I take between Florida’s southwest coast and the suburbs of Washington, D.C. is never…

Like watching a scale tip up and down, I’m constantly assessing how any choices I make could affect how I feel tomorrow, or even later today. Although my multiple sclerosis was as aggressive and unstable as a hurricane in my first few years with it, I’ve found a baseline…

Today’s youth have to accumulate a range of skills. Everything changes so fast. Parents often have no idea what career their kids even want to follow. Do you know what a UX designer is? Me, neither. This latest social change was revealed to me in a recent Guardian article,…

A few weeks ago, my cane mutinied. I’ve been using canes for about 20 years — first one, and then a pair. I’m tough on them and put a lot of weight on them. I take them out in the heat, cold, and rain. I force them to rest on…

The thought of summer approaching both worries and excites me. I’ve always preferred the changing of seasons and fair weather to the height of a season, even before my MS diagnosis. I prefer change and the idea of starting anew, as if it might be a remedy to the…

In my cooking days, I always had a stock simmering away. Nothing was wasted. What had been frugality spurred on by self-imposed poverty — first as a student, then in the struggling life of a garret writer — later became the general political point of not wasting resources. It hurts…

This week’s been a relief. I haven’t had to dash to casualty or fallen over in my chair. Nor have I stirred up a ruckus with the health powers that be or bumped into a fellow MSer with an interesting tale. My knockabout personality undoubtedly has…

“Well, this an idea for your next column, John,” my wife, Jane, said, a tad sardonically. At least I thought it was probably sardonic, as there was just a wisp of a razor-thin smirk glimmering at the corners of her eyes. This was because she was wearing a face…

It’s not easy going for a cruise when a scooter and a couple of canes come along for the trip. I’ve done it with success a number of times in the past, and planning helps a lot. My wife and I just returned from our first first cruise since…

Without hesitation, I would say that my bladder and bowel issues have been the hardest symptoms to manage and overcome following my MS diagnosis. It comes down to one thing: the fear of having an accident in public.

My column’s handle is “Fall Down, Get Up Again” because the first piece I wrote for Multiple Sclerosis News Today was titled “A Mountain to Climb with MS — in My Living Room.” That column got me this gig five years ago. It was set in 2012, mind you,…

Last year, I got the chance to read and review Edith Forbes’ medical memoir, “Tracking a Shadow.” I thought it was an encouraging and thoughtful work, so I contacted her by email for an interview to share her thoughts with readers of this column. Forbes graduated from Stanford…

For the few of you lot lucky enough not to know about intermittent catheterization, it’s shoving a thin bit of plastic up the old (in my case) urethra so that you can pee. I am well aware of how bad plastic is for the planet, but in my open-and-shut…

It was a moment of clarity. Unfortunately, my attempt at making a bright, clear consommé has for the moment turned into a muddled chowder! Even worse, it was writing this column that started it. I’ve written so often in this column about using my Molift assistive device for transfers…

Do you think about death? I do — a lot. I mean, like almost every day. Don’t get…

“Serendipity. Look for something, find something else, and realize that what you’ve found is more suited to your needs than what you thought you were looking for.” — Lawrence Block When the world was thrown into lockdown at the dawn of COVID-19, I was already an old hand at functioning…

The week started with a bang, albeit with a hint of underlying anxiety. Friends and former work colleagues gathered during the first days of spring to chat in my sun-lathered back garden in South London. COVID-19 lateral flow tests had all been passed. Previously, we’d spent years working together on…

Photo courtesy of Anna Sochocky Day 31 of 31 This is Anna Sochocky’s (annasochocky.com) story: “The MRI shows lesions on your brain and the upper part of your cervical spine, which explains the numbness throughout your body and the limited function on your right side,” my…

Photo courtesy of Lance Schultz Day 30 of 31 This is Lance Schultz’s (@drlschultz) story: My first symptoms began in 2006, the year I turned 50. At first, a cold breeze on my legs would cause severe spasticity. I would walk like Frankenstein’s monster.

Photo courtesy of Jennifer Conway Day 29 of 31 This is Jennifer Conway’s (@jenzconway) story: I was 24 when I was diagnosed with relapsing-remitting MS in 1998. Over the years, I’ve learned so much about how to manage daily life with MS and all that…

Photo courtesy of Roy Padilla Day 28 of 31 This is Roy Padilla’s (@royale_padilla) story: My journey with MS began around fall 2008 (allegedly). One morning, I woke up with a small headache, that day by day got worse. It became so bad I couldn’t keep…

Photo courtesy of Julie Tovar Day 27 of 31 This is Julie Tovar’s (@theadventuresofsamandjulie) story: My journey started in December 2019, as I was planning my February 2020 wedding. I had developed a limp and was experiencing unusual symptoms along with lots of pain.

Photo courtesy of Stephanie Singleton Day 26 of 31 This is Stephanie Singleton’s story: I was diagnosed with relapsing-remitting MS in August 2014 after going to the hospital for new-onset double vision. I was not surprised when the emergency room doctor came in to tell…

The dull throbbing always hits a crescendo “in the wee small hours,” as Mr. Sinatra — or rather his songwriters — so aptly put it. I’m referring to a wound that’s been with me for over a year now. True, it disappeared for a teeny while, when my heel…

Photo courtesy of Feliciano Velazquez Day 23 of 31 This is Feliciano Velazquez’s (@felicia.no) story: I was diagnosed with relapsing-remitting MS at the end of April 2020, right at the peak of the COVID-19 epidemic, at age 21. I remember experiencing double vision and had…