Daily living

Take a minute … and relax. It’s been a fraught few weeks of numerous solo hospital visits, as my wife was first dealing with a dying father and then helping to organize his funeral, estate, and her own turbulent emotions. Her mum had died only four months ago.

“I’m alive,” said Shadow. “I’m not dead. Remember?” “You’re not dead,” Laura said. “But I’m not sure you’re alive, either. Not really.” This snippet of a longer conversation in Neil Gaiman’s “American Gods” is a strange and wonderful moment in the book — and not only because Laura…

OK, I’ve used a typical tabloid headline to draw you into a column about dealing with lymphedema. Well, the topic is not exactly sexy! Though my calves are now extremely toasty due to being effectively embalmed. Lymphedema has been plaguing me for years now. There seems to be…

I have a hard time asking for help. Even when it’s offered, my knee-jerk reaction is to decline. Only in desperation do I reach out for, or accept, much-needed assistance. I say I am OK more often than I am. I do things myself more than I should.

If MS was just about MS, it wouldn’t be easy, but it would be a lot easier. It’s different for all of us. For me, MS means ambulation is practically impossible. I could manage a few yards, but the risk of falling and spending the day as an upside-down beetle…

I watched the sunrise with dread, my peaceful time disquieted by my own internal chatter. An 80-degree day would soon replace the cool mid-January morning. Not my favorite. I am a creature of conditioning. Pavlov would be proud. The mere sight of the hazy morning sun against the blue…

I’d be lying if I said I enjoyed the endless hours of Barney I was forced to endure when I babysat kids in the 1990s, but “The Clean Up Song” has stuck with me. Why? For one thing, it worked like a charm to get the house…

Last October actress Selma Blair revealed that she’d been diagnosed with multiple sclerosis (MS). She did it by posting the announcement on her Instagram account. Back then she wrote, “I have MS and I am ok.” She described her symptoms in some detail, but her overall…

An international survey of caregivers and adults with neurological diseases, including multiple sclerosis (MS), revealed that spasticity is a hidden burden, having a negative effect on the ability to perform everyday tasks, and that relieving its symptoms significantly improves patients’ quality of life. The survey was presented by…

One of the hardest things I’ve had to accept with MS is the necessity of asking for help. Pride and self-reliance dissipate remarkably quickly when you find yourself splayed on the floor and you no longer have the capacity to get up. In extremis, I then ask for help.

Dozens of films have focused on those with diseases or disabilities — and there’s no shortage of Hollywood productions about love and sex. But only a handful have ever really tried to combine these two themes. “Take a Look at This Heart” does the job with tenderness and finesse.

When my wife and I were remodeling our two-story home many years ago, we made a few accessibility changes with my MS in mind. For example, we enlarged a first-floor half-bath to include a roll-in shower. We also installed a higher toilet and made sure there was space to…

  It’s happened to me, and if you fly with a scooter or a wheelchair, I bet it’s happened to you, too: a busted or missing set of wheels on arrival.   On a flight from Washington, D.C., to Venice, my scooter went to Copenhagen. On a flight from…

New year, new beginnings — not a chance. Theresa May still has Brexit as her waking and sleeping nightmare, and I’m still battling urinary tract infections (UTIs). Over the last few years, I’ve probably written about this more than anything else; it’s the one thing the medical establishment…

My eldest son, like thousands of other kids in the world, struggles in school. He’s partially deaf, and some of his challenges stem from inescapable biological factors. However, there’s also a component of learned helplessness that I must address. For many years, he felt, or in some cases…

Usually, I have an idea of what I’m going to write. Today, all I feel is a bit meeeeugh … Which is more a sound of ennui than a recognizable word. In these days of multimedia, I suppose I should record it and insert the clip into the text, but…

Ever since I can remember, my family has had a real Christmas tree. Finding the perfect tree became a magical adventure. We often cut our own, but as I grew older, we would choose one from a local lot. My mom would play traditional Christmas songs while…

Having lived with multiple sclerosis (MS) for over three decades, I have lots of stories to tell about my experience with the disease. Tales about dating, marriage, pregnancy, childbirth, motherhood, relationships, career, and so on. I’ve had MS for so long that sometimes it’s hard…

Even when a major holiday isn’t scheduled in a calendar month, I’m a pretty busy lady. I work a full-time job that requires me to be present and “on” most of every day. I also have to deal with Atlanta traffic, which is physically and mentally exhausting. I’m a…

So, “it” started on Monday. I have no idea what I’m dealing with. Is it a urinary tract infection, a relapse, a bird, or a plane? The superhero metaphor is warranted because, just like in “Avengers: Infinity War,” there will be no resolution by the end. Hmm, I’ve…

I’ve never liked carnival rides (except for roller coasters) because they make me dizzy. Walking sideways, feeling nauseous, and turning green is not my idea of a fun time! So, I go out of my way to avoid anything that can make my head spin. Yet, for some reason,…

We’ve all been there. That “uh-oh” feeling hits and you know you’ll be in trouble if you can’t find a restroom, fast. You hope the clerk in the store with the “Restrooms for Customers Only” sign will make an exception if you tell her it’s about to run down…

“The reason you can’t keep your shorts up,” the orthopedist said, “is because you don’t have enough butt anymore.” It was my first visit with this doctor, and I wasn’t quite sure what to expect. While waiting in a small, wood-paneled anteroom next…

I’m writing again about someone with MS who was blocked from a handicapped parking spot by someone who isn’t handicapped. I know, it happens all the time. But this time was a little different. The spot was blocked by a television news crew. And that struck a nerve…

A tragic car crash involving a man with MS is a reminder that we all should be just a little bit more careful than the average driver when we get behind the wheel. The accident happened in early October on a street in Eugene, Oregon. As reported by…

Books. Magazines. Journals. Emails. Online articles. Newsletters. Podcasts. Local and cable news. The quantity of information we take in daily is impressive — overwhelming, even. According to a 2009 report from researchers at the University of California, San Diego, the average American consumed about 105,000 words per day, or…

“You’ve had a haircut — very smart!” was the greeting at work. Yes, but it was in no way a simple thing. The logistics involved were really that: It took the small army of my family to complete the mission. Until my last relapse six months ago, I could…

Each morning, I’m confronted by an adaptation of the conundrum faced by Forest Gump’s mother: “Life [is] like a box of chocolates: You never know what you’re gonna get.” If I can’t get myself out of bed, it’s going to be a bad one. I may be in…

Flying isn’t what it used to be, as everyone who’s taken a flight in the past 15 years or so knows. Flyers with disabilities can have a particularly challenging time dealing with airports, airlines, and aircraft. Airports are crowded and stretch forever. Airplanes are crowded, their seats are small,…

Asking for assistance is not my favorite thing to do. But frequently, I do ask. The extra help aids in conserving my energy. Some people may feel my energy conservation requests resemble a lazy scam of sorts but, honestly, it’s not. When I ask for a drink of water or…