N-ABLE Guide Sylvia Longmire is an award-winning accessible travel writer, a service-disabled Air Force veteran, and the former Ms. Wheelchair USA 2016. She travels around the world, usually solo, in her power wheelchair to document the accessibility of her destinations through articles, photography, and video that you can view on her website, Spin the Globe.
After being diagnosed with multiple sclerosis in 2005, this Air Force veteran refused to let MS define her. She has also refused to let her wheelchair confine her. Sylvia has visited 54 countries, 43 of those as a wheelchair user and 34 of those by herself. Below, Sylvia shares her take on living differently with Multiple Sclerosis, with the hope of encouraging others who are on the same life path.
sylvia longmire discovers life after multiple sclerosis
They say that the only constant in life is change, and that’s never more accurate than when you have a chronic illness. I was diagnosed with multiple sclerosis (MS) fifteen years ago, and it’s been a roller coaster ride ever since. Like most humans, change is hard for me, and MS requires a lot of it.
However, multiple sclerosis has made me who I am today, and for that, I don’t know that I would have done anything in my life differently.
In January 2005, I was in my eighth year of serving on active duty in the United States Air Force. I had a promising career as a Special Agent, and had gotten married only three months earlier. I had been having some strange neurological symptoms for the better part of two years, and at the end of the month, I finally got my answer to all my medical questions—relapsing remitting multiple sclerosis.
I mostly expected the diagnosis, but it still completely upended my life and left me with a very uncertain future. I was medically retired five months later, and found myself unemployed in a small West Texas town where my then-husband was going through military training. I had to start giving myself injections once a week, and I didn’t know how my personal course of MS might progress.
VIDEO: SEE HOW SYLVIA COMBINED HER DISABILITY WITH HER PASSION FOR TRAVEL
Facing changes over time with multiple sclerosis
Each major stage of change related to my MS over the last 15 years has been challenging in different ways. For example, I had no trouble adjusting to needing a cane to walk, and it was actually a huge relief to start using a power wheelchair for improved mobility. However, I almost had a massive breakdown when I had to transition from a cane to a walker.
In my 36 year-old mind, walkers were for senior citizens, and psychologically I just wasn’t ready for that association.
Fast-forward a few years, and now my MS has shifted from the relapsing remitting form to the secondary progressive form.
This means that instead of relapses or exacerbations that occur every so often, my disease progression is a steady, but fortunately very slow, decline. It sounds bad, but for my lifestyle, it’s actually a good thing. This means that how the disease affects my body is much more predictable, and I don’t have to worry about a surprise flare-up happening while I’m on a trip out of the country.
In the past few years, I’ve had to make some major logistical changes and financial investments because of my increasing disability.
Four years ago, I knew I was losing the ability to take any steps at all and put my electric scooter in the trunk of my crossover SUV. I took advantage of a Veterans Administration vehicle grant, and was able to buy an accessible van with a ramp. I also had to move out of my rental and purchase a home so that I could renovate the bathroom to install a roll-in shower, again with a VA home modification grant.
Of course, these are major life changes. However, the small day-to-day adaptations are nothing to sneeze at.
Buttons and zippers have become too challenging for my clumsy fingers, so I’m relying more on more on clothing without these things. I’m currently able to transfer to and get in and out of bed without any help, but I’m always thinking down the road to when I might need some sort of railing or other physical support system.
Editor’s Note: Do you struggle with zippers too?
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the importance of self-care for those living with chronic disease
Speaking of thinking down the road, that is one of the most difficult challenges of living with a chronic disease like MS. I really have no idea what condition my body will be in five years or ten years or twenty years down the road. I know eventually I will have to transfer into an assisted living facility, but who knows when that will be?
For me, I find it hard to make any sort of long-term plans more than a couple of years in the future because I don’t know what I will physically or mentally be capable of doing.
Right now, I’m just trying to get better at self-care. I’m very low-maintenance and I am always on the go, spending more time on the road as an accessible travel writer than I do at home.
Because of my MS, I learned the hard way that when I travel, I have to make sure I get enough sleep and that I don’t overdo any activity. I can’t be independent in a foreign hotel room if my arms or legs are too weak to transfer to the toilet or into the bed. I have to remind myself to stop and eat something that will give me much-needed energy.
At home, I have to remember to make the time for little luxuries like exfoliating my face or moisturizing my feet. I’m starting to take more vitamins to help my MS symptoms, and I’m stretching more.
Being at home constantly is a strange thing for me, so my body isn’t moving nearly as much as it would be if I were traveling full-time. I have to adapt to increasing stiffness and less blood circulation in my legs. I have to make the effort to go outside and just take a roll around my block to get some sunshine and fresh air.
how has the coronavirus impacted sylvia’s day to day?
Psychologically, the self-isolation of coronavirus is no joke. I love living and being alone, but the current situation has really taken it to an extreme. Even when I travel by myself, I’m eventually surrounded every day by tons of people in cities or museums or parks. Even if I’m not talking to anyone, just being around other humans is the norm. Even an introverted extrovert like me has to adjust to making some contacts, even if it’s only virtual.
That being said, all of the adjustments I’ve had to make in my life because of MS have made me very well suited to deal with life changes resulting from a pandemic. I’ve had no problem with staying at home to take care of my health.
I’ve had grocery and food deliveries for almost five years. I’ve been using teleconferencing software and FaceTime and Skype for over a decade. I’ve also been afraid of germs my whole life, so my house was already stocked with masks, gloves, and disinfectants.
Having a chronic illness like MS isn’t easy, but you learn to adjust on a regular basis because the only other choice is to give up, curl up into a ball, and be miserable.
I’m happy that these continuous adjustments have made me much more flexible and psychologically ready to adapt to unrelated life challenges, and hopefully my personal experience with this can help other people adjust more easily to their challenges as well.
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