A Lifetime Story with MS
Last updated: November 2021
Yes, we all have a story to tell or write. I’ve done both and I want to share my story.
I lived a long life with MS. A few days ago, I came across the following post on social media. The guy was asking for some kind of inspiration-- anything to lift him up.
“Hey, MS people! I am sitting in my office mid-day and I just thought to myself that I'd like to hear something inspirational from people going through what I'm going through. And I guess by that I mean, if finding out you have multiple sclerosis SOMEHOW positively affected your life, can you tell me how? What have you gained? Quit your horrible job? Learned something new? Has it inspired you to do anything you wouldn't have done before?”
I jumped on it—it didn’t take long to write a response. I wanted to give this guy some hope.
“My MS was very aggressive in the beginning, and I had to leave my high-earning job and career. Turns out, I ended up happier and learned how to live with a lot less money. I didn't have to live in the corporate world which didn't align with my core values, and I became an at-home mom and volunteer. Less stress and better health, while being surrounded by wonderful, empathetic people. There is a silver lining in every dark cloud!”
I got a bunch of “likes”, and the O.P. was grateful. “There IS light at the end of the tunnel”, he responded.
It made his day, and mine as well. And what I told him was the truth. That’s what I have always enjoyed—lifting others up. Helping others. Educating others. These are my core values, and this is who I am. With or without MS. In my seventh-grade class of 200 students. I was voted the “most helpful person”. When I lift people up, they lift me up.
A Long Life with MS
My background with MS began in 1980. I was a newly-married, 25-yr. old with a business degree. I was working in research and sales at a major bank in Pittsburgh. One day, I walked out of a sales presentation and noticed that when I got into my car, my left shoe was missing. It was lying in the parking lot twenty feet away. Other strange things were happening to me prior to this incident. Four years later, I got my MS diagnosis. As I was teaching my one-yr. old to walk, I was quickly losing my own ability to walk. My MS was aggressive for the first ten years and I was left with much residual damage. The world of ample MS information and DMT’s didn’t exist.
Fast forward. I have now lived with MS for 41 years and have been married for 43 yrs. My son is 38. During my early banking career, I started volunteering with the local office of the NMSS. This gave me a purpose in my life when later I had to go on SSDI and forfeit my professional career and a big salary. The NMSS and I progressed together ‘supporting’ each other. In 2001, I relocated to Glendale, AZ. I wanted a dry climate, accessibility, and my own swimming pool. I lived alone for four years while my husband remained in Pittsburgh until his retirement. My son went to ASU.
I kept moving forward, despite my advanced disabilities. I co-chaired our neighborhood block watch, as a way to meet others in my new home. I tutored kids Spanish, as a way to earn some needed bucks. And I expanded my volunteer activities in the MS community in numerous ways and events, evolving with social media as it had evolved. My husband took early retirement and we inherited an accessible RV.
I’ve now got a house filled with mementos and photos acquired from the 50 states and other countries that my husband and I traveled to. My luggage had included scooters, wheelchairs, walkers, canes, and catheters. The ‘students’ I educated were youngsters, strangers, fellow travelers, and all kinds of people dealing with MS. Looking good and happy in a scooter gave people of all ages courage in understanding that walking aids enabled.
Was it easy? Sometimes yes, and sometimes no. But there are always obstacles in life, right? My worn-out line is “Despite not having the use of my legs, I have a mouth and a brain.”
Sometimes people have asked me, “How do you do it?” Harvey MacKay* says it best: Mental toughness grows in the moments when you think you can’t go on, but you keep going anyway. Anyone can give up. But to hold it together when everyone else would understand if you fell apart—that’s true mental toughness.
How? You focus only on what you can control. You learn from your failures, but don’t dwell on them. You ask for advice, help, and feedback. Patience, boundaries, and self-care transcend. That’s how a person survives; they have grit and resilience. In my MS journey, I have found it impressive that so many MSers learn to develop this at some point in their own journey.
Focusing on what I can change rather than what I can’t change enabled me to go forward. I am a very busy person in a lot of different ways, but for me, being busy is good. It helps redirect the negatives of everyday life. The real driver, though, is having a purpose in life.
Purpose in Life
I love interacting with people. But I especially love interacting and helping others living with MS. There is always something new to learn, and it’s gratifying to be able to share my knowledge--helping others get down that tough MS road that I have already traveled.
Sharing is caring. This has been my main purpose in life since I was diagnosed. It gives me light on my darkest days. A reason to hop out of bed in the morning.
The Rest of My Story and Some Reality
If you are wondering—the answer is yes. I am almost completely independent despite the wheelchair; asking others for help, when necessary, keeps me independent. I’m active, drive, swim and thrive nine days out of ten. On that tenth day, I fall apart. Harvey’s mental toughness doesn’t hold up.
Today is that tenth day. My body is out of order. It’s been a Murphy’s-Law Day since I woke up. Some people I interacted with were not so nice. I folded, vented, and fell into my “sick-of-being-sick, tired-of-being-tired’ mode. Holed up alone in my bedroom, I yelled, cried, beat pillows, took the phone off the hook. The steam had to be released from the pressure cooker. I hurt. When there were no more tears to fall, I sipped on a brandy, and I transitioned from angry to sad to totally wiped out. My husband heard the brunt of it; he had been standing by with the brandy. Lucky for me, my husband is always there.
No one else will ever know about my meltdown. Who likes that? Right or wrong, that’s how I cope.
Tomorrow is another day, and I will continue on as if nothing was awry. When the phone rings, I will cheerfully answer that we are fine. Life is a roller coaster, just like it is for everyone.
If you ever reach out to ask me anything about myself and/or MS, I will certainly do my best to respond. And then listen.
*Harvey Mackay is the author of the New York Times best-seller “Swim With the Sharks Without Being Eaten Alive.” He can be reached through his website, harveymackay.com
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