We got married in 1978, bought a house in 1980, and had our first child, a daughter, in April of 1982. We still loved the outdoors, and spent as much time as we could playing sports, camping, or just relaxing in the back yard. In 1984 we had our second child, a son, and life couldn’t have been more perfect.
That’s when our story really begins.
I was on a fishing trip with the guys shortly after my son was born, when I got the call. Barb was having trouble with her vision, and had gone to our ophthalmologist. His diagnosis: retro bulbar optic neuritis, a common indicator of Multiple Sclerosis. A week later, after a battery of tests, the diagnosis was conclusive.
Barb had multiple sclerosis.
It sounded sinister. Final. Neither of us knew much about the disease. But we learned quickly. MS affects about 450,000 people in the US, and about 2.5 million worldwide. It has no known cause; no standard progression; no firm prognosis. You never know what today – or tomorrow – will bring.
Barb started off with the most common form of the disease, relapsing/remitting MS. In this phase, the disease follows a course of attacking, then subsiding, with the patient recovering almost fully after every exacerbation. It could show itself in any number of ways, including, but not limited to extreme fatigue, muscle spasms, sight problems, weakness in the extremities, lack of control over the muscles, etc. The good news was that, almost every time, after a few days treatment with steroids, Barb would bounce back to her old self.
Life went on this way for about 15 years or so.
Some years were better than others, but we still hiked, played golf, camped, and did the things we loved as often as possible. Then, in a twist of fate, several things happened in a few months. Barb stopped bouncing back from her exacerbations. MS had reared its ugly head, and her disease turned more sinister. She now had the next stage of the disease, termed secondary progressive.
In the secondary progressive phase, instead of bouncing back to normal after an exacerbation, the person only recovers partial function. So they basically go into a steady decline. They may recover 85% after an episode, then 85% after the next one, and so on. It’s a steady downward progression. Barb has been in that stage for the past 6 years or so. She’s gone from an athlete to someone who hopes they can dress themselves in the morning.
Barb’s lost a lot of function. We no longer play ball, hike, golf, or do anything requiring legs. But we still enjoy the outdoors.
And we still enjoy each other.
And she is still my idol.
She refuses to let her medical condition control her life.
If she can’t walk, she uses a walker.
Or a scooter.
Or a wheelchair.
Or she just crawls.
But she NEVER QUITS.
Barb refuses to let MS control her life.
Hers is only one story. There are many such. Their point is that life goes on. Circumstances are circumstances. We all have trials. And we all choose how to respond. We’ve faced a lot of adversity, as most people do. Our only daughter was diagnosed with a much more aggressive form of MS just 4 years ago, when she was just 23.
Barb she still keeps moving. As does Amy. As do many people with MS. Life still goes on. There are a lot of heroes out there, but Barb will always be mine!
Do you have a story you’d like to share? Contact me.