Life has a way of taking us on unexpected journeys, often to places for which we are unprepared. My unplanned journey began in 1979. Happily married for 10 years, my husband, Dave, and I had a five-year-old daughter and three-year-old son. We owned a house in a kid-friendly neighborhood in Madison, Wisconsin, and I worked part-time as a teacher of the Deaf for the public school system. A recent medical checkup declared I was in excellent health. I remember driving to work the next day thinking, how lucky I was to have such a perfect life.
Then, a few weeks later, I began to experience some minor, but annoying complaints: I couldn’t run as fast as I used to. My fingerspelling ability had slowed. And, I had an odd tingling sensation up and down my spine when I bent my neck forward. I consulted an orthopedist who suggested I see a neurologist. I didn’t think too much of it. After all, I was a busy, working mother with two young children. Who wouldn’t have complaints of one kind or another?
Little did I know that 45 minutes after entering the neurologist’s office, my perfect world would disappear forever. The doctor suspected that I had either multiple sclerosis (MS) or a brain tumor. I was 32 years old.
When the brain tumor was ruled out, I was left with the diagnosis “possible MS.” (Back then, there were no definitive tests for MS like there are today.) In the weeks following my diagnosis, I tried to act as though nothing had changed. (It’s called denial.) But in reality, life as I knew it was gone.
As the years passed, I experienced increasing disability on a daily basis and my diagnosis was changed to Primary Progressive MS. Today, I’m severely disabled. I’m unable to stand up and need help with nearly all activities of daily living. However, I lead a remarkably happy and unlimited life. How can I say that? I’ll try to explain.
First, when someone has a loss in their life, whether it’s health-related, financial, a death, divorce, etc., you mourn that loss. No one can tell you how long that grieving process will take. It took me years to grieve the losses I was experiencing. Every day there was a new loss, a new challenge. One example: I grieved when I could no longer walk the kids to school, when I couldn’t walk from one end of the house to the other, from one room to another. I grieved when I could no longer walk a step, and I grieved “big time” when I couldn’t even stand up. My chronic, progressively disabling, illness was a nightmare that had no end.
We all have a choice “when bad things happen.” We can choose to stay rooted in the past and what has been lost, or we can choose to move forward toward the light of a new future and new possibilities. I made the decision to move forward. It wasn’t always easy, and I must admit that I’m still “a work in progress.” And, because I use a three-wheeled Amigo® scooter, my limitations are obvious. It’s much more difficult when your challenges are “hidden;” people think, (or forget) “everything is fine.”
Today, I believe I am making a difference by teaching again, only my classroom is different/bigger. I write and speak about my journey, focusing on loss, resilience, and putting one’s life back together after everything falls apart.
If you’re reading this, you know that most people don’t think about what it takes to complete “simple” everyday tasks like, getting dressed, making a meal, going grocery shopping, doing household chores, etc. I’ve learned that life with chronic health issues is often a “Cost – Benefit” decision to just about everything we do. (If we do too much… If we don’t listen to our bodies…)
In my blog “The Thriver’s Guide to an Accessible World,” I’ll use my personal experiences and professional training to provide tips and solutions that will save you time and money, and conserve your energy. And, you’ll learn things like; how you adapt your home for easier mobility, how to simplify your morning routine, how to stay connected with your friends and family, and so much more.
I believe that having a positive, CAN-DO attitude, allows us to take back some of the control that chronic health issues has taken away and it reinforces how strong and resilient we really are.
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