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 to remember the time before I had the disease.
I’ll be turning 60 in a few months, and lately, I’ve been reminiscing about my life and what I want the rest of it to look like. I don’t mind turning 60; aging has never bothered me. What gnaws at me are the things I haven’t done and the hopes and dreams I had as a younger woman that I haven’t fulfilled.
Life often has different plans for us.
Although I haven’t traveled the world, swam with dolphins, camped in national parks, or written a New York Times best-seller, I know my most important dream has been realized: I feel blessed to be a happy wife and mother.
You may say that I could still fulfill my dreams. After all, we see people with MS doing incredible things every day: scaling mountains, swimming oceans, and running marathons. These people seem to possess extraordinary powers, and we are in awe of their accomplishments.
I wish I could fulfill my dreams before it’s too late. However, these last few years have taken a physical and emotional toll on me. I’ve been hit on all sides with illness, loss, and grief; my life has felt so overwhelming that at times I didn’t know how to move on. As I begin to crawl out into the open, I wonder about my place in the world and what my next big step will be.
“Faith is taking the first step even when you don’t see the whole staircase.” –Martin Luther King, Jr.
As Dr. King said, I need to have faith; faith in myself and the universe. I need to walk the walk and not just talk the talk. I always say MS is not the total of who I am and that I won’t allow it to define me. So I’m going to devise a plan that will help me accomplish some goals with the abilities I still have.
Following are the ways I plan to achieve my goals:
Decide what they are: And work towards them. If I want to walk 5 km for charity, then I should start with more than my usual one mile a day. I hope my feet and legs will be cooperative.
Write them down: Writing things down makes them feel more real to me.
Tell someone: This will hold me accountable. For example, I’ve spoken before large crowds, but I’d like to become a regular paid speaker, perhaps an MS ambassador for a large company. I’ve always wanted to join Toastmasters to help me hone my speeches to sound more professional. Practice makes perfect. Now that I’ve told you I hope you will hold me accountable.
Break them down by size. Walking longer distances and getting back to yoga are smaller goals; learning how to scuba dive or traveling to Africa are larger. Each is achievable by setting milestones and taking baby steps forward.
Be honest about limitations: Being open about physical and financial constraints will help me to create a more pragmatic life plan. I can no longer walk, run, or ride a bike over long distances. Stairs and hills pose a problem, as do extreme temperatures. I need time to rest and have my dietary needs met.
Celebrate choices: Rejoice in my freedom to choose despite disability. I’d love to do much more, but I won’t dwell on what I can’t do, because that’s a waste of time. Instead, I’ll focus on what I can do and celebrate the journey because life is delicious.
MS is not the total of who I am, and it shouldn’t be for you either.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” –Elisabeth Kübler-Ross
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