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The Path of Living Goes Only One Way

By Cherie C Binns
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For several years now, I have been presenting programs for MS Focus: the Multiple Sclerosis Foundation and other not for profit agencies that advocate for those of us living with multiple sclerosis. My story is not unique, but it is profound. After nearly 20 years with symptoms of MS, I was diagnosed about the same time as the first medication to treat it came on the market. I, however, was not given that medication because of the length of time since the onset of my symptoms. It had only been tested in younger people who were relatively new to MS. By the time I was offered treatment, I was scooter dependent and legally blind. My new neurologist at the time told me that the medication he was prescribing was not recommended for people with the severity of symptoms I had, but he felt he owed it to me to try and protect the function I still had.

During the next couple of years, I worked closely with my doctor to better manage my symptoms and improve my strength. We changed medications a couple of times and got better results by doing so. I started exercising regularly and became more comfortable and less fatigued and depressed. And I was able to retire the scooter and ultimately to drive again as vision and walking improved.

When I tell this story at programs where I speak, there are always individuals in the audience who ask what medication turned things around for me. I do not often answer that question directly because medications work differently for different individuals. Our tolerance for side effects varies from person to person. What is important was that I went on medication and changed it with the guidance of my neurologist as the manifestations of my MS changed. With my MS better managed, I was able to do more and as I did more, I became less dependent upon ambulatory aids and symptom management medications.

A few years into this improvement, I had a little fall that resulted in a catastrophic foot injury that took more than a year to really begin to heal properly and I ended up back on crutches and in a scooter for a couple of years. I let discouragement take root. It felt like I had accomplished so much and overcome great odds only to end up more dependent upon others and equipment than I was ready or willing to admit. I started to slip back into inactivity and even depression.

During some serious soul searching while all of this was taking place, I started journaling and consciously meditating to try and relax and manage the heavy, dark feelings that were once again part of my daily existence. Out of one of these sessions with myself, I came to a realization. I could not go back to where I had been before. Just as we grow from childhood to adulthood and cannot return to our younger days, we also cannot go back to an earlier time in our lives as a result of improved health and fitness. This time – today – is here now and will never return. What I do with today is what makes a difference now.

I can make a conscious decision to put only healthy food and beverage into my body and to make it a point to purposely move throughout each day or I can let the day just happen. When I make the decision to eat well and move more, my mood is better and I have more energy. When I decide to “take a break” one day generally leads to another and yet another till I realize I am achy and exhausted. It really is up to me to make my days more manageable, enjoyable, and full. No one and nothing else besides a conscious decision by me to do what I know needs to be done can help.

My husband can remind me what I have told him my goals are but nobody can set those goals and put them into place but me. We can both keep up on what is new in the world of treatment and movement but unless I decide to do something to help me to feel and function better, nothing good happens. No one can do this but me. It was so freeing to realize that I could not go back but only forward and I encourage each of you reading this to try to make a simple plan to do a bit more today than you did yesterday and when you are ready add to that so that you can look back in a month or a year and see how far you have gone along this One Way path of living, truly living, with a chronic illness. Carpe diem!