What Would an MS Do-Over Look Like?

A friend once jokingly told me that I deserved a do-over in my life. I have lived with multiple sclerosis (MS) for almost 40 years now. At this point, I am living with naSPMS (non-active secondary-progressive multiple sclerosis). Diagnosed in 1986, I have had my journey through relapsing-remitting MS, when I was still ambulatory, to now, when I have lost most function, including ambulation, and have a speech impediment.

Much of my life now takes place in a power wheelchair, and I’m dependent on someone else for cooking meals and getting me in and out of the shower three times a week. My life partner has become my caregiver. Life happens every day at its own pace.

Throughout all of my time with disability, I continue to notice the strong correlation between emotional and physical health. A good example is when I disagree with my care partner.

This is always hard to explain, but I’ll try: David, my care partner, is a man, a sensitive one at that. However, I find his primary mission is just to get the job done. This would include getting me into the wheelchair — and not letting me take my time to accomplish the same task. He just cuts through what I go through psychologically, which is to engage in positive self-talk, making sure my circumstances are to my specifications, etc., and attends to the practical or physical task at hand.

But what if I didn’t have to do any of this mental preparation?

Having Social Support and a Mentor Would Have Helped

I started doing my hypothetical timeline. I will explain that as I go along but first: Was I diagnosed with MS so early that certain types of help or support were not available to me? Or did I simply not know to ask?

For example, the MS Society should have encouraged support groups when I was diagnosed, so members of the broader MS population could have had resources to help them understand the implications of chronic illness and the need for subsequent life planning.

When I was diagnosed, I was 20 years old and had no foresight. In hindsight, I would have thrived under a mentorship. Had a guide or a mentor existed, I might have had a better understanding of my situation and how it was likely to progress over time.

Now back to the timeline I mentioned.

In hindsight, I endured approximately 25 years of relapsing-remitting multiple sclerosis (RRMS) — years that were lost to my floundering around trying to find direction. If I had had the guidance of a mentor, or some counseling, it would have helped calm my fears about the future and maybe helped me make better choices in the present. If I had been able to meet others like myself, I would not have felt isolated like I did.

If Only I’d Been Able to Make a Plan

The more I think about it, MS is numbers game. I had 25 years to make a plan. Disability was fast approaching. I could have received career counseling and used those 25 years, when I was able, to secure a good job. This would have provided me income and reduced my dependence on the government. This way, I could have invested in property with accommodations for long-term disability. I could have planned for what awaited me.

There were no medical surprises with my MS. Starting in 2012, I became disabled, without any real plans. My care partner took matters into his hands after I completed graduate school. I received a master’s degree in occupational therapy, but I had no real plan for how to use it; I was on autopilot, just doing what I could.

No one was there to tell me to save my energy, because what I thought I was seeking was an illusion. Occupational therapy made some sense as a possible career choice, but it was too taxing; studying to get my diploma certainly was.

Had I had someone to counsel me, I might have been able to counsel others like me later on, after I felt stronger in my situation.

Times Were Different When I Was Diagnosed

Looking back now, ideally I would have “landed” in a job situation that provided security at the peak of my life, learning the entire time what I needed to move along with a continuously changing?landscape.

Instead, what I did during those 25 years was grow up as a 20-year-old, trying to emulate my peers without a sense of what I needed to do for myself. That is a fairly common story, I know, but I had more on my plate than some of my peers. I dealt with “young” issues while even more profound issues lay in front of me.

To this day I wonder if I was diagnosed too early. MRI technology was still in its early years in 1986 and was not what it is today. Besides the technology, as a society, we didn’t have a clue as to how to approach multiple sclerosis.

So my imagined do-over would have taken much more doing than was even possible in that era, but at least I would have had more of a plan for my life.