Adjusting to a Slower Pace of Life With MS
Years ago, I went on vacation to Key West. Each night, I headed down to Mallory Square to celebrate the sunset, as was the custom. The palette of colors nature put on display as the sun disappeared on the horizon was beautiful beyond compare.
The street performers always stole some attention from the setting sun with acrobatics and various musicians. One performer in particular always got my attention; he spun several ceramic plates on the tips of poles held high in the air. He could not afford to let up on any given plate or they’d certainly shatter to the ground, silhouetted by the striking orange sunset.
I was something of a plate spinner myself prior to multiple sclerosis (MS). The random challenges of balancing my high-energy career while stepping up to family obligations and everyday occurrences kept me on perpetual high alert. I was always in control with just enough time to do laundry.
With MS, it seemed as if everything I was about took a nosedive. I could not keep up with the lifestyle and demands that came easily not six months before. Plates were falling uncontrollably to the ground all around me.
I went from 150 mph (literally my nickname for years) to a practical full-stop. No matter how hard I tried to keep everything going, ultimately, the spinning plates would fly out of control, smashing to bits. In many ways I gave up trying and succumbed to my illness.
I went from the balanced edge of living well, with a strong sense of place and self, to tumbling into an abyss of depression, isolation and alcohol abuse (when I do something, I sure go all the way). I became ambivalent and withdrawn, mourning the loss of the things that made me, me. Where I used to have so much to offer the world, now I felt as if I was erased off the map.
In the midst of this self-pity party, I learned the prevalence of depression in MS is high, even when compared with other chronic illnesses. I took a long hard look at the path I had been on and realized I had allowed both the symptoms of MS and the label of being “disabled” consume me.
Counseling, appropriate antidepressant medication, and a willingness to see my situation in a new light soon followed. I worked with my doctors and my husband to climb up out of the pit I was in. “This is not life ending, this is life altering” became my mantra.
I am in a much safer, more introspective place now. I look back at this tumultuous period with gentle reflection. I use it as a stepping-stone from which I am building and restructuring a lifestyle and mindset that fits with my MS.
The first deliberate step toward embracing this new life with MS was to take an inventory of where I was at, both physically and emotionally. I took a hard look at what I thought was vital to my existence and identity.
Clearing the Cobwebs
I cleaned house, both literally and figuratively. I did away with clutter, organized my closets and had heavy items, especially in the kitchen, moved to lower shelves. I made things I use every day, including my scooter (my main source of independence), easy to get to.
I even had furniture moved around to make our home less of an obstacle course. All these small changes were liberating.
Clearing the Cobwebs
I did not feel so overwhelmed by my own space or trapped among too many belongings. I could breathe, I could slow down.
It is remarkable what a catalyst cleaning house can be. I soon turned my attention to clearing outside activities and commitments. Back when I lost my career, I immediately volunteered for charities I could help from home and joined a few organizations.
Eager to live a normal life, I did not take into consideration how it would affect my body and mental state. I was making decisions for living with MS in the same way I approached life before MS.
I simply could not see the pattern that was destined to fail. Again, I had too many plates in the air.
Over time, I gently and humbly removed myself from far-stretched commitments. To my relief, they no longer gnawed at my conscience daily. I started to understand the concept of learning to live slowly, but deliberately.
I did not need, nor could I handle, a million plates in the air. Realizing I had nothing to prove to anyone, I brought my focus closer to home. Worrying less about the outside world and focusing more on what was directly in front of me helped me get a solid footing with daily activities.
I went to a quieter place within and did some soul searching. While focusing on taking care of my home and seeking solace in my little garden, I came to a realization: I’d always dreamed someday of giving up the rat race and living the life of an artist.
A New Path
Now, from a place of newly realized clarity, the artistic urges I had locked deep within started to bubble to the surface. I was excited about the idea of devoting myself to a new career in art.
Eager to be a part of things, I grabbed at too many opportunities and over-promised on what I could deliver. Again, I ended up with too many plates in the air. But this time, I caught myself in the act and slowed my pace as a result.
I knew I was on the right track. I was beginning to have an inner sense of place, a sense of endless possibility. I pressed on, but now considered how things would be affected when/if MS symptoms flared or I if had a string of low energy days.
I began turning down opportunities that had too tight a deadline. I didn’t sign on right away to projects until or unless I explained in advance to peers what my limitations might be. When I did engage, I explained to whomever needed to know that some days I may be tired, or seem a little off.
It is liberating to not worry about pleasing others. Now I know to set boundaries and I do all I can to not set false expectations. I enjoy what I do and I often laugh and shrug my shoulders at the things that go wrong because I’m no longer racing to get ahead. Striving to be perfect is no longer a consideration.
I can still be the person I have always been, albeit with slightly different outlook and a new set of tools. The difference is that I have an unpredictable and permanent disease I need to partner with now — like leading a dance with a partner who has no rhythm.
I am ever-adapting and embracing this slower pace of life. Whenever I get a bit overloaded, I think back to Key West and smile. I remember the powerful beauty, the pristine and perfect sunset outstretched to the heavens. Indeed, there is an entire world of possibility beyond the silhouette of all those little spinning plates.