Interpreting why dreams, like FA, are part of my life

When life gets overwhelming, my mind will often escape the reality before me, at least momentarily. I’m unsure if these brief internal retreats are daydreams, escapes, or the products of an overactive imagination; maybe all of them. But I’ll refer to this tendency as “dreaming” in this column.

To me, dreaming isn’t just a phenomenon that happens when we’re unconscious. I believe living with Friedriech’s ataxia (FA) may have exacerbated my love of dreams and my frequency of getting lost in them.

Still, regardless of FA, these flights of fancy are an indelible part of me.

A longtime dreamer

I’ve always been enraptured by the concept of dreaming, as shown in many columns I’ve written, such as “I Can Still Walk in My Dreams,” “Daydreaming and Other Ways of Coping,” “Reconciling with My Past, My Self, My Dream,” and “‘Requiem for a Dream‘: The Tragedy That Gives Me Hope.”

I wonder if dealing with FA has made me especially susceptible to dreaming and made me romanticize it more than most able-bodied people do. An old home movie proved I’ve been a dreamer since before my FA diagnosis.

I laughed at 2-year-old me as I talked to my dad behind the camera, asking him to make the sound of a horsey, then a little horsey, then a “little, tiny, tiny horsey.” I giggled after he complied, then fell silent as my eyes glazed over. I looked away from the camera, staring at nothing in particular.

My dad was apparently used to my aloofness since he immediately asked, “What you thinking about?” His words woke me from my daydream. I gave a high-pitched toddler yelp, my eyes regained focus, and I returned to the moment.

Some things never change, since even nowadays, a single word, glance, reference, or passing thought can cause me to check out of my current situation and get lost in my thoughts, which I’ve found mostly beneficial.

Dreaming as a coping mechanism

As I’ve written before, dreaming is an ideal way to cope with our dilemmas, especially when they overwhelm us. According to a StatPearls article on coping mechanisms, “Coping is defined as the thoughts and behaviors mobilized to manage internal and external stressful situations.”

Although managing stressful situations is generally helpful, I believe dreaming has been specifically essential for me.

I often prefer to dive into made-up worlds of what-ifs than face whatever real threat is in front of me. Since imagination is powerful enough to rewrite the past or foresee a potential future, if only briefly, dreaming can be useful when Friedriech’s ataxia gets overwhelming.

From when I was diagnosed at age 9 till now, I’ve imagined what I’ll do and how life will change once a cure is found. So when depression hits me, when an FA symptom progresses, for instance, or when I feel left out from the able-bodied world, I’m grateful that I can temporarily escape my hardships.

Dreaming as avoiding

Although dreaming as a temporary reprieve from life’s problems is therapeutic and good, it can yield negative consequences. Sadly, sometimes our dreams aren’t retreats from reality, but ways to avoid dealing with the circumstances around us.

Like everything in life, too much of a good thing is harmful. If we solely depend on dreaming or avoiding our problems, our world will be lonely, insular, and stunted.

As an avid dreamer, I’ll always long for the imaginative worlds of my dreams. But I also recognize that I can’t stay there. Sometimes I need to wake up.

Dreaming, then waking up

I believe my tendency to lose myself in these fictional scenarios helped me survive some of the roughest parts of my life with FA. For most of the 27 years since my diagnosis, there was no treatment for my disorder. My dreams were the only places I could feasibly find a treatment.

Even though some things never change, some do.

It’s not a cure, and only a small success by itself — a little victory, if you will — but this year, the first FA treatment, Skyclarys (omaveloxolone), was approved in the U.S. for patients age 16 and older. Suddenly, my untreatable disorder is treatable. And I’m not even dreaming.

The approval may be a significant step toward a cure. Now, my eyes are on vatiquinone (PTC-743) and nomlabofusp (CTI-1601), still in experimental stages.

It’s essential that we sometimes wake up and never entirely tune out reality. Sometimes, our reality is better than anything we could’ve dreamed. I believe that in the world of FA, we’re reaching that point.

Even as we remember to wake up, let’s never stop being dreamers.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.