I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Scrolling through Instagram recently, I was left teary-eyed and introspective when I happened upon one particular reel. It features an oft-used voice-over of a sweet older woman talking, set to pictures and videos of precious moments with children as we hear the following:
“I’ve reached the last years of my ‘I’ll be so glad when.’ I’ve wasted so much time on that. I’ll be so glad when they’re out of diapers. I’ll be so glad when they start school. I’ll be so glad when they’re out of school. I’ll be so glad when this, when that, when we can retire. If I could tell you one thing, and I’m not trying to be that old wise woman giving you advice, but if I could tell you one thing: Don’t postpone joy. Find your joy in what’s happening today, because that’s where it lies.”
That’s such an impactful perspective, and it reaches far beyond parenting. While it does make me reevaluate my tendency to pine for future child-development milestones and phases, it’s also helping me find and soak in joy in the present as a person with a progressively degenerative genetic neurological disease.
With Friedreich’s ataxia (FA), I tend to have one of two gut responses to making plans. One is, “I’ll wait to do that when there’s a cure so I can do it right and enjoy my experience.” The other is, “I won’t ever be able to do that because if I’m already this progressed, no way will it be possible in a few weeks, months, years, or more when I have the opportunity to try. I’ll be way too disabled then.” I never know which response I’ll have, but both lead to difficult manners of thinking.
I’ve realized that even though the two reactions, optimism and pessimism, are opposites, both are all-consuming, distracting, and emotional, and neither helps me find joy in what’s happening today.
I know that might seem like an extreme thought, and it might have you wondering, “How is being optimistic about a cure impeding your ability to find joy today?” Let me explain.
If I keep postponing things by waiting for that cure, no matter how dear that hope is, I’ll never experience anything, good or bad, for better or worse, today. I’ll be stuck on hold, waiting for the cure to rescue me from my potentially hard future. Additionally, it can make me resent living in my “cureless” present.
The reasons my pessimistic response impedes my ability to find joy today, meanwhile, are a little more obvious, such as the inevitable feelings of hopelessness, bitterness, and lack of motivation. Staying in this frame of mind makes all joy — future or present — seem insignificant and, frankly, impossible.
Instead of postponing joy by sitting and waiting, or because I’m bitter that a cure might not happen, I should focus my energy on enjoying today. So much in my life gives me joy, including the many wonderful experiences I’ve had in the past decade while I’ve been living with FA. Even if FA complicates my experiences or makes them look different or less spectacular than I’d hoped, that doesn’t guarantee that I’ll find greater satisfaction in postponing joy for a later and potentially FA-free date.
The future will happen one way or another, no matter what tizzies I work myself into or out of, so it’s simply better if I recognize pockets of joy today. Living with FA is punishing enough that I don’t need to punish myself more by passing up current opportunities for happiness, even if it’s a complicated, different, or hard-won happiness. As the cliché goes, “Today is a gift. That’s why it’s called the present.”
“Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” — 1 Thessalonians 5:16-18 (New Living Translation)
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