Planning for Tomorrow Is Worth the Effort Today

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by Sean Baumstark |

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It seems that the best time to plan ahead is always yesterday, or several hours ago. No matter how much thought or energy I put into planning ahead, it rarely seems sufficient. I suppose I should remember the alternative to not planning ahead at all; such a situation could easily be more difficult and frustrating.

I know certain types of people are disciplined and detailed in their planning, scheduling down to the minute and even identifying multiple contingency plans. Others are more carefree and spontaneous, often just going with the flow.

I recognize that both have value, but I’m guessing those personality types often clash with each other.

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Given the hardships my family has faced this year, I’m reminded how valuable it can be to plan ahead and get things in order while you still can. My brother’s injury was a complete accident that left him paralyzed from the waist down, and the passing of my mom’s husband surprised us all.

On one hand, I know I’m not immortal or immune to life-altering changes, yet I sometimes struggle with that reality.

The frequent hospital visits and medical procedures my brother has faced over the last year have reminded me how fragile life is. And the little bit of help I am giving my mom in navigating some end-of-life arrangements has reinforced the importance of planning ahead.

Both of these significant parts of life have also put the progressive reality of my Friedreich’s ataxia (FA) front and center for me lately. I seem to consider a dozen “what if” scenarios every week, just in relation to FA.

I know I can’t possibly plan for everything, but planning for some things will be helpful down the road. I often hear stories of how rare disease families have to plan differently and more carefully for tasks that many would label “small” or “simple.”

(Save for the simple pleasures of Starbucks’ Nitro Cold Brew or hearing Ford Parks’ laugh at the end of every “Once Upon a Gene” podcast episode, the word “simple” doesn’t get used much in the rare disease world.)

I’m reminded of an interview with author and patient advocate Ilana Jacqueline on the podcast I co-host. Ilana came on our show a few years ago, around the same time her book, “Surviving and Thriving with an Invisible Chronic Illness,” was published. She spoke with us about the importance of planning ahead regarding one’s health and medical care. Specifically, she recommended creating a binder that can easily be taken to doctors’ appointments and hospital visits, and documents the important aspects of her conditions that a new doctor may not be familiar with. Ilana’s binder has been vital to her care.

Although planning ahead can be time-consuming and emotionally draining, I haven’t heard of anyone regretting their preparation efforts. I’m sure those efforts are different for all of us, but I am certain that a little energy spent on planning ahead today can save significant energy tomorrow, or whenever life throws us a curveball.

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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.

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