Staying Organized Helps Me Simplify Life With SMA

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by Alyssa Silva |

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Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye” episodes I watch and self-help books I read, or the amount of inspiration I get from Marie Kondo, living with SMA will always be a little chaotic and out of sorts for me.

So much goes into managing my disease that even on my best day, I still have difficulty keeping up. However, I’m OK with that! Living with SMA keeps my life interesting, to say the least. In fact, it even brings a good story to the table.

Alas, because managing my disease requires so much time and energy, I do my best to simplify my life in other areas. Striking even just a semblance of a balance is important for my well-being, so I do this by establishing effective and efficient organizational systems.

Between juggling my long list of doctors’ appointments, procedures, jobs, chronic symptoms, and the everyday nuances of life, a lot is required of me on a daily basis. And the catch is that I want to be able to do it all without sacrificing my physical and mental health.

Of course, this isn’t always possible. The physical symptoms I face each day — GI issues, fatigue, brain fog, and more — don’t allow me the luxury of having it all. And that’s OK. It’s a reality of SMA I accepted long ago. But knowing that I have some control over how I want to show up each day and seize the moment on my terms is fuel for me to dream big. And I achieve this by staying organized.

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My entire life is neatly sorted in a digital database called Notion. I have every item I own alphabetized and sorted by room with its location written next to it. This comes in handy with my brain fog. I can’t begin to fathom the amount of time I’ve wasted looking for things because of how much I struggle with forgetfulness. Now, I simply type in what I’m looking for and can direct someone to the exact location to get it for me. Although seemingly insignificant, thanks to this organizational hack, I feel much less overwhelmed in life.

I also have a calendar filled with projects and deadlines for my jobs. I spend some time at the beginning of each month planning the calendar and figuring out what’s expected of me. By “dumping” my thoughts out, I can focus on my other needs, knowing that my calendar will hold me accountable. It also allows me to use my (finite) energy wisely knowing where my priorities need to be on any given day.

Lastly, I use Google Calendar to keep up with my many appointments, work meetings, and caregivers’ schedules. Using a general calendar is self-explanatory, but it has made a tremendous difference in my ability to stay organized.

I can’t say I’ve always been this way. I’ve developed these habits only in the last few years, but I’ve found that they allow me to be more honest with myself and my limits when I’m able to see everything in front of me. For example, I can accomplish more when I strategically have my days planned versus spontaneously doing tasks I randomly think of in the moment. This allows me to pace myself over time. I can save time and energy when I’m looking for something (I would always lose my iPhone charger) and easily manage my schedules and appointments. The list goes on.

Of course, while these systems work and have proven to be beneficial, I’m not this organized every day. No matter how hard I try, life will happen. I will have bad health days and will need to honor them by being gentle with myself. I will become overwhelmed. I will have days when I want to do absolutely nothing but watch Netflix.

But having order brings simplicity to my life, something that SMA wouldn’t give me otherwise. It strikes a balance that I so desperately crave and gives me a little more control of my days. Maybe I can’t do it all, but with my organizational systems in place, I can still give it my all.


Note: SMA News Today 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 other 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 SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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