Piecing together our plans for making a successful move

I’m now in a season of life when things that were once taken apart are getting put back together.

In my previous column, I explained that after 29 years of living in our house, my mom and I made a momentous decision to move into a multigenerational home with my sister and her family. As a consequence, the custom-made computer workstation in my room would be taken apart and moved into the new house.

I didn’t know how emotional I’d be when the day came to dismantle it. Even though I knew it’d be at least another five weeks before we moved into the new house, that day made the transition more final.

I felt that I’d lost a special connection. I’ve spent so much of the past 10 years sitting in front of this workstation, designed with my SMA in mind. It’s been my window to the world, where I communicated with friends, colleagues, and policymakers alike.

I haven’t only worked when I’ve sat in front of my computer station, yet I’m proud of the work I’ve produced — particularly the advocacy projects I’ve done for Medicaid programs like private duty nursing. I’ve had a lot of happiness and satisfaction at my computer workstation.

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Since we haven’t moved yet, I still have my desktop computer in my room. The monitor is attached to the wall while my keyboard, mouse, and soundbar have been placed on a big, bulky table, which was given to me to use until we move.

This setup isn’t ideal. The table sticks out far into the room, taking up a lot of space. This situation is similar to what I had before my beautiful workstation was built a decade ago.

I keep reminding myself that this arrangement is temporary and will end when we move, hopefully sometime in October. The workstation that I know and love will be waiting for me in the new house. In fact, it’s already been rebuilt! The nurse who made it has been generous enough to put it back together on location.

This same nurse has also been giving vital assistance to the contractors who are turning the rest of the garage into my new bachelor pad. I can’t thank him enough for all the times he’s gone over to the new house to help them after he’s done working with me for the day. It gives me hope that everything in my new living space will turn out all right.

Working through the moving complications

During the renovation, though, we’ve run into complications. I need my assistive-living technology to keep my independence. Our original plans to accommodate all of my assistive-living technology in the new environment fell apart, but little by little, we’re putting them back together. The new plans will allow me to keep all of the technology for assistive-living so that I can have my independence.

Here’s a good example. For 29 years in our current home, we’ve had two separate heating and air conditioning units. One unit controls the temperature on my side of the house, and the other unit controls my mom’s side. I control my unit with the Sensi app on my phone.

I usually keep the temperature in my current bachelor pad between 77 to 79 F. That warmth is necessary. I get cold easily because I don’t move my body around that much. The new house, however, has just one central heating and air conditioning system. I don’t want to lose my independent ability to set the temperature in my part of the house.

We’ve been thinking outside the box to find a solution. Installing another heating and air unit would require us to change the home’s exterior, and we don’t want to do that for personal reasons. We may have found a solution, however. I’ll write about it when I know for sure that it works.

The heating and air conditioning situation is just one of many problems we’ve been working through. There’s much to consider when anybody moves, but living with SMA multiplies the factors by a lot.

That doesn’t mean it can’t be done. I have faith that we’ll work through every problem successfully. I believe that not only will I have all of my assistive-living technology and independence in the new house, but even more so than I had before.

Don’t be discouraged when plans in your life fall apart. Something great or even better can miraculously come out of it. What a fantastic life lesson to help us all soar!

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.