Setting Hopeful, Encouraging Goals for 2023 and Beyond

Today I want to talk about something very special to my heart: setting goals; and not just for 2023, but also 2024 and 2025. Creating future goals excites me and gives me hope during life’s many storms. I hope you’ll get excited with me.

Have you ever worked on something that made you feel like a whole person? Regularly writing messages to encourage people is one ongoing project for me. But I also do other things to make me feel whole.

When I’m making multimedia presentations while doing advocacy work, I literally transform into a one-man audiovisual team. I not only write the script myself, but also create visuals and edit sound. To create visuals, I find free-use motionless graphics online and turn them into animations.

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In 2015, for example, I created a presentation titled “Muscle of Hope.” For the title, I took a still graphic of an arm showing the bicep and tricep muscles. With some ingenuity, I figured out how to make the arm move as if it were lifting invisible weights. As the title of the presentation was read, you could see the muscles flexing and relaxing for three or four seconds. I can’t tell you how much this enhanced the video’s message.

Again, I taught myself these AV skills.

Unfortunately, I’ve strayed away from doing multimedia presentations in recent years. The pandemic stopped me from going out in public to share my videos with people. All of the COVID-19 variants out there continue to keep me isolated indoors.

I did have an opportunity last year to virtually share a video of mine with some new doctors, but because of kidney stones, I was too sick to participate, even from home.

Although I missed that opportunity, I should take the idea of presenting online and run with it in 2023. I want to keep working on the projects that I love, and going virtual is the perfect avenue for me to get back in the game.

I have connections, so I’m pretty sure I could arrange at least three or four opportunities in the coming year for me to present to audiences virtually. At least that is the goal for next year. Then, after I present to audiences online, I can permanently leave the videos on a secure website.

I need to remember that online audiences are bigger, so I’ll have to improve my video-making skills even more. I will probably strive to be more subtle in my graphic and sound design, while still using powerful words.

New tech

What other goals do I have? In 2024 and 2025, I hope to make my power wheelchair even more high-tech. In the past, I’ve written about how I use bluetooth signals from my chair to control my phone, TV, lights, and other utilities. All of this has greatly improved my independence in the past three years.

Technology is constantly improving, which means my capabilities should increase along with it. It’s always been a dream of mine to drive my chair up and down a set of stairs. In the past, I tried to find wheelchairs that could do this, to no avail.

A few weeks ago, I decided to look again and found a power wheelchair called the Scewo BRO. The chair’s dynamics and engineering incredibly allow people to drive up and down stairs. While I’m not yet certain where the Scewo BRO is available, my search was a promising start.

In 2024, I will be eligible for Medicaid to pay for a new chair. Perhaps by then the Scewo BRO will be available in the U.S. If not, chances are that another wheelchair company may fill the gap.

Finally, my goal for 2025 is to drive into every room of my sister’s house — including the second floor. Obviously, that requires the ability to drive up stairs with ease.

Having long-term goals is like having a grand vision of things. It’s uplifting for those of us with rare diseases to possess such vision. Hopefully, reading about my goals has uplifted you so that you can see your own grand vision!

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.