For life

Some disabled people are born with their disability. Some are not and become disabled later in life due to an accident, illness, late onset genetic condition, or aging.

At each stage of my life, my disability has looked the same, but also different. While my physical condition has worsened, many things I have had to do to support my wellbeing have been the same throughout my entire life.

As I laid on my stomach today while the physical therapist casted me for what seems like my millionth set of orthotics, my mind started to wander. These types of appointments can trigger memories from many periods in my life. I have never had a time of my life where the medical world was not involved.

As we chatted the therapist said, “I bet you have had a lot of PT in your lifetime.”

That forced me down memory lane. Sometimes, a trip down memory lane can be an unwelcome adventure. Often, the medical memories bring up negative emotions and can affect me for the rest of the day.

Today, I also thought to myself, “This has been a long road. I am tired. I am weary.”

My husband’s voice talking to the physical therapist jolted me back into the present. As I listened to them talk, I could not help but to be grateful that I have such a loyal and caring partner who is with me every step of the way. There are many who must do it all alone. There are not enough words to express my gratitude for him.

As I made my way back into the house when I got home, another wave of gratitude washed over me. Yes, life has been tough, but it has also been beautiful.

It can be hard sometimes to not look at my disability as a life sentence. The days when I am painfully aware of every hardship it causes, feel like an imprisonment. Or the days I long to go for a walk in my backyard with ease but know I cannot, cause me to feel trapped and frozen inside a cube of negativity.

I recently saw a video of a neurosurgeon talking about how if we find ourselves stuck in neutral because of a traumatic event or an unending suffering, not able to move forward, the smallest effort can change that. If we can force ourselves to step outside of our pain during tough times, it can make all the difference and kick us back into gear. More than that, each time you can do that, it is a building block and makes it a little easier the next time. Suffering can and does produce endurance.

It can be true for anyone. I bet you can think of countless times you have pushed forward when it felt impossible. One foot in front of the other, not looking into the future, only living in the present moment. Often, that first step out of the overwhelm can be the hardest.

I write a lot about how I think about the past. Not always because I want to, but because of examples like at my appointment today. The nature of the beast.

When you have a “life sentence” of a progressive disability it also can be tempting to look too far ahead into the future. My elderly years in numbers seem far away, but in my physical reality, they are already here in many ways.

I am much more like a person well beyond my years than I am my peers, physically. When I am in places surrounded by people my age, that truth is magnified. No one wants to age faster than they have to.

My disability can feel like a life sentence. As with anyone, there are ups and downs in life. In the times that I can force myself to take that tiny step forward, it does change the direction of things.

I learned early on that if I wanted to live my life well, I must accept that every day there will be extreme physical hardship. Facing that each day, for my entire life, has been heavy. As a child, I did not know what to do with that reality. As an adult, I often do not either.

What I do know is, the days are long, and there are many chances to redeem it if it goes off the rails.

Just keep moving forward.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. She is the recipient of the Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.