I can’t do anything on my own, but I can accomplish much with others

I promise I’m not being negative or dramatic when I say I can’t do anything on my own, and I don’t lack confidence in myself, either. It’s just a fact that with my severe disability, I need help with literally everything. That isn’t a bad thing. It’s a truth that demands to be acknowledged and accepted by me and anyone else in my life.

Have you ever thought about it?

Take this column, for instance. Even if you’re not the creative type, tapping out a few hundred words on a touchscreen probably doesn’t sound physically challenging. With SMA, however, it requires the perfect setup that I can’t achieve without help.

Before a single letter appears on the page, I need someone to take my device off the charger, carry it to the table, open the door for me to follow, prop the device up, scoot it within easy reach, swing my joystick away, position my arms in front of me, and reposition my body periodically for maximum comfort and functionality. Anytime I need to leave the table, someone will have to reverse much of the process to put me back in position to drive my wheelchair, and then recreate the setup when I return.

I love writing, of course, but most people probably don’t realize the small, physical details that go into it, or that there wouldn’t be anything to read if I didn’t have someone to help me. And if that’s the level of assistance I require for that one, simple activity, try to imagine what might be needed for all the other parts of my day.

Recommended Reading

June 24, 2021 Columns by Ari Anderson

Asking for Help Takes You to New Highs, Not Lows

How do my clothes get changed when I can’t lift my arms? How do I take my SMA treatment when I can open neither the fridge nor the bottle? How do I leave the house without the ability to drive my van, pack up my medical equipment, and provide my own care? It’s well documented that I can’t breathe without medical intervention, but I can’t even press the buttons on the machines that clear my airway and inflate my lungs.

Everyone knows I’m not the one meeting those needs and more, but take the thought process further to consider who is and how much they’re actually doing for me.

In a column titled “Leaning on support networks doesn’t negate our independence,” I wrote that I was “as productive as a talking sack of potatoes” without help, but even potatoes start growing roots when they’re left unattended. They don’t even need to be watered! But leave a severely disabled person for too long, and all they’re likely to grow are infections and bed sores.

Disabled creator David Schneider shared in a recent Facebook post how his day unfolded when a caregiver didn’t show up to get him out of bed. At other times, he says he’s been stranded for days. Fortunately, he was able to call friends to help within a few hours this time. I wouldn’t be able to do the same in his position because I can’t reach or lift my phone without assistance.

I’ve never experienced the horror of being left in bed or without access to proper care, and that’s largely because, as my primary caregiver, my mom is present daily, ensuring my safety, well-being, and happiness at all times. My life depends on someone being with me 24/7.

Turning ‘I can’t’ into ‘we can’

I don’t highlight the many things I can’t do out of self-pity or to dismiss my accomplishments, but let’s face reality: Blinking and finger wiggling, two of my strongest physical abilities, aren’t exactly survival skills. Rather, I’m seeking to emphasize that there’s nothing wrong with interdependence — leaning on each other when we need a kind of strength we don’t possess.

It’s also worth noting that interdependence doesn’t replace independence. They coexist in unique ways. In my case, independence just doesn’t equate to physical ability, as we so often misunderstand it. Instead, it’s found in my attitude, intelligence, decision-making, and access to the tools, resources, and people that allow me to thrive.

This SMA Awareness Month, recognized every August, many stories will be shared about individuals living with SMA and their praiseworthy accomplishments and contributions to society. My challenge to you when you see these is to remember that our stories are made possible by the people — parents, families, friends, medical professionals, and communities — who got us out of bed this morning and empowered us to do more than a potato could ever dream of. Please see and celebrate them, too.

SMA isn’t a solo experience. It can’t be. But with people who love us by our side, it can — like so many things — be beautiful, fruitful, and fulfilling. It’s something we have to do together, and that’s just the way I think it should be.

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.