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Managing Fear in SMA

Last updated: February 2022

One of the topics I see covered a lot by parents of young people with SMA is the fear that they are experiencing.

As an adult with SMA, that fear is a feature of my life and I have had to work hard to manage the circumstances which lead to fear. But sometimes it’s also about finding the strategies to cope with the fear in circumstances where it is unavoidable.

The causes of my fear with SMA

Fear for someone living with SMA can come from many different places. They’re different for everyone, but I have a few common themes which run through my life which can lead to the fear swelling up.

Fear of being trapped

My biggest factor for fear is the possibility of being trapped. Not necessarily in small spaces, but alone with no means of getting help. If I can’t reach my phone or I’m not in the vicinity of a device with the capability of calling someone for help, I can feel stressed and anxious.

Very often this is easily avoidable by being with a personal assistant, family member, or trusted friend, or having technology in the room which I’m able to use.

Fear and anxiety of stairs

Another major source of fear and anxiety for me is stairs. They make me feel queasy, uneasy, and vulnerable. The steeper the stairs the worse I feel, especially at the top of them.

If an elevator neighbors the stairs, I will feel stressed at getting out of the elevator, often made worse by the fact most of these elevators are too small to turn in and so I’m forced to reverse without knowing exactly where the stairs are.

My university campus was built in such a way that I regularly had to go through a stairwell to get to lecture halls - when I would dart through as quickly as possible.

Medical fear

Another factor for me that is less controllable is medical fear. The unknowns are tough to deal with in my journey with SMA, and I’ve come through all of those eventually. But they are part of the parcel of life for me, experiencing uncomfortable and frightening medical emergencies.

Dealing with them and reminding myself I am ok is vital so I can do it again next time and use the experience to grow, plan and life can go on.

Different experiences can lead to these feelings

I often hear and see parents questioning why their child or young person has developed a fear. This is usually from a circumstance arising in which those who can use their legs feel normal and unthreatening.

Being stuck in a room with a door you can’t open can be absolutely terrifying, even though I know it might seem innocuous to most.

At the core of most of my fears is the possibility of losing my liberty and independence. If the pandemic has taught us anything, it is that the human race values their ability to be the person they want to be.

And so that leads me back to the conundrum I know many face as their young person grows up - why are they afraid of being alone?

For some, it might be at night, in bed in the darkness where independence and much of our movement can be stripped away. For others, it might be that they can’t move from room to room independently.

My answer to my own questions about why I am afraid has shifted as I have examined this in myself. I ask myself what can I do to deal with it? Because I am afraid for natural reasons. In fact, anyone would be afraid when they are unable to protect themselves.

My fear of flying insects

Or, in a famous SMA fear - it might be of harmless flying insects like butterflies or bumblebees.

I am a 31-year-old with SMA. I am totally cool with spiders and snakes. Put me in the same space with a butterfly and I am out of there! And yet, as a child, I was known to have my own little caterpillar gardens with lots of leaves for them to munch through and I was always so excited when they transformed into a chrysalis. But once the butterfly started to hatch out I was cowering in a corner.

My ability to protect myself from flying insects is non-existent. In fact, my only strategy is to close my eyes, seal off my nostrils with my top lip, and scream for help. I break out in a sweat and my heart rate leaps.

But this fear is a natural part of living with SMA. I can’t swat any insects away if they invade my space. I can’t necessarily reach my joystick to move my chair quickly enough out of their way. I’m utterly defenseless. Even from a harmless butterfly, I myself have nurtured into existence.

While many of my fears are motivated or heightened by having SMA, they are still natural. I remind myself that all of our fears serve a purpose. My fear is there to protect me from situations where I could be at risk, and it’s okay to feel it.

What can we do about fear?

In my experience, eradicating fear is not always possible. As human beings, fear is important and a valid experience. But we can prepare for it and work to ensure it has the least impact on us.

For me, in the past, that has meant addressing that I am ok, repetitively, in those situations that elicit fear. And reminding myself of that when things flare-up. I find this particularly useful for those things I cannot control, like medical fears.

Controlling what I can, and dealing with what I cannot by practicing strong healthy coping strategies is so important in addressing feelings of fear.

Building trust and structures into your life that allow you to feel safe after a frightening time helps us to process and heal from that when it has escalated. For me, that’s usually quiet time with family or a good movie. Find the right self-care for you.

It is about mitigating what you can. If being alone is frightening, having smart speakers or other technology which allows you to contact others can be a good way to combat that. Finding ways to feel safe can take time but it can be done for some of the things we might face.

Finally, don’t be afraid to reach out for help. Fear can negatively impact our mental health. Reaching out to a therapist, counselor, or someone you trust will help you to get back to yourself. Reaching out for help when I’ve needed it was always the right thing that lifted a weight off my shoulders.

For our community that could also mean talking to adults with SMA about the things your child might be experiencing and working with your child to address it so they feel safe and secure.

My biggest lesson though is simple - don’t be afraid of fear.

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