Hypervigilance: A unique side to Disability

G’day friends welcome to another week, another post, and another week closer to Christmas!

There are many things that you will be told about when you are first diagnosed with a disability or with Muscular Dystrophy for that matter. In my case, I was told ‘You will end up not being able to walk’, ‘you may not be able to have children naturally’, ‘you will keep getting weaker’, ‘your lung function will get worse’, ‘It will get worse not better’, ‘sorry, no treatments are available’. Pretty gloomy.

The one thing they didn’t tell me, though, which I figured out myself, is that you end up with a pretty wild case of hypervigilance and perhaps a fear of death itself. Yeah, pretty heavy, right?

When you are disabled, or for me at least, it’s like you have a heightened sense of danger. You feel completely vulnerable and never completely safe. When you have a condition that robs you of the ability to run, jump, climb, or anything that requires brute strength, and you feel like you are going to fall over any minute, you suddenly feel trapped inside your own body and, therefore, trapped in society.

You are constantly watching every corner, every person, every door, every car, every pothole, and even every tide and watching for threats and looking for an escape route to be slightly more at ease in your surroundings.

For me there are several things I struggle with that may be stupid to most people. I have had experiences where a single quick movement from someone in a theatre will make me think they are about to shoot up the place or cause havoc, and I will be in a cold sweat of fear. Unable to physically get myself to safety because of my disability.

Whenever I am near the ocean particularly, I struggle constantly worrying about Tsunamis. To the point where the last holiday I went on, I would check marine warnings every five or so minutes, and at night time I could barely sleep because I couldn’t see the ocean. I had to be watching the sea constantly, and even then, I couldn’t calm down. I felt if I calmed down and didn’t worry about the ocean, I would jinx it completely.

Now I am back there again! I am heading away on a little Mother-Daughter girl’s trip on Monday for a few days. The only places I could find that didn’t break the bank and were wheelchair accessible near where we wanted to go were right across the road from the ocean.

When I booked it, I was so excited. A time to recharge before a busy festive season and a new year that holds significant potential, and a time to reflect and heal from the struggles of the year.

A few days after I booked it, those pesky little voices started, and I had pictures of Tsunamis and me not making it home. I struggled to figure out what voices in my head were anxiety and fear and what, if any, were gut feelings or voices that may be telling the truth. And so, for the past week or so, I have been struggling to separate the mind-body connection, and my body has been stuck in a heightened state of feeling vulnerable, unsafe and hypervigilant.

It got to the point I considered changing the reservation to Mum’s name and her going with my brother or her and Dad for a nice little trip.

You may be wondering why a fear of death or a fear of Tsunami in particular. There are a few things for me. I was involved when I was little in a Tsunami warning. It was scary being stuck in a building right on the waterline for hours, watching the ocean waiting for something to pop up, and all the while, TV outlets showed footage from the horrible Boxing Day Tsunami. And two, like I said earlier in this blog, being disabled you quickly feel like you are an easy target for something to happen to. You feel as though when it comes to it, you won’t be able to protect yourself and are a sitting duck because you aren’t strong enough to run or scale something if needed. That is a very scary place to be in mentally.

But with anxiety and fear comes avoidance. I was that prepared (and still slightly am) to pack in this getaway as then I know that I am safer where I am at home. However, what good does avoidance do? It keeps you stuck and missing out on potentially some incredible life experiences.

What would I miss out on if I allowed my fear and anxiety of ‘worst case scenario’ to hijack me? I would miss out on a fun getaway and a chance to just take a minute to reflect and plan for the new year. I would miss out on late nights by the pool with a glass of wine, good food, reading my book in the sun, learning the lessons that I believe come from any new or daunting experience, but perhaps most of all, spending quality time with my beautiful mother.

I am big into tarot card readings. When I did my reading last week, one of the cards was the death card. If you have never done a tarot reading before, the death card symbolises absolute endings and new beginnings. Something in you, or an experience or event, has to be put to bed for brand-new beginnings in your life to occur.

I know that my hypervigilance is a protection tool by my brain to look out for danger constantly. But I have done some pretty dangerous things these past few years, like riding horses and cruising in open water!

I am trying to find the hidden lessons in every season I am in, and every experience that I have.

I am going to actively choose to lean into this getaway and my anxiety, and yes even though I will forever feel more vulnerable because of my disability, I can’t keep letting that fear of the negative ‘what if’ control my life.

What are the positive what ifs? What if I have the best holiday every, what if I come home refreshed and excited to tackle the New Year with new inspiration and ideas for the blog and my business? What if I find new and amazing cafes, and incredible little restaurants? The feeling of freedom just to be able to take my scooter and go for a drive along the esplanade? The feeling of being able to put myself back together again?

I will miss out on all of that if I don’t find the courage and do it anyway despite the anxiety and fear.

My disability has taken so much from me and experiences I know I will never be able to have because I can’t physically get somewhere; why do I want it to try and rob me of something I can do?

When I look to the next twelve months, I have the strongest gut feel that everything will be okay and that everything planned will be amazing. But to get there, I have to leave a part of me behind. The parts of me that is broken, worried, scared, doubtful, anxious, defeatist, and perhaps scared of what my disability will bring.

All these things can’t serve me going forward in the next 12 months. I am choosing to believe that the death card I pulled was because in order to step into the next phase of my journey, all the things holding me back have to be dealt with. Whether that means writing everything I am scared of and holding it back on a piece of paper and burning it on the sand next week, journaling about it, or Praying about it. Whatever it is, perhaps this holiday is to truly get a grip on my fears and anxiety and prove to myself that I can do things even if it is uncertain, even if my anxiety tries to stop me.

My hypervigilence will be something that will probably stay with me forever. But I am determined not to keep letting it control my life.

Till next week,


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