ALS Awareness Month: Self Advocacy-Armoury Building for Mental Health


(That’s me on the ground in the header picture, back in the day. I am NOT in this fabulous Piano Guys video, though I’d love to be so talented)

ALS Warrior is a descriptor I see used quite often, and one I was unsure about when first diagnosed. An unfair battle, I thought, given that those with Lou Gehrig’s disease really have nothing to fight back with.

But I quickly realized that being an ALS Warrior is more than slaying the dragon, it is fighting to keep it at bay, to live fully, and to keep being myself despite the circumstances.

And the first thing I needed to protect was my mental health, because mental strength is a must to handle whatever ALS is throwing.

I don’t mention family and friends here, for a number of reasons. I view that part of my support network as much more than a weapon, they are more like-oh, I don’t know, the body armour perhaps?
Those who read this blog know exactly how important they are to me. And most folks typically don’t have a choice regarding families, not like you can hire a good one to stand in for you (too bad though, I think there’d be a market in that).

Keep in mind that these choices are, for the most part, highly personalized. Others will have different priorities and needs. The important thing is that each person with ALS should build their armoury based on what they need, and what is available. But don’t wait for someone else to do it-this is something I learned that nobody was going to, or could do, for me.

Having been treated for depression for 10 years, I’d gone off antidepressants about 7 years ago. I didn’t like the side effects, and the withdrawal was hard. I learned to use Cognitive Behavioural Therapy to deal with it, and really did not want to go back on meds.

But after living with the paralyzing fear of my diagnosis for a month, I realized I needed that help. Things sure have changed since I used Paxil-the drug I currently use has few side effects and none for me; I don’t feel as though I’m on anything, nor like I’m in a fog, or sedated, nothing, on the minimum dose. And, I use an anti-anxiety drug from time to time, especially in the beginning when panic attacks could suddenly render me a mass of nerves. This lessening of anxiety and depression enables me to see clearly, to function well.

Other coping strategies include hypnotherapy and meditation to centre myself, to help me live in the moment and be aware of what is happening now. This allows me to enjoy each day as it comes, and be grateful for the smallest things. Thankfulness is a powerful weapon against self-pity, which is easy to wallow in with ALS. And, I don’t judge anyone who does, nor does it mean that all of my days are full of goodness and light, I still have times when a major meltdown happens. I’ve learned to enjoy the blasting off of steam, knowing that I can right myself soon after.

A strong sense of spirituality can also bring a sense of peacefulness, and I wrote about my own journey here. The bonus for me is that my spiritual advisor serves quite effectively as my counsellor, so I don’t feel the need to see a psychologist or psychiatrist. This is not a diss on folks who do use one–a qualified, experienced medical professional can certainly be a very important tool.

Joining forces with other ALS Warriors has also been invaluable, both for moral and practical support. I read or participate in several online forums and Facebook groups, where information and tips on living with ALS are shared. And sometimes, I just need a place to express myself withoug worrying family and friends.
(I’ll have more about online support in a future post, because on-line support can often be lined with misinformation, pitfalls, and swindlers looking to wring cash from people desperate for a “miracle cure”.)

The old adage about worrying oneself sick comes to mind. The brain is a powerful thing, one which we don’t fully understand. I don’t believe that I can will myself healed, or that I can cure my ALS just by thinking really, really hard. But I sure can keep my mind from leading me down very dark paths, and I’m well armed for that part of this battle.

“That the birds of worry and care fly over your head, this you cannot change, but that they build nests in your hair, this you can prevent.”
– Chinese Proverb

And really, who wants hair full of birds’ nests?

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One thought on “ALS Awareness Month: Self Advocacy-Armoury Building for Mental Health

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  1. Powerful. I see now through your writing how my own husband endured for nearly five years. He had the mental strength to go into battle. Yes, he had meltdowns and flare ups but he was always able to right himself. Even on his last day, he showed his great strength. Thank you, Liz for highlighting this for me.

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