To live our best life with MS, sometimes we have to ‘do it afraid’
How I'm finding peace amid my worries about this unpredictable disease
I’ve been afraid many times during my life, but I’ve almost always managed to get past the fear.
One fear I haven’t gotten past comes with being handed a newborn child for the first time. Every birth might as well be twins: One nurse should hand you your child while another hands you the bundle of fear that was brought into the world alongside them. It’s a little terrifying knowing that suddenly you’re responsible for a life other than your own. My wife and I have three kids and, surprisingly, that fear didn’t lessen with each new birth. I assume it goes away when they become responsible teenagers, and if not, then surely by the time they turn 18.
It may seem a little silly, but one way I dealt with fear in the past was to silently recite the Bene Gesserit litany against fear from Frank Herbert’s novel “Dune.” I found myself quoting it in my head before nearly every parachute drop in the Army, as well as during any other moments when I felt my life was in danger.
The litany reads:
“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
It actually works well for me in diminishing what I think of as routine fears, but it doesn’t seem to have the same effect on my worries about raising three young boys — or the fears that accompany a life with multiple sclerosis (MS).
I think that’s because my routine fears have an end in sight. For example, my fear of heights is lessened by repeating the litany because, at some point, I will be back on the ground. I recognize and acknowledge the fear, face it, let it pass, and take comfort that I’m still there despite having been afraid.
Learning to live with fear
With MS, we all hope for an end to the disease and its symptoms, but that end is not in sight yet. I recognize and acknowledge the fears that come with MS and face them every single day. But my worries about the unpredictable aspects of MS either don’t come to pass or are replaced with new worries. For me, it comes down to a fear of the unknown.
I struggled with that a lot in the first year or two after my diagnosis. I knew from experience that less fear, or greater resilience to fear, meant a better quality of life. So it was confusing and frustrating to me when my fears about the inconsistency of MS didn’t go away, even after I’d faced them.
It took me a while to realize that a little fear can be a good thing. Being afraid can show us what not to do as well as what we absolutely should do. We should all be living our best life in spite of our disease, and facing the fact that it can be scary at times helps us do exactly that. I don’t think you can have multiple sclerosis and not be afraid. I tried at the beginning and only hurt myself in the process.
In a column on the subject of fear, former MS News Today columnist Jenn Powell reminds us that while there’s room for panic and peace in our lives, only one can dominate. Having peace with multiple sclerosis doesn’t necessarily mean having no fear. It means facing your fears, but choosing to let the peace that comes with understanding emerge on top.
The missionary and writer Elisabeth Elliot said that sometimes the fear doesn’t go away and we have to choose to “do it afraid.” That’s a great quote for MS. The fear of an inconsistent disease never goes away, and having a life of peace often means choosing to do it — to live our best life — afraid.
I’m pretty sure that’s the very definition of bravery.
Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Merlene Cook
As always Benjamin, your comments ring true. The uncertainty of MS development through my 55 years has come with fear. Without it, I would have taken my life for granted. It is so true that we have to choose peace. Set the anxiousness to one side that day. Befriend the unknown ...get on with what we can control.
Benjamin Hofmeister
Hi Merlene and thank you for the comment. I really like your last sentence.
Befriend the unknown …get on with what we can control
Words to live by
Lisa Kandel
I used to be afraid of MS. I'm not afraid anymore. The joy of Jesus is in my heart. He takes my fears away. I know he is in control always. He is stronger than MS.
I pray for everyone with this disease to find Jesus and not be afraid.
Stay blessed!
Benjamin Hofmeister
Thank you Lisa! That means a lot.
Virginia Gill
Thank you for once again stating this so eloquently. As a widow, living alone with MS is one of the most challenging and frightening things I could have imagined happening to me.
Benjamin Hofmeister
I don't know about "eloquently", but thank you for reading Virginia.
Jeff Wilson
hey, I am in Southside, Alabama. I had the disease for 2 yrs before covid and learning new daily. I'm a Force Recon Marine with 24 yrs in. I would love to meet you one day. I don't have any friends with this god-awful disease but 1 and he is very limited in what he can do. He was wasting time with the doc at UAB that was supposed to be so sharp on MS. His life didn't improve so I got him to Cullman to my doc. Please contact me anytime we can pick each other's brains and be a support system for each other. I fortunately don't seem like I am in as bad of shape yet, but I am one of those that hurt 24 hrs a day. Please get in touch with me. Is the VA helping you?
Benjamin Hofmeister
Hi Jeff, I would love to connect.....even with a marine. I'll contact you as soon as I can.
Heidi
This article is everything. Exactly how I’ve been from the time I finally accepted I have this disease. Diagnosed November 2024.
Benjamin Hofmeister
Thanks for the comment Heidi!
Bess Coleman
Thanks Ben. I always enjoy your articles. You have a helpful outlook. This helps me!
Benjamin Hofmeister
Thank you for reading them Bess! It does my heart good to know they help.
Heather Bales
I was diagnosed in March 2020 (when the world shut down for the pandemic). I am normally not a “fearful person” but due to all the circumstances of uncertainty on all fronts- I felt trapped and paralyzed with fear. A good friend could hear it in my voice on the phone and told me to go outside and look at the trees and listen to the birds in my backyard. It was like a magical breath of new fortified air. Air in and fear out. (Those nature Zen commercials began soon after this). Calming down, I started reading my Bible and remember in Deuteronomy and Isaiah when it said that the Lord goes BEFORE you, He will not fail you or forsake you…. In my MS or the state of this world, Jesus is the only reliable source of peace.
Benjamin Hofmeister
Thank you so much for that comment Heather! I am literally sitting on my back deck watching birds as I write this. Someone once said that you reach a certain age and you start caring about the Affairs of birds, but now I'm starting to think that it's a certain point in your life that you reach. Maybe it's an emotional state where nature has a calming effect. All I know, is that I used to wear camouflage, jump out of planes, and live a high adrenaline lifestyle. Now I sit on the back deck and watch Birds.