Guest post by: Dale Allen Berg
For 20 years, I endured a host of odd, unexplained symptoms. Starting at 15 years old, I saw doctors and specialists across Western Canada and had every test imaginable, only to be left with no answers.
It wasn’t until I experienced optic neuritis – TWICE – that my ophthalmologist showed great concern and immediately referred me to a neurologist. Even then, the neurologist was reluctant to officially diagnosis me with MS.
One morning in January 2019, I woke up and my entire leg was tingling and numb. I shrugged it off thinking it would go away with movement and activity. To my surprise, by the end of the day nothing had changed and by the end of the week, that was still the case. A month later, I saw my neurologist again. He ordered me another MRI and this time enough conclusive evidence was revealed to give an official diagnosis – I had MS.
Since experiencing those definitive initial symptoms, I haven’t come up against anything quite so drastic or severe. Currently, my most noticeable symptoms are extreme fatigue (although being a stay-at-home dad to my four special needs children under the age of 7 contributes to that), loss of strength and muscle, ataxia (I drop everything), and memory loss.
Dropping everything is so frustrating and embarrassing. I don’t fully understand why it’s happening, other than a combination of mixed signals with my nerves. The memory loss makes me sad – at least I think it does… I can’t remember.
To manage these symptoms, I have found a variety of things that work for my body and help me maintain some form of normalcy. My biggest secret is that I take between 4-5 grams of Taurine every day. I discovered that this organic compound makes me feel great and helps me get through my day. I also developed a workout regimen 3-4 times a week that helps with my coordination and muscle weakness.
Just Another Log
As for obstacles in my life, MS seems quite insignificant. Unfortunately, I have had to push my diagnosis aside so I could attend to much bigger and more urgent issues or “obstacles” in my life. I haven’t led an easy life, and so the MS diagnosis was just another log on the fire, so to speak.
In 2019, the local newspaper and online media here in Kelowna ran a front-page story about me. I had just won the “Canadian Dad Blogger of the Year” award after receiving my kids’ diagnoses’ and my own, and I think it was through that story that a lot of people I know found out I had MS. Even now, I’m sure many people in my life still don’t know I have MS—I hide it well.
I think people are more interested, concerned, or aware of my kids than they are of me. And that’s ok by me – after all, isn’t that what parenthood is? That’s what I meant about pushing my own diagnosis aside. In 2018, both of my twins, Madison and Ethan, were diagnosed with autism. In 2019, Madison was further diagnosed with Rett Syndrome, a very rare neurodevelopmental disorder which was devastating. Then my oldest, Liam, was diagnosed with Asperger’s and my wife began struggling with deep depression.
Rebuilding/The Last Flashing Heart
In an instant, every dream I ever had died. I gave up my teaching job and event business to be a full-time stay-at-home dad while my wife went back to work. Every detail of my life changed, and I’ve been trying to rebuild ever since. I’ve had to dream new dreams; cling to a new type of hope and pursue a different form of happiness. Mixed in there, once everyone is asleep late at night, I shed my own tears as I struggle with my diagnosis that’s been pushed aside and ignored all day.
It’s impossible for anyone to empathize, and difficult for most to understand what it’s like or what I go through every day. It’s isolating, and I often feel very lonely. The way I see my days are like this: viewing each day like a video game with those five little hearts of “life” in the top corner of your screen. As you encounter obstacles, you might lose a heart as your character gets weaker. For me, I don’t remember the last time all five of my little hearts were full and intact. I wake up most mornings and my last little heart is already flashing, warning me that I’m in trouble. The combination of obstacles and my diagnosis leaves me struggling as soon as I open my eyes to start my day.
I’d like other dads living with MS to know that just because we might be on our last leg, it doesn’t mean we have nothing left. I’ve watched people play video games and that last little heart is flashing, and they have come back to win! In life, it’s no different. We can feel down and out, but the game isn’t over yet. Being strong mentally has allowed me to overcome much of the physical weakness overtaking my body. Try not to focus on the past – the “would have, could have, should have” mindset because you can’t change the past. Also, try not to focus too much on the future. Make plans, but don’t get too caught up in attempting to predict or alter the future. If the last two years has taught us anything, it should be that everything can change in an instant.
Focus on the present, live in the moment, and make the best of today. Take time to laugh and spend as much time as you can with your children and family. That will be the most meaningful thing you do and will propel you into tomorrow. It’s what keeps me going while savouring the moments of joy and happiness amidst the struggle.