Challenges most people will luckily never need to deal with.
I talk a lot about resilience, what I don't share too much is the cost of that resilience.
Early on, before the diagnosis, while I was dealing with symptoms, I was scared. I was scared that I'd have to give up driving. Give up riding motorcycles. Give up running.
Those are the cost of double vision. How can you drive when you see two cars coming at you, one in your lane and one in the opposite lane, and the only way to tell which is real is by closing one eye.
Yes, it eventually went away. Yes, I did figure out a trick to help on my own, but they came at a cost.
One trick, closing one eye, great, but then you lose all depth perception.
The other trick, placing a very small sticker in the middle of one lens on my glasses. This created enough distraction on my brain that it blocked the double vision and still left some depth perception.
Did you know when your brain is trying to process twice the information as normal it shuts down? Not what you need when driving, riding a motorcycle, or running out on the road.
Another thing I haven't shared too much about. Back in the middle of September, I woke up one day, took a step, felt a sharp pain in my foot and fell.
The muscle spasticity in my right foot was causing it to curl in on itself. The pain made it challenging to walk.
I spent every morning for weeks doing exercises from my doctor to help stretch the foot back out and make it so I could walk again (without too much pain.)
During those two weeks, I couldn't drive. I missed an in-person meeting for work I was supposed to attend. Sure, I could drive short distances, but 10 hours in one day, no chance.
And my presentation on that meeting, not great, I was in pain, I struggled, it was hard to connect with the room remotely when they were all together.
Add this on top of the 2 months I spent pre diagnosis with vision issues, brain swelling, memory, an inability to concentrate, you can imagine what work was thinking.
I spent 5 out of my first 6 months on the job not myself. Between doctor appointments, diagnosis, treatments, and recovery, my job suffered.
And there was no recovery from work after that. By early September, even before the missed in-person meeting, work had given up on me. The meeting pushed it over the top.
The toll on my mental state, physical state, confidence, was immeasurable.
MS and work were causing so much anxiety I felt like my chest was being crushed by a python. Life and breath being squeezed out of me.
Yet, I pushed on. With little to no support from a company that had written me off, I still worked with other teams and delivered the year end goal on the new version of the product in July, 5 months ahead of schedule.
I still worked with sales, pushing through multiple presentations and demos, not to mention, giving a client we had lost before I started the confidence, we could resolve their issue and get them back under contract.
As a team, we beat expectations, expectations that were for a 30% YoY increase in revenue, and we beat that in my first year on the job.
Sadly, all for not. Work had already written me off. Ignoring all the positives that I delivered and focused on how long it took me to get up to speed while dealing with a new MS diagnosis.
There's the challenge with MS. Some people hear it and have expectations that you'll never meet. They don't care what you've fought through to get where you are, they still see a person with a disability that will never meet their needs.
Right now, I'm feeling better. Symptoms are under control. Anxiety has dissipated. I still need to stretch out my foot every morning, but it's easier than it was.
Yet, there's always the concern. What happens if my brain shuts down when driving, running, or worse, during a job interview.
Things I have to live with. Things I have to cope with. My challenges that I deal with in silence.
Living with MS comes with Challenges
MS will leave you with challenges you never imagined. Bias, discrimination, loss of confidence, and anxiety. They are the burden we work through daily.