When Your Job Gets Even More Real

First of all, I am a Senior Web Accessibility Consultant with a company called Level Access. I’ve been working in the field for 9 years and have loved every bit of it — the good days, the hard days, the frustrating days, the job changes, and the choosing-to-stay moments. All of it has been full of learning and growth that I love.

Second, I am diagnosed dyslexic, OCD, and ADHD — and within the last month, with multiple sclerosis (MS). The MS is where my passion for my job has become something that will keep me connected in the future.

Thirdly, I am personally a realistic but optimistic person. When I’m with doctors, I want it all: the amazing, the great, the good, the bad, the ugly, and the 1%. From there I follow the route with the best outcome, with the knowledge that things can change — but we are not there yet, so knowledge is key. Keep the dark door closed until it’s needed. Ten years of therapy and coping mechanisms have gotten me far in life. But this MS diagnosis took my OCD and my need for control and shook me to the core. It has made the dark door a bit larger, made knowledge a bit heavier, and made life very much unknown.

The Diagnosis

I want to step back and talk about how this all started, both for perspective on my condition and because if it helps others get to treatment faster — perfect.

On March 30th, I woke up with my left arm, left side of my torso, my left leg, and left foot numb. Like I had hit my funny bone, but everywhere on my left side. I ran through the symptoms checklist for a stroke and was fine, so I assumed I had slept on my left side wrong.

Give it a day, I’ll be fine.

By day two it was still there and I thought, “I pinched a nerve” — which is now the running joke with my husband.

It’s just a bad pinched nerve.

By day four I had been to the chiropractor, the numbness was still there, and my right foot had started going numb too. After a minor panic attack, my family insisting it was stress, and me insisting it was just a pinched nerve, my husband and I went to an urgent care clinic. They found I had diminished strength and sent us to the ER as a precaution.

At the ER I had a CT, CT with contrast, MRI, and MRI with contrast. The results showed all the signs and lesions in my brain to indicate MS. I was then transferred to the Neurology department at Utah Valley Hospital. My experience there was amazing — I can’t say enough about how supportive, caring, and open every nurse, staff member, and doctor was. I had a lumbar puncture, blood tests, and more MRIs to rule out MS mimics or a severe vitamin deficiency. Sadly, or happily — whichever way you look at it — it was MS. Three days of steroids later, I was sent home a much different person.

The numbness made it hard to walk, hard to balance, and impossible to hold my one-year-old. I had horrible electric shocks of pain up and down my spine and legs, and developed Lhermitte’s sign — a sudden electric shock sensation that shoots down your spine when you look down. I later learned this is a peak symptom of a flare-up. After a few days I began regaining some movement and strength, showing that the steroids were working.

I was able to connect with the Rocky Mountain MS Clinic because of my mother talking about MS and my condition. I’m so grateful for her getting informaiton and for how quickly the clinic got me in and started treatment. I know that’s not possible for everyone, and I can’t imagine living with this pain for months while waiting to see a doctor. (That’s a whole different problem with our medical system I won’t go into today.) I have now started Briumvi therapy and am on the road to finding my new normal.

When the Work Becomes Personal

Through all of it — the doctors, the work, the life adjustments, the pain — I found myself sitting and reflecting on my career.

My passion for disability has been there my whole life. It started with an interest in robotics and prosthetics, then shifted to computer science and accessible websites and software. With my dyslexia and ADHD, this work has always been personal. I use screen readers and read-aloud tools regularly to support my own comprehension.

With MS, my work may become an even larger reality of my future. Many people with MS experience vision problems like double or blurry vision, loss of limb function, extreme fatigue, and more. Assistive devices, screen readers, speech-to-action software like Dragon — even something as simple as color contrast — may become essential parts of my daily life. My livelihood and my passion might be the very reason I can continue to connect with the digital world.

What a beautiful and scary thought.

Beautiful because, in helping others build accessible sites and software, I may have been building my own future without knowing it. Every drag and drop that we made accessible, every table adjusted and every navigation made more consistent helped someone now and me in the future.

Scary because of how far we still have to go. I still face clients who push back, who dismiss accessibility or see it as a checkbox, who have no interest beyond the bare minimum. I hear the dismissive comments. And now, I can’t help but feel them a little more sharply.

I don’t know what my future looks like. Nobody with MS does. Some days the dark door feels closer than others, and that’s okay — I have the tools and the years of work on myself to handle it. What I do know is that this work matters. It has always mattered. It just matters in a different, more personal way now.

So if you’re a developer, a designer, a product owner, or a stakeholder reading this: please, build it right. Not because of a lawsuit, not because of a compliance checklist, but because there is a real person on the other side of that screen who needs it to work. That person might be someone like me — someone who spent years fighting for accessibility, who never imagined they would one day need it the way they might.

I’ll keep fighting the good fight. For everyone who is suffering now and waiting for the world to catch up. For the world of those with disabilities and yes — a little bit for my future self too.