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I Went Temporarily Blind at 25

And Was Diagnosed with Multiple Sclerosis at 26

Stay healthy.

These are the words on the poster hanging above a table in my changing room. It shows pictures of people washing their hands and covering their mouths while coughing. Under it waits a neatly folded blue hospital gown.

“Are you okay in there?” a nurse calls to me. I look down and see the tops of her green Crocs, waiting for me on the other side of the curtain.

Her voice brings me back to myself.

“Yes, sorry, be right there.” I quickly unbutton my blouse and pull the paper gown over my head.

I slide back the curtain. The nurse is waiting for me across the hall, reading a clipboard.

“I see from your chart that you’ve had an MRI before,” she says. “You probably know what to expect, but do you have any questions before we go in?”

I know what I really want to ask her, but I know she doesn’t have the answer. I want to say: I don’t think I’m supposed to be here. I’ve lived a healthy life. I’ve followed all the rules. Why am I being tested for Multiple Sclerosis?

Instead, I force a smile and shake my head.

“I’m ready,” I say.

In 2013, when I was 25, I woke up blind in my right eye. I thought maybe something was caught deep inside, like an eyelash, but after spending a day trying to pull the imaginary object out of my eyeball, I realized there was nothing there and something else might be wrong.

In the weeks prior, I felt tingling and numbness in my hands and feet. I was training for a race and thought they were symptoms of overtraining or that I’d pinched a nerve. But, in the days leading up to the blindness, the tingling had gotten substantially worse. One morning I was blow-drying my hair and completely lost feeling in my right hand; I lost my grip on the blow dryer and it dropped to the floor.

   I thought maybe something was caught deep inside, like an eyelash, but after spending a day trying to pull the imaginary object out of my eyeball, I realized there was nothing there and something else might be wrong.

My physician told me that my eyesight would probably come back in a few days; I likely had a bad strain of the flu. This might also explain the other sensations I was feeling—my body was likely overtired from fighting whatever illness I had. But, when my sight didn’t come back after two weeks, I was expedited to an optometrist who discovered that my optic nerve was 350 times the normal size.

“No wonder you can’t see,” she told me, pointing at an X-ray of my eye on her computer screen. With my other eye, I saw a large circular mass encompassing the nerve.

“This is what we call Optic Neuritis. In simple terms, it means an inflammation of your optic nerve.

“You should regain your eyesight in a few months or, in the worst case, fully over the course of a year. In the meantime, I want to monitor you, and I’m going to refer you to one of my colleagues who specializes in these types of cases.”

I thought she was referring me to another eye specialist or optometrist at her clinic. From what it sounded like, I was going to recover and everything was going to be fine.

So I was surprised when I called to make my follow-up appointment. I’d been connected to the Multiple Sclerosis wing at the Alberta Foothills hospital.

   I don’t think I’m supposed to be here. I’ve lived a healthy life. I’ve followed all the rules. Why am I being tested for Multiple Sclerosis?

“Are you sure you’ve got the right person?” I asked the receptionist over the phone.

“Yes, I’m sure,” she assured me. “We’d like you to come in for a consultation with the doctor as soon as possible; can you come in tomorrow? We’ll make an opening for you.”

I agreed and hung up the phone, sitting in silence for a few moments on the edge of my bed.

The only thing I understood about MS up to that point was that it was a degenerative disease. I’d seen a commercial about it once. A wheelchair-bound women who’d lost full control of her body and limbs went to the park beside her house every day with a caregiver who spoon-fed her lunch. The commercial suggested this woman had limited time, even though she was only in her late forties.

This is a mistake, I thought. I’m healthy. I eat well. I take vitamins. I run an average of ten half marathons a year. I practice yoga and meditate daily. No one in my family has major health problems. I take care of myself. I’m fine.

But the symptoms I was experiencing suggested otherwise.

While I sat nervously on a examining table at the MS clinic, a doctor poked my arms, hands, neck, and back with a small sewing needle, monitoring my reaction to the sensation.

“Can you feel that?” She asked.

I indicated the parts on my body where I couldn’t and the parts where I couldn’t feel anything at all.

“Do you find that the tingling in your limbs gets worse when you’re stressed or overheated?”

I nod.

“Do you have any pain?”

“No,” I say, shaking my head. “Things just go numb sometimes, like the feeling when your foot falls asleep because you’ve been sitting too long.

“But it’s not constant, it comes and goes in waves,” I added, hoping this was important, thinking it might prove something otherwise.

She tested the reflexes above my knees and in my elbows with a small clay tool that looked like a hammer.

“Your responses are a little slow on one side.”

She shone a light in my eyes and asked me to stick out my tongue.

“Hmmm,” she said, pulling up a stool beside me.

“Optic Neuritis and the tingling sensations you’re experiencing are synonymous with people who have MS. After seeing you today I’d like to continue seeing you at the clinic.

“But before I can officially diagnose you, I’d like to send you for a series of exams and MRI’s over the next year to examine and track any changes in your brain.

“I’ll get the receptionist to schedule your exams, and we’ll see you after that to check in with you.”

“Hang tight for now,” she said. She shook my hand and left the room.

Hang tight, I think to myself. She makes this sound easy.

But the next 365 days were really fucking hard.

My body retaliated against me. Constantly worried and obsessed about my health, I entered a state of extreme stress. Exercise and physical activity had also become difficult. One day after a long run I collapsed on my bathroom floor because my body physically gave out. I was forced to forego running and was advised not do any form of exercise where I could get too overheated. I also had to quit my job;I couldn’t afford to take on any added stress or over-stimulation.

I spiraled into depression. Some days I only dragged myself out of bed for food and water.

Every few months I visited different specialists who checked my eyes and monitored my brain and nerve functioning by taping electrodes to my head and watching how I reacted to stimulus.

   My body retaliated against me. Constantly worried and obsessed about my health, I entered a state of extreme stress; once, I collapsed on the bathroom floor because my body physically gave out.

I felt like I was already losing myself to the disease, even though it wasn’t even official yet.

“No matter what happens, we will get through this,” my boyfriend says, holding me close to his chest in the parking lot at the hospital.

In my gut, I knew what the doctor was going to say before we even walked in.

“It’s nice to see you. I feel like it’s been a long time,” she said, pulling up a stool beside us.

I tried not to grit my teeth. Did she have any idea how long it actually felt?

She logged into her computer and pulled up my file. A year’s worth of test results. A year’s worth of fear and pain. My life flipped upside down.

   My cheeks suddenly felt hot. No. I couldn’t fathom putting my body through any more turmoil.

“Over the past year we’ve discovered a few lesions on your brain,” she said, getting straight to the point. Opening the X-rays, she pointed at a patch of small white dots scattered across my frontal lobe.

“See these?”

I nodded. This was it. The determining factor.

“Lesions are a tell-tale sign in helping us diagnose MS.

“And we’ve determined that you have Progressive, Relapsing Multiple Sclerosis.”

My boyfriend tightened his grip on my hand. I sat motionless, trying to process the words.

“We think the blindness and the other symptoms you experienced were the initial onset. You’ll likely have similar attacks or relapses down the road, and you may or may not fully recover after these flares. Unfortunately, with this strain of the illness we’re unable to determine when you could have another attack. You might experience something like what brought this all on again years down the road, or it could be tomorrow. It’s impossible to tell.

“The good news is that the type you have is a slow accumulation of disability. It’s not immediately progressive. However, you will likely need to make a few adjustments in your life over time to accommodate the illness.”

She pulled an oversized duffel bag off a shelf and put it on the ground beside me. I’ve barely processed the news and she’s already showing me medication.

“The choice is yours. You’re not at a stage in your diagnosis where you need to be bound to medication, but it might help you. A few of these options are trial medications so you could even get them at a lesser rate than the approved medications, depending on your insurance coverage.”

A guinea pig. A lab rat.

   I’m learning to live in cohabitation with the disease while not allowing it to encompass my life or define me. I’m learning myself to know that I’m still me.

“This is one option,” she says, holding up a small needle in one hand and a clear vile of liquid in the other.

“You can inject yourself with this every day. It’s easy to administer, and you get used to doing it. Some people have side effects, like bruising and swelling around the injection area, but that should subside over time. You’d need to commit to this option for six months to give the medication a chance to work.”

She picks up a box of pills next. “These are new. They’re an easier option than an injection. But I wouldn’t suggest this if you’re planning to have a family in the next six years.”

My cheeks suddenly felt hot. No. I couldn’t fathom putting my body through any more turmoil.

Enough.

“No,” I say firmly. “I’m not doing this.”

This was the first time I’d felt in control of the entire situation—of my own body—in a long time.

“Are you sure?” the doctor asked.

“Yes,” I said. “I’m going to manage on my own.”

I felt an overwhelming urgency to take control back over my life. I needed to fight.

“I can do this.”

Good and bad days. This is what the years have been comprised of since my diagnosis. Slow, steady, baby steps in re-navigating my relationship with my body and learning to accept my diagnosis. Finding courage to embrace fear and be okay with the unknown.

I’m learning to live in cohabitation with the disease while not allowing it to encompass my life or define me. I’m learning myself to know that I’m still me.

I sit with my boyfriend on the beach, watching the sun dip behind the sea. I can feel the sand between my toes. I’m having a good day.

   His skin feels soft against mine. It feels so good to feel.

We talk about having kids and the type of parents we want to be. I put any possibility of the disease ruining this out of my mind. I’ve heard that being pregnant is amazing for women who have MS. I promise myself in that moment that no matter what happens, nothing will never take away the dreams, ambitions and joy I crave in my life.

I think about the races I’m going to run this year, appreciating the fact that I’ve learned to find the balance between movement and relaxation, and that I can still move my body even if I will be significantly slower than I have been in the past. I’m finally in a place where I feel energized and healthy again.

I hug my legs into my chest, brushing my boyfriend’s arm. His skin feels soft against mine. It feels so good to feel. I’ve come to appreciate the little things, like the soft feeling of touch and being able to get out of bed in the morning. I’ve stopped taking things for granted.

I’m ready, I think to myself. It’s the pep talk I’ve given myself everyday after walking out of the clinic. Another day. I can do this. I’ve got this.

The sun sets, and we get up to leave.

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    Kailey Buchanan
    About the author

    Kailey is a communications expert who lives in Vancouver, BC. She is an avid lover of writing, yoga and tacos.

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