Falling in Love with Multiple Sclerosis

A personal reflection on loving my partner and her disease

Aloha had already been diagnosed with Multiple Sclerosis when I told her I wanted to be her boyfriend. It was 2013. I was 26 and she was 29. She looked healthy, so that, I guess, made it easier for me to say I wanted to be with her.

I knew Multiple Sclerosis was as bad as it sounds though. It’s a disease that doesn’t cause one problem. It causes multiple: fatigue, numbness, difficulty walking, muscle weakness, tremors, blurred vision, pain, speech impairment — it could affect anything that’s controlled by the nervous system. There’s no cure for it and it can get worse over time. It’s a nasty disease.

“So, are you sure you want to be with me?” Aloha asked me. “I’m sick. You know that, don’t you?”

I was 100% sure. Aloha got my heart with her drawings, open-mindedness and sense of humour. The ugliness of her disease couldn’t stand a chance against the beauty of her soul. I adored her boobs too.

I didn’t care about what her immune system was up to and was not afraid that one day I might be pushing her into a wheelchair. In fact, I thought one day *I* could end up in a wheelchair. There are a million ways for that to happen. So, to me, it seemed unreasonable not to start a relationship for fear of what might happen tomorrow.

Tomorrow may never come. Tomorrow a doctor might look at me and say,

“The results of your brain scans are not looking good. Multiple Sclerosis — that’s what you have now, bro.”

Saying yes to Aloha’s disease was easy for me. Living with it, I then realized, is not.

***

Since 2013 I’ve taken Aloha to hospitals multiple times. Medical checks, visits, emergencies, headaches, inexplicable pains — she’s only 39 but has seen more doctors than my 91-year-old granny has in her entire life.

There are times when she gets tired for no reason and needs to spend the whole day lying on the couch. If I’m lucky, this happens during the week with no serious consequences. If I’m unlucky, this happens at the weekends and our plans get ruined. If I’m extremely unlucky, this happens on house-cleaning day.

No one in history has ever wanted to clean a 2-bedroom apartment by himself while his partner is watching Stranger Things on the couch. This is how mean MS can get.

All in all, though, Aloha’s health conditions are good. Her drawers are filled with scans, prescriptions and reports written in a language only people with six Master’s degrees in neurology can understand, yet you wouldn’t know she’s ill if I didn’t tell you.

I mean, look at her:

Ops, wrong photo. That’s my 91-year-old Italian granny making gnocchi. Sorry. This is Aloha.

She looks healthy, yes, but when MS hits and sucks all her energy, a part of me goes, “Oh c’mon! Are you seriously so fatigued you can’t do anything today?”

I must confess; sometimes I forget my partner is sick because, thankfully, MS has never shown me how hard it can strike. Except one time, it did. One day Aloha’s legs started trembling so badly that she looked like she was dancing to some African music. I thought she was going to lose control of her limbs and never be able to walk again.

“If I’ll ever end up in a wheelchair, I’ll break up with you. I don’t want to ruin your life,” she said that day. I made her promise not to say such a stupid thing ever again.

And then forced her to clean the apartment.

***

Things have been going relatively well for the past decade. That’s why, when I look into the future, I think the toughest times are yet to come. I hope scientists will find a cure. I hope I’ll be healthy and wealthy enough to take care of my partner.

In the meantime, I’ll keep crossing my fingers every time she’s being visited by a neurologist. I’ll keep holding my breath every time she looks at the results of her most recent brain scans. I’ll keep wondering what it’s like to have an autoimmune disease — hoping my body will never find that out.

As I’m waiting for a better or worse future, I can’t do anything but keep falling in love with Aloha. And Multiple Sclerosis, too.

***

Thank you for reading this reflection. Before I hit publish, Aloha reads each of the stories I write, including the most boring ones. She’s the person who reads me the most. In fairness, she has to do that as I give her no other option. The first words that came out of her mouth while reading this story were:

“Hey! You can’t talk about my boobs!”