Why accessibility is important to me

Three short lines:

My name is Darren.

I am 18 years old. I have sma.

I like to write.

I did not know what made me write to him. Not until he told me the story later on.

I did not know exactly what SMA was. Only that it was a muscle wasting condition similar to Duchenne, something I was too familiar with, having had -and lost; friends with Duchenne.

-And we wrote, email after email after email.

We started chatting on icq, which was the instant messenger of the time.
He would spend hours writing emails to me or sometimes trying to dictate them via Dragon, and there was often something waiting for me when I woke up, because of the time difference between Louisiana and Sweden.

D was kind, caring, generous, warm and loving, curious and funny. We’d hang out in the same chat room on Alamak and Yahoo groups and people started seeing us as one before we did.

We talked about life. About school and writing and dreams. We already made up silly nicknames for each other.

He called me first. We had both been worried about whether I would understand him or not, since his speech was affected by his condition. But he didn’t have a southern accent, and we didn’t have any problems understanding each other. 

I sent him photos by email, but D didn’t have a digital camera so he sent me 3 polaroid photos by snail mail.

I waited and waited for that letter with the american stamps on, and when it arrived I opened it slowly in awe.
I sat by the kitchen table and made sure I was alone, and then carefully unfolded his letter to read it and re-read it.

It was short and sweet and full of humor. I unfolded the next paper and there were three polaroid photos of D in his room. 

The truth is, when I first saw his photos, I was shocked.

I have never revealed that to anyone.

We had covered most things about his disability early on, from his first shy and careful “I ride a black and grey electric wheelchair” and “I can only move my thumb”, to him trying to explain to me what a BiPap and g-tube was (I already knew), to deeply personal things when we knew each other better.

And it was a relief for him that none of these things that he dealt with was strange or new to me. -But when I saw his photo, I still wasn’t prepared for how far his SMA had progressed.

I kept those polaroid photos next to my bed and looked at them whenever I was thinking of him and… and he was so beautiful. I remember that in one of the photos, he looked super nervous, but in the others he had that crooked smile and big brown, happy eyes.

He had been nervous about me seeing him too. This became a little easier when he eventually got a digital camera. He would send me messages with these crazy goofy photos where he was making silly faces, -but we were never able to do any video calls.

I think I first spoke of the idea if me visiting after he had been sick with a cold and feeling particularly down and worried about his health.
And it must have taken 10 months, nearly a year until we could make it happen.
A year of convincing parents, saving money and planning, and then waiting for school to be over for the summer.

My first visit was during the summer and only lasted two weeks. This was way too short, but it was the first time we would meet in person.

I had made sure that I would go home to Sweden before the 4th of july, because I didn’t want to ruin their family holiday. D had fought so hard to convince his parents to let me come and I did not want to be a burden and inconvenience.

-There are many things that I have forgotten over the years. And there are details about my first visit that are absurd, like: -I remember the yellow color of the wall of the breakfast room at the airport hotel. I remember having the most amazing blueberry muffin ever at my B&B: But I can’t remember all the details of D’s bedroom, even though I spent many hours there sitting next to his bed.

I love flying, and my nervousness was all about meeting his parents. I had to fly to New York and then to Chicago before I would land in New Orleans.

I arrived late in the evening and had arranged to stay at a cheap Inn at the airport. I wasn’t able to eat anything, but I slept surprisingly well even though the jetlag confused my body.

The next morning, D and his dad were supposed to pick me up around 11, and I checked out of my room at 9:30 and had the american breakfast of a dry muffin and a glass of orange juice.

Then I sat in the lobby and waited, and waited… Becoming more and more worried.

This is the absolut nightmare scenario, right? You go across the world to visit someone and they don’t show up?

-I trusted D, and the only backup plan I had was enough money for 2 weeks and directions for taking the train to his hometown. And there would be no point in calling his home because they would already be on their way.

I saw the big Chevy van stop outside the hotel, and a short, kind looking man with grey hair, brown eyes and a big belly walked towards the entrance. I had never seen or spoken to his dad but there was a resemblance.

We greeted and he apologized for being so late and explained they had needed to stop along the way because D was not feeling nor breathing well.

My heart sank.

I think that his dad always instinctively knew how much I cared for D, and he trusted D’s judgement. We had a mutual understanding that D was most important to us, that only took a nod and a few seconds to reach.

Bags were packed, I said hi to D’s carer, D said a quiet, strained “Hey”, and we hugged.

He couldn’t talk.
He was so nervous about seeing me that his breathing was shallow and his cheeks red. He had to use the suctioning machine to clear out mucus all the time because he was having problems swallowing.

Not knowing what to do in this situation, and seeing how worried his father was, I talked to him about my flight to keep us distracted. And in turn, his dad told me about the areas we were driving through, on the world’s longest bridge, above the swamps.

On our second stop, D’s carer showed me how to use the suction machine properly and I did that for D for the rest of the drive. 

We stopped for lunch, and I had my first ever hushpuppies. D still couldn’t talk but he looked at me, smiling. When he started to relax some, so did his breathing.

In the middle of lunch, his dad said, “I thought we were going to lose you there” and I knew he meant it and I nearly started crying, both of guilt, worry and relief.

I took D’s hand, -I had to let go when he got on the ramp into the van; but we sat next to each other holding hands for the rest of the drive and I only had eyes for him. His hand was soft and warm in mine.

I did not notice much of the magical nature of the swamp, the intense heat or the humidity.

We went to my B&B first to allow me to check in and leave my bags.
It was the most beautiful old house run by a french couple, mainly for wedding parties. It was just down the road, only minutes from D’s family home. When the owners had heard about D and the European girl coming to see him, they had given us a great deal for the stay.

When we arrived at D’s house, his mother and his crazy poodle greeted me while his father took D to bed to rest.

He was feeling marginally better but still couldn’t speak. I sat by his bed through the afternoon and evening. We shared the silence and just looked at each other, smiling, finally. His dad even came to check on me, asking if I was OK, hesitating, then saying that “D doesn’t talk much…”.

I blushed and lied, saying that D was talking. It was definitely not the first day together with D that I had hoped for, but, I did not feel awkward about D’s silence, only his father’s question.

That evening, I sat by their dinner table and was asked to say grace: -It was not something I had done before, and it was another thing that was very different from home.

One afternoon, D’s mom took me aside and we sat on the couch in their living room as she told me about when he was born; and she had us both in tears. 

D was meant to be born on the 29th of february. But like other things, it didn’t go as planned, -his mother refused, and he was born on the 28th. 

She told me about how his grandparents had helped take care of him because he had two elder brothers who had health issues. When he was 3 months old, D started started having problems lifting his head, after receiving a vaccine. 

He was diagnosed with spinal muscular atrophy. Because he was so little when he was diagnosed, he was diagnosed with type 1, and his parents and grandparents were told he would not survive his first birthday.

When I went back to D’s room, he was resting in his bed beneath the window, and I sat down on the edge of his bed and told him about what his mom had said: -And he started laughing out loud, saying he had heard that story so many times.

But it taught me something about why his mom was over protecting, why it was so difficult for her to leave me and D alone together, and in extension why she would be hesitant of me coming to see him.
Now, I’m not an anti-vaxxer, and I don’t believe that his mom is either, but I can fully understand the need for having an explanation, a reason, for why D would become sick.

The days followed a pattern where D was not well enough to come pick me up in the mornings. So in the mornings his mom or his grandparents would take me shopping or sightseeing or out to lunch. His grandparents were incredibly warm and welcoming to me.

I remember his older brother visiting, sticking his head in by the door to D’s bedroom, chatting about football: And I didn’t understand a word of his accent!
I also got to meet many of his extended family members. But It would take his mom years to present me as D’s girlfriend, not just his “friend”.

We went to Baton Rouge and LSU, and I loved seeing D’s favorite places. D tried to teach me all about American football, but the rules were too complicated for me to follow.

D first thought I would feel like I was missing out or be bored if we did not go somewhere or do something every day, and he pushed himself too hard.
Me, -I just loved every minute I could spend with him alone: On the patio in the shade, or simply sitting together in his room, where we would watch a movie or football, use the computer or just talk.
And I loved everything we learned about each other when we could just be together.

He went with us to New Orleans, but he was not well and our concerns for him took away the joy of the trip. We left early, because D was struggling and did not have enough energy to drive his wheelchair himself. 

That evening after we got back, his parents did not want me to stay with him. D was so so tired and couldn’t speak. He needed extra oxygen and his ventilator, that he normally only used at night. I couldn’t explain to them better that even though it was frightening, I wanted to stay, to sit with him and care for him. I did not want to leave him. But D couldn’t speak to ask them to let me stay.

I could talk to D about anything, but we had to be private and careful around his parents. I was still worried that they wouldn’t like me or that they thought I would be bad for D, that they would not let us see each other again.

If we knew his parents were out for bit, we would steal a shy kiss and a cuddle. When we watched TV I would crawl up into his bed and place his feet in my lap to rub them, because we figured that would be innocent enough if we would get “caught”. To his amusement, I also fell asleep like that a couple of times…

With everything that was going on with D’s health, his parents didn’t need someone to turn things upside down in their home. It was so hard to see him become more tired because of my visit, but D,.. he made loving him so easy. 

Right, the story…

I was sitting next to his bed while he was resting, looking out at a heavy summer rain through the widow, when D suddenly asked:
“Do you have a sense of smell?”

Confused, I replied that, yes, I do.

He told me a story about a woman who had worked with him and cared for him for many years, since he was a small child.

Her name was Caroline, and she had no sense of smell. She had to stop working a few years back, because of her health.

She had been important to D and meant a lot to him, and they had stayed in touch. Caroline had encouraged him and told him that he would soon have a girlfriend.

A few weeks before I wrote to him, Caroline had passed away after years of fighting cancer.

I may have a sense of smell, but I am as convinced as D was that we had some help finding each other.

A photo of D