Three strokes later, Mugabi Byenkya stands tall

When you meet him, you cannot miss his white wide-framed spectacles, big hair and thick beard. You could think of these as his signature look. No, it is just sentimental.

“I never liked cutting my hair since I was a child because of sensory overload. Same applies to shaving my beard, it reminds me of my late father,” he says adding that he keeps his hair and beard at various instances but they end up growing out.

“It is just what I like and I do not have a job that enforces my hair or beard to be of a certain length.”

To understand the story of writer, poet, singer and podcaster Mugabi Byenkya, you need to be familiar with his work. Especially his debut book Dear Philomena.

The book has been defined as a story of two strokes, one boy, one girl and a whole lot of magical realism.

According to Goodreads, in July 1991, Leocardia Byenkya underwent an ultrasound that informed her to expect a baby girl. She chose the name Philomena.

January 16, 1992, her baby was born as a boy. Filled with shock and surprise, Leocardia named her baby boy Byenkya.

At nine, Byenkya suffered from a stroke, his mother was told he was not going to live to see ten.

In December 2014, Byenkya suffered from two strokes within a week. Byenkya was 22 years old.

He had suffered three strokes and says he went to bed wishing he would die. Byenkya has since had very many complications because of the strokes.

Debut book and health

Dear Philomena, is a series of thoughts and conversations between Byenkya and Philomena (the girl he was supposed to be) about the year he was supposed to die but somehow lived through. When Dear Philomena was released in 2017, it easily became a collectors’ favourite, highlighted at Babishai Niwe and Writivism literature festivals, the book was lauded for its simplistic nature, writing style and a fact that it was easily digestible.

The writing style is a letter form, thoughts and expressions Byenkya puts in form of letters addressed to the version of himself that never got to be.

“Between my seizures, I did not get a lot of time to write before another seizure kicked in. It’s not written like a conventional novel, I wrote it in a way that people like me can read. When I was bedridden I couldn’t read conventional novels because grasping the text gave me seizures,” he says.

It is hard learning about Byenkya’s story without learning about the stroke that almost took him and later changed his life as an author and a creative. At the end of the two strokes, there is something they left back, multiple seizures.

Something that can weaken any soul, yet, he has tried to use it as fuel.

In March, Byenkya held an intimate show at the Goethe Zentrum rooftop in Kamwokya, Kampala, bringing spoken word, voice acting and while at it spitting his real life story.

Aptly titled Songs For Wo(Men)2 the album was released by Hello America Stereo Cassette, a record label for writers. The label founded in February 2021 has released cassettes of poetry, short fiction, and memoir.

Byenkya’s Songs For Wo(Men)2 he says, started coming together during the pandemic but could not pull it off because his health was failing him.

He had experienced complications earlier but the pandemic crisis made movement hard and restricted which gravely affected Byenkya. His health worsened and it was hard getting medication.

“When I went down in 2020, I didn’t really get up, I have been bedridden for nearly two years,” he says.

Even when he thought things would not get any worse, they did; “I got seizures when I was emotional, when there was loud noise, or different sounds. It was a difficult time. As much as I wanted to do, I put it on hold.”

In March 2022 however, after the restriction had been eased, he had received some medication and was a bit healthy to start working on the projects he had put on hold.

“Besides the time I got Covid-19, I have been relatively well,” he says.

In 2022, he reached out to Hello America Stereo Cassette, in fact, since he was sending lots of applications to different organisations, he sent them two emails and they replied.

But this time, Byenkya wanted something different, which is the reason he got in touch with Prynz Muwanguzi, a rapper and sound engineer to work on Songs For Wo(Men)2.

The two had met before the pandemic, then, Muwanguzi had just returned to Uganda after his studies and was hyper about working on music with Ugandan artistes.

“At the beginning of 2020, my cousin’s young brother was telling me about his friend that was looking for people to collaborate with. They asked me, “Do you do music? I had not done music in a long time and my health wasn’t the best but I still connected Muwanguzi to my other brother that does music. Unfortunately, they did not work on anything, but I kept in touch with him. Then, the pandemic happened,” he recollects.

Music

Later, when the opportunity to work with Hello America Stereo Cassette came up, Byenkya got in touch with Muwanguzi and started forging a way towards Songs For Wo(Men). He says unlike the past he has recorded, this time, he sent Muwanguzi recorded poetry and he created rhythm and beats to match the words.

“It is a concept album,” he says, adding that he has loved concept albums growing up and thus wanted his first project to be such an album, telling a story from the beginning to the end.

“It is a story of me being a disabled body navigating an able-bodied terrain.”

The album title is inspired by a Frank Ocean song by the same title with a deeper meaning. Byenkya says, before Frank Ocean was signed to major label, he had been a songwriter that also wanted to sing. But he did not get a deal, thus he recorded an EP and uploaded it for free.

Songs for Women is that song where Frank Ocean talks about singing to get women, yet those women do not want to listen to his songs because he is not yet mainstream famous.

Byenkya’s album interrogates the theory of people not liking art before it becomes mainstream.

“When Dear Philomena was new, there were many people I knew that did not pay attention to it but the more publicity, radio and TV interviews I did, they picked interest in the book,” he says.

The album that is mostly a body of spoken word looks at topics dear to the author such as love, toxic masculinity and faith healers. It consists of 14 songs, two of which, Philomena’s Voicemail 1 and Philomena’s Voicemail 2 are voice messages to Philomena. The two are an update of things that have happened since the book came out and how people have been confused about Philomena and who she is.

But like he said he wanted something different with this album, he indeed has a few songs that combine his wordplay with beautiful instrumentation, Marry Myself, produced by Muwanguzi is one of those earworms.

But as he says, the song is a love letter to himself, the poem was written as a response to a breakup.

“I’ve been in several relationships where people have told me that my disability is too much for them to handle, I wrote I Married Myself because I was tired of being told that I was too much,” he says.

And the faith healers…

But the album also talks about spirituality, especially faith healers, who he speaks passionately about.

“I have been dragged to many faith healers. I got my first stroke when I was nine, so since then, I have had a lot of health complications and once in a while a faith healer has shown up to pray for me to heal. They have been a soundtrack of my life,” he says. 

Uganda is a heavily religious country, with 89 per cent of the population believed to be Christian, thus, it is not surprising that some health and at times mental issues are referred to the church rather than a ward.

“There was one that was shouting for the entire house pushing my head and I continued pretending that I was sleeping,” he says.

Byenkya says he has talked to his family about faith healers and he is sure the material about them on the album will not surprise them. Besides, he has let them know that he is not okay with it. Sometimes they believe he is just being stubborn and does not want to get better.

Not that such responses surprise the man. He was told he was cursed since he was nine years old; “I don’t explain myself.”

Today, since he has medication, he has not had a seizure since December 2022, the longest he has gone without a seizure since 2014. He says this has been possible because of medication but people still say it has been possible because of God.

The minority?

Byenkya says his works are for people like him, and that is not changing with the album, he is looking out for the group that entertainment has not spoken to.

“When you look at the cinemas, we do not have captions and subtitles for the hard of hearing people,” he notes.

His book Dear Philomena was structured in the same way, an easy read, still for people like him; “That’s how I got into comics, because pictures guide the story.”

In fact, even when he was down for two years, Byenkya managed to have at least a comic published, he collaborated with an illustrator on the book he says they used the DC and Marvel formula where the writer writes with panel descriptions an illustrator can follow while drawing.

He also had a poem and an essay picked up for publication.

Challenges

Byenkya says he has missed many opportunities over the years.

“There was this time I had to share a stage with Nansubuga Makumbi and I got a seizure before that could happen,” he relates.

Regardless of what happens, the pain, Byenkya still has calm moments. He says when he sleeps, he is not in pain.