Saying goodbye to April

Not many people can say theyve planned and attended their own funeral but April Hubbard can.

The 39-year-old artist and disability advocate held her own living funeral at the end of September in Halifax, welcoming friends and family for one last big glitzy, sparkly show.

It was a night of artistry burlesque and drag, storytelling and dance, song and comedy to celebrate her life and the effect shes had on her community. 

It was also a chance to say goodbye before she accesses medical assistance in dying, a decision she came to after decades of living with an increasingly debilitating disability.   

I had a lot of dreams and hopes for it, but they all exceeded my expectations and it was just so special to feel embraced fully by the community and really celebrate me and my life, Hubbard told CBC News after her funeral.

Hubbard was born with spina bifida and a variety of other disabilities that didnt initially affect her day-to-day life. But when she was 17, her doctor discovered two tumors in her spine and she was diagnosed with a tethered spinal cord.

Its a disorder of the nervous system caused when tissue attaches itself to the spinal cord, limiting movement and leading to severe, chronic pain.

Hubbard has a few different forms of chronic pain, but the most common is what she describes as a pulling, tearing pain that can form anywhere in her body, but mostly in her lower back.

Another common type of pain forms in her legs, which she said can feel as if they are being sent through a meat grinder.

I can see that they're fine and there's no injuries there, but it feels like they're just being ripped apart and the bones feel like they're being crushed, she said, adding that that pain can last for minutes or weeks at a time. She never knows how long it will last.

She also experiences nerve pain, tingling and numbness in her extremities, digestive issues and gastric bleeds, which are becoming more frequent.

Hubbard uses arm crutches and a wheelchair to get around when needed, but for the last two years, she has been mostly confined to her Halifax apartment.

In 2022, April experienced a health relapse that forced her to examine her life and her future. She could no longer work, make art, or advocate, all of which brought her joy and meaning, she said.

So I had a really big fear that I would have another change in my health and that I would be trapped at that point and stuck in a hospital bed and not being able to communicate my own wishes and desires and I knew that was not something that I wanted at all.

That uncertainty, plus the challenges of living the active, artistic and social life she wants, is what prompted Hubbard to apply for medical assistance in dying in the summer of 2023. She was approved later that year.

MAID is still relatively new in Canada, becoming legal across the country in 2016. 

Between 2016 and 2022, there have been nearly 45,000 medically assisted deaths in Canada, according to the latest figures from the government of Canada.

For some its controversial, but for Hubbard, it offers peace of mind. 

I've pushed really hard these last few months, almost a year now, to try to make it through all the milestones that I still wanted to hit, but each one has become a little more difficult along the way, she said.

Knowing that it's getting closer now and that I've started doing a lot of the steps I need to say my final goodbyes and be ready, I've got a lot more closure and it's starting to feel more real, but also that's comforting to me now.

One of those milestones was Christmas last year. Another was Halifax Pride in July, when she served as the festivals ambassador.

One of her last milestones was her living funeral at the Spatz Theatre on Sept. 29.

Riley Reign, who met Hubbard in an advocacy role while working in theatre, played guitar and sang two songs at the funeral, one of which Hubbard commissioned a couple years ago.

We really bonded over mutually supporting each other, Reign said following the event. Even though we don't have the same disabilities or the same experiences moving through the world, we both kind of instantly were like I got your back.

Rodin Leitao, Hubbards friend and former roommate, describes her as a person with a great smile who is approachable, smart and wise. 

When you meet someone new, it's hard, you can't be yourself. But with April, you can be yourself, he said.

Leitao met Hubbard through the Halifax Fringe Festival when he moved to the city eight years ago.

Hubbard was a longtime volunteer and chaired the performing arts festivals board for years. Its where many people came to know her, including Iz Lloyd.

Lloyd said Hubbard has been key in making art spaces more accessible in Halifax, especially through her work at Fringe. 

In her time there, the festival made the decision to no longer use spaces that werent fully accessible. Shes also been supportive of people of all abilities getting opportunities to perform and having their voices heard.

I want her to know that she's so loved and she's touched so many people and so many spaces that I don't think anyone within the arts community of Halifax can walk into a space and say that they haven't even heard of April, Lloyd said. 

That's the impact that she's created.

As her living funeral came to an end, Hubbard was sure to get the last word. 

Sitting on a yellow chaise on the stage, she reflected on hearing a common theme of working through a process of creating, loving or living and continuing to celebrate those processes after shes gone.

There's going to be surprises along the way, but if we value the moments that we get to spend learning and discovering and the journey that we take, it makes it all worthwhile, she said.

So that's my challenge to everybody, and I hope that's what you'll take along with you in your lives once I'm no longer here.

A month after her living funeral, Hubbard has been thinking more and more about her death. She hasnt picked what shes calling her final exit date, but she has some ideas about what she wants her death to look like.

Hubbard is hoping it can happen at one of the local theatres that she has given so much time and love to, as those are the places that feel like home to her.

She said a black box theatre can be transformed into any environment she wants with lights, music and a ton of pillows.

I just picture curling up with all the people I love around me and holding their hands and saying my final goodbyes to them and just having real joyful moments with the people that I love most, she said. 

I jokingly say I want it to be the best cuddle puddle ever. I just want to feel love in my final moments.

With more time to reflect on her death, as she moves toward death, she said it was the people in her life, the connections she made, that mattered the most.

That's what I want to focus on in my final days and I hope everybody listening will also think about all the connections that they want to make and go out there and have those conversations because you never know when your time is going to run out.

Atlantic Voice producer: Caroline Hillier 

Videography: Jeorge Sadi, Dave Laughlin

Copy editing, layout: Elizabeth McMillan

Top image: Photo illustration/CBC News