I’m attached to machines 24/7, and those machines, including a ventilator and feeding tube, have kept me alive for the last decade.
- But this isn’t a story about machine-assisted life.
- This is a story about living: about building a life worth the effort of being alive.
THE DIAGNOSIS THAT CHANGED EVERYTHING
When I was 25 years old, I was a Ph.D. student at the University of Alberta, and I spent more than half of that year hospitalized in intensive care. When I wasn’t hospitalized, I worked ahead to keep my scholarship, and my sister, Elizabeth, and I envisioned the life we would build together in the big city once she began her master’s degree. But interrupting our plans, I received an explanation for the muscle weakness and breathing problems that kept landing me in the ICU: Myasthenia Gravis (MG).
This neuromuscular disease aggressively attacks the muscles, and the muscles allowing me to breathe were already alarmingly weak, but we had no intention of letting this derail our plans.
Just months after Elizabeth moved to Edmonton and we set up our shared apartment, I was in BC and collapsed, coded, and put into a medically induced coma. I was only supposed to be in BC for a weekend, but after three months on life support in the ICU, I knew I wouldn’t return to Edmonton.
Our plans dissolved.
Three hundred and sixty days after I coded, I left the hospital paralyzed, needing a ventilator to breathe, a wheelchair to move, and 24-hour medical care to make sure I didn’t die.
My ventilator keeps me alive, but that isn’t the story that I am telling right now. This story is about how I have fought to stay alive, and my family fought with me to make that life worth living.
- Hundreds of people have fought beside us, but one person threatened what many built.
- Please join our story – help us over one last hurdle.
CREATING A HOME TO FIT ME
While I was in the hospital, my parents, Tim and Janet, completely renovated the main floor of our home to accommodate the wheelchair, hospital bed, ceiling lift, and supplies my new life needed. This renovation went perfectly and allowed me to move back home instead of into a care facility. Over the years, we continued to adapt the house to meet our changing needs.
However, we couldn’t adjust the house’s square footage, which became more of a problem as time passed. A person standing can turn around on the spot, and someone using a manual wheelchair can turn in three- or four-square feet. I need six square feet to turn. For perspective, I can’t turn in the hallway of a “regular” residential house. The lot wasn’t large enough for us to build an addition onto the home, so we removed walls to create an open floor plan and did our best with what we had. This worked until Elizabeth moved into the house.
CREATING A HOME THAT FITS US
The whole family united to keep me alive through the pandemic, especially during the months when caregivers couldn’t be present. Although Dad retired to be my caregiver, Mom was still working, and they couldn’t give me 24-hour care by themselves. Elizabeth could only help with care if she was in our bubble, so she moved back in. Despite the less-than-ideal circumstances, my sister and I were finally living together again after life separated us seven years prior, and we wanted to stay that way. Sharing responsibilities cuts them in half, sharing joys doubles them, and it had been a while since we shared much of anything.
Unfortunately, we soon realized that the house we had renovated to meet my initial medical needs was now too small for four adults, three dogs, and my medical equipment and supplies.
After months of discouraging searching, we found an older house with good bones and the perfect location. Despite meeting many of our needs, the new house needed extensive renovations to become fully accessible and be our perfect “forever home.”
MOM AND DAD: RENOVATION DREAM TEAM
Many people would find the project daunting. However, Mom and Dad had over twenty years of experience building and remodelling. They worked with contractors to build a house on Vancouver Island and completely renovate the home I returned to after my year in the hospital. Those projects didn’t go well: they went perfectly. You hear horror stories about renovations that go over budget and miss deadlines, but that didn’t happen for us, ever.
Mom and Dad successfully renovated our old house to make it accessible for me, and they were confident we could do it again.
This time, though, we had the challenge of renovating our home and providing intensive medical care in our “home-based ICU” to keep me alive. Last time, they completed the renovation while I was in the hospital, so they didn’t have to worry about my medical needs. Now, our team needed another player.
DAD IS OUR TEAM LEADER
Last time, Dad was the head of the operation. Dad has always been “cool as a cucumber,” but 32 years in the RCMP made him phenomenal under pressure and experienced at managing large projects. He routinely made split-second decisions that saved lives.
There wasn’t a situation he couldn’t fix or a project he and Mom couldn’t tackle together.
DAD’S ACCIDENT
Then, in 2018, just days before Christmas, Dad got hit by a truck. Have you ever said, “If a bus hit me tomorrow…”? Dad walked our dogs in our quiet subdivision every night, but that night a truck ran into him, intentionally. We later learned that Dad was one of seven people mowed down that night. Dad miraculously survived, despite having thirteen broken ribs, a collapsed lung, and a brain injury. However, the accident left Dad struggling with a brain that didn’t work the way it used to. Now, Dad struggles with memory and concentration, and has aphasia, which affects his speech and ability to understand others.
DAD COULDN’T DO IT ALONE
This time, Dad didn’t feel he could manage such a challenging renovation without help, and we began searching for a contractor.
NEW TEAM PLAYER… OR IS HE?
We desperately needed someone to oversee the construction, because the effort of keeping me alive was straining everyone to their limit, and we thought we’d found the person we needed. We could never have imagined how wrong we would be.
MISREPRESENTATION AND MISAPPROPRIATION
The contractor we hired took advantage of our situation. We did our due diligence, getting references from past clients and coworkers, but never imagined we had met a professional liar. It’s true in our story that “hindsight is 20/20.” Despite warning signs, the events were so extraordinary that we couldn’t see the extent of the problems until it became too late.
- The money set aside to renovate our home and make it accessible for me is gone.
The contractor misrepresented his skills, abilities, and credentials. He over-billed us hundreds of thousands of dollars and lied about deposits and taxes. He procrastinated and delayed the project for almost two years. When we began looking into where our money had gone, the contractor handed us a cease-and-desist letter, claiming we were defaming him. Then, he stopped responding to any of our calls or messages. Now, he has liquidated his remaining assets and disappeared.
THE PROBLEM
The contractor left us with an unfinished foundation and piles of rubble, dirt, and garbage wood. He took the money that would have transformed our house into a home a year ago.
We need your help to finish this project.
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THE DETAILS
We spoke to a trusted friend who referred us to a new, honest contractor who’s helping us raise the money to complete our renovation. Our new contractor, who isn’t criminally underselling us, gave us a new quote.
Our most pressing need is to build the addition that will accommodate my accessible bedroom and bathroom.
This part of the project will cost $100,000, but completing the entire project will take closer to $500,000.
HOW YOU CAN HELP
- If you are a supplier, we need materials.
- If you are a tradesperson, we need your expertise, skills, and labour.
- If you can donate money, no amount is too small.
We need your help, and appreciation and gratitude are all we can give you in return.
You’re likely reading this story because you’re connected to me or my family.
You worked with Mom, Dad, or Elizabeth; cared for me at home as a caregiver or medical provider; were my doctor or nurse; went to church with any or all of us. But you may not know us. You might have clicked on our story somewhere on Facebook. Or a friend shared it with you.
Regardless, you read our story, proving that sharing this will get it to people who can help.
Please share our story.
Whoever you are, thank you for letting us share our story with you.
Thank you for anything you can do to help us rebuild our lives.
He’s waited almost 20 years to round up the next generation of Swampers and record at the world-famous FAME Studios in Muscle Shoals.
