Miracle diagnosis stops woman from pursuing medical assistance in dying

After 17 years suffering from chronic pain, Jennifer Monaghan began researching medical assistance in dying (MAiD), but a miracle diagnosis saved her life.

Monaghan agreed to share her journey with medical assistance in death for the upcoming original Citytv documentary Veracity: MAiD in Canada.

The 43-year-old has suffered from narcolepsy since she was 13 years old, but it wasn’t until years later that the pain started.

Narcolepsy is a neurological condition where a chemical is missing in the brain that controls if you’re awake or asleep. “Dealing with narcolepsy really didn’t bug me. I just worked around it. I managed it,” said Monaghan.

However, when she started feeling a shooting pain down her leg, that’s when everything changed. “It was really overwhelming because all of a sudden, life had to stop. And I was going to the doctors and trying to figure out what was wrong. And I didn’t know what was wrong.”

“It started in my pelvis and a shocking pain just went down the front of my leg, but it wouldn’t go away,” explained Monaghan.

She said she started having to cancel engagements with friends and wasn’t able to go to work all the time. “Time goes on. Your friend’s lives go on. But you’re not a part of it really anymore. And if you are, usually I have to leave early. It’s just constant pain. The world becomes hard.”

“I didn’t really know from day-to-day what I was in for that day. I just knew that that it wasn’t good. So, I used a lot of distraction techniques by working a lot and just keeping myself super busy,” said the mother of three children.

Doctor’s visits weren’t a form of relief as they couldn’t tell Monaghan what was causing her pain. “Even many times throughout my journey of 17 years, I really did believe it was in my head. And that’s a really scary thing because I’m like, why am I creating all this pain and anger?”

Finally 17 years into her pain journey, she started researching medical assistance in dying. “By that point, I was stuck in bed and I’d really had quite a low point where I just felt like I had tried everything, tested every product on the market, went to all the extra things like a chiropractor, a naturopath,” describes Monaghan. “I just tried everything I could and I just couldn’t get there and so that’s when I decided to consider medically assisted [death]”

“So I just focused most of my energy studying things, but then also studying the MAiD programme and medically assisted death and seeing what my options were,” said Monaghan.

She also said she never told her family she was considering MAiD.

“I never had that talk with my family, because I felt like the only time that I would bring it up to them was after I applied and been accepted. So, it never entered my mind to tell them until that process went through.”

Monaghan said despite her research into MAiD, she did always want to get better and held out hope. “No matter how dark it got, it was still there. And I thank God for it every day that I was still able to have that hope in a real place of darkness.”

She said throughout her pain journey, she visited several neurologists as Monaghan was convinced her pain had something to do with her nervous system.

“At the very end of that 17 years, I asked for one more neurologist appointment. I really wasn’t expecting much when I went there because everything else was always a dud.”

Right before her last neurology appointment, her sleep doctor suggested she try a higher dose of the drug called amitriptyline that was often used to treat narcolepsy.

“So I actually started the prescription the week I got sent out to the neurologist. So, when I arrived in Vancouver at the neurologist, he saw that I was put on high dose amitriptyline,” explained Monaghan.

Once she described all her symptoms to the neurologist, she said he knew exactly what it was.

“Small fiber sensory neuropathy,” said Monaghan. “Basically, my brain is sending signals to different areas of my body, like shocking pain or cold water. It’s my brain reading the signals wrong, [the] pain signals wrong. So my brain thinks there’s all this pain going on, but my brain technically is creating it.”

“I was elated that I hadn’t lost my mind. I was so happy that this thing had a name and I didn’t give up. And I asked for that one more appointment.”

With a diagnosis and treatment in hand, Monaghan said her pain started getting less and less, until “the pain sensations started disappearing.”

“It was actually pretty scary at first. At first, I thought maybe I was dying because I wasn’t feeling any pain.” She said she still feels pain every now and again, but nowhere what it was like before and feels incredible blessed to still be able to live her life.

“I think the biggest thing is as soon as I got better, our children became parents and so I became a grandma. And it’s the best thing that’s ever happened to me. It is so nice to be able to spend time with them. Now, their children, I just feel so blessed, I feel super blessed that I got this opportunity and to this day, I won’t waste a minute of it.”

When it comes to MAiD, she said the first thing she did was rip up her application once she got better. But said having done the research, she knows if she ever needed it, she would use it.

“I’ve been really honest with myself and my role in my head is if the medication stops working and if I experience pain 24/7 for a year straight, I will apply again,” said Monaghan. “I know that I’m not down for another ten years if nothing else works, because I tried so many things right. So I pray every day that it keeps working.”

“I don’t know if I ever applied, if I would have been accepted or not, but I would have found a way because at that point we were all trying to find a way to get some relief.”

She added having access to more funding or programs that might have helped alleviate her pain could have delayed her looking into MAiD.

“I just believe that there is a shortage of workers and there’s a shortage of money into those programmes. Otherwise they would have been available for me and my friends and probably made our journey a little bit easier.”

“You think that you have access to these extra services if you have a disability. But it’s very hard to get them, saying they’re there or having them available, they’re two different things.”

When asked about how she would react to someone who may judge her for considering turning to medically assisted death, Monaghan said, “What I was going through was like an invisible illness, no one could tell on the outside all the pain that was happening on the inside. So I say to those people, unless you’ve been through it, you don’t have a right to judge at all.”

“Seventeen years was a long time and it was difficult. And I’m not going to mince words. That was a long time of my life and I don’t ever want to experience that again, ever.”

“When someone says, ‘How are you feeling?’ I can say I feel great and mean it. And I love my life now and I appreciate it in a completely different way.”

Monaghan said she will continue to help others dealing with chronic conditions, regardless of what choices they decide to make.

“My mission now is just to support people, regardless of whatever choices they’re making. For me, it doesn’t matter. They just need like acceptance in someone that listens. Listening is a really important tool to help anyone with a disease while they’re dying or in chronic pain.”