An Enviable Legacy - My Dad's Story of Donation

“Your father will never wake up.”

On a hot July afternoon in a cramped family meeting room at Sunnybrook Health Sciences Centre, those six words changed my life forever.

Only five days before my Dad, Malcolm Higgins, had been in a single-vehicle car accident. He sustained a critical brain injury and was in a coma. At first, my siblings and I were hopeful. Over the course of the next few days, we quickly became familiar with diffuse axonal brain injuries, EEGs, and how the Glasgow Coma Scale worked.

When the doctor delivered the grave prognosis, I didn’t believe him. Surely, my Dad would recover. He was strong, he was healthy – he was just 49 years old.

By day, he was a paralegal and professor at Everest College. He was well-respected, passionate and intelligent.

By night he was a rock star, singing in one of the best AC/DC tribute bands in the country. He was incredibly talented musically and tried as hard as he could to pass it onto my three younger siblings and I.

As youngsters, instead of reading bedtime stories, he sang to us. The four of us knew the words to AC/DC, Steve Miller Band and Guns and Roses before we could recite the alphabet.

He was full of life, energy, and ambition and would never have wanted to live hooked up to machines indefinitely, completely incapacitated. We made the decision to withdraw life support, but I never imagined at 24 years old, I would be the one signing the papers to do it.

Shortly after we received the news, my siblings, my dad’s father, sister and I were approached by an organ and tissue donation coordinator who talked about the possibility of donating Dad’s organs.

The choice to donate Dad’s organs was an easy one – he had always discussed it with us and had registered to become an organ donor should the opportunity present itself.

For us, it wasn’t a difficult decision to make, just a decision made during a difficult time.

The night we let my Dad go, three of his four kids were by his bedside, along with his older sister. We brought in our iPod, played AC/DC and waited. In order for him to be eligible for donation, he had to pass away within two hours of being removed from the ventilator.

The wait was agonizing and as my Dad slowly slipped away before my eyes, I thought about the irony of the situation: he was in one of the best hospitals in the country and the very people who we had hoped would save him were standing around waiting for him to die. It just didn’t make sense.

Thirty-three minutes after we began the process, my Dad passed away. His final heartbeat was perfectly in tune to the last note of Thunderstruck, which was always the finale at his shows.

On July 14, 2010, seven days after his initial accident, I made the most difficult phone call of my life and told my grandfather his only son had taken his last breath. It gave me a small bit of comfort knowing that simultaneously, three other families were receiving the best news of theirs.

I knew donating his organs was the right decision and it meant we were honouring his wishes. I knew lives were going to be saved because of him. What I didn’t appreciate was the profound the impact his donation was going to have on my own.

A few weeks after my Dad passed, I read an article in the Toronto Star about organ donation. I was amazed the impact this gift had on the recipient that I reached out to the reporter to thank her for the piece.

Two months later, she emailed and asked if my family would like to be featured to talk about the donor side. I couldn’t let the opportunity pass.

Together with my sister, we told my Dad’s story: how he told us his wishes in advance; that he carried around a blank donor card in case he met someone who wanted to consent on the spot; and about the young child with leukemia he helped save by donating bone marrow so many years prior.

When the story was published, I was hopeful it might inspire other families to make the same choice we did.

Five months to the day Dad passed away – December 14 – I received the most incredible Christmas present: letters from Dad’s double lung recipient and two of his family members. Trillium Gift of Life Network facilitates anonymous contact between recipients and donor families. Neither side is obligated to write a letter or reply to anything they’ve received but it gives an opportunity to reach out if you wish.

Here was his letter to us:

Dear Donor Family,

As I begin to write this letter of thankfulness, I have mixed emotions. I am so very sorry for the loss of your loved one who has so generously donated their lungs for transplantation.

I am so grateful to be the recipient of your loved ones generous donation. My quality of life has improved dramatically, as has my wife’s – my caregiver.

Prior to my operation, I had been on oxygen since 2003. Almost immediately after my operation, I did not require oxygen for life support.

I am so grateful to you, the Donor Family, for donating this precious Gift of Life to me.

Now I will be able to continue my life in good health with my wife, family and friends.

From a Grateful Recipient 

For a long time, I was angry my Dad had been taken from me. I was frustrated because I felt he had so much life left in him. I was angry at him, at the accident, at fate, at everything surrounding his death.

Getting these letters really touched me and proved to me what I knew all along: my Dad did have a lot of life left in him. His lungs give every single breath to a man, allowing him to hug his wife, kiss his daughters and walk up the stairs without gasping for breath. His kidneys saved two other men from the rigorous routine of dialysis and his eyes have given sight to two others.

After receiving the letters, I knew I had to become involved and continue telling his story.

I began volunteering with Trillium Gift of Life Network. The first year he was gone, his story was featured in several newspapers, placed second at a film festival in California, and was shared at more than 10 different speaking presentations. 

We also finally gathered the courage to write back to his double-lung recipient and within two weeks had another set of letters from him. This time, he shared he was visiting his family for the first time in Alberta in 10 years and that he was finally able to sing like he used to. He and my Dad had more in common than we realized.

A year-and-a-half after my father’s death, I was invited by a fellow volunteer, who was a recipient, to Toronto General’s annual lung transplant party. Merv thought it would be appropriate for me to learn about another piece of the donation puzzle – the wait list.

There were about 100 people at the party – recipients, family members, those waiting along with staff and physicians. Merv was walking my sister and I around the room, introducing us to nearly everyone. Just when I thought we were finished, he introduced us to a man named Richard. He was a short, older gentleman and looked to be about 70 years old.

He indicated he was a recipient – his transplant was July 2010 – and had written to his donor family. My sister and I were touched and thanked him immensely. After all, the reason I became involved was because the recipient had the courage to reach out to us a year before.  

“Do you know much about your recipient, because I know a lot about my donor”, he said to us. “I know he was a former police officer, he had four kids and he sang in an AC/DC band.”

For a moment, I thought I might pass out. My sister started crying as Richard slowly connected the dots. His chin began to quiver and his eyes filled with tears.

I managed to find my voice and said, “you have my Dad’s lungs.”

My sister and I with Richard.

Tears running down his face, he grabbed mine and my sister’s hands and pulled us through the crowded room to where his wife was standing.

“Joan, meet our donor daughters,” he said. She, too, couldn’t believe it.

Through our tears and hugs, we quoted the letters back and forth to make sure Richard really was my Dad’s recipient. After a couple of minutes, there wasn’t a doubt in our minds it was him. As it turns out, he and his wife live 20 minutes from my house.  We’ve stayed in close contact and even had the opportunity to meet his two daughters, who are my father’s age.

Since meeting Richard in December 2011, I’ve continued with my volunteer work. I wrote an article for the United Kingdom's Live Life Then Give Life organization, who featured my Dad, a Scotland native, on their website. I started a group called the York Region Gift of Life Association to help raise the low registration rates in our community. In less than a year, we’ve attended or participated in more than 50 events and presentations and recruited a force of 30 amazing volunteers. We also spearheaded the largest organized registration drive in Ontario’s history, supported from all three levels of government. I’m humbled to be a very small part of what this inspirational group accomplishes – they truly are incredible.

Dad always said his four kids would be easily able to surpass his achievements in life and that we would amount to greater things than he ever could. I beg to differ.

There is no greater gift you can give someone than life itself, and he’s done that three-fold.

The man whose selfless decision saved three lives and gave sight to two others; the man whose selfless decision has been featured in three countries and dozens of articles; and he man whose selfless decision motivated his four children and countless others was my father and for that, I couldn’t be more proud.

April 22 to 26 National Organ and Tissue Donation Awareness Week. Right now, there are nearly 1,500 people waiting for a life-saving transplant in Ontario. Please, please register your consent at beadonor.ca and speak to your family about your wishes.

Perspective: Time

The past few days have been a bit overwhelming.

Mike and I are moving tomorrow, our house closes in just over a week and I’m heading out to Victoria, BC for my second and final three-week residency as part of getting my BA in Professional Communication on April 27.

I also hit the ice for the first time in ages and surprised the hell out of myself by making an adult skating team earlier this week. However, all of these things combined don’t take up half the space in my mind as my Dad has the last little while.

Perhaps it’s because Sunday was the anniversary of my sister and I finally laying him to rest in Scotland, where his ashes were scattered with his Dad's and Mum's. Whatever it is, he seems to constantly be on my mind, more so than usual.

When I think about my Dad, I usually think about time.

In the initial days and months after he died, I remember trying to bargain with whatever greater power was listening to just have five more minutes with him. In my naivety as a 24-year-old broken-hearted, grieving daughter, I decided at one point it would be worth giving up the next 40 years of my life – yes, 40 years – if it meant I could talk to him just one more time.

In the moment, I meant it with every morsel of my being. Now, hindsight and a little perspective have allowed me to see how ridiculous I was for wishing my life away.

Some days, I feel like the last time I spoke to him was 100 years ago. These are usually the same days I torture myself by thinking about how I’m slowly forgetting him.

Other days, it’s almost as if I’m right at his bedside at Sunnybrook. His room – if you could call it that – was dark and gloomy. The unit had patient beds lining the windows and a “pod” of beds in the middle separated by curtains and concrete bricks painted a light colour. I remember how much it really bothered me that he didn’t have a window. The only light that ever touched his face was the glow of the monitors beside his bed that beeped every few seconds.

I can feel the cool air of the unit, the smell of plastic and hand sanitizer, and the sound of other families praying, crying and whispering at their loved one’s bedside. One night before we let him go, I crawled onto his hospital bed and lay beside him. I remembered him cuddling with me as a little girl many times, usually in an attempt to comfort me after a nightmare. It was my turn to comfort him.

When I think about it hard enough, I can still feel the crispy hospital blankets on my arms and his stiff pillow under my head. I grabbed my iPod, put an ear bud in each of our ears and played Joe Cocker’s ‘You Are So Beautiful’. I can still feel my Dad’s warm hand in mine as I held it tight, desperately wishing he would squeeze it back.

Right up until his accident, he’d tell me how this was “our” song. Once in a while, I’d even get a voicemail about it. His voice shaking from trying to hold back tears, he’d tell me that it came on the radio and it reminded him of rocking me as a baby. He always ended by telling me how proud he was to be my Dad.  

These days, it’s like no time has passed at all.  But I know otherwise.

He’s been officially “home” for a year; this July he’ll have been gone three years; in 21 years, he’ll have been gone from my life longer than he was a part of it. I know it sounds like a long time, but the past three years have flown by and it seems time picks up speed the older I get.

I’d be lying if I said that during the past 978 days since he took his last breath that I hadn’t wished for him to come back at least once.  I know it’ll never happen regardless of how many years of my own life I’d trade. (Thankfully, I’ve grown out of this bargaining phase….)

This time without him has allowed me to see that life continues to move forward, even if I insist on standing still. Since that fateful day in July, I found strength I didn’t know I had and I finally feel like 

I’m keeping pace with my life instead of watching it go by – it’s almost, dare I say it, empowering. I'm in control once again and for a control freak someone like me, that's a big deal.

My siblings and I talk often about all of the things he's going to miss - weddings, birthdays, Christmases, grandkids, and graduations. But just because he's going to miss those things doesn't mean we have to, too. 

Although I’d give almost anything to have my Dad back, I can’t spend the rest of my life wishing time away and looking backwards. Aging is a gift that you only get through living and I know too many people who have been denied this privilege.

If I learned one thing from my Dad, it’s to enjoy every second and live every moment just like he did. For him, it came in the form of spontaneous road trips, random trips to the Bulk Barn, meeting after work for appetizers and cheap beer, singing with his band, and loving his kids.

For me, it means following in his footsteps and doing what makes me happy. Today, it comes in the form of playing AC/DC in my office and remembering the last time I saw him sing. Tomorrow, maybe it’ll mean finally getting back to writing that memoir I started six months ago… Or maybe not.

One day at a time.

The Glory Days Are (Officially) Back!

At around 9:30 last night, after refreshing my inbox over 500 times during the course of the day, the email from Ice Fyre finally arrived. When I opened it and read the second line, I nearly cried from excitement:

The Ice Fyre Coaching staff are proud to offer you a position on the Ice Fyre Adult II Team for the 2013-2014 season.

After an eight-year break and having convinced myself I’d never be able to skate again, I’m officially on a synchronized skating team. I feel like a kid on Christmas morning.

Given how many people were at the second try out, I was worried about my chances – there were only 20 spots and many of the skaters were really talented. The email itself said the decisions were difficult. I certainly didn’t envy the position the coaches were in.  

That being said, I can’t begin to describe how elated I am to be part of the skating world again.

The past two weeks have reignited a flame I thought had long burnt out and it really does feel amazing.

I'm looking forward to reconnecting with the girls I skated with before and meeting the new members of our team.

With three competitions planned for the 2013/2014 season not including nationals, we have a lot of work ahead of us and I can’t wait to get started. Our practices begin in August so that gives me plenty of time to come back down to earth from cloud nine and get myself in shape.

Bring on the skating tights, blisters, Sunday night practices, run-throughs of the program just “one more time”, competition buns, sparkles, and Peterborough Petes hockey parties memories.

Look out synchro world - Whitby Ice Fyre's Adult Team is ready to top the podium!

Reliving The Glory Days: Round 2

Last night, we had our second of two skating try outs for Whitby Ice Fyre’s adult team.

Since our first session last week, I’ve been thinking nonstop about the possibility of skating again. I’m borderline obsessed.

On Saturday, I went to a figure skating store to buy tights and gel socks. I’m a serious figure skater after all - tights and gel socks are necessities.  

Although I knew exactly what I was looking for, I found myself wandering around the store touching the skating dresses, fiddling with the sparkles, playing with scrunchies, and trying out the skating 

bags.

After 15 minutes, I finally went up to the cash and word vomited all over the poor cashier about how excited I was to skate again “because, like, it’d been so long”. He politely nodded while he rang me through but the look in his eyes said it all – this woman is I-N-S-A-N-E.

All day before the try out, I had nervous butterflies. I thought about what I was going to wear, what time I should leave, I Google-mapped my route even though I’d been there 100 times, and set my skating bag by the door.

I tried on two different outfits and I hummed to myself while I did my make-up – yes you read that correctly. 

As I brushed my hair, I began to laugh uncontrollably. Tears streaming down my face and my make-up essentially ruined, I realized I just did my make up before a skating practice. I barely have time to do my hair and make-up before work but here I am applying mascara and eye liner before a work out. Apparently my inner poptart isn’t totally gone. I’m not sure whether to be embarrassed or proud.  

(Photo credit: Britta)

When I arrived at the arena, I felt at home again. Even the sight of the Zamboni resurfacing the ice gave me goosebumps. (what?!)

The cool, crisp air was almost intoxicating and this time, I felt more in control and more confident in my ability. 

Although I struggled with some of the movements we were asked to do, I felt like I was on a high. In fact, skating last night almost made me delusional.

It wasn’t until this morning that I thought about some of the things we were asked to practice and realized that I probably didn’t execute them as well as I thought I did in my mind. Field moves like Ina Bauers and spirals were much more challenging than I ever remember them being.

In my mind, my spiral looked something like this:

From everyone else’s perspective, this was probably more accurate:

... But less canine and more human. You get the idea.

I think there must have been something in the air. Or perhaps I’ve just become a full blown addict.

As soon as I got off the ice, my muscles began to ache and fatigue started to set in – I loved every second of it. With my 2003 Gold Medallion competition CD cranked the entire way home, I realized how badly I wanted to make the team. 

I know I have a long way to go to reach even half of the level I was at before in terms of flexibility, confidence, skills and strength but I’m committed to doing it and know I can bring myself to reach a level of ability that would allow me to a great member of the team. Let's hope the coaches agree.

We were told offers will be emailed over the next day or so I’ve been patiently waiting for mine and haven’t given it a second thought. 

Who am I kidding, I'm (nearly) pulling my hair out. I hate waiting for things. In fact, I may or may not have refreshed my inbox 276 times already waiting for the message….

Stay tuned!