As I mentioned in an earlier blog, knowing I was going to die at an early age was something I was introduced to at a very early age. So growing up, I was always surrounded by death. Every time I looked in the mirror, or saw a CF ad, or heard of someone with CF losing their battle, it was everywhere!
Being surrounded and always feeling claustrophobic by the thought of dying, it made it very challenging to view the future with optimism. In the 80’s, a child born with Cystic Fibrosis wasn’t expected to see kindergarten. Now, the average age of someone with CF is 47!! But not everyone is that lucky.
My first real memory of what death really was, was when I was just 12. A very good friend of mine, Robyn Hancock, who was a CF victim passed away while I was in the hospital. I used to go to her room and she would let me jump on her bed. Her father was especially nice to me, always handing me a 20 or 50 dollar bill. But when she died, something changed inside of me. Something I would carry forever; a constant shadow of death. And her death was the first of many friends I would lose to CF.
It’s really difficult making friends with CF. The reason is because neither of us are guaranteed tomorrow, especially with CF. And our health can change with the snap of your fingers. You could be 20 years old, living the good life one day….the next, on life support fighting to survive. I’ve always struggled making friends with CF. I would never want to get too attached in fear that I may lose them. But that all changed when I met Lisa, a 34 year old at the time who changed my life, forever.
Lisa, who also had a sibling with CF attended the same church I did. But the way she viewed her CF had a huge impact on my life. She always lived every day to the max. And she worshiped her son, Trisden. The three of us became very close. I would spend nights at their place and they would pop by my house for dinner dates. But the good times didn’t last long, because in the fall of 2006 Lisa took sick. At first we all thought it was going to be a normal, standard hospitalization. But that dream quickly turned into a nightmare. I watched my friend die over a three month period. She went from a hefty 120lbs to about 80lbs. I was by her side as much as I could, finding the pain at times to much to bare.
On December 26th, 2006, Lisa took her last breath.
I fell to my knees upon hearing the news. One reason was because I had just lost a very dear friend of mine. And because I also knew I shared the same fate. It was the first time as an adult that CF slapped me in the face. But her death was not in vain. It impacted me in a beautiful way. Because I knew when she died and I promised her that I would fight. I would try and survive as long as I possibly could. I am still trying my hardest to hold to that promise.
After losing Lisa, I shut down and closed the fellow CF world out of my life. I just needed time to digest things. I thought then that I would never ever want to get close to anyone else with CF, that it would be too hard on me emotionally. But then I accepted a position with the Canadian Cystic Fibrosis Foundation (known now as Cystic Fibrosis Canada). I would sever as the Regional-Vice representative for the Atlantic Provinces. In my role, I would have to meet with other young adults with CF and discuss issues that we felt were important and needed to be addressed in the CF community. The blessings I received from the group were amazing. I met some of the most amazing people. People who I remain friends with to this day. People who give me courage and hope to continue my journey. Three of them were transplant survivors; one of which won a Gold medal in the transplant Olympics. These people taught me that, yes, life happens and we do lose some fighters, but there are also those who beat the odds and embrace life’s challenges to better themselves. It was rewarding being amongst the group because they understood how I was feeling and could empathize with everything that I was experiencing in life. Almost as if we were all of the same body. The energy was amazing!
At times it’s difficult to keep in touch because you see on Facebook that this one isn’t doing so well. Or you hear that so and so is into drugs and is going downhill and you wonder why they are acting so foolishly. But for the most part, being a part of such a close knit community of people has been a huge blessing. In fact, many of the people in the group helped me make the decision to get a lung transplant. They have been there. They made the decisions too. They never once made me feel like their choices had to be my choices, but gave me great perspective.
It is hard living with a disease that 1 in 2 people won’t live to see 25. But it’s a blessing in disguise. We as a group live every day to the fullest, and face the fears of everyday together. And the blessings I have received from knowing all of these hero’s far out ways the temporary pain of losing them. Because they would all want their life to be celebrated for being the amazing person they were, not the disease that plagued them. It also makes me appreciate everything and everyone I have in my life, because you never know when any of us are going to lose what’s most important to us……..those we love.
I would just like to say, even though I am surrounded by so much loss and death, and I am facing death every day…..I have never felt more ALIVE!!
“A man who won’t die for something is not fit to live”
~ Martin Luther King, Jr.
Jamie Leigh Francis
xo
