Dr Kelly Fleming

Today is my 50th birthday. It is a bittersweet day for me. I never thought I’d live to see 50.

Let me share with you why this is a bittersweet day for me.

At the age of six, my parents took me to the Emergency Room as I was literally dying in my Mum’s arms. The doctor most likely gave me adrenaline as I remember two large hypodermic needles in each of my inner thighs and I left the ER as if nothing was wrong. Thus began the search to find out what the underlying medical condition was that had affected me in such a way. My life of growing up in hospitals had begun. The doctors concluded that I had SJIA.

I have lived my entire life with an expiration date. My parents were given timelines throughout my youth and teen years. I was not expected to live. In the ’70s and the ’80s, the survival rate for kids with SJIA and MAS was very low.

One year I was hospitalized for several weeks in December. There were complications related to MAS and my liver and spleen were inflamed beyond manageable bedrest at home.

I remember there was some sort of organization that came into the kids’ ward at the hospital to give out Christmas toys. As irony would have it, I got the game Operation!

The doctors and nurses liked to discharge the kids for Christmas, if possible. They told my parents late in the afternoon of the 24th to take me home and bring me back on the 26th. I remember being home. My grandma had bought me a thick pink bathrobe (something I would never usually wear). I folded myself up in it and spent the following day in my Dad’s swivel rocker. Remember those big round chairs that you could get dizzy in, especially if you had a sibling who thought it would be neat to spin it while you were in it? 🙄😅At the same time, it was a rocker. Talk about a cheap tilt-a-whirl ride!

Anyway, I spent my day curled up in that bathrobe in my Dad’s chair, trying to keep my eyes open. I couldn’t eat, I didn’t want to sleep, there was just no energy left for me. But I was home with my family. And yes, I went back to the hospital in the morning of the 26th.

At the age of 20, I went into a coma. The doctors told my parents to call my brother and any other relatives they wanted there at the ER because I was not going to survive. My heart had finally been attacked by SJIA which left me with pericarditis and an irregular heartbeat.

The doctors were wrong. I woke up from my coma 5 days later. I had a trip planned to go to Chicago for 3 weeks and I had my plane ticket. I came out of the hospital on Friday and I was on that plane on Sunday! Nothing was going to stop me.

Many, many years have passed and with them have been visits to the ER or hospital stays. Each time, never knowing if I would leave the hospital and go home.

December 26th, 2007, I rung up my folks and said something was wrong. They raced to my home and took me to the ER. I was there for almost 2 days in the ER as they tried to figure out what SJIA was attacking in my body. I left the ER, apparently feeling much better but with no explanations from all the tests as to what was happening.

I thought I had dodged a bullet. But on December 31st, I rung up my folks again and they rushed me back to the ER. I remember seeing the doctor say to my Dad, “I don’t think she’ll make it this time.” I saw my Dad say, “she’ll be okay.” I turned to the nurse who was starting several IVs and I remember telling her, “I don’t like needles.” She gently placed her hand on mine and said “neither do I.” And then I woke up 2 days later and headed home as if nothing had happened.

Two months after my 40th birthday, I was diagnosed with breast cancer. Four years and four surgeries which included a bilateral mastectomy, and the removal of three additional tumours that came up and spread quickly in my breast tissue. My final surgery was one month following my 44th birthday and I’ve been cancer-free since that time. Although my battle with breast cancer was over it came with long-term physical changes.

This birthday is extremely bittersweet. I’m so excited to still be here. But my heart is aching. The two people who fought for me to make it through each day are only here with me in spirit.

My Mum had a massive heart attack when she was 75, in 2015, two weeks prior to my third surgery, and immediately passed away. The day after my 47th birthday, my Dad had a heart attack and passed away 5 weeks later following complications from a quadruple bypass at the age of 80.

My parents never really celebrated birthdays but I can guarantee, if they were here, we would be celebrating so much!

I miss my folks. They rallied around me all my life. They supported, albeit not always wholeheartedly, all of my choices in life (and yes, I’ve made wrong choices just like everyone else). They celebrated my achievements in sports, academics, and parenthood.

The thought that I would still be alive at 50, wasn’t something they ever imagined possible. And honestly, neither did I.

Through the grace of God, I’m still here. I’ve beaten every expiration date I ever received and now I know I have something to finish and that’s why I’m still here. What that may be? I don’t know.

Perhaps it’s to tell my story. Perhaps it’s to have the opportunity to be one more “voice” in the worldwide Disabled Community.

I look forward to many more happy years.

Today I celebrate with a smile and also a tear. I wish my parents were standing beside me, so I could look into their smiling eyes.

Dedicated to my Mum and Dad who always had faith in me and believed everything was in God’s hands.