You never really know what could be waiting around the corner for you. If I had been asked last year where I saw myself being in a year’s time, my answer would have been very different from what actually happened. Growing up with a disease like CF, I knew I was different, but I was convinced that I could hide it well enough that nobody would ever know. As I became older, the effects of the disease began to affect me more that I had ever prepared for. When I turned 17, my health started noticeably declining and I realized at that point, how devastating the disease Cystic Fibrosis actually was and my ability to hide it, ended.
I spent my 18th and 19th birthdays in hospital. I had gone from very few hospital admissions to dozens of hospital admissions trying to get control of the lung exacerbations that never truly went away. I would get a bit better and go home, but it wasn’t long before I was right back in the place I dreamed escaping from each night when I closed my eyes. Suddenly my life wasn’t mine anymore; I became a prisoner in my own body. My mind was young, full of hopes and dreams but it was stuck in a sick body that constantly let me down.
At the ripe old age of 21, I went into respiratory failure and spent 74 days in hospital (40 in ICU) learning how to live again. That admission changed who I was as a person. I made a vow from that day forward I would do everything in my power to raise money and awareness so no other child or family would experience the nightmare than my family and I faced in 2013. I did a couple of speaking engagements, just enough to realize that I was terrified of public speaking. I captained a team at the Walk to Make Cystic Fibrosis History and as of the 2017 walk, our little team built of family and friends (Team M&M) has raised over $90,000.
Living with Cystic Fibrosis can be so overwhelming, especially for a young woman growing up in a world that idolizes beauty and appearances above ambition and determination. In January 2016, my lung function was very low; 22%. I spent 8 weeks in hospital on aggressive IV antibiotics; that was when I was first introduced to my kryptonite, methylprednisone.
For those of you who don’t know much about methylprednisone…consider yourself lucky. It is an aggressive steroid used to decrease inflammation in the lungs making breathing easier. On paper that sounds great, terrific, sign me up for that….but….when you read the teeny tiny fine print about all the side effects, you have no idea what you’re up against. I was on methylprednisone for 14 months, and in those 14 months I lost who I was.
In 14 months, I gained 75 pounds, developed cataracts, osteoporosis, severe muscle deterioration, blood glucose levels were off the charts, terrible stretch marks, and if I got 2 hours of sleep a night it was a miracle. I understand the effects of the drug were out of my control and that the steroid did the job I needed it to, but it came at a very high price. I never really paid much attention to what other people thought about me, until I started noticing strangers staring at me at the train station or in a store. It was a look that I can only describe as disgust. These people that had no idea who I was or what I was going through but had decided in that split second that I was overweight, lazy, and clearly had no pride in her appearance. I was yelled at for taking too long to walk up a set of stairs at Union Station (even though it was taking all the strength I had to climb one step at a time). People muttered hurry up, move, get out of the way as they pushed by me walking on Queen Street; I was going as fast as I could and the last thing I wanted was to draw attention to myself.
By the time I was at the 10 month mark of methylprednisone, I started to sink into a depressed place I had never experienced before. I had no idea when this funk was going to go away; maybe this was the new me. I began cutting myself off from my family and friends and spent many nights alone with only my thoughts.
Ryan Wilson, President and CEO of thyssenkrupp Elevator (Limited) Canada was the light at the end of that very dark tunnel I was been trapped in. He asked me to join the thyssenkrupp team, as he announced that the company would be taking on their first corporate charity initiative and the chosen charity was Cystic Fibrosis Canada. I really had no idea how this new initiative was going to be received by thyssenkrupp employees, but I’m happy to report that they embraced the initiative and exceeded my hopes.
As I sit here and write this today, I am celebrating my one year work anniversary since I began this journey in October 2016. In one year, this company has accomplished so much, and I am so proud to be a part of their team. When this project was initially launched we were optimistic and set our company goal at $20,000 for the year. It brings tears to my eyes and makes my heart skip a beat as I say that we have now surpassed that goal five times over. Collectively, we have raised over $100,000 in 12 months; a goal that nobody expected or even dared to dream about.
I have had the opportunity to plan nationwide events to raise both funds and awareness for CF. None of this would have ever happened if it wasn’t for thyssenkrupp. It takes a unique employer to give someone with a chronic illness a chance. I am so lucky that Ryan Wilson took that chance on me. For the first time, I wasn’t penalized because of my health, but rather embraced and supported. I can’t explain the purpose I now feel waking up and knowing that what I’m doing could actually help make a difference in the CF world. It is because of the support I have been shown by Ryan Wilson and the entire thyssenkrupp family that I truly believe a cure is reachable in my lifetime. I am sure they will never fully realize the impact they have made on my life for how do you thank someone for giving you purpose?
CF will never be what I assumed it would be as I grew up; invisible and unimportant. My life was adjusted due to the fact that I have CF and the many, many obligations and responsibilities that entails. I wake up every day to the same routine of IV antibiotics, masks, physio, and countless pills…but I have embraced it as my new norm. This year has taught me that this world is full of good people who see past the things you hate about yourself and it is because of those people that I find the strength to fight on every day.
It hasn’t been an easy life, and it hasn’t been perfect but it has led me to where I am today and I have to say I couldn’t be happier. People say it takes a village to raise a child. I am 25 years old and just learning it doesn’t take just a village…it took family, friends, a love, co-workers, strangers, and everyone in-between to make me the person I am today. I don’t know what the future holds for me, but I know that I will fight it head on and I have an army standing right behind me every step of the way.
To my family, friends, fiancé, Ryan Wilson, coworkers, and all other people who have helped me make it to this place in my life, thank you. In one way or another you have helped mold me into the person I am today and I am grateful to every one of you. I dream of the day we can all scream at the top of our lungs “GOOD BYE CF, YOU’RE HISTORY”. Until that day comes, I will do my very best to make every one of you proud as I continue this fight.
I am 100% confident I know exactly what I was put on this earth to do…BREATHE…KICK ASS…REPEAT.
– Meaghan MacRury