A hard lessonI would like to dedicate this blog entry to a dear friend of mine who has Cystic Fibrosis who will remain nameless. I pray that it may help you realize just how beautiful life can truly be.
What child or teenager wants his friends to know that he has a disease? A disease that robs you from a lot of independence and may put you at risk for being bullied or even neglected at school. Nobody wants to be considered “different” or a “freak” in this world, so letting people know that we have an illness, something that we actually have no control over, can at times be very overwhelming to deal with and most of us just choose to keep our problem to ourselves. In fact I know a couple of CF people who went through all of the school system and never told a soul they had CF, and now wish they had, as they could have used the extra support. The problem with not telling anyone is that we are more inclined to experience peer-pressure to try certain things that people with CF just shouldn’t try. Binge drinking and casual drug abuse can prove fatal to someone with the disease, a lot sooner than later.
I was very fortunate to have a mother who taught me to be open and honest about everything in life. I never kept my disease a secret and to be honest, often used it to seek attention or avoid being bullied. “Don’t pick on me, I’m the sick kid! Remember!?”
All my friends knew about my CF, and though they may not have understood what it really was to have Cystic Fibrosis, they never made me feel strange or different for having to take pills at lunch time. Or use the bathroom more than a normal human being should have to use the bathroom! But not everyone is blessed to have had such a great support system at school. To this day those girls still under estimate how easy they made it for me, and how comfortable I felt being myself in front of them. My true self. The self that had to take puffers and pills during recess and lunch. I can’t imagine having ever gotten through without the kindness of those girls.
Cystic Fibrosis is a progressive disease. What does that mean? It means the longer we live the harder it gets. The longer we live the harder it is for our lungs to operate properly. The longer we live, the higher the risk of dying. Sounds silly hey? Obviously the longer you live the closer you are to death. But ‘normal’ people’s reality is not to die before the age of 40. Cystic Fibrosis is also a disease that your longevity truly is in your own hands. It’s simple; if we don’t take proper care of ourselves, we die. We are taught this from a very young age, and we are reminded frequently when we have our quarterly check-ups with the CF team. Death is something introduced as a young as when you have CF. And sometimes it causes some CF sufferers to do crazy things.
My biggest regret in life, actually let me rephrase that as I do not believe in regrets. But what I WISH I HAD DONE DIFFERENT when I was younger was care for myself the way I was supposed to care for myself. I’ll give you an illustration. You go to Wal-Mart and you buy a bread pan. (The bread pan will symbolize the lungs of a person suffering from Cystic Fibrosis) When we are born, we have a new bread pan. No dirt, no dents, just a new bread pan. Every time we get an infection there is a certain amount of damage that occurs that we can never get back. So we take a hammer to our bread pan and infection after infection we put dents into that pan until there is no room left in the pan. That’s the nature of my disease. So every time I get the flu or a cold, another dent. Every time I hospitalized, an even bigger dent. You often hear me talk about on my Facebook page my FEV1, or my lung volume. Well, that percentage is what’s left in my bread pan. Currently mine is around the 40% area. So essentially I am using 40% of my lungs. However, daily cleansing of our lungs via physiotherapy and medications can help improve the lung function and prevent infections from occurring.
As a young teenager I didn’t want to hear talk of doing my physio or taking my pills. It was all too much for a person of my age to be doing. I had friends and other interests that I wanted to occupy my time. And rightfully so. What child wants to stay home from the dance because it won’t allow him time to care for his disease!!!
Had I cared for myself the way I should have, who knows how much better health I would be in today. I cannot worry about that. What I can worry about and do have complete control over is what I do today. I have been given a gift. A life. And my existence here is dependent on how precious I view that life and how important it is to clean out the insides of my body on a regular basis. You know what, sometimes CF is a royal pain in my ass. I do hours of therapy per day as well as take 50+ pills just to survive. BUT I AM SURVIVING. We often times spend so much time complaining about our lot in life, that we forget to take the time and think about the blessings we have. I could have been born in a third world country when the survival rate right now for someone with CF is still 7 years old. I am able to have quality health care and a team who are 100% focused on making sure I am the healthiest I can possibly be.
So what’s my message to kids and young adults out there battling CF?
It’s this;
Don’t be an idiot. Learn from my mistakes. When you get to, (if you make it to) your mid-twenties, you will realize how much your mother was right. How she only wanted the best for you and for your life to be as long as it can possibly be. You think it’s cool to fit in with your friends and smoke weed every once in a while? Well how does sleeping inside a coffin forever sound to you? No doctor I have met yet said that that kind of behavior is acceptable to someone with CF and I challenge you to find one. If you are stubborn and fail to care for yourself now while you are young and in your prime, you will forever wish you had done things differently. I am facing death now, was it because I didn’t look after myself when I was young? Who knows. But I do know that I wish someone could have given me the slap in the face I needed to wake me up and realize that though this life sucks a lot of the time because of our having Cystic Fibrosis, this life can be beautiful. And will be if we make the right choices. So smarten up will ya!? You have a lot to offer this world. Just make sure you give the world their max time to realize it!
If someone had to have been able to show me how beautiful, wonderful and awesome my life is right now when I was younger, I would have done everything in my power during my youth to ensure that I could have just one more day. Don’t take life for granted. Be grateful for the gift of today. If you’re scared that by you taking care of yourself properly is not going to make you blend in with your friends, let the fear of dying young be a greater fear. If you are worried that taking care of yourself may rob you of a lot of the joys normal people have, let the worry that your loved ones are going to have to face not having you around.
What makes us weak, is what makes us powerful! And with the proper attention given to our illness we can not only lengthen our lives, but we can ensure that we will not die before we have to. We can ensure that we will live a full life, one filled with joy, happiness and above all, LOVE.
I hope this blog entry has awakened in you a fire to take better care of yourself. Talk to your local CF team, tell them that you are ready to make a change. They will do everything they can to help you out. But it all starts with YOU! Until next time my friends……
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow’” ~ Mary Anne Radmacher
Peace and Love,
Jamie Leigh Francis
xo
No comments:
Post a Comment