Thanks to social media I am friends with many, many CF’ers from across the world. They comprise of kids, teens, older than me, younger than me, transplanted, some are parents but the demographic that stumps me most is the early 20-ish CF’er.
I must preface this blog by saying I was once a 20-ish CF’er.
In my early 20’s I was half way through my first degree, I had moved 7 hours away from home to go to university at the age of 18. I jumped into the university experience with both feet and my eyes closed. I went out drinking 4 out of 7 nights a week. I had a terrible diet that was dominated by coca-cola and mars bars. I’m not sure anything healthy hit my body until my 4th year. I wasn’t symptomatic with my CF so I didn’t have a routine. I didn’t need any inhales. I took enzymes (when I remembered) to digest my food. Truthfully I had my head in the sand and I was ignoring the progression of my CF. I was an asshole with regards to my health. I just brushed it aside until March of 92 when I was hospitalized for the first time, age 20. It was horrific for me. I had no family in Calgary, where I moved to and I had just broke up with my boyfriend because I found out he was cheating on me. I was in a dark place. I had to go through a bunch of CF firsts. Back in my day they didn’t do PICC lines, they did what was called a midline and it was done with no freezing. It was painful and super scary cause I had this foreign object in my arm delivering the very first doses of rat poison aka antibiotics to me to kill the over grown bacteria that created the reason why I was in the hospital. My lungs were brimming with mucous and I was, for the first time in my life, short of breath. I entered university with an FEV1 of 85% and during this admission it plummeted to 60%. Thankfully it rebounded, for the time being. Getting out of the hospital I just resumed my regularly scheduled life. I took my situation much more seriously a few years later.
My story is not surprising. Many of us CF’ers do the dumbest things in regards to our health and its for several reasons:
1. Its a way to ignore it and remain in control, even though that is the furthest from the truth.
2. Everybody has a time in their life when they rebel, sick or not sick. The early 20’s was my time to do that.
3. To fit in. To be what society thinks a 20 something should be.
4. Many of us leave our homes where our family had an eye on us and were there to pick us up when we fell. The independent life is hard to navigate when you are sick. This means I was super bad at taking care of myself.
Lastly, many of us are mad. Mad at being different, mad at being sick, mad at not getting to be normal, mad at the world.
This brings me to what I see in the younger CF generation. I see stupidity at a degree beyond comprehension. I see these kids getting their feeding tubes taken out because they think they can handle the nutrition needs on their own, only to need it placed again. I see them making the most ridiculous choices in regards to friends, I see them isolating themselves from their support system in order to demand their independence. I see them skipping treatments days on end. I see them over-partying, smoking, doing drugs and other dangerous behaviour. I have seen them struggle to find work because they thought that they didn’t need to go on to get a better education and settled for mediocre. I have seen them get pregnant only to need an abortion because they were too sick to carry the child, boyfriend was out of the picture and they had no money to support themselves let alone a baby. I see many of them acting like victims instead of warriors. It is disheartening. I hate watching this behaviour knowing that it will end badly, guaranteed. I say this with 100% confidence because CF does not stop killing us and it only worsens as we age.
Many of us will hit a rock bottom and at this time many of us will get our shit together and start to take our health seriously. No one else can take on this role for us so ALL of us have to take control over our lives, physically, mentally, emotionally and financially.
Not all of us are born into amazing supportive families, nor set up financially to handle this disease, especially those in the US. This just means the rebellion is easier to implement and the mistakes may be bigger with catastrophic consequences. I get it. Life is hard when the deck is stacked against you BUT being a victim will only make it worse.
Many of the younger generation rely on the hospital stays to tune them up so that they don’t have to start a daily routine of taking care of themselves without realizing that at some point those IV’s will no longer work and there are no more to use. Many are just waiting for the wonder drug to just cure them. This wonder drug I speak of does exist but with it comes a strict daily routine. You still get sick even with this drug so stopping your routine and your other meds because you think you are cured is ridiculous. The media has convinced these kids that they will be cured so they don’t have to take responsibility for themselves.
The majority of the current generation that is not afflicted with CF is self-absorbed, entitled and have no idea what its like to work hard. They think they should have everything their parents currently have in regards to a house and cars and trips and disposable income. They seem to forget that their parents have worked their lives for that level of comfort. Now add a kid with CF who may or may not have been coddled by their parents and you get the recipe for disaster.
CF is a full time job, especially as you get older with CF. This disease progressively worsens. It does not get better, there is no remission, there is no holiday from it. It eventually kills you even with a lung transplant.
The longer it takes the 20 something to come to terms with this the worse off their health will be. The correlation is lost on them. I have a super hard time when I see a 19 year old in need of a lung transplant. With the current treatment options available there really is no reason IF you are compliant with your treatments. There is one caveat, a select percentage of CF’ers are born with a really aggressive version of CF so the decline in their health at such a young age is mostly due to the defective genes they were born with and that REALLY SUCKS! This blog is not for them.
Now on the other hand this blog is for the kids that think skipping treatments is no big deal, and being active is doing the dishes and depending on IV’s to make them feel better instead of working their ass off is their life plan. As an almost 46 year old who did do the dumb shit and paid for it with a loss of 30% lung function in the matter of 3 years, I am telling you to stop being an asshole!
Your stupidity, rebellion, and power trips are killing you. I don’t expect you all to be saints but get your heads out of your asses and realize that you have been dealt a really shitty hand so stop throwing in the cards and start building a new deck!!! I know many of you who are in this demographic want to tell me to go eff myself and that’s fine. I’ve been told to do worse. While you are telling me to eff off at least take stock of your life and figure out if I may be kinda right and that you may be able to make some smarter decisions because I was once you!!
A former asshole.