Emotions (UP, DOWN,
UP, DOWN…)For most people, I mean the general public, they have this fixed idea built into their bodies that they were born, go to school, get an education, get married, start a family, eventually retire, then grow old and eventually die. (Not necessarily in that order) But for people with CF, that ideation of how things are supposed to flow in life is quickly changed as we learn in our young years of the reality of having such a devastating disease. Sure we are born and most now get to attend school. However, only 1 out of 2 people living with CF make it to the age of 25. Meaning the getting the education part and everything after is not often a reality for someone with this disease. Therefore our emotions and our values are made up differently from the ‘average Joe’.
Not only do we have to face those harsh realities, but we also face everyday changes that happen to us as well. For example, back in January my life was ok. I was fairly healthy. February I was in the hospital fighting for my life, right up until the middle of April, when I was discharged from the hospital. But the whole time in there my body was changing. One day telling me I was going to be ok, the next telling me to saw my goodbye’s and pray to God that if there is anything in store for me after death, than please, let me make it there. And then now today where I literally have to get blood work every week to make sure that the anti-biotics I am on are not hurting my kidneys or my liver too much. And that all the other factors and numbers are all looking ok. I mean, our reality is that tomorrow I could be in a hospital bed fighting for my life again. I know that this is a reality for everyone, I know a lot of you are thinking that, but it is a shadow that follows us CF’ers around wherever we go and with us through whatever we do.
Add on top of that, having to re-create my beliefs and values after leaving my former religion. In that faith, you are taught what to believe and if you don’t believe it then you cannot be a believer, or follower. So I formatted my mind, like a computer, to what I needed to believe in order to be accepted by them. I had this fixation in my mind of how God saw me and how I needed to present myself in order to be loved by him. It was this thinking that led me to many of my darkest hours in life. And now I have to ‘reboot’ as it were and create my own truth and what works for me. It’s very challenging and to be honest, very overwhelming at times. Especially now that I am OUT and living with another man. Sometimes I feel like life is happening too fast, not saying that I don’t love it, because I genuinely do. But sometimes I feel like I just don’t have time to think of what I want and stay grounded because life is always on the move.
They blamed so many factors on my being gay. For example, they told me that it was a result of my troubled upbringing. Nope that wasn’t it. I know a lot of gay people who had a perfect upbringing. And they turned out gay so that couldn’t possibly be the reason. Then they said, it was because you were raped when you were younger. Nope, that’s not it either because I know many straight people who were raped by the same sex when they were kids. Then they told me that it was an imperfection of the flesh that I had to deal with. Ok, so I thought this may be it for approximately 60 seconds. Then, my heart just told me, and I am sorry to quote Lady Gaga on this one, that I was “born this way”. I spent so much time trying to wrap my head around the fact that I couldn’t accept myself for the way I was because everyone else couldn’t, until one day I woke up and I didn’t care anymore. And I am so glad I have seen the ‘light’. So learning to accept myself and adapt to a new life is something that I have to deal with on top of everything else an average CF person faces.
And now I am with the most amazing man, and he has so many hopes and dreams, and when he talks about them I actually picture myself by his side as he reaches the realization of them. But yet a part of my mind doesn’t allow me to fully go there because of the ideation that we CF people are taught right from a young age. For example, we want to build a house, but I question just how long I will be able to enjoy it, rather than just going for it. We want to travel. But then I wonder what kind of tole that will take on my body and if it will actually shorten my life, or will that give me more of a motivation to keep surviving. Then starting my business and being so overwhelmed with that dream being realized that I wonder if I should just go for it, no holding back. It’s so crazy to wrap my head around it all! Yes, I believe in taking one day at a time, but I also believe it’s important to look to the future with optimism. It can however, be very difficult for someone with a life-threatening illness. Especially one that for 7 years of his life was in a religion that taught, don’t think, just go with the flow.
The weather plays such a role too. Like today, here in Clarenville it’s raining and really dark and gloomy outside. So not only do my lungs feel tight, but a little bit of depression sets in as well. Now that’s normal for anyone, who doesn’t want to see the sun every day? But then again, we all need a little rain. If it weren’t for the rain how would we recognize the sunshine? But it’s just so crazy how so many things can affect your emotions. So many things that can make or break you. But just like a real life rollercoaster, you just have to ride it out. You just have to hold on for dear life and pray that you make it with some degree of sanity at the end of it all. All I know is that I was blessed with yet another day. Another day closer to getting my lung transplant. Another day closer to another shot at life. And until that day I just gotta ride this thing out the best way I can, with all of my dear family and friends by my side.
“All emotions are pure which gather you and lift you up; that emotion is impure which seizes only one side of your being and so distorts you.” ~ Rainer Maria Rilke
Jamie Leigh Francis
xo
