Recently I read an essay on a girl's life with CF. The author wrote (and I'm not quoting exactly), "On top of CF, I have scoliosis, asthma, arthritis, diabetes, and god knows what else. I take a lot of pills every day and do a lot of treatments, but I keep a positive attitude." After the first sentence, seeing the words positive attitude made me stop and think. To me, the essay didn't exude positivity in any way. The words "and god knows what else" indicate the author feels that there is probably more wrong with her than she even knows, that something bad is bound to come along eventually, and worse things will probably happen to her. Despite all that, she believes she maintains a "positive attitude." I'm not saying she is wrong; I'm saying the contrast made me consider how our perspectives on these abstract concepts vary widely.
So what is positivity? Is it the absence of negativity? Is it the perpetual presence of encouraging thoughts? The avoidance of negative thoughts? Is it constant reinforcements of clichés like, 'What doesn't kill you makes you stronger,' and 'Live each day to its fullest'? Is it the avoidance of sadness? Is it denial?
To me, positivity is about proactivity. In times of good or neutral health, we seize opportunities to feel fulfilled - like finally riding that bike path, or learning how to make a Souffle. It means thinking about the things we CAN do rather than the things we can't. It means counting blessings rather than problems.
But overall, our true "positivity" shows in times when we are challenged the most. When we get bad news from the doctor, will we hang our heads and think 'This is probably it for me'? Or do we put a fake smile on and cling to those clichés...Life, do your worst...? Personally, I don't think either of those are positive responses. In fact, I don't believe positivity is the "absence of negativity." As humans, we are prone to some negative thoughts - some more frequently than others - self-pity, constant worry, regret, or resentment toward the situation.
I say if you find yourself in the face of terrible news, let yourself grieve for yourself. It sounds like a selfish concept, but if you don't allow yourself a little time to grieve, you won't allow yourself to move on from buried feelings. When you live with disease, many benign things like the common cold can be life or death, and it does no good to pretend that we're not affected by that constant reality. Confront those feelings head-on. Maybe you were just listed for transplant, and it's scary. Or maybe you've been denied a transplant, and you feel like it's a death sentence. Maybe you are back in the hospital again for the second, third, or fourth time this year. You're allowed to feel angry, sad, tired. Feeling those things doesn't make you a negative person. To be proactively positive, you'll feel them with awareness, confront them, and eventually shift your focus to the things that you can change.
As for me, my trachea has had trouble healing since the transplant. I've experienced the rare side effect of tracheal stenosis, or closing of the throat due to scar tissue build-up. It was frustrating and terrifying not being able to breathe again - especially with so many expectations of the new lungs. My lungs are so clear and strong! It's my trachea that is now the problem. Once again, every breath was a struggle. The doctors tried three different stent placements to hold the trachea open - each one larger than the last - but they didn't work. So eventually I had to go back to Cleveland Clinic for a tracheostomy. I remember lying on the operation table, watching the anesthesiologist hook a syringe to my IV, knowing that sleep was seconds away, and my head was shouting: "I DON'T WANT THIS. I DON'T WANT THIS." But I needed it, and everything moved forward quickly, and when I woke up, the stoma had been successfully inserted through my neck. I couldn't talk for a month, but I regained my voice once they switched to a smaller tube.
I still feel beautiful. I go about my day with normalcy. People stare at it when I leave it exposed - clothes that cover it are irritating, and sometimes scarves are just too hot. I don't remember it's there until others point it out, with pity, asking, "When do you get it out?" Some people are fixated on that question. I am pretty sure the answer is never; but I don't tell them that.
"Soon," I say. "Depends on how the next appointment goes." If they knew the exhausting suffocation I experienced before the trach was put it, they would know that in comparison, I don't mind having this thing in my neck.
I'm not going to pretend I didn't have a period of grief with the trach - not just for the memories that resurfaced by being back in the ICU, or for the new changes I would have to work into my life, or the fact that I couldn't swim or do certain things, but for the fact that my post-transplant expectations that things would get progressively better without any setbacks was given a wake-up call. Yes, things do get better, but that doesn't mean complications won't arise.
Eventually, I confronted the facts and accepted the situation. The trach is part of my life, part of who I am to the world and part of my beauty, and that's not the end of the world. It would be ridiculous to hold onto sadness - there is too much joy I would miss if I did that.