I recently read a post (which inspired this post) over at fellow PAH blogger, Living On O2 For Life entitled “Why?” where she questions her place in the order of things with regards to surviving her pulmonary hypertension and living to adulthood when a child with the same condition died. If you are a person living with a potentially life threatening chronic illness, and you are a survivor, at some point in you life you will question that.
I questioned my own place in the scheme of things many times. I have sarcoidosis of the lungs (stage 4) and heart, and a hole in the heart. The hole was repaired, but up until last year the hole was still leaking and only this year there is no evidence of a leak. I also have pulmonary hypertension and heart failure and need to use oxygen to sleep and do any sort of activity.
In 2007 when I found out I had heart failure I was told that my type of heart failure was irreversible and I would need a heart and lung transplant and had a 50% chance of living to 2012, and a 20% chance of living to 2017. Much to the confusion of doctors, my heart has improved to the point that my heart’s function fluctuates between mildly Impaired to low normal and on an X-ray my lungs looked like crap, but now they are a lot clearer and they sound absolutely clear. I function normally. If anyone were to see me, they would have absolutely no idea that anything was wrong with me and that I have a device implanted in my chest, hooked up to my heart “just in case”. My doctors constantly tell me that anyone with my combination of conditions should not be able to function normally. Yet still I do. And well. But why?
Why is it that I can function normally when someone else with pulmonary sarcoidosis can barely function? Or someone else with cardiac sarcoidosis could require a transplant shortly after diagnosis and progressively get worse? What make me so special? What makes anyone special in any disease to not only survive it, but to thrive?
I suppose it is some form of survivor’s guilt. But all to often I would read about someone else's condition and the hell they are going through with less conditions that myself, and I would wonder why. But I soon realized that we are all on this planet for a specific purpose,which I have no idea what mine might be, and we are given certain tools or obstacles to help us with our lessons. The universe knows why I have all these conditions and yet function somewhat normally. It's my journey. And the person with one condition that seems to be knocking on death’s door? It's their journey and it is not any of my business really. That is between them and the universe. All I could do is offer support, nothing else. It serves no purpose for me to feel guilty that I am doing okay and they are not.
I recently read that the only reason to feel guilty is if you have done something wrong. I got better. I did nothing wrong. So I don't feel guilty anymore. I stopped asking “Why?” because more often than not, the universe will answer your question. Ask why didn't I get sicker enough and the universe just might grant my request. Now when I get an email from someone that explains just how horrendous their life is with their disease, I don’t feel guilty. Instead I now thank the universe for allowing me to be better and send out positive energy to that person. Mine is not to wonder why, mine is but to do or die.