But there is another side. A side few talk about and some just plain ignore...
It seems like every day I read about someone with CF passing away. Sometimes it's a tribute on a blog. Often it's a tagged post on Facebook or a message board on CysticLife or CF2CFChat. Many times I'll receive an email saying someone passed way. It is a huge negative and an unfortunate reality of cystic fibrosis, and thus, it is a huge negative and unfortunate reality of social networking within the cystic fibrosis community.
This negative reality has been happening far too often as of late, at least in my part of the CF Community. We've lost more CF kindred spirits in the last few weeks than I care to mention. I didn't know any of them personally and it would be wrong and pretentious of me to try and pay tribute to them. I don't know if they were private about their life or if they were leading the charge for CF awareness. Hell, I don't know if they would even have liked me as a person. Regardless of that, their passing has broken the hearts of many of my CF friends and that's enough to break mine too. Whenever I hear of anyone dying from cystic fibrosis it gives me the chills and fills my heart with sorrow. They are my kindred spirits. I may not know them or their personal journey, but I've walked a similar path. It is not easy to lose someone to the same illness you are facing every day.
How hard it must be to be the parent of a CF child. The CF Community that they are welcomed into with open arms can be very overwhelming at the same time. Parents see children with CF that are struggling far more than their own child, which gives them mixed feelings of joy and guilt. Joy that their child is doing so well, guilt that another family isn't quite as lucky. What about the other side of the spectrum? The parents who have a child that seems to struggle a little more that their CF peers. That no matter how hard they work, they can never seem to get a step ahead of the damn disease. What if they lose a child? That should never happen. A child should never die before their parents, but in the CF world sometimes they do. My parents lived in both of those worlds. I don't know how they survived...but they did.
It also has to be hard for mothers and fathers of children with CF who look to adult CFers for strength and for answers. Those same parents are crushed beyond words when their mentors - and in some cases, friends - are gone. Taken from this world because of a @%#$ genetic flaw. Many of these parents wish they had the opportunity to say something to these adults.
A thank you.
A well wish.
A respectful tribute.
And then they hold their child and question....Why? Why does this disease exist?
What's the answer? I don't know and I never will. All I can tell you is that those people you've lost knew how much you cared about them. They just did. Trust me.
A few posts ago I wrote that one of the hardest things someone can ever do in their lifetime is to be in an open and vulnerable relationship where you risk being hurt. So I say this to every single person in the CF Community:
I love being a part of your lives. Whether that's as your friend, your mentor, or simply your kindred spirit. And because I am all those things I feel it's my responsibility to be honest. Sometimes I am afraid of being all those things. I've lost many friends to this disease, some of whom I was in the room when they were pulled off the respirator and breathed their final breath. I pulled back from the CF Community for almost a decade because I didn't think those wounds of loss would EVER heal.
But they did. I've got the scars to prove it. When I was ready...I came back. It took a long time...but I came back.
And I'll keep coming back. I'll keep developing these relationships with my kindred spirits that have the very real risk of leaving my heart with even more scars. Why? Because you are all amazing and worth it. This is life in the CF Community. There is no safety zone here. If I pull back from you for a moment it's because my heart needs mending and my mind needs peace. Have no fear, I will always return. I love you too much not to.
Yes, I am afraid to lose you, but I will always love you. Know that I will live my life the best I can every single day because I owe it to myself and I owe it to you. If you are hurting, then
2. I WON'T EVER STOP TRYING, SO DON'T YOU EVER STOP TRYING EITHER.
Oh, by the way...in 200 hundred years when I die because I overdosed on being nerdy, please pay your respects in the following way:
- Share something nice about me with others.
- Don't say "Breathe Easy, Josh." or "Let's make CF stand for CURE FOUND for Josh." I know some of you like these phrases and more power to you, but I've never been a huge fan of either of them. I prefer "Josh had CF but it never had him." It's catchy and fits me better than those other two. :-)
- Do something that makes you laugh. Laughing is my favorite thing ever. :-)
- Wear, drink, or eat something orange. Except oranges. I hate oranges. (Weird huh?)
- Be sad for a moment, but be happy that I'm peaceful and I lived a wonderful life. Thanks for being a part of it.
Peaceful Things and Lots of Love,