Sunday, January 23, 2011

The Hardest Part About Being In The CF Community

I've mentioned in previous posts about what a positive thing the internet is to those with cystic fibrosis. We meet people going through the same things we are and we're able stay connected to our real lives even when we are sick. It is a gift that we cherish every day.

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 prayer.

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.

To my CF kindred spirits gone too soon: No matter how long you lived you proved the doubters wrong because you LIVED every damn minute. To my friends and kindred spirits in the CF Community:
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 take a break to heal your heart and soul. Come back when you are ready. We'll be here.

Until then remember two things:

1. Every single day we live...we prove the doubters wrong.


Oh, by the 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,



  1. 200 years, huh? What's Moganko been feeding you? I want some. Maybe you can write my blog when I'm gone. All you need is a paper bag for your head, a foul mouth and the ability to use 5% of your brain. Ask your wife to hit you in the head with a frying pan, then you'll be able to write my blog. Thanks.

    Nice post, BTW.

  2. I somehow missed this post in my blog updates. Probably because I'm stalking SO MANY blogs that one or two tend to fall in the cracks every now and then. ;)

    I had recently connected with two of the beautiful souls you mentioned – both women close to my age; both with daughters. The news of their passing hit especially close to home for me because of our similarities. Although I didn't have the chance to know either of them extremely well, I will miss both of them. My heart goes out to each of their families and especially to their little girls.

    I tend to be emotional. Things really stick with me. When I hurt, I hurt deeply. My husband is worried that dealing with the loss of friends I've made in this community will eventually be too much for me to handle. Sometimes I think he's right, but mostly I just think of how fortunate I am to care for these people so much, and to be cared for in return. Those relationships you speak of - ones with the potential to cause us the most pain - they're the very best kind, in my opinion. They are the stuff of life that makes me feel like I'm REALLY LIVING.

    Great post! As always, thanks for sharing.

  3. I just want to know if Moganko gets to be in the casket with you when you die in 200 years? Or will he live on forever ;-)

  4. I love you, Joshua, with all my heart, forever.

    Mom xoxox

  5. Eat something orange ... cheetos? Cheez-its? Puppet fur?

    I loved this post. Thanks Josh.


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Peaceful Things ~ Josh
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