Bubble in the sky, 2011
Dear God,
I don’t believe in you. But I believe in the right for others to believe in you. But I don’t. Believe in you.
My wife and daughter do, however, believe in you. So, for their sake, I’m hoping I’m wrong and you do exist. I want happiness for them more than anything else I can think of. So, shoot a lighting bolt down from an empty sky and turn me to dust. And for them – protect, embrace, hug.
When I realized what this disease was about, and the lives and suffering it has caused, I knew I could not believe in a god that created cystic fibrosis.
I must have done something wrong in a previous life. I understand.
I am lucky. I understand.
I have everything I need. I understand.
I am so close to the perfect life. I understand the asterisk.
What I don’t understand is how you could design a disease that harms children. That takes them away from their parents. That makes them suffer so much. You are no god of mine.
You owe us a cure, or a remedy. A lifespan “increaser.” A stress and exacerbation reducer. And you owe it to us now. I have a feeling I won’t be on the list for it after this blog post, but I can live with your decision, or maybe I won’t. But if you give it to everyone else, good.
I suggest you send a spark to a scientist or doctor or mother or father or brother or sister, or anyone who will take that spark and put in a pill or nebulizer and make magic happen. Magic, magic, magic – it’s the least you can do.
If I read another blog post where an innocent baby, child or young adult has spent a night in the hospital because of this disease, I’m going to transform into a Phoenix and scorch the heavens until they are clean of anyone at your dinner table who thought CF was a good idea. It wasn’t. It’s not. Take it back.
It’s your turn to make it right for those still here. It’s too late to help the others. You’ll have to answer to them in person one day. And I hope you have a good excuse. You’re going to need it.
Please protect those who fight this disease, and the ones who love them. They demonstrate true courage and bravery every minute of every day, and never make the papers with “Hero” next to their names. They should. I hope you have a good reward for them in the end.
I expect mine will be a pile of coal, a shovel, and a furnace.
UC
The Unknown Cystic 
I do believe in God and if you’re ever wanting to have a serious talk about how/why God created/allowed CF into the world, let me know. Either way, I appreciate the honesty of your letter and you’re still one of my favs š
Ronnie,
I’ve been reading your posts about the baby. How exciting. I am so happy for the two of you and your good fortune. It goes by so quickly. Before you know your child will be in school. Enjoy every minute, as you seem to be doing.
UC
Thanks UC. We’re certainly anticipating a fast approaching storm!
I’m with you all the way. What a giant f**king prick.
Belief systems are for people that can’t sleep at night, and don’t want to face the fact that we are all alone on a spinning rock in space with only total f**king maniacs for company.
As for the Magic, you know we are working on it. It all I think about, I don’t have the brains to do the magic myself, but I do all I can to support those that do.
Hope you read jonathans email.
Matt,
I can see a lighting bolt will be zapping both of us sometime today.
I know you guys are working on the magic. Something is going to happen soon. I know it. Don’t sell yourself and your contribution short. It’s a team effort. I’m glad you’re on it.
I did read it and emailed him back already.
UC
I do believe in God, but I also believe in the right for others to choose not to. I think it would be easier for me to be angry (well, angrier… and a lot more more often) about CF if I didn’t believe. Which is making me think I should reconsider my entire belief system because I recently had a moment of pure anger and honestly, it felt REALLY good. š
Honestly, without getting all preachy, I want to say that believing in God is sometimes the only thing that pulls me through the shitstorms (CF related and otherwise). I’ve heard people say that believing in God is like believing in Santa, and is that really what I want to teach my daughter? To which I say, “Absolutely!”. To me, the key is simply believing in SOMETHING. Whatever it is, for whatever reason, if it helps you pull through things that you might not otherwise make it through, that is a wonderful thing! I say once you find that, hold tight to it.
One more thing, would you quit being so damn hard on yourself? That’s my friend you’re talking about.
Jenny,
Thank you for the very thoughtful email. It’s a nice contribution to the blog post. I like when the post gets better because of the comments.
Am I being hard on myself? It doesn’t feel like it. I need to be harder, I believe. Happy to be called a friend. Thank you.
UC
I’m with Ronnie.
I wrote a similar letter to God for my blog last August, minus the not believing part. I didn’t post it. Not because I thought I would go to hell or because I thought God would be disappointed in me. Honestly, it’s because I think my fellow Christians can be some of the more judgemental human beings to walk this planet. I wasn’t up for the wrath, not from God, but from my fellow believers…many of whom believe in a world-view that seems to be almost the opposite of what Christianity means to me…including helping, loving and being accepting of one another…ALL humans. Weather they believe what you believe or think how you think.
Basically, I struggled with my God and I still struggle. I get angry a lot. When a child dies, when a Tsunami kills thousands, when I read about the Holocaust… I just don’t understand and I have trouble making sense of these things in the world. However, I know my God still loves me, even when I’m angry and even when I questions.
All of that just to say, BRAVO! You had the courage I didn’t several months ago. You Rock!!!
By the way, this reminds me of the XTC song “Dear God”…
Stacey,
I’m not sure I had any courage, especially more than you. I’m not out to bother anyone. I just want to express my thoughts with no drama.
I don’t understand why bad things happen either. I don’t think any of us have the answer, only our best guesses based on what we know and what gets us through the day and life.
UC
I think it’s normal to question life, and God. There are many things in life that don’t make sense to me … right now. I know someday all the pieces of the puzzle will come together. And I don’t think God created CF, personally.
I’m a Christian and have no desire to blast anyone about anything. I pray your search for answers is honest and relentless. š
Mal,
Nothing make sense to me. I have no answers. Just questions and wishes.
After this last hospitalization, I have a new desire to write what I want to write. I need to capture as much as possible for my wife and daughter before I am gone. My intention isn’t to stir debate. I have even thought about not publishing anything anymore, but I like my friends who visit.
I am definitely tired of this disease and what it has done to good human beings.
Hope you are well and will one day write a guest post here. I will stop asking, but the offer is always there for you.
UC
UC, please don’t stop posting… I don’t care how much ‘debate’ it may or may not stir up!! It’s authentic and will be of the highest value to your wife and daughter one day. A day very, very, very far away. Like 50 years away, at least.
Liz,
I go through these phases every so often. Ignore them. Took a week off. Feel better about it.
UC
Ahhh, UC long time no read!!!
I just spent an hour catching up. Sorry to hear the joint lured you back in but happy you are home again.
The ‘magic’ you speak of, could well be in your medicine cabinet.
Yep, get on your knees and pray for good ole immodium.
Check out what I read today:
http://www.eurekalert.org/pub_releases/2011-04/mu-ctp042111.php
I had to laugh, but then again, wouldn’t that be so awesome if something so simple as immodium is our cure?? LOL.
Hope you feel better and can stay out for awhile. š
Jodi,
Nice to have you back. Yes, I just got whipped everyday for two weeks by CF. glad i am out. I saw that article on immodium. Now that I have a port, maybe I will give myself a nice little IV of it to the chest.
Hope you don’t stay away so long again. Best to you.
UC
Oh me, oh my, my dear, dear UC. I believe you and Chris were twins separated at birth. T.r.u.l.y.
I love, love, love this post. {seriously, I have to stop typing in triplicate on your blog}
I have so much going through my head… thanks for magically articulating some of it out here in cyber world.
Much love always,
Liz
CF wife
Liz,
I take your twin comment as the highest compliment. Good to know I have a twin out there.
Thanks for sharing your thoughts and letting me know I am not alone.
Best to you and my long lost brother, Chris.
UC
UC
There is one statement regarding this issue that I will make, maybe two.
#1 I didnt believe until Natalie. That’s a post in itself.
and #2 They say that God doesnt give you any more than you can handle. A good friend of mine shot down this idea and told me this, it has stayed with me ever since……”Of course God will give you more than you can handle, because He wants you to turn to Him….” 2nd Corinthians Chapter 12 verse 8 says…”Three different times I begged the Lord to take it away. Each time He said, “My grace is sufficient. My power works best in weakness.”” (new world translation).
I do hope He takes it back though. One day, perhaps. much love ~j
Juli,
Regarding #1, that’s a post I look forward to reading. There is something to be said for Natalie getting such a great and caring mom. It does make me wonder about a certain logic to life.
UC
I have no words. Only love and respect for you and the courage it took to write and post this.
Josh,
Nothing I do takes courage. There’s a fine line between being courageous and stupid. I’m the latter.
UC