Friday, March 25, 2011

Let Me Relax...

I pride myself on being appreciative of everything in my life, but lately I've noticed the things I took for granted while I was younger and the things I might miss out on as I get older...

If it's not one thing, it's another. If it's not a lung infection, it's muscle spasms in my cerebral palsy-addled leg. If it's not intestinal blockages, it's complications from mal-absorption of fat-soluble vitamins. I constantly need to evaluate what issues to focus on right now, what can be dealt with later, and come to grips with the reality that parts of my body may eventually need to be replaced. I feel like I'm a used car approaching the 100,000 mile mark.

Even relaxing is hard work. Traveling—which used to be a snap—isn't getting any easier on me. I love going on vacations with family and friends, but I hate the act of traveling. The scheduling, packing, driving, flying, deadlines. I HATE IT. It damn near kills me. Once I get to my destination I'm usually good to go, but my last few trips are showing me that there is a cost for joy and pleasure. Change of diet and of climate send my lungs and my stomach for a loop. While everyone else is by the pool enjoying their vacation, I'm doing another therapy, trying not to cause a ruckus or draw attention to myself and stopping the antibiotics from helping the sun scorch my skin. I'm lethargic and frustrated. I'm high maintenance. I am not myself. I am with friends who care, but I feel all alone because of my health. CF doesn't take a vacation, even if I do. Still I appreciate the fact that my body is well enough to travel because I know several people with CF and other illnesses that would give ANYTHING to be where I've been...complications be damned.

I also see families on their vacations spending time together. Little girls on their daddy's shoulders and little boys wrapped in their mother's arms. I see the joy it brings, but I also see the hard work it takes to get there. My wife and I are well aware of what we are giving up if we don't have kids, but we also know we are gaining time together. When my body breaks down on vacation I automatically feel thankful we don't have little ones to worry about. We don't have to explain why Daddy is napping in the bed on vacation instead of playing in the pool with them. I have friends with cystic fibrosis who are phenomenal parents and wouldn't trade that gift for anything in the world. I say more power to them. It's a beautiful thing to see and I envy you with every picture you share and every story you tell. I just don't think we're willing to make that same choice. That makes me so sad, but so peaceful.

When I think of where I've been, I often wonder where I'm going. As a man and as a CF patient.
I'm excited and scared, but that's what makes life worth living.

So, if I might take a moment...

"Please spirits, fates, Gods, and angels: Let the hard times be few and the good times be many. Let the breeze of peace cool me when I'm hot and let love warm me when I'm chilled. Let my body work without the pain and let my mind be soothed by the tranquility that surrounds me. Let me appreciate what I have and forget what I do not. Let me relax...without the hard work."

~ Josh from Joshland

Peaceful Things,



  1. Aw Josh I love how you wrote this blog. Most definitely sharing it with Spencer. We're going through some of those same thoughts/struggles right now with trying to plan a honeymoon after our June wedding. It's hard to plan things in advance because we never know how Spencer will be feeling, but we can't do things spontaneously due to oxygen, treatments, meds... etc. It's rough and I never realize how hard it truly is on Spencer until he's home, sicker than a dog because of the disrupted schedule, treatments, and meals. Lots of love to you, Josh! <3

  2. Joshy, You have such a great way to speak the truth, but remain positive. This blog really speaks to me. Ethan and I travel as much as we can now, because I know someday I am not going to be able to do any more. Hang in there. And have fun...where ever you are!

  3. I LOVE your request to spirits, fates, Gods, and angels! A huge prayer for peaceful things for you an Carly.
    xoxo Kay, Brendan and Declan

  4. J-Dog,

    At some point you're going to have to let everyone in on the fact you write this blog and the UC site. You messed up and wrote two posts about travel and CF. Oops. I like this post better than the one you wrote on your UC site. The Josh character is much nicer and caring. UC is an a-hole.

    Your post here rocks. You're rolling, letting the voice riff. Musical, my man.

    Best to you,

    Yourself disguised as UC.

  5. I think it is best to say, I love you. We all do.

  6. My dear Josh and Carly,

    Wherever your life journey takes the two of
    you, it will be surrounded with the love you share.

    Oh, yes, and your mother/mother-in-law. Sorry, I'm just not going anywhere...and I will just keep praying for your joyful, healthy life together.

    Love, Mom

  7. Josh, sending you lots of love and peaceful thoughts. I don't have CF but I DO understand how stressful packing and traveling can be with a little fibro. Once we get to destination we are also good to go but remember all the meds and figuring out how to sterilize neb cups, where to stop for a treatment, getting out of the hotel room by noon, telling the cleaning lady to come back later because we are still doing treatments, actually...telling her to just forget our room's exhausting.
    And the part about an adult CFer w/ children on vacation, :'( I'm so glad you and carly are at peace with that but it brings a tear to my eye because you would make the BEST father in the world.

  8. Your honesty is what I love best about you Josh. Please never lose that. Big hug to from Iowa!!!

  9. I completely sympathize with the whole travel:exhaustion ratio. It's definitely grown as the years go by in our household. We love to travel too, but dang, it's just exhausting sometimes even THINKING about it, much less doing it.
    And I also wanted to say how much my heart tugs for you and your wife's decision on the whole kid v. no kid decision. It is something Chris and I wrestled with for over 8 years of marriage until we finally came down on the side of the fence of having a kid. She is a delightful, wonderful, amazing, perfect 2 year old, but, bless her heart, a ton of W.O.R.K. It's never an easy decision and my heart is with you and your wonderful wife - peace to both of you.
    CF wife


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