Jim Fahr and his wife, Denise, come to Florida with her parents each year for some time off at a time-share over in Kissimmee. Well, last year, Jim didn’t come because he’d just started back at work 9 months post-transplant and didn’t want to immediately take a vacation, so we only met Denise and her parents.
This year, Jim came! I’d been looking forward to their arrival for a year – ever since I found out he wasn’t coming last year. Beautiful is part of the Facebook group of “CF Wives” and 5 of them meet every month or 6 weeks to have dinner and catch up. When they got the dates Denise would be in the area, they set up their night to work with the Fahrs’ and I set the evening aside to be with Jim and just be with a dude who’s been through a transplant and is living life large again.
The evening couldn’t have gone any better, unless it didn’t end, but it did end around 9:30.
We met the Fahrs at the Barnes & Noble next to the mall before dinner and visited with just the 4 of us for a solid 30-45 minutes. They’ve got 13 years of marriage on us, so it’s neat to see a glimpse of ourselves a decade in the future.
When I sit and think in my rare moments of quiet, I am so glad I “came out” online with my CF in early 2010 and now have such a huge group of friends who deal with the same issues and truly know what you’re going through. It’s all right and all good that friends and family know that I have CF and that we deal with other life issues than most people, but even in that circle, they still don’t deep down know and feel what we feel.
That’s where having real-life blood brothers and sisters come in. After 3 solid hours at California Pizza Kitchen with Jim yesterday, he is now the most similar person to me than anyone I’m aware of. We have nearly identical personality profiles and life experiences – except he’s gone down to death’s door and come back because of the gift of double lung transplant. Except I ate an entire pizza in the time that he ate 2 slices and finished half of his due to stomach issues post-transplant. He laughed and commented that he used to scarf down his food like that for the same reason I do: to beat that brain trigger that says you’re full.
We dove into working full-time in a high-pressure job with CF and all that entails with coworkers, eating at work, and embarrassing moments at work. We hit on testosterone levels, fostering and IVF, dreams, goals, and fears. There has never been a time in my 33 years on this earth where telling someone else every iota of the uglies and pale triumphs of life came out so easily and naturally with no fear of rejection or misunderstanding. I mean, how many people can you tell about coughing up blood in public or about having a hemorrhoid removed because you didn’t take enough Dulcolax and not get a weird look… over dinner, no less!
I indulged myself in the fantasy that is “life after transplant” all evening in an attempt to fully wrap my mind and emotions around everything I can now so I don’t have to deal with as much when my ticket is called sometime in the next 20 years. We spent time flipping between talking about where I am now to where he was pre- and post-transplant up until now and I got a much more real feel for what to expect. Barring a freak exacerbation that sends me spiraling out of control of the meds that keep my bugs at bay and the blood from leaking out of my lungs (hemoptysis), he said I’m a very long way away from being where he was 2 years ago.
We are of the same thinking on getting to and maintaining a healthy weight, exercising to keep healthy (but not to the point of exhaustion so bugs can’t take hold), living life with a healthy balance of planning for the worst and hoping for the best, and staying compliant. We threw the “t-word” around more than I’ve ever done in my life and something strange happened: I felt okay with it – okay like never before. Thanks, Jim. Thanks for being my CF mentor for the night and for the last 2 years with your great perspective. I’ll be sure to pay it forward when I’m on your side of the booth at dinner when the time comes.
Check out Beautiful’s narrative of last night on her site, too.
Great stuff, Jesse! Glad you got to spend some time with Jim and Denise. Thanks for sharing your thoughts and the photo!ย
It’s such a great time to live with CF now. The internet opened up so much opportunity for us to connect with like individuals. When I was growing up they just realized the cross infection issues and it shut down communication with peers. Now we get to talk frequently share our experiances and help eachother it’s so wonderful. Was great meeting you guys, and the feeling is mutual,extremely compatible personalities made for some great conversation.
Awesome, son!! I’m super happy that you got to spend some time with someone who’s not only been where you are but has gone way beyond that. Must feel like the tall grass you’re running through got short enough for you to get a peek at where you’re going … at least for a while.
And Jim, if you see this, THANKS for the cool time Jesse had with you. You guys hanging out reminds me a lot of our experiences as young CF parents spending time with other parents of CF kids. We had lots of heart to heart talks with other parents in the hospital.