Thursday, September 30, 2010

Joshland Question: Do You Ever Get Burnt Out Talking About CF Stuff?

Joshland Note: The following post is my honest opinion on the subject of CF and the toll it takes on relationships. It's not calling anyone out, it's not judging anyone on what they do or don't do. It's just an opinion. An honest opinion from a man who is doing his best to keep his blog honest...and full of typos. Oops. :-)

Q:Do You Ever Get Burnt Out Talking About CF Stuff?

OF COURSE I DO! It's not that I don't care about CF and those that live with it every day. I do, and if anyone says otherwise, all they have to do is read this blog, look at my body of work, or talk to me for five minutes and I will prove them wrong. However, it's a very fine line to walk. CF is an overwhelming and all encompassing entity that leaves little room for the "average" stuff. If you let it, CF will consume your life. There has to be a balance. When I get that "burnt out" feeling, I know i have to take a step back and analyze if everything in my life getting the attention it deserves.

When I get consumed by the CF world, it's not just hard on me, it's hard on my wife. It's strenuous on our marriage. My wife did not marry "CF Josh". She married the whole package. The guy who loves her unconditionally, just as she loves him. The guy who would walk to the ends of the earth to get her a cup of coffee. The guy who doesn't always rinse his milk glass all the way, thus driving her bananas. The guy who didn't see the point of starting a blog or social networking, but he was encouraged by his wife to start because it would make him happy and hopefully a lot of other people happy as well. She is a huge reason why Welcome to Joshland exists. But sometimes, she just wants CF to go away because it's too much of our life. The truth of the matter is, she is right. Sometimes it is too much. Sometimes it's all I talk about and that is NOT healthy.

CF also isolates me from the people who remember the guy that would talk about anything but CF. My friends and family outside of the CF Community rarely hear me speak about CF because they live it with me every day, so there is no need to beat a dead horse. Lately, it's been a struggle to find other topics to chat about when one of the biggest parts of my life is my blog and the videos with Moganko. Don't get me wrong, my friends want to hear about it and are my biggest supporters, but they also try to remind me that there is more to me than CF. I feel like I am getting better, but I guess they are the better judge of that than I am. Please friends and family: Call me out on it. Am I balancing things well? I expect an honest answer, people!

That question also got me thinking: What IS a good balance of a healthy CF life? When is it "acceptable" to pull back from fundraising and promoting awareness? It's different for everyone of course, but here's my take:

I've read, seen, heard or, and watched people be devoured by this monster called cystic fibrosis. I'm not talking about those that have the actual illness....

I'm talking about their loved ones.

The parents, spouses, children, grandparents, friends, and so on that fight the good fight, so to speak. Those wonderful people that love us so much that they are constantly promoting our cause. They start foundations, telethons, fundraisers, attend conferences, and spend every minute of their spare time on social networking sites posting links to wonderful causes and ideas because they want their loved one and everyone else to live long and healthy lives. It's remarkable and heartwarming to say the least...


Their personal lives are altered drastically because there is no down time.

I'll focus on parents as the main example, but fit this into YOUR life where it's relevant:

The divorce rate of parents who have a child with a chronic illness is higher than the national average in part because they forget to spend time with each other working on THEIR relationship. You know...The wonderful love that helped create the amazing child? It's pushed to the wayside to make room for extra nebs, doctors appointments, door-to-door fundraising, and blogging. It just doesn't seem balanced to me.

Now before you get all "Josh, you don't know what it's like to have a child with CF. You don't know the stress it puts on a marriage!", let me say this:

You are correct. I don't know what it is like. I was not, nor will I ever be, a parent of a CF child....

However, I did see first hand what it did to my parents relationship. I saw the stress and distance CF caused in their relationship. I saw the 2 AM feedings they gave Angie. I saw the stress at the dinner table where there was pork chops on a platter set next to a stack of unpaid medical bills. I saw the 10 page hand written letter that was given to 4 of my uncles and aunts outlining every single aspect of our CF care just so my parents could go away for the weekend. I saw my sister die despite all my parents did to help her live a happy life.


What I'm challenging you to do is to eliminate the letters "CF" from your home once in a while. To leave your kids with someone responsible and go on a date. Go get ice cream, go for a walk, go to a movie, go to somewhere romantic for the weekend and rekindle that spark that made your marriage happen before this bastard disease arrived. (That means "sexy time" for the more oblivious readers I have...I know you are out there. :-)

You are NOT bad parents if you aren't "FIGHT CF RAH, RAH, RAH!" all the time. In fact, I would say the best thing my parents and family ever did for me was not talk about CF all the time. Just when I needed a swift kick in the pants, so to speak. As a child, it was wonderful to know that I was just Josh who was occasionally "on duty" as "CF Josh". It was kinda like being a super hero with a not-so-secret identity. :-)

You are NOT bad parents if you take time for yourself. Self-preservation and alone time are essential to your sanity as a parent - CF or not. We CF kiddos are a resilient bunch and will be fine for a few hours and perhaps a weekend. I realize that this is not feasible for all the parents out there, but do yourself a favor though and take a look at your life for a moment. There has to be an hour in the day that you can treat yourself to something special. A bubblebath, a movie on the couch, time at the gym! ANYTHING! You parents may not realize this, but we want what's best for you too! Sometimes that means jumping off the band wagon for a bit. We need you at top condition! That means going out with friends more than once a month. Do little things to take care of yourself so you can take better care of us.

As far as family time goes, I have suggestion: Try to schedule time together that has nothing to do with CF. We used to have movie nights with malts and french fries. We would have game night, whether that was Super Mario Brothers on the Nintendo, board games, or playing outside, we just spent time together without talking about CF. It can can do it!

Don't you worry about the "Rah, Rah, Fight CF!" part. There are lots of people out there who are happy to pick up the slack. When you are ready, come back and fight with us. Or be a silent warrior. I know plenty of people who give money and send anonymous donation letters out to random people because they choose to not make their diagnosis public. That's fine too because they aren't letting this disease run their life. They do what they want, no boundaries and no questions. I respect the hell out of them for doing it.

We all have different levels of coping skills. Find your level and be comfortable with who you are. As long as you are giving YOUR maximum effort, then you don't have to answer to anyone about your commitment to the cause. I know it's there because I read it everyday in emails, on social networks, in videos, and in person. You are amazing. Now cut yourself some slack. :-)

I LOVE THE CF COMMUNITY! That being said, even Joshland needs to close for repairs sometimes. ;-)

Peaceful, Honest, & LOTS OF LOVE Things,



  1. I am happy you recall having family fun, my son! Like to think we squeezed the therapy, etc into our everyday happy lives, not the other way around. That is exactly what I hoped to convey in my guest story I wrote for your blog last Oct or Nov. We did something right if you carry good stuff along and you are living happily as an independent, responsible grown-up.

    Love, Mom xoxox

  2. Thanks Josh...I needed this post, so much. Natalie's dad and I are trying to put things back together because we did exactly what you mentioned....worried about everything except each other. Its nice to have some back-up and encouragement. You are awesome, as always. much love ~j

    p.s. I have a video coming your way, hopefully tonight, probably via FB....finally caught Natalie on W2J :)

  3. you rock. thanks for that. sometimes we forget to not be completely wrapped in CF. It is nice for you to remind us we "have permission" to do other things and it doesn't always have to be about CF!!! Love ya

  4. This is a great topic, Josh. I just replaced 'CF' with 'the girls' and it made a lot of sense for my life. All parents need to take time for themselves and as a couple without the kids. It's hard to remember some days that I'm not just a mom, but getting out for date nights or girls nights help me remember. -Sara


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