Jul 092014

I have been reading Josh Hanagarne’s World’s Strongest Librarian blog for a while now.  He has helped me realize that life is, well, livable, no matter the trials.

Laced through his blog is the “How to Have Tourette’s” series.  He is currently at part 22 and they are continuously informative and inspirational.  Through his eyes and magic fingers, we see that while he has Tourette’s, Tourette’s does not have him.

There is much to be learned from this.   Now I am not a doctor, nor do I play one on the internet.  I do not pretend to know anything more about Tourette’s than I have read on WSL.  I do however know that it is not just the weird guy screaming profanity crossing 13th east and the stereotypes that have been perpetuated in popular media.

It is not funny, and it is not something to laugh about.  It is debilitating and insidious in its forms.  So, what can Josh teach us about?  Living.  Doing whatever you want to do despite what nature has dealt.  Own the disease, don’t let it own you.

This is a trait that I really want to pass on to my kids.  My youngest daughter was diagnosed with kidney failure when she was 11 months old.  It took 2 years of dialysis and hospital visits, including 2 major surgeries and 9 less major surgeries, before she got a kidney transplant. She is now almost 1 year post transplant and nearly 4 years old.

I want her to have much the same philosophy as Josh.  While she has kidney failure, it will not have her.  She was amazing through all of the tests and surgeries, just rolling along and doing what was necessary.

She did 4 four hour sessions of dialysis every week without much complaint.  Some people will say that it is because she is young and kids will adapt.  That may be some of it, but there is a personality that can handle these trials.

She will be on medication for the rest of her life to keep her body from rejecting her new kidney.  This kidney will also fail at some point in the future.  At that point she will be back on dialysis and hoping for a new kidney.  We, our family, know this, and it is okay.  We are going to go on living.  We are going to make her strong with Kettlebells.  We are going to teach her to be mentally strong and be prepared when this kidney fails.

We have an online role model in Josh.  We will go on as long as we can with what we have right now.  We will push for our goals and take the setbacks in stride.  We won’t let kidney failure stop her or our family.

He is a role model for me because I need to be physically prepared for the day when her new kidney fails; so I can give her the next one.  I don’t have a disease that precludes me from anything, unless laziness is a disease.  I am giving myself 3 years so that I can be ready for the RKC cert, physically prepared for anything.

Thank you Josh for teaching us how not to be owned by your trials.  You are a continuous inspiration.

Thoughts?  Comments are open below.


  14 Responses to “What Tourette’s syndrome will teach you about coping.”

  1. Go on Justin. That attitude is going to take your family far man. It's easy to let an illness like that define who we are which will only ensure that that is exactly the life we have…illness centered. You've got a great heart and spirit, and a great purpose in strengthening your daughter and yourself so that you can both live lives defined by yourselves, not your circumstances.

    My wife has dealt with chronic illness for many years and it's put us through a lot of intense struggles as well. They told her she'd never get better, she'd never be able to work a job or live a normal life. She could only hope to “manage” her illness. We bought into that for a while, but then realized it was all wrong. She's not on this Earth just to be sick. We all have purpose, and the more that she defines herself outside of her illness, and the more she works towards that purpose, the healthier she gets. In her mind, she is almost perfectly healthy, and her body is playing catch-up, trying to be as healthy as she needs it to be for her ambitions in life. I see it before my own eyes.

    • Thanks Carlos. I know there are a lot of times when doctors think that they just need to tell it like it is. While they do need to tell you what can happen, it seems they focus on the negative and dwell on what can happen. They think clinically and treat symptoms instead of the patient.

      While there is something to both, there were times on dialysis that they kept treating symptoms as they came but they would get this myopic view of things and forget that this little girl is growing and the whole process of dialysis needs to be reevaluated for her growing body.

      It is easy to give up and just do what the docs say. I am happy every time I learn about others who don't buy into that and go out and live. Those who refuse to be defined as “sick”. We try not to treat Amelia any different from the rest of the kids. For all she knows, she is a normal kid with a new kidney.

      Thanks for sharing about your wife, good luck in your trials too. It sounds like you are on an awesome path, I wish you both the best!

  2. Thanks Justin, I really appreciate your words. Your family is an inspiration. There's a lot we can all learn from what you've experienced and how you deal with it.

    • You make me blush. We have never thought to be an inspiration, we just do what needs to be done. and we won't let any of our family treat us like victims.

      • You know, I think it would make a really great e-book. It's one that might not be as marketable to your typical traffic, but it might be one that could rank well for search engine traffic and be a really good resource for other people in similar situations. It's hard to know how to handle this stuff because it can be so overwhelming, and we're supposed to trust doctors, but sometimes you have to do what's right for you. Everything I've heard you say about this situation has indicated that you and your wife have been really strong, supportive parents dealing with a tough situation in ways that aren't always instinctual, but more mature and healthy.

        Give it some thought man. If it sounds like something you might like to do, it might be a good idea to put together a short, free e-book talking about one or two things in-depth to see how it does, and then develop a longer e-book with your full story and what you've learned in raising a child with a serious medical condition.

  3. Wow, what a great attitude! Your daughter is lucky to have such a devoted dad.

    Thanks also for the comment you left over at my blog today. Looking forward to growing our blogs together 🙂

  4. This is perfect. I'm going to run your interview tomorrow.

  5. Having read the comments first, I have to congratulate Dave on his sense of timing. Between this and your interview over at his place I feel like we've been introduced to you all over again.

    As for you and your family, I find your experiences very humbling. I feel unqualified to add a proper comment because I have been through easy stuff with the children, especially compared to the sorts of things you guys have had to deal with. Thank you for your honesty. It is wonderful.

    • Thanks Eleanor. Everyone has their own trials, I am sure you have dealt with things that would surprise others. you just take things in stride and it is normal for you but an outsider who is shown your world goes Wow! It is interesting. Thanks for reading, there will be more to come!

      • Nah, my life has been fairly dull and unexciting (for which I am eternally thankful, I'm not complaining!) but I take your point that we tend to just deal with stuff as it comes up. Looking forward to reading more 🙂

    • Thanks Eleanor. Everyone has their own trials, I am sure you have dealt with things that would surprise others. you just take things in stride and it is normal for you but an outsider who is shown your world goes Wow! It is interesting. Thanks for reading, there will be more to come!

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