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.
-Justin
