One Step at a TIme

I watched a Tedx Talk by Hiro Fujita about ALS. Well, I guess it was mostly by his friends. During the time this video was made Hiro was in the later stages of ALS where he had already lost the control of his own voice. His friends describe his childhood in Japan and how he was always known as the vibrant person who lit up every room. Hiro went to college in Hawaii and later got a job in a marketing firm. His boss talks about the confidence and can-do attitude that made him hire Hiro in the first place as well as helped him overcome every challenge he encountered. Then about 3 years ago, he began complaining of fatigue and numbness in his hands. After 3 months of testing he was diagnosed with ALS. The doctors pretty much told him there was no cure and good luck. Hiro had to figure it out on his own.

As the disease progressed Mr. Fujita had to watch his body die. Meanwhile, his brain functioning perfectly in the prison his own body had become. He was given a choice. At the point where his swallowing and breathing become too difficult, he had to decide whether to get a tracheostomy or “let nature take its course”. He chose to stay. And his reason – because he still had not made a difference in the world.

I picked this material because I wanted to learn more about how people cope throughout the course of neurodegenerative diseases. It seems like the videos I watch about individuals that have been affected by diseases like that are so inspiring. Instead of giving up, they get motivated to live life to the fullest. Even to the point of saying things like, “this experience was a blessing”. I went online and researched support groups/organizations for other neurodegenerative diseases and was amazed at the results. The multitude of people pushing for a change is humbling. The way I see it, a disease is only going to keep us down until it encounters enough resistance. Resistance in the form of pissed off people who want to prevent it so badly from it ever happening to anyone again that they will raise awareness to find the cure. Well, we are definitely one step closer. Thank you Hiro. 

If you want to watch this, check it out on YouTube.

https://www.youtube.com/watch?time_continue=30&v=FIBmKX4UnaE

Stronger

I do not know how most people deal with running on motivation fumes or feeling, (sort of), sad in general. My secret is: getting some rest and watching something inspiring. I needed that combination today, so I decided to take it easy and watch the movie with Jake Gyllenhaal called “Stronger”. It is based on a true story about one of the survivors from the Boston Marathon bombing. Jeff Bauman was one of the 16 out of 243 victims, who was so severely injured he had to have two above the knee amputations. The plot did a fantastic job portraying how challenging it is to deal with such a sudden and unexpected tragedy, not just for the affected person themselves but for everyone involved.

I guess I have started to see the world through my ‘OT glasses’ more and more lately, especially when watching movies about overcoming physical obstacles. It was interesting to relate everything we learned in class; from the process of first aid on the scene, to acute care, to rehabilitation, and back to home. I watched for correct posture during patient transfers, assistive devices and even wound healing. Even though they did not necessarily show occupational therapy I considered what our role would be. For example, ensuring the environment is adapted for client to be able to get around – building a ramp up the stairs, making sure the toilet paper is close to the toilet, not moving the wheelchair so person can reach it when they get up etc. Simple things that when combined make a big impact to the recovery process.

Educating the client and family about expectations and healing process was a significant factor that affected Jeff’s internal struggle. At one point in the movie the PTs are lecturing him about how even though he had three sessions scheduled this week, he has only been to one and not ready to put in hard work (he was hungover). Jeff did not try to make excuses or blame it on other people. Although, I thought he should have. I guess this just goes to confirm that we should always ask questions and try to be as understanding as possible because we never know what the situation is. Healing is also an emotional process, and sometimes re-establishing one’s self-worth is just as challenging as dealing with the physical aspect of recovery.

     Apart from the OT related features of the movie, the story itself was very interesting. I read more about the real Jeff and his now wife Erin, and how they have continued to live life to the fullest. Their refusal to be broken has inspired and helped with coping for many others who have lost loved ones in war related accidents. Being as public as Jeff was about his accident and recovery put a lot of pressure on him to be strong, however, it also gave him a chance to be someone who people looked up to. It’s hard to make yourself vulnerable to the world but sometimes we forget the other side, when you need support – you have the whole world behind you.

     These are some pictures of the Jeff and Erin Bauman, and Jeff carrying the American flag at the for the Bruins. I strongly recommend this movie, if anyone is interested in watching it. It is on Netflix. Here is the trailer https://www.youtube.com/watch?v=I6MN0QfQx7I

 

https://www.google.com/search?q=jeff+bauman+married&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiDyK32oLzbAhU2JDQIHaE-AQYQ_AUICygC&biw=852&bih=723#imgrc=N21uTK3c_JIJbM:

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