Scott Lew, who suffers from ALS or Lou Gehrig's Disease, relates his story to encourage you to vote for the Beauty Bus Foundation in the Pepsi Refresh Project.
or breathe without the aid of a mechanical vent, I still want to look my best at all times. Call me vain, but you wouldn’t believe the number of people who see me, look past my wheelchair and ventilator face-mask, and say stuff like, 'Man, your hair’s getting long.' Either because of my partial baldness, which exaggerates my otherwise bushy hair when it goes bad, or because of the genuine goodness of people, who don’t want to comment on my obvious disabilities eight years into living with ALS and are just trying to make small-talk – I’m not sure, but it’s clear – I need regular haircuts. So do thousands of people like me.
It’s a huge production for me to get out to the barber. First, my wife Annabel needs to find a babysitter for our twin boys Rocky and Roman. Then, we have to load me and my gear up in the van and bring a caregiver or 3rd person with us for safety, just in case something happens to me while we’re driving like my head shakes loose or one of the hoses on my vent pops out. At the barber shop, I need manual breathing assistance, also suctioning of saliva, while the barber cuts my hair. It can be done, but it’s tough.
So when the ALS Association told us about the Beauty Bus, my wife and I were eager to try it. Honestly, I didn’t know what to expect.
I was just hoping for something not embarrassing.
But Beauty Bus volunteer Janine Jarman exceeded all expectations. At 5 feet tall and 100 lbs. soaking wet, with her nose ring and punk-rock cute skull-and-crossbones sweater, Janine packed a lot of personality into her small person. And I discovered—talent. Not only did she give me a great haircut (I’m easy, just short please), she also gave my wife, who has layered wavy hair that makes styling her difficult, an excellent cut as well.
Later, we found out Janine owned her own salon, impressive for her being only 28, and also was featured on the Bravo reality show Shear Genius where she came in 2nd place. This was a young lady who could charge several hundred dollars for a haircut, if she wanted, spending her time helping people with her talent for free.
I can’t say enough positive things about the Beauty Bus. We found their service so extraordinary and helpful. The world really would be better if their operation was larger.
I’m sure there are thousands of people with terminal or chronic illnesses who could use their help. So it’s with great enthusiasm, I ask you to vote for them at www.refresheverything.com/beautybus to win much needed funds from the Pepsi Refresh Project. The Beauty Bus truly is a "great idea" worth funding.