My Name is Bobby Forster, I Live In Newport and I Have ALS.
What would you say if you were told that you would be dead in two to five years? For me, I simply said that is not going to work. So far, I have been right!
Hi, my name is Bobby Forster and I am a 27 year old Newport resident living with ALS. What is ALS exactly? Well it is a pretty vicious disease that turned me from a healthy young guy to this In a little over two years.
So, what the heck is the deal with this disease? It is a neuro degenerative disease that quickly takes away your ability to move any muscle in your body. This means it strips you of your ability to walk, use your arms, talk and eventually eat and even breathe. I can no longer move much of my body, eat via a feeding tube, control my wheelchair with my head, need a machine to breathe and communicate with a computer that I can control with my eyes!
Looking back, my diagnosis is kind of funny in a way. I remember a few years back I heard that a friend of a friend was paralyzed in a diving accident. I remember thinking if that was me, I would off myself. I truly believed that I would too. What would be the point? Why would anyone want to live like that? Reflecting on it now, I was being incredibly ignorant and judgmental. What kind of person looks at a life and says, “yeah that is not a life worth living.” I am willing to bet that at least some of you reading this will think that same way about my life and you couldn’t be more wrong.
I am incredibly happy despite the disease and these past two years have been some of the most exciting and meaningful times of my life. I got married to the love of my life, traveled a ton, been involved in various clinical trials and even brewed a beer with Newport Storm. Also I have been an advocate for ALS patients with the state and federal government. Most importantly I have learned new skills and discovered that nothing is impossible and that being scared of life is silly. Each day I learn to love deeper and truly live in the present moment. So please, if you see me rolling around town say hi, but never feel sorry for me. I sure don’t. I plan to keep rocking this strange life I have and I will have a blast doing it!
Editor’s Introduction: I think it’s important to introduce this new series that we will be running here on What’sUpNewp. Like most grand ideas that people come up with, I came up with an idea to offer Bobby Forster, the man who you will be hearing from today and over the next few weeks, months and hopefully many many damn years, an opportunity to write about his journey and experience on What’sUpNewp while walking my dog one evening last week.
His answer via Facebook messenger that night when I approached him about it – “F*&k yeah! That sounds incredible! Thanks so much for thinking of this!!! you just made my night!”. Typical Bobby fashion.
I’ve known Bobby for a few years now, when I first met him he was that friendly person (there’s not many as friendly as Bobby) that I would always see running into Mokka Coffeehouse on Lower Thames Street before, after or during his pedicab shift. Never shy to say hello and make it a point to ask how you were doing, what was going on or make any random small talk, Bobby instantly became someone I adored and enjoyed seeing.
Bobby and I have many of the same mutual friends, like many of us seem to do in Newport. But, Bobby has the best friends you can find in Newport. From what I remember the moment that I first heard that Bobby was diagnosed with ALS, his friends were sending me flyers and asking me to promote events and fundraisers at O’brien’s and here, there and everywhere. I’ve even poured water over his friends head in 2015 for the ALS Ice Bucket Challenge.
I’ve attended fundraisers, i’ve donated money, i’ve given him the hello when I see him that I know he would give me if he could still talk. My thought on offering Bobby this opportunity to share his journey and experience living with ALS, is so other people can get to know Bobby, other people can get to know Bobby’s amazing friends, how they can help in the fight against ALS, what they should know about ALS and perhaps…maybe in a small way some of us busy Newporters will slow down and be thankful for what we have, be a little bit nicer to those passing us by and realize what an amazing and supportive community we live in. Bobby will tell ya.
Finally, Bobby is an inspiration and he deserves this opportunity as much as you deserve and need to hear it. Bobby’s story deserves to get told, in my mind Bobby is speaking for all ALS patients who can’t tell their story or who didn’t have the opportunity. ALS deserves more funding, those who have ALS deserve more time, respect, resources and no one should fight alone.
What about Bobby? In his owns words, this is his story….
To learn more about Bobby, visit http://www.acureforforster.com/
Look for another installment of What About Bobby on What’sUpNewp soon.