Here’s the story I wrote during college of the 70-year-old quadriplegic ALS professor who inspired my life.
Throughout my life, I have been inspired by people. Each person with a different personality was able to help me on my journey to be the person I am today. Even though many have inspired me, they haven’t always inspired hope within me. Just recently, one particular pair has been able to inspire hope within me that could definitely lead me to the kind of life I want. Out of this pair, I got the opportunity to interview one of them. Their life may not always have been great, but they were able to accomplish so many things throughout their life, and still provide and receive one of the most significant elements I truly value: love.
The couple that has inspired hope within me is Mr. and Mrs. Robillard. I consider both of them my bosses, but to be technical, Mr. Robillard, Emeritus Professor Albert Robillard, liking to go by the name “Britt”, is the main boss, and Divina was his all-around amazing wife, secretary, and nurse. Although it began during my fall semester of Organic Chemistry I, I did not technically meet Britt until the following spring when I was taking Organic Chemistry II. I was receiving tutoring by my Organic Chemistry/Biology tutor, Jenny. I went to see Jenny to the extent that I got to know her more than just a tutor. Jenny became not only a friend but also a mentor for me since she had the same goal to attend medical school.
On more than one occasion, I would run into Jenny, and she would mention that she is heading off to work. I, assuming that she meant tutoring, didn’t think much about it until she said the same thing after one of her tutoring sessions in the library. I found out that she had another job working with a retired and paralyzed professor. By then Jenny peaked my interest. Knowing I had an interest in neurology, she explained her job description: to assist Britt by reading his lips and basically being his “legs, arms, and whole body,” communicating to the outside world. She explained how she goes over his emails with him and assists him with any bedside manners that he wants or needs. Email is Britt’s way of receiving news of colleagues, friends, and relatives as well as giving his own news.
Buring March I was able to meet him, and I really didn’t know what to expect. I guess I expected a very stiff and old man, but when I actually met him, he looked to be fragile, young-looking for his age, and alive. Yes, he was alive with a certain vigor that possibly most people in his situation would not experience. Throughout that first meeting, I also realized that he wasn’t as fragile as I thought. I would observe as Jenny would constantly maneuver his body on his wheelchair and his headrest numerous times, and Britt was able to handle all the movements and motions. I was a bit anxious during that first meeting, but Jenny always mentioned to be patient, and I was and still am. Though he couldn’t move any parts of his body, Britt could smile, and he smiled at me as though he already knew I could take on the job once Jenny moved up on her studies at the John A. Burns School of Medicine.
After a few weeks, until I met with Britt again, I learned a lot about his way of communication. He has a lip-reading system that has been made specifically for Britt. Specific letters were assigned to different facial movements, and the main job is to read his facial movements and spell out his wants and needs through the words he spells out. During my training, this had been the toughest area to grasp because I could only practice when I was with him looking at his face. Since I could only practice at work, working only three times a week on Mondays, Wednesdays, and Fridays for three hours made it challenging. I couldn’t practice working with Britt unless Divina, or the other office assistants, Jenny and Alpha, were there to supervise me. Sometimes my time with Britt is limited due to Divina’s work schedule, Jenny’s schedule, and my schedule.
Once my three-month probation training had been accomplished, I could finally work independently with Britt in his office, as well as at his home. I couldn’t believe how Britt, as well as Divina, could do what took e three months to learn and more every since day as part of their routine. Even to this day, I am constantly amazed as to how Divina has the heart and energy to provide Britt with the best lifestyle possible. To learn that Divina is also a breast cancer victim astonished me more!
Britt and Divina were able to show me the strength of vulnerability and love. With vulnerability and love, also comes trust, loyalty, and hope. During my first month I was able to read Britt’s book, Meaning of a Disability: The Lived Experience of Paralysis, and I read a lot about Britt’s different experiences since the onset of his Amyotrophic Lateral Sclerosis (ALS) disease. You could probably imagine the difficulties one has to go through when one is paralyzed. You are totally at the whim of someone else, you can’t vocally say what you want and need and you can’t travel where you wish. You are stuck. Now imagine that you have created a lip-reading system specifically for the facial movements you can do, but only certain people can grasp your language. Imagine someone ready your lips for you to urinate and they are reading something else entirely!
This power couple has truly shown me what true and unending love is like, and all I want to say is my many thanks to them: for Britt no giving up on himself and Divina for not giving up on Britt. In his book, he mentions how he “was no longer consumed by searching the medical literature for a cure, he started to take a new attitude towards his work as a sociologist” (Robillard, 1999). He mentions a story of how an emergency professional took advantage of Britt’s paralysis to ask Divina for a date, and Divina refusing him or anyone’s advantages. How many people would continue to stick to their significant other’s side when a crisis strikes? It is rare. Thankfully, I met these two who will always remind me that their kind of love is possible for me as well.
When I interviewed Britt regarding what personal peace meant to him he facially-motioned, “lack of tension.” How he practiced peace was more straightforward saying, “remove sources of tension in the environment.” His advice for the Peace and Conflict Education class was to “be calm and always think about what is bothering you (Robillard Interview).” After typing, I had to really reflect. Here was a man who should know what he is saying. Living decades past the day people with ALS usually live up to, should know a lot, right? I never questioned him as well as the women I’ve read about in the assigned book.
Like my sociologist boss, another sociologist I came to know was Jane Addams. Jane Addams, who was born in Cedarville, Illinois, repeatedly risked censure – and the work of public favor – in addressing the causes of poverty and working for peace during a “popular” war. Prior to her reformer days, Jane Addams contracted tuberculosis of the spine, also known as Pott’s disease, which caused a curvature in her spine and lifelong health problems. Because of her disease, she had difficulties with other children since she had a limp and could not run as well as the other kids. Despite her difficult childhood, during her teenage years, she had big dreams to do something useful in the world and therefore studied to pursue medicine. Because of her health problems with a spinal operation and a nervous breakdown, she was unable to pursue that path. It wasn’t until after her brother-in-law and stepbrother advised her to travel instead of pursuing studies did Jane realize that there are other ways of helping the poor. Jane Addams has inspired hope within me to think that there are many routes to arrive at my final destination no matter what that may be (True: Jane Addams) (Addams, 1972).
There are many people out there who continually mold us to be the person we are, whether they are those we meet throughout our lifetime or they are from centuries before our own birth. From those people, we need to heed the people who have inspired hope. We need to heed the people who have really share the lifestyle, experiences, and morals that are in alignment with ours.
Throughout our lives, we meet different people. Those people we meet provide us with different experiences. The best way to find people is to first become inspired by ourselves before having the ability to inspire others. Those who work to inspire hope are those who have faced the obstacles. Though they are just normal people like ourselves, they were still able to go beyond what was expected of them, teaching us to do the same.
Wow, I forgot I wrote about Jane Addams, too, while I was typing my story out. But all the more stories, right? Hehe. Overall, I hope you enjoyed reading about a part of my past and although he is no longer living, like many who has strongly inspired us in some way and has passed, he remains in my heart motivating me in life. Do you know anyone with ALS? Please feel free to share his story in the hope it inspires someone. I’m sure it will, so I enabled Pingbacks & Trackbacks. 🙂
Follow me so you can be updated on when I share about my last month and a half working at his bedside.