Facing ALS With Courage, Love, Joy, and Power
Written by Irene van der Zande, Kidpower Founder and Executive Director
Siobhán is a childhood friend of Marylaine Léger, our Québec Center Director. Siobhán wants to share her story widely so others get to “meet” her and learn about living with ALS – and also as a legacy for her 3 children. She is happy to answer questions and to hear other’s stories.
As I watched the “Conversations with Siobhan” videos telling her story, I laughed and cried and felt incredibly moved by this brave and beautiful woman’s wholehearted determination to live her life as fully and joyfully as possible even as her body is failing. I am sharing her story and the links to the videos as a gift to you because they are full of wisdom and humor as well as sadness – and as one small thing I can do for Marylaine’s dear friend from 3,000 miles away.
In June 2011, Siobhán was a healthy, happy mother, wife, elementary school teacher, yoga instructor and fitness coach who had just given birth to her third child. In July 2011, she went to the doctor after she starting losing her balance too often and had bothersome reactions with her arm and calf muscles. A few weeks of investigating later, she received the ALS diagnosis. In October 2011, Siobhán held a big 40th Birthday party for her wide circle of friends and extended family. With her personal invitation to the party came also the annoucement of her ALS diagnosis and a personal request to come celebrate life with her as well as a request for support.
Called by some doctors “the cruelest disease”, Amyotrophic Lateral Sclerosis is a degenerative and fatal illness. ALS is robbing Siobhán of the ability to move, weakening and then paralyzing one muscle at a time until she will end up trapped in her body and only able to blink. Her prognosis is that she will die within 2-5 years from the time she is first diagnosed. Her request last year was for her friends to help her to make the most of the time she has left.
Since then, Marylaine has been visting Siobhán and her family when she can, even though Siobhán lives several hours away, and providing long distance support. She talks with Siobhán in her November 2012 Interview, when Siobhán tells Marylaine that she just celebrated her birthday and is now “forty-wonderful” years old. Marylaine and her partner Marc had the thrilling experience of joining her on a skydiving adventure, since doing a parachute jump with friends and family was one of Siobhán’s life wishes.
I encourage you to watch some of these videos for yourself to meet Siobhán and some of the important people in her life. If you wish, please honor Siobhán’s request by sharing this message with others who you think would appreciate it. Personally, I sometimes feel anxious when I see or hear of the hard times others are going through, because it reminds me of my own vulnerability to bad things happening. If need be, remember to use your emotional safety screen to filter out anxiety so you can stay with Siobhán in the moment, as she is choosing to be happy most of the time.
After 4 seconds, you can click to skip the annoying ads at the beginning of some of these videos.
Conversation 1- Introducing Siobhán http://www.youtube.com/watch?
“Facing death is like looking at the sun” – you can only look at it for so long and then you have to turn away.
“I am not going to dwell on the past or look too far into the future. I am going to live in the moment and enjoy my kids.”
Conversation 2 – Siobhán visits with her father http://www.youtube.com/
A touching conversation as Siobhán’s father tells his daughter how very much he loves her and how her example is inspiring him to live his own life with more kindness.
Conversation 3 - Siobhán’s skydiving adventure with the stepfather who raised her
You can see Siobhán’s deep connection with her stepfather and then her joy in her adventure as she makes the jump. She says that she wanted to do this because, “If I can jump into thin air at 12,500 feet, hurtle to the earth at 200 kilometers an hour, and just let things happen – maybe I can deal with living with this illness. You are confronted with what is happening now and you can continue to appreciate what is happening now, even if it’s scary.”
She says, “Even though my body is weakening, I don’t need to limit myself. What will continue to nourish that spark in me? I need to live life as fully as possible and to enjoy.”
Conversation 4 - Siobhán’s Visit with Marylaine http://www.youtube.com/watch?
With laughter and a few tears, Siobhán and Marylaine share their feelings about the losses that her illness is causing. Siobhán describes falling and realizing it was no longer safe for her to keep walking – and mourning this loss deeply – and then deciding to let the sadness go so she could keep being happy.
Siobhán says that, as hard as it is, she is making “The choice of continuing to be happy instead of sad and angry all the time.” She keeps playing and being happy with her children, “to be present in their lives and influence them in the best way I can.”
Conversation 5 – Siobhán talks with Krista, her personal support worker – “my hands and my legs”
Siobhán’s personal support worker, Krista, gives a vivid and heartfelt description of how she balances providing the help needed with giving Siobhán as much control as possible and their conversation about how it will go when Siobhán needs more intimate care. I think this video should be used in training every person who goes into this kind of work.
Conversation 6 - Siobhán describes how she is still going out despite the challenges
Siobhán explains how she overcomes the obstacles to going out into the community, including the hard work of getting there, having everyone looking at her, and the intrusive advice from well-meaning strangers.
We see her having a great time at an ALS fundraising event she helped organize at the aerobics club where she used to teach.
She is now facing the grim reality of losing speech and says bravely, “It just means I won’t talk as much. I am not going to let ALS defeat me! By this I mean, not going to rob my happiness, me enjoying life, me spending time with my friends and family.”
Conversation 7 – Tough Decisions http://www.youtube.
With simplicity and honesty, Siobhán describes the trouble she is having with breathing and swallowing.
If she makes the choice to have invasive medical procedures like having a feeding tube and a breathing tube inserted into her body, Siobhán worries about the burden on her family and friends. She wants to be sure to have a system in place so she can be treated with dignity, respect, and lots of care without burning people out.
She concludes sadly, “It’s just that I feel fear!”
Siobhán’s wholehearted acceptance of her feelings, pleasant and difficult, is what keeps her able to be fully present in each moment.
My heart aches for the suffering she is experiencing and soars at her many moments of love, joy, laughter, and determination.
Siobhán’s story inspires me to keep remembering to do my best to stay mindful and fully present, to cherish each important person in my life even when they are being difficult, never to take my body for granted, and to cope with hard times with the most dignity and grace possible.
Our wish is that is that each of you will see incredible beauty in every moment of this day!