By Ryan Farnsworth
Living with ALS since 2015
A sad update about #VoiceYourLove ambassador Ryan Farnsworth: It is with heavy hearts that we share the news that Ryan Far died the evening of February 19, surrounded by his family. As active ambassadors of The ALS Association’s mission and vision, Ryan and his family selflessly moved us closer to our vision to create a world without ALS. Read more here.
This is the second in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. You can learn more about Ryan’s work as a writer, poet, inspirational speaker, and personal reflections as a person with ALS through his blog/YouTube Channel and through his book of poetry, “Seeds of Light Sown“.
Like many people, I used to think of myself as a sum of many integrated experiences, interests, and relationships. I’m a son, a brother, a nephew, and a friend. I am a writer, a poet, and an inspirational speaker. I am a lover of nature and meditation, a singer of songs, and a student of the world. I am also a person living with ALS.
I was diagnosed with ALS in 2015 at the age of 29. Since that time, I have been on quite a personal journey. The physical limitations of living with the disease are challenging. But, in my opinion, it is the emotional and mental components that are the true tests.
After grappling with the reality of this diagnosis, I realized that I had two options: I could either give in to worry and fear, or I could focus instead on the good that this experience has to offer me. This meant shifting my perspective from what I am losing to all that I am gaining from this change in my physical wellness.
It is amazing to me how experiences seem to move in cycles, expanding and contracting like drawing breath, to give us the learning that we need for our growth. I can truly say that I more fully enjoy my life now than I ever did when I had full function.
At times, I am filled with fear and doubt for the future. But I have also found that there is something else within me, like a light behind the clouds. If that light were to speak it would say: “Do not despair, and do not lose hope. This life is good and worth living.”
I learned to love my body in an entirely new way. By having compassion for my physical self and the changes that were happening, it was a great personal relief. A desire to be of service to others blossomed within me, especially for those that have been affected by ALS.
My family and I decided to get involved with The ALS Association, and participated in support at many Walk to Defeat ALS and Ride to Defeat ALS events. There is something so powerful about connecting with others going through this challenge. Even though the daily experience can feel quite hard for many of us, there is such power in coming together and being there for one another.
I am inspired to see the strength of such beautiful people who, like me, are learning to find enjoyment of life even while facing such incredible adversity.
They say that evolution is driven by necessity. The intense challenge of living with ALS is a fire that has forged me into a far better version of myself. But I do not consider that I am battling against ALS. It is unhelpful to me to frame it this way, and frankly it is not a fair fight. And if I thought of it this way, I would be measuring myself as failing as the disease progresses. I decided that I needed to love my body and myself as I am.
I have grown to understand that, as tough as this experience is, it does not have the power to limit the amount of joy, love, peace and gratitude that I can feel. I have learned to see the incredible beauty that surrounds me, especially in the faces of my family and friends.
The biggest gift for me from this experience is that I have been able to connect so deeply with others, and can see them for who they are. And the love that I have experienced while living with ALS is beyond description.
To me, love is the recognition of oneness between people. Love is a breaking down of the barriers that cause us to feel separate from one another so that we can connect more deeply.
To love another person is to see who they really are, as more than body, mind, or personality, more than their quirks, perceived faults and flaws. To love is to embrace one another as beautiful and unique expressions of the life expressing itself through each of us.
So I want to take this opportunity to express my love for all of you in our ALS community. It is a pleasure to be with you on this journey, and I hope that you all will #VoiceYourLove for the people that matter most in your life.
As part of a new nationwide campaign, The ALS Association challenges you to “Voice Your Love” and help us raise awareness about ALS and one of its most devastating impacts: the loss of a person’s ability to speak. Learn more at voiceyourlove.org.