The Benefits of Living with ALS (an introduction)

I was working as a server in Telluride Colorado in mid-2014 when I began to notice my grip loosening. I was suddenly having trouble picking up plates, holding onto saucers and gripping just about anything. It was a strange thing, as at the time I was in the best shape of my life at 27.

During summers I was hiking and mountain biking, and in the winter shredding the Telluride slopes on my snowboard. Things worsened physically for me, and after seeing several doctors and specialists I eventually received the unfortunate diagnosis of ALS.

Nearly 3 years has passed since I first began experiencing symptoms, time in which my physical function has continued to decline, but during this time I’ve also gained a lot of perspective from living with ALS. There are actually many gifts that this experience has given me. Now don’t get me wrong, ALS is a terrible disease with challenges aplenty, and unfortunately it takes a heavy toll on family members and friends as well. But those things are not the purpose of this first post. What I’d like to focus on instead is some of the benefits that the experience of living with ALS has offered me. I’d like to turn things upside down a little and give some insight on the ways that ALS is actually been a gift in my life.

But first i’d like to formally introduce myself. My name is Ryan Farnsworth and this is my first Steemit post. I love the idea of the platform, and the kind of community and ecosystem that Steemit seems to offer. I’m now 30 years old, living with my mom and stepfather who help me with the things I can no longer do (which is quite a lot these days, but I will get into that in another post.)

I love writing and within the past year I self published an uplifting book of poems entitled Seeds of Light Sown which is available on Amazon. I also had the amazing opportunity to take a month-long trip to India in which I was able to teach impoverished children math and English. Without a doubt it was one of the most fulfilling and awesome trips of my life! Alright, so without further ado here are a few of the things I’ve learned to appreciate during the process of living with ALS.

The Advantages of Living with ALS

1. Enhanced appreciation. Most of my life I’ve sort of been floating through, without a whole lot of purpose and often times without a whole lot of enjoyment. But you know that saying: “you don’t know what you had till it’s gone?” Well at one point or another most of us have a certain invulnerability complex, especially earlier in life when we were young and fearless. Bad things that happen to other people don’t register as possibilities for us so much because there’s no way that will ever happen to me. Well for me that thing happened, and it happened to be called ALS. And when all of the sudden that diagnosis hit me the world seemed to matter a little bit more. Flowers seemed brighter, the world itself seemed more colorful and vivid, and all of it seemed more precious now that my future experience of it all was uncertain. The ironic thing is that the world hadn’t changed at all, I had. I began to think about all of the awesome things in this life that I didn’t want to live without, and that has truly been a blessing for me because it showed me what’s really important.
2. Cutting through the Bullshit. When the future of your very existence in this lifetime comes into question a lot of things that may have taken up a lot of time before cease to seem important. I began to see through life’s trivialities and petty dramas, the stupid things that we end up caring about and pretending are important. And things that before I had not given enough attention to like family now took a front seat as my heart expanded in new appreciation for life I began to see that life isn’t about how much money you make, or what you own. It isn’t about social status or what others think of you. It really comes down to just a few things that are truly important: love, joy, and peace.Sometimes those words don’t have a whole lot of meaning because of how broad in scope they are. But what I began to realize and what I continue to experience throughout this journey is that cultivating those three things in life are what truly make it all worthwhile.So ALS has taught me to simplify my understanding of life, cut through all of the bullshit and distractions and do my best to get to the core of experiencing what is really important.
3. Free time! When you find out that you may be dying from a terminal illness, the world doesn’t expect much from you anymore. So in the beginning, and still to this day it’s kind of awesome not having any responsibilities. I used to make up excuses for why I didn’t meditate enough, write more, take better care of my body.But now I have the time to focus on what really matters for me, a lot of time in fact! And sure a lot of this free time has been spent trying to process this new life predicament, thinking about life-and-death, and in processing the reality of this situation. A lot of time was spent in emotional processing, in stages of grief, or walking a tight rope with fear on one side and hope on the other.After all, ALS isn’t something that hits you all at once but a process of becoming used to change. It isn’t something that you can conquer in the mind and get used to because it’s ever-changing along with declining physical function. With each new thing I can’t do on my own anymore, every time I reach a new level of reduced function, It is necessary to find acceptance.I understand that we can’t fight what is happening, in life for to fight against reality is madness. But what I can do is strive to find solutions, and much of my time has been spent doing just that. Doing research on ALS and its mechanisms of action, finding supplements that may make a difference to improve my health, talking to doctors and naturopaths trying to find innovative solutions; these have all been things that took up my ample free time and keep me busy.And truly, I’ve been grateful to have the free time during this life challenge. It has helped me to stay focused on what matters rather than have to get caught up in the dance of the world. And I’m not separate from the world, but at times this journey feels like an incubation in which I am finding myself and giving myself the love necessary to heal.It’s a time in which I can’t necessarily do all the things needed to take care of myself physically on my own, but I can do my best to take care myself emotionally, mentally, and spiritually.
4. The best part of gaining this kind of learning and growth while experiencing a terminal illness is that I don’t believe it will be terminal at all. I’ve had this feeling in my heart since the beginning that this is not my time to go. The ups and downs of going through this experience have certainly shaken my belief in healing at times, but my guidance is telling me that the universe and God are in the process of weaving together a reality in which I return to wellness.I can almost feel the doubt of certain people who may read this; people that understand that to this point ALS has no known cure. But truth be told I don’t care what anyone thinks because I hold my own truth within. I could of course be wrong, and if I am I will do my best to live this life in a way that honors myself and my family and all of the beauty that is in this world.But what a gift to be able to experience such a challenge is this. At the age of 30 to have faced death in order to more greatly understand the value of life, and to carry these lessons with me into the world. What a gift to be able to get a second chance at life and do my best to in some small way make a positive difference in this world.Thank you for reading this first Steemit post. I intend to make this blog a bit of a mishmash of many topics ranging from ALS to spirituality to poetry, and perhaps other topics. It feels good to have an outlet to express myself once again. And I hope to make new friends here and look forward to connecting with you on Steemit.

With Love,
Ryan