How am I Doing? (May, 2018)
There remains a good deal of challenge within this experience as you might expect, from the physical deterioration and limitation to the emotions of fear and worry that occasionally find their way into the foreground of my awareness. My muscle function has continued to deteriorate although I am confident that it has slowed considerably. My weight has been steady for about a year now which I believe to be a positive sign, but there is one point of worry that has weighed a bit heavily on my mind recently. Even though the rest of my function seems to be relatively steady it seems that my breathing has been declining more quickly. I’m not going to try to sugarcoat the difficulty of this, but as it is something I am freshly processing I don’t want to dive too deeply into it at this time either. The fear and worry sometimes takes me over a bit, but whenever I am able to I hold these emotions in conscious compassion.
I temper the worry to the best of my ability with the knowledge that I am doing all I can to stay in balance, infusing my life to the best of my ability with gratitude and groundedness within my body. I am called to be of service and doing what I can to spread a positive message as well, a message that is constantly being empowered within me by a growing sense of curiosity, love and joy of this process of living. And as far as my mental and emotional health as well as physical and spiritual well-being go, I am doing my best to take comfort in the knowledge that I am doing all that I can. For the rest I trust in God, my guides, and this process in the knowing that it is all unfolding for a reason.
Lexi offering emotional support :)
And yet even as I say those words being transcribed onto the screen with voice dictation software, I can almost feel a collective question: “what possible reason could there be for this?” So many answers flood into my mind, but perhaps the best answer can be found within this affirmation that I say out loud each day to remind me of the truth:
“I am a brave soul, a warrior of light. This life path was envisioned with me in mind, so that I might learn to fully love and to honor this body, to grow through and rise above challenge, and as an opportunity to be of service. I recognize that all that I experience including perceived obstacles are for my highest good, and that all I need to overcome them is available to me now. This story that now unfolds is being written within the present moment and I remember my role as a creator of this reality. I am conscious of how my thoughts, words, and actions seed the future and I cultivate only that which I want to experience more of. I welcome and embrace all emotions including the uncomfortable ones in the recognition that each is here to serve me. I am driven forward by the curiosity of what is being created for me as I walk this path.”
It is my belief that this thing called ALS is no more an accident within my life than the spiritual expansion and awakening process that is currently unfolding within me. I truly am lighter and brighter than I have ever been before, and I want to quickly touch on a few of the factors that I believe are contributing to this. First and foremost, I try to use my precious “brain juice” or daily energy, focusing on the good that is within this experience (and there is so much to be grateful for.) This is re-training my brain to see the good in everything, including myself, and as a result it is the good that is my primary experience of reality. I am increasingly reconnecting to my emotions and parts of myself that I have neglected in the past, and through this reunification I am noticing more openness and clarity within me. And perhaps most importantly, I focus on the learning and growth that these challenges can offer me instead of fixating on or identifying with the physical limitations themselves. I have found that fixating on limitation or a “sad story” is unhelpful at best, so I prefer to focus on what this experience is offering me. The various challenges that arise within this life experience of living with ALS are extremely valuable to me. They are the most powerful teachers that I have ever known, and having embraced them as such the personal and spiritual expansion that I am experiencing has been liberating, especially within this last month or so.
In many ways life is like a jigsaw puzzle. You slowly put the pieces that you have been given together, and as they begin to fit more and more of your true nature is uncovered. At times I, like so many others, have tried to force mismatched puzzle pieces together for the sake of convenience, all the while trying to convince myself that they fit in my life when I know they do not.
For me, finding a way to balance the role of technology into the puzzle of my life and to make it fit has been a challenge. Numbing out through the use of technology has been a theme throughout my life, and by decreasing the amount of time that I spend in this way so much has opened up to me.
My mom, stepdad, brother and sister, grandma and grandpa
At first it was quite uncomfortable spending hours outside without phone use for example, and I quickly became more conscious of an underlying unease and dissatisfaction with life in me, wanting to run away from that feeling in the same way that I used to.
But the more that I have learned to stay present without the distraction of my phone the more of my true nature is being uncovered. The feeling of dis-ease that had been a normal undercurrent of my experience passes, and I feel more connected both to myself and to life itself. The best part, I am happy to say, is a subtle joy that is beginning to infuse more and more of my experience.
Restructuring the use of technology in my life feels like a particularly big puzzle piece that has clicked into place, but other pieces have had a powerful impact as well. About two months ago I began a daily morning practice of thanking God and my guides for all that is good in my life, self love affirmations, and meditation that have been shifting my experience of life in a positive way. I am now adding a nightly meditation as well.
By removing pieces that don’t belong and rearranging the pieces that do, I feel so much more light entering my experience. As so many spiritual teachers and mystics have described it doesn’t feel like I am gaining anything more, but instead simplifying and returning to a more natural state. It is a process of uncovering what was there all along, behind unnecessary walls, underneath the unhelpful stories and outdated belief systems.
I do not know what the future has in store for me. It is my sincere and heartfelt hope that I can to continue on this path with you for many years to come, to continue this story of learning and growth, this beautiful unfolding. There is nothing more that I would enjoy, but only time will tell. All we ever have this moment, and this is where I intend to stay.
Life Events / What I'm Working On:
It has been a busy few months!
The annual ALS walk in our area was on April 28th, and it was such an incredible experience. Family from all over the state came out to support me and the ALS Association in raising awareness, providing care for people living with ALS, and funding ALS research. “Team Ryan” was a veritable army that day! I had the opportunity to give a small speech (see video to the right,) and after the walk we got together for a big barbecue. The whole thing was basically a big family reunion! The energy of the love and support was such a palpable thing, and I felt so incredibly lifted up getting to spend time and connect with all of these people that love me and have had such a big influence on my life.
I also had the honor of presenting a well-deserved award to Robert Blum, the president and CEO of Cytokinetics. This is a company working hard to create medicine that will prolong muscle function in ALS patients and those with other neuromuscular diseases, and I am so proud to know them.
I participated in the Dutch Bros 2018 “Drink One for Dane” event this month, a day in which all proceeds went to the Muscular Dystrophy Association! Me and my dad drank one for Dane, and for all people living with ALS and other neuromuscular diseases. The Muscular Dystrophy Association also wrote an article about me and posted it on their blog this month. If you are interested in checking it out, you can find it here.
I’m currently writing my next book as well! It doesn’t have a title yet, but it is a compilation of many of the ideas and insights that have had a profound impact on my life. Some of these will be synthesized from Facebook posts from over the years, but there are many other unique insights that have made a difference in my life that I am excited to share. My vision is that each page will be an individual idea or insight, and that the book as a whole will function as a sort of inspirational daily reader. I will be updating on Facebook as progress continues!
With the CEO of Cytokinetics Robert Blum
With the Sonoma Dutch Bros crew
A Note to Readers:
Whether you are going through the extremely difficult challenge of living with ALS, another chronic illness, or are completely healthy there is one thing above all else I hope you take away from visiting this website. If I can be going through one of the toughest challenges possible in living with ALS and thrive, you can too. Yes, there will be dark days with clouds looming overhead but I just want you to know that even though you may not see it the sun is there. Do not be afraid to seek it out feel its warmth on your face.
We can spend all the time in the world thinking about how long we might be here, but the most that anyone can ask out of life is to enjoy the ride. Above all else I hope that this website is a reminder for you to do just that.