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How am I Doing? (September, 2018)

Life Update:

Yes, this update may be novel-esque in length but it’s my website, damnit! :)

It’s amazing to me how life always seems to move in cycles, expanding and contracting like the breath to give us the experiences and learning that is needed for our growth.

It’s hard to believe that only a few months have passed since my last update in May. Since that time these cycles have brought me such a broad spectrum of experience, from the highs of spiritual expansion and living a life of purpose to feeling depths of worry and fear, hopelessness and abandonment unlike anything I have experienced for some time.

The feelings of expansion came in part from a greater degree of balance within myself, seeming to be the fruits of regular meditation and affirmation, a great deal of time spent outside during these warm summer months, and a wealth of opportunities to share about my journey and spread a positive message. 

One of the most exciting things that happened is that my mom, sister, aunt and me went on a trip to Telluride Colorado which was an incredible experience. It was my first time out-of-state since being diagnosed with ALS. Returning to the place where I lived for a few years was incredible, and my dad who lives there rolled out the red carpet for us! During our short trip I had the opportunity to do a poetry reading and talk at a restaurant my dad manages and that I used to work at, the New Sheridan Chop House. It was so much fun! I had just planned to do a poetry reading but it turned into an awesome question-and-answer time as well. (pictures below, and video of the poetry reading/talk can be found here if you are interested:  part one, part two)


Main St., Telluride

Incredible family dinner at the Chop House

Shortly after we returned I attended two ALS support groups near our home in Sonoma, where I had the opportunity to tell my story and talk about and guide meditations for people living with ALS and their families. There is something so beautiful and powerful about connecting with others going through this challenge, and even though this experience can feel quite heavy for many of us at times there is such strength 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.

During this time of expansion I did a lot of writing for my new book entitled, “Insights to Light the Way - Lessons From Life and ALS About Living Well”. I am super excited about it, as it is a compilation of the ideas that have had the most profound impact on my life distilled into drops (or individual insights) to create a sort of inspirational daily reader. I anticipate publishing it some time next year.

I have also made some changes to this website, adding a blog section where I post talks and Facebook live videos. The messages contained in these videos are helpful not only for people with ALS but anyone experiencing challenge or wanting to hear a positive perspective.

I recently had the opportunity to speak at Cytokinetics at their ALS Adds, Every Drop Adds Up Event about how ALS has enriched my life and what it has added to my experience. Cytokinetics is an incredible organization, and I am honored that they are riding for me this year in the annual Napa Ride which is the biggest ALS fundraising event in the country. I even did two radio show interviews with a friend here in Sonoma!


All of this expansion was great in that it helped to stretch me beyond the confines of what I was comfortable with and taught me to embrace the unknown when it comes to new opportunities. In fine tuning how to share a message with the hope of helping others I found that the information that I shared was serving to remind me of truth as well. When all of the events were done however, I found that I was exhausted!

My journey of expansion had taken me to all sorts of new places, but like returning home after some time away, I noticed that there was emotional housekeeping to attend to. As I began to settle back within myself and a daily routine I noticed that an emotional melancholy had taken up residence within me. 

I suppose the irony of spending a few months embodying the ‘positive person in spite of challenge’ role is that I had partly forgotten how important it is to honor my emotions, especially the uncomfortable ones. I had lost some physical function over the past few months but had mostly ignored it during that time because I had been cultivating a powerful sense of knowing that life is unfolding perfectly. As a result I ended up ignoring the source of my melancholy: a nagging sense of worry that all might not be well. 

I found myself with an urge to play video games often, not yet fully understanding that I was running from what I didn’t want to feel. That is until I heard that I may need to get a feeding tube, a realization that rocked my world in a much more in-your-face kind of way.

My swallowing is still pretty good so I had never even thought about needing a feeding tube before, but apparently breathing numbers play a big role in the decision for when to put in a feeding tube. With breathing numbers any lower than mine, I learned, they are nervous putting you under general anesthesia (which also dampens breathing) for the feeding tube surgery. As a result, the decision to get a feeding tube now (or potentially not be able to later) came front and center. I decided with my doctor that if my breathing numbers continue to drop by November I will agree to get a feeding tube. Tough stuff to wrap my emotions around.

This unexpected realization elevated my melancholy to full-blown worry and fear. A sense of hopelessness began to envelop my experience unlike anything I had felt for a few years. To some the idea of getting a feeding tube may not be the worst thing in the world, but to me it almost feels like resignation or defeat. In my head I imagine that a feeding tube would be a physical reminder or affirmation that things are going poorly. In truth I never imagined that the loss of physical function would go this far.

With these heavy emotions I find myself needing more time to be present so I’m setting many of my technological distractions aside. My initial reaction has most often been to move away from uncomfortable emotions rather than feel them, but I have found that the past few days without computer use have allowed me to be more present and honest with myself about my experience. All of these emotions that seemed insurmountable when I was running away now have a home until they choose to pass as all emotions tend to. 

I will be honest in saying that I do not currently feel like that ‘positive person in spite of challenge’. At times I am filled with fear and doubt for the future, but I am also finding there is also something else within me, that like a light behind the clouds is just starting to reveal itself.   


If that light were to speak it would say: “Do not despair, and do not lose hope. This life is good and worth living.”


Speaking at Cytokinetics

Me, my mom, Jenica Lancey (ALS Association), Diane Weiser (Cytokinetics)


I am beginning to see just how much my mind has been stuck in a mode of fearful anticipation, how much the future has overshadowed the present. I know that I am not finished here, with much to learn and much to share. I am learning how to find and maintain a still place within me that does not cling to the highs of expansion or push away the lows of emotions that are merely reminders to return home.

I am in the process of returning now, both to my body and more fully to this present moment in time. Despite the presence of difficult emotions I feel like I am on more stable ground now than I have been for some time. Even so, I do not fully feel like myself. Perhaps that is the purpose of all of this. Maybe the intensity of challenge of this nature is helping me to shed another layer, to tear down another wall, and to remind me of who I truly am.

The last time that I experienced this degree of emotional intensity and made a strong effort to be present to it, it was actually a gift. Once I made an effort to truly honor my emotions by being present to them I ended up feeling lighter and brighter than I had remembered feeling before.  It wasn’t easy to go through at that time but the reward was great. I think that what I am experiencing now is probably similar, and as difficult as this experience is at times I am learning to trust that even great challenge has a purpose in my life, and that everything is happening for a reason even if I can't fully see what that reason is yet.

This past cycle of my life lies in the moments behind me. Many have been bright and many were filled with challenge, but through it all life sure has a way of keeping things interesting! I don't know what future holds, but whatever tomorrow brings I choose to bring all of myself. I am alive, and whatever tomorrow brings I will be there.

Telluride Road Trip, Singing Smash Mouth All-Star

(don't be jealous of our insanely professional singing)

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