Lessons Learned Living with ALS
“Perhaps sharing what you’ve learned is part of the cure.”
Last week, I watched a YouTube video of a woman sharing with renowned medium her 16-year journey of undiagnosable pain.
When asked what she had learned from years of suffering, she offered: she paid more attention to food, and she knew chronic pain was awful.
The medium pressed: “Is that all you have learned?”
She realized she would have to dig deeper.
He suggested that if she connected with herself more deeply, she might discover the purpose of her illness, the lessons it carried, and perhaps—having served its purpose—the illness could leave. He encouraged her to share her experience with others: because in her own way, she was an expert at living with that pain.
She resisted: “I can’t share my journey with others. I haven’t cured it yet.”
His response: “Perhaps sharing what you’ve learned is part of the cure.”
The First Lists
Three years ago, one year into ALS, I intuitively did exactly that – I wrote down everything I had learned. I was starting to create my impossible dream speaking platform and knew that in order to share it with audiences, I would first need to share it with my children, which meant getting real with myself.
A year later, I did this exercise again, surprisingly grateful for the lessons of that second year and conscious of the fact that if the disease had left a year before, there was so much that I would not have learned.
Now, inspired by that video, I’m sharing a list of so much of what I’ve learned over the last 4+ years of living with dis-ease and disability.
This is an acknowledgment of the extraordinary lessons possible within impossible circumstances.
Perhaps most importantly, in sharing all of this with you, we – together – receive the blessing of helping each other heal by trusting in vulnerability, truth, and love, we inspire and empower each other to stay in the energies of healing.
Thank you so much for reading and sharing this with a few friends. And if you haven’t already, please subscribe. It’s free if you like. I’m so grateful for your subscription and readership.
Early Lessons: Symptom Onset to Diagnosis
Requires more than one symptom to diagnose; Google will not tell you this.
If you have one symptom, you may not have it. There are other diseases that mimic ALS. I wish I’d known that when the twitches started.
Processing mortality at 45 was overwhelming.
Doctors can be wrong; I was told I had benign fasciculation cramp syndrome.
Living with anxiety, insomnia, and depression can be hell; SSRIs can help.
You can adapt to full-body muscle twitches and even sleep through them.
Even when you feel alone, you are not.
Romantic relationships are very hard to maintain during fear and uncertainty.
You can still be yourself, work, and move toward what you prefer, even in chaos.
Meditation may be impossible at first; Yoga Nidra can soothe body and mind.
A bad therapist can make things worse—find one aligned spiritually.
Pleasures like sex bring pleasure, but joy is different. We chase pleasure when there is not enough joy.
Awareness turns patterns into choices.
Some doctors have poor bedside manner—don’t take it personally.
A diagnosis is an opinion; get a second one.
Physical symptoms like weakness and muscle loss are terrifying.
Health is more than physical—it’s mental, emotional, and spiritual.
Diagnosis to Disability
Fear was my biggest obstacle; my intuition said it was part of why I got sick.
I chose to eliminate fear, build belief in healing, and protect my children from unnecessary fear. I learned how to do this by becoming a passionate student of the mind-body connection.
There are many lessons to learn from books. I read over 100 on healing & the nervous system.
Trust yourself—your intuition, your soul. Learn to listen to the whispers of your soul.
Healing requires a surplus of energy and unwavering belief. Notice what energy is in your life are a drain and notice those that are a gain. Eliminate the drains.
Doubt is trusting in lack— instead, practice trusting what you prefer.
Do this over and over again, no matter what.
I learned to slow down; change is necessary to change your life.
I became a freer performer despite physical limitations.
When you think you’re done, you’re only 20% of the way there.
Learned to walk with AFO braces, be humbled in PT where I was the youngest one by at least 30 years, and find humor in hardship.
Patience and presence—every moment is precious.
Only this moment is inevitable.
Love yourself to receive all the love in your life.
Releasing what no longer serves me opens the heart.
I learned to have a deep passion for spirituality and mysticism.
Healers must stay in healing energy.
Trust in life and the universe mirrors it back.
The layers of life are infinite. When you think you know everything, remember, you know nothing.
Learned many ways to meditate
Singing reconnects me to my soul.
Healed trauma from divorce; learned to love and trust again.
I learned how to accept help from others.
I learned what unconditional love really is.
Awareness of narcissists and empaths.
I learned how to Let my soul guide me (as in “Let Your Soul Be Your Pilot”). Which is why that became a song on my album.
I am God, as is everyone; we are all one.
The Matrix makes sense now.
I can endure immense challenges.
Find joy even when life isn’t physically how I want it.
Share my story through many mediums.
I am not my parents; they have their own lessons.
We create narratives, stories that often make us the victims of our circumstances. This leads to demise. if you’re gonna create a story, make yourself the Victor and move towards victory! practice this over and over.
As I changed and expanded, my world expanded, and the people that came into my life, started to be of higher vibration.
it’s important to ground myself daily and quiet and nature.
Emotions are a GPS; redirect when off track.
Tough weeks can become tough moments.
I learned how to appreciate simple things: brushing teeth, a butterfly, floating in water.
I learned how to surrender , not capitulate.
Lucid dreaming is fun (especially with AI interpretation).
Sitting in a chair all day is sometimes fine, sometimes hard.
I co-create my life with God.
Children take your lead and can shine brighter through challenge.
I’m grateful for every hug, even if I can’t stand for them.
Emotions must be felt to be released; I teach my children this.
I learned how to Let go of judgment.
Integrity means love and respect for self and others.
I can’t control others; love and respect them as they are, but choose company wisely.
I learned how to Create healthy boundaries.
Learned to sleep on my back, pee in a bottle, ride in a wheelchair van.
I learned immense gratitude in every moment
Others heal in their own time; no comparisons.
I learned how to make an album and a podcast.
I learned the purpose of life: to be the highest expression of ourselves.
I learned how to love myself. To remember who I really am.
I learned how to share my journey with others in the face of unspeakable adversity with vulnerability, gratitude, and joy.
I have learned to love life so much.
I have learned how to live. Life is full of challenges. I’ve learned how to align with ease and grace, joy and gratitude. Which means even despite all the challenges, I enjoy my life so much more than I was able to before.
I could keep going… but I’m gonna stop for now. It strikes me that there’s nothing left to learn from ALS that cannot be learned without it.
With love and appreciation, Aaron