My Two Headed Monster
In so many ways, this is an interesting time in which to find myself. I have come through so many of layers of fear to arrive at a place where I may well be beyond the fear of what ALS could do to my body. I have come around again and again to the belief that I have established a loving relationship with this gene and that it won't hurt me.
Yet sometimes, when I’m patting myself on the back for bravely facing my fears and staying present, I will notice the next lesson peaking around the corner and think “Universe, you’re kidding right?”
So it was almost funny to find myself paralyzed with the fear of what ALS could do to my brain. A conversation with my researcher nephew brought to light the information that the C-9 gene (which affects our family) appears to cause a much higher prevalence of dementia than other familial ALS genes.
In my journey to release my body’s fear about breaking down, my brain has consistently assured me that it could continue to write and work and to make use of the amazing advances in alternative communication. I was beginning to fully accept that I didn't need to be a biking, hiking, yoga posing, strong bodied human to contribute and participate in the world. My brain had my body’s back.
But what about dementia?
What if my brain can’t keep doing that?
How will I know if I’m growing progressively demented?
How will I take care of myself and my children?
Suddenly, ALS is a 2 headed monster threatening every part of me.
Fear is a feeling, whether it’s in your brain or your body, and I know from experience that simply paying attention and breathing into it releases its hold on you. With each breath and every moment of attention, that feeling is taking up less space within you. As neuroscientist Dr Jill Balte-Taylor observed (and as my teacher Pema Chodren is fond of paraphrasing): Neurologically, we can only maintain an emotional state for about 90 seconds. If we do not engage with it by building a story around it or denying its existence, it simply burns out.
When we pause and say “this is a lot” or “this is too much”, we can relax and exhale as we stop trying to explain or quantify or figure out all that we are experiencing or what to do next. The simple act of acknowledging how much we are going through (or have gone through) is profoundly significant.
As we pause and take a breath, we are allowing our Vagus nerve to take us out of Fight or Flight mode. As we notice our breath and wiggle our fingers and toes, we are reminding our brain that there is a body down there providing connection to the ground and around 40 miles of nerves over which intensity and electrical charge can be spread out. Our heart is sending oxygen-rich blood and our bodies can process and release feelings in ways that our brains cannot. And so our body has our brain’s back.
When we are stressed or scared or overwhelmed, all of our energy rises up into our heads. It’s as if we inhale and then we forget to exhale. Our brains become isolated and under pressure and do what brains do: think and think and think. Think quickly, think in circles, search for logic and pattern and cause. All of this activity occurring while our breathing is shallow (or too rapid if panic is part of our experience) and so our brains are actually getting less oxygen.
I used to be shocked at how much feelings and the effort of holding them in caused my brain to shut down or become disorganized. I would burst into tears when attempting to speak up about injustice or to express any level of anger. When under pressure, my carefully prepared plans or presentations would evaporate, leaving me sad and so deeply frustrated.
Now I can recognize when my brain shuts down and, rather than berating myself or worrying that I’ve suddenly grown stupid, I pause and take a breath. I offer my brain compassion and attend to whatever feelings may be present. It is as if my attention blows away a cloud that has settled over my brain, obscuring its richness and intelligence. And I’m astonished by the clarity that follows and by how easy it is, once again, to organize my thoughts and hold conflicting ideas.
All of this doesn’t just apply to my fear of ALS. I feel mentally sharp most of the time and I’ve been compassionate with my aging process but living with two teenagers can invite a parent to feel they that have dementia.
Being tired and stressed can invite you to feel that you have dementia.
Reading statistics and information about dementia invites you to worry that you already have it.
As I continue to age along with my ALS gene, I have learned that patience and compassion are key. I listened to my body without judgement early on in this process when every clumsy moment or extra tired day sparked the fear that ALS was already destroying my body. And I can listen to my brain in the same way when it fears that dementia is coming to get me. This conscious cooperation between my brain and my body informs all of my decisions and enriches my life in every aspect. And I see the patience and compassion that I give to myself extending outward to my relationships and my world. And this, in turn, reflects back to me.