Equanimity is the quality of having a calm and steady mind in any condition.
The equanimous mind regards experience without aversion or craving for it to be something else.
It is simple and hard to cultivate equanimity.
You arrive at it through cultivating steady conscious awareness. That leads to insight. When that insight is present as you move through life, you suffer less.
In turn, you are able to help others suffer less.
I believe we are here to help others suffer less.
It is simple and hard to live up to this ideal.
I want to afford privacy to my child whose story I’m going to share here and thus will refer to them as “they” and “my child.”
My child and I walked to the stream that runs through the forest.
We had not been on a walk to the stream in months.
That we were able to be here together doing this was a massive achievement.
Still, thoughts revved in my mind and I could feel them grabbing me and trying to pull me out of this moment.
I thought about how this was the time of the morning that I usually did my walking meditation and that I would not be able to do it.
That made me laugh.
Being present to the experience of getting to spend time with my child and be outside was my meditation today.
There were other thoughts.
About my child’s health, about the economy, about my bank account, about the bank accounts of others, about the new businesses I am starting.
I observed these thoughts and recognized them as thinking--positive, negative, neutral. Awareness and labeling created distance and I set them aside and came back to the only thing that was real, the moment that was happening.
I looked at my feet as they walked and they took through the decomposing leaves and bits of dead and disintegrating trees on their journey back to becoming soil.
Mainly, I thought about the events of the past five years that made this simple walk feel so remarkable.
I noticed hope for this moment to unfold in a certain way arising and labeled that thought and focused on the sound of the stream and the sight of the trees and then we stopped at the edge of the stream.
We stood in silence for a minute in the cold and watched the water flowing over the rocks and roots.
“The worst things in life are the best things in life,” my child said.
This struck me as incredible.
“Tell me more about what that means,” I said.
“I have PANDAS and it can be really hard. And it also means I get to have a big glass of orange juice when I take my medicine every morning. I love orange juice.”
Equanimity.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus.
PANDAS starts with a strep infection that causes the sudden onset of symptoms that can include:
Obsessive-compulsive disorder (OCD)
Tics (motor or vocal)
Anxiety
Irritability or aggression
Mood swings
Separation anxiety
Sleep disturbances
Hallucinations
Deterioration in academic performance
Motor coordination problems
Handwriting difficulties
Sensory sensitivities (e.g., to light, sound, touch)
One day five years ago, this child woke up with a strep infection.
Up until that day, their development and life had been normal and without any atypical challenges.
That day they woke up and everything changed.
They had repetitive physical tics they had never had before.
They’d never had preferences for any specific clothing before and easily changed outfits. Now they would wear one set of clothing and would become upset if they ever had to take it off for it to be washed.
They became highly sensitive to all sensory stimuli and it would sometimes take more than an hour for them to get into a car seat among many other sensory issues.
Before this child could keep up with kids six years older when they played soccer. Now they had trouble holding a fork with their hands.
Before they had been happy and calm and now they were noticeably anxious, irritable and prone to explosive anger.
In time, we would see signs of clinical obsessive-compulsive disorder that caused them great pain and made moving through normal tasks in day to day life impossible at times.
It was like an alien had come into our home from outer space and chosen to inhabit our child’s body and mind as a host.
They weren’t the person they’d been in any moment of their life until this one.
We searched to try to understand what was happening and within days came across information about something called PANDAS and that its point of inception was a strep infection.
It all made sense.
We called our pediatrician, we told them what we were observing and that we thought our child had PANDAS.
They waved us off, told us not to worry, that it was probably just a phase and would pass
Who wouldn’t want to believe that?
We believed the doctor.
We tried to help our child navigate this phase that they surely hoped would go away and that we hoped would go away.
The child wasn’t old enough to have language to describe their internal experience of what was happening and we tried to help them get through it.
Some days were good. Some days were absolutely brutal.
The routine of their life and their ability to do everyday things was massively disrupted.
Our lives were massively disrupted.
They suffered.
The pandemic started.
It became almost impossible to get medical appointments.
We moved across the country to Maine.
The longer this went on, the more convinced we became that this was not a phase, that this was PANDAS.
We were relentless in trying to get our child help. There were waitlists that stretched out for months and years for everything.
We kept going and did not stop.
We researched what was happening nonstop. We talked to everyone who would listen.
Eventually we worked with specialists and doctors and behaviorists and psychologists and psychiatrists and naturopaths and anyone who we thought might help us.
We tried everything and still we did not find the expertise and the help we needed.
There was no relief.
We didn’t know what would happen day to day. Some days, it might take three hours to get the child to get into the car seat to go to school. Other days, it meant no school at all while they had a protracted meltdown and for my wife and I to find a way to be with them and to work at the same time.
One school expelled them.
We adapted and with the help of our families we home schooled them for months until they were able to go back to a new school.
The child’s anger was often directed at me. One of the components of the OCD was that I had to drive a car separate from the family everywhere we went for more than a year because it became impossible to go anywhere if I was in the same car as the family.
It felt impossible to explain to anyone in our lives what our child was experiencing and what we were experiencing.
How could I even begin to explain it?
When I sometimes did share what my child was experiencing and what our family was experiencing, I realized most people could not or did not want to or did not have the capacity to engage around these topics.
I began to more clearly understand the nature of relationships I had with people in my life. I learned what to share with who and who I did not need to spend time talking to at all.
And that some friendships are not friendships and that like everything in life, they change and sometimes are just supposed to end.
As I looked backwards, I also saw more clearly the way that at times I had been unable or unwilling to engage with difficulties my friends and their families had faced.
Now I could expand my capacity to be there for the difficulties that people close to me faced and that people far away from me faced.
I listened more deeply to what people shared with me and began to understand the power of just listening and not reacting and immediately moving to trying to fix things.
Seeing my child suffer helped me to understand that I was them and that they were me, and that we are them and they are us and we are all each other.
The suffering of anyone is the suffering of everyone.
I didn’t understand why and I stopped trying to understand why.
The challenges we faced as a family brought us closer together.
Whatever the problem, more love was the answer, and we continually discovered more love for each other.
When I met my wife one of the things that struck me the most about her was her ability to access happiness in any moment no matter what was happening in life.
Before I knew what equanimity was, I experienced it in her being from the first day I met her.
Whatever waves life brought, she was water, steady and constant.
After years of searching, we finally discovered hope through the NIPD clinic at Dartmouth. They specialize in research into and the treatment of neuroinflammatory disorders like PANDAS and PANS.
We got on the waitlist for an appointment. Six months later it was time to go to the clinic, a six-hour drive.
The big day finally came. The child wouldn’t let me get in the car.
No problem. I drove another car.
During the drive, I remember talking to a friend who has since become an even closer friend who was about to go skiing that day but had forgotten their ski boots at home and instead kindly talked to me on the phone for an hour while I drove.
A year later one of their children was diagnosed with PANDAS and now I have been able to share everything I have learned and hopefully help them on their journey.
When we got to the clinic, the child wouldn’t go in and I waited outside with them.
In the appointment, they reviewed the exhaustive notes and medical history we had put together and identified that the child met 100% of the criteria for a PANDAS diagnosis. It was a textbook case.
There is a path to treat PANDAS depending on when it is found, and it is not straightforward.
For our child, it meant a long course of antibiotics and NSAIDs.
Almost immediately, their experience of life changed and they began to suffer less.
This had a huge positive impact and helped them to get back closer to the person they had been four years earlier when all of this started.
In PANDAS cases, it is extremely difficult to eradicate the underlying infection and even with this course of treatment, the infection can return.
Whenever they would get sick, their brain would become inflamed and their behavior would shift. PANDAS requires ongoing treatment to handle these infection flares.
Emerging evidence suggests that remodeling the gut biome through fecal microbiota transplantation may be an actual cure for PANDAS.
In the United States, that treatment is not FDA approved for PANDAS and therefore not available.
There is no ‘cure.’
There is meeting the moment.
There is being in the moment.
There is the moment.
Five years had passed since the beginning of the PANDAS journey.
Now we stood at the stream. My child and I looked at the water and listened to its steady gurgle.
This week, a year after the appointment at Dartmouth, the child had been exposed to strep again. They had the hardest week they’d had since we’d started to treat their PANDAS and many of the worst symptoms had resurfaced.
Then there was this moment at the stream, in the forest, when everything was calm again.
“It’s cold,” I said and this was more than a statement of fact. It was cold and also it was April and in that moment I found myself wanting it to be warm.
“I love spring,” my child said.
This was spring? They were right. Technically this was spring.
“Why do you love spring?”
“I love the gray sky and the cold. I find it to be relaxing and nice. It’s good weather for reading books,” they said.
We walked away from the stream and my child stopped in their tracks and pointed at a tree root that had a golden glow.
“That’s a golden birch,” they said.
We knelt down and looked at it and then we wandered over to a tree that had snapped five feet off the ground. It had a stack of bracket fungi running up its side like shelves.
We stopped and looked at the mushrooms and the broken tree for a while and then we kept walking.
My child knelt down beside a fallen tree covered in moss that still retained its bark and outer structure but that had almost completely disintegrated inside.
They picked a handful of matter out from inside the tree.
“Smell it,” they said, holding out a palm full of the decaying wood dirt.
I smelled the earth.
“It smells good,” they said.
They smelled it again and let it sift through their fingers onto the ground.
“Nature is amazing,” they said.
“It is.”
“This tree will turn into soil and then something else will grow here,” they said.
“It will.”
“Everything changes.”
Everything changes.
To support research and treatment for PANDAS, please visit www.thealexmanfullfund.org. Learn more about PANDAS, PANS and neuroinflammatory disorders from the Dartmouth NIPD clinic and at www.neuroimmune.org.
Thank you for sharing your family’s journey through a very hard time, Andrew. That takes a lot of courage and vulnerability.