Through the Brain Fog

This weekend I tweeted: “Brain fog is a cute name for brain damage” and surprisingly thousands of people responded to it.  I had a few down thread conversations with folks who have also struggled with “fog” and who felt that most people don’t understand the gravity of what it really feels like to have your cognition altered.

My life was changed dramatically by brain fog – often called chemo-brain in the cancer community –  and I thought I would write this in case it might be helpful to others for me to say more about the losses, transformation, and gifts that came into my world when my brain changed.

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In 2017 I was diagnosed with an impossible lymphatic leukemia that was not present in my lymph or blood, but only in my central nervous system – floating in my cerebrospinal fluid – forming thousands of lesions up and down my spinal cord. I had two inpatient rounds of methotrexate, one year of Rituximab antibodies, and almost three year of an oral chemotherapy called Imbruvica – which I took at a higher dose than usual in hopes that it would cross the blood brain barrier. Since nothing about what was happening to me was usual, I was also allergic to Imbruvica, and this required that I take large doses of steroids and antihistamines off and on over the course of treatment to manage allergic side effects.

So perhaps we can’t blame it on the chemo alone. It could have been any of them, or all of them in combination, plus bereavement and trauma, and menopause and even the cancer itself I suppose. And why would I blame the meds at all since I am here and alive today because of them.  I say this only because “chemo-brain” may be a misnomer if we are getting strict in our definitions here.

I wrote continuously through my treatment, journaling and blogging because writing was the only way I could keep my thoughts in order and think anything through. Most people assumed because I could still write, I could still listen and respond, I could still speak from my heart and use my Spidey-senses that it meant I was cognitively “fine” - that nothing dramatic was happening to my personality or my thinking.

But inside my head, the “smartest-little-girl-in-the-class” head that I had lived inside my whole life things had gone very wonky.

Before treatment I was known for my “sharp” thinking. If you asked me where in my body my “self” was located I would have absolutely said in my head, in my intellect. The blog I launched was titled “What a Shrink Thinks” which should tell you that I was a person who strongly identified with my thinking function. I had a large vocabulary from an early age and was teased through school for talking too fast and using big words.  A particular skill in rapid assessment, reading a situation quickly and forging a viable, initial plan helped me thrive professionally.

Clients were often astounded by my feats of memory. I could recall a former boyfriend’s name from fifteen years earlier, a dream they once told me seven years before, or the details of an argument they had with their father when he last visited the city. I could remember and contextualize things that clients had long forgotten or dismissed, resurfacing parts of their identity I had only glimpsed once, for a few seconds, years, and decades in the past.

Remember a long time ago when you were talking about your mother, and I asked if you felt dizzy because I also had the sense that room was starting to spin? You later told me that you were having some suicidal thoughts - and I’m bringing it up now because I’m having that spinning sensation again and I’m wondering if you are struggling with thoughts of self-harm again.

My memory and my attention to details, coupled with my ability to quickly contextualize the multiple layers of manifest and latent content, were my greatest clinical tools, the skills that kept me and my clients safe through often dangerous and emotionally precise work.

I was a short, little, fast person, and been described that way by myself and others, for thirty years.

On chemotherapy my formerly sparkling, stimulating, precise cognition slowed to a heavy crawl. Thinking now felt like driving on a desolate highway in the dark, my tank nearing empty, with thirty miles until the next thought. I was lost inside of myself. My words disappeared. Great Swiss cheese holes opened up in my memory, my language, my ability to communicate, and in my perception.

People I would swear to you I had never laid eyes on before in my life would approach me on the street to tell me how great I looked and how glad they were to see me out and about again.

Again? Who was this stranger? Sometimes they would notice the blank, panicked look in my eyes, and try to remind me how I supposedly knew them:

“I’m Janice’s friend? We met at her holiday party. We sat together at the Spring Sing at the middle school last month?”

Nothing. Blank. No bells rung.

How was I going to work in this state? What should, could I do with my practice? How could this even be ethical and clinically responsible?

I took notes to try to track what kind of things I could remember and what I could not.  Long term histories were all intact, and I still had a good ability to respond situationally to people who were focused on events in the present. But there was a zone past which things fell into oblivion, I could only hold onto new information for a short period of time a day or two, or maybe a week at most. A month ago, two or three months ago was a bank of thick clouds – impenetrably obscured.  I could remember broad brush strokes, very general themes but all the details were lost and out of focus.

I became like the old horseman in the Taoist story – the one who can only see the essence of a horse but could no longer tell a dun-colored mare from a black stallion:

That friend of yours… who I commissioned to look for a horse, has made a fine mess of it. Why he cannot even distinguish a beast’s color or sex! What on earth does he know about horses!”  

~ Raise High the Roof Beam Carpenters, J.D. Salinger

For clients who were generally stable this seemed fine to them, some even seemed to delight in it – who could sense that no matter what I was going through, how thin I became, how much hair I lost, no matter what I was forgetting, that I could still see, remember, retain them in essence.

But it rightly terrified me with higher risk clients, those for whom therapy was a matter of life and death, madness, or sanity, knowing that my executive functioning was scrambled, that I could no longer track or recall subtle shifts in symptoms from one week to the next, or remember what medication they were taking, my notes a jumble.

I had made it a point since starting my practice to only keep my contact list and calendar with client initials to protect confidentiality. But now I stared at my daily schedule mystified by the letters scattered across the page:

“F.P…. F. P.? Who on earth is F.P? I see they have been on my calendar for the past ten years at this day and time…”   Blank.  Nothing.

When Frankie Peterson walked into my office at 10:00am on Tuesday I would breathe a sigh of relief:

 “Oh! It’s Frankie! I know Frankie! Of course, so silly! F.P!”

But other days, even more frightening to me I would be listening to the client on the couch across from me and think:

 “Oh, poor F. P. is having such a hard time… F.P.? That isn’t their name?! Oh, come on! I’ve seen F.P. for decades of course I know their name! Their partner’s name is Rickie, and their dog is named Trucker, and they were born in Idaho…”

I’d keep listening and responding while the back of my brain tried to manage the terror of all that was slipping through me like a sieve. I learned that if I didn’t recall quickly, I wouldn’t recall at all and to figure it out some other way – by checking my billing record as soon as the client left:

“Okay. Yes. Frankie! Of course, Frankie Peterson is F. P.”

I would try to explain to colleagues and friends and acquaintances what was happening to me, but most would dismiss it or reassure me: “Martha at eighty percent is still better than a lot of people at one hundred!”  It seemed impossible to explain to others how impaired I felt, how terrifying it was to try to guess what was happening next, to bluff my way through a conversation with all the antecedents erased, how bizarre it was that people still wanted my help, input and advice personally and professionally, and even more horrifying, that they were usually satisfied with whatever I could produce in that state – like a Twilight Zone episode.

I felt trapped behind a one-way mirror, on my side I was slowly drowning in brown gelatin while other people had a heart-felt or irritated conversation with their own reflections, and whatever they guessed was happening on my side of the looking glass.

Seeing new clients was wholly impossible. Seeing high risk clients was ethically untenable and simply too terrorizing for me. For the few long-term clients, I continued to see, I was transparent about what I could and could not recall. “What were we talking about last week - remind me.”

I began to encourage them to schedule as needed so I didn’t have to remember the shorter-term details week to week.  I could only see the essence of the horse. Everything else washed away.

In making sure of the essential, he forgets the homely details… He sees what he wants to see and not what he does not want to see. 

~ Raise High the Roof Beam Carpenters, J.D. Salinger

My family saw clearly, viscerally, and painfully what was happening to me, to all of us. And it often tried their patience and hurt their feelings. My kids felt abandoned and undervalued when I couldn’t remember their school events, the talent show they had been practicing for, for weeks, the big test that they needed help with the friend’s birthday party they were dying to attend.

And until my husband and I figured out the shape and depth of my dysfunction my absolute certainty that un-recalled events “never happened” nearly convinced him that he was the one that was losing his mind. A package delivered that I received and unpacked, placing the objects inside somewhere – who knows where – before putting the cardboard in the recycling bin became a package that I was certain I had never laid eyes on, or had never been delivered.

“You must not have ordered it. Maybe you thought that you should, and you never actually did it, because I certainly didn’t see any package.”

It took raised voices and tears for me to stop trying to fill in the holes with deduction and admit I was having memory problems.

“Mom! I told you already like five times! Stop asking me!”

It was much harder for my kids to understand that mother with nearly impeccable organizational skills and exquisite executive functioning couldn’t hold the most basic information in her head for a day.

“Mom, you told me this already. You said this. You told me like ten times!”

All I could say was “I’m sorry! I forgot!  It is hard for me to remember!” over and over like a broken record.

A world of objects appearing and disappearing.

A world of panic when my train home from the city skipped a stop (or maybe I missed it?) and I ended up in Somewhere Else, New Jersey late at night with no idea how to get back. Tears streaming down my face as I called my husband to come and meet me and help me get home.

A world of obligations missed, of people deciding it was a personal affront, or me being irresponsible, or disrespectful, or avoidant. Others believing I needed to push myself more, or step up, or get myself together.

A world of disappointing others over and over.

I mean, the lesions were gone, and it was only oral chemotherapy, four pills before bed, it all looked normal from the outside, I just kept dropping the ball.

Even though almost no one seemed to remember that I was taking chemotherapy (Still? I thought you were all done with that!) no one seemed to consider, even when I told them, that I could be having a hard time remembering things.

When my oncologist decided she was concerned about completely different side effects, she ran another set of tests. To everyone’s surprise my cerebrospinal fluid (and my bone marrow for good measure) came back without any detectable cancer. I could come off chemo for as long as I was symptom free, and my tests remained clear.

After a month or so off the meds I sent my husband a text message:

“Could you check the left-hand pocket of my green coat hanging on the basement door? I think I left my air pods there.”

He sent me back a screen shot of a text I had sent him a few months earlier when I’d left them in the same place.

The text read: “Earphones gone. Lost.”

 Followed by his comment: “GOODBYE CHEMO BRAIN. MARTHA IS BACK”

I felt my brain flooding back to me, like a limb waking up from having the circulation cut off. Only then did I understand how long I had lived without my own familiar internal dialogue.

As I recovered, I realized that I had been functioning at forty to fifty percent of my former normal capacity, and that healing meant reaching eighty to eighty-five percent of what I once was.

And the rage. The absolute fury I felt for how little anyone had tried to understand this, how hard I had tried to explain, and how everything I said sounded like gibberish and excuses. Almost no one would listen, or cared to understand, or would adjust their expectations. The anger I felt about all the ways that I had internalized these failures that were not my fault at all, not at all.

I could now think clearly enough to see that I was not failing people, but that others were failing to calibrate their demands. I saw clearly who could love me as I floundered, and who knuckled down on their attempts to extract what they wanted from me. A purge was necessary, even more so because there was no knowing when I might need to go back on those pills. I did not only need to protect the past Martha who had been in treatment from those people, but I had to protect the confused Martha who I might become again.

I am three years out from those medications now, no cancer has been detected so far (knock wood), and I have learned to function and be gentle and accepting of my Eighty Percent self.

I no longer keep my own calendar (Calendly).

I rarely see people on a weekly basis or assume responsibility for high-risk cases.

I no longer get lost for hours trying to sort my monthly statements as clients now pay by donation whatever they can afford.

I don’t plan large complex parties, conferences, events, trips (thanks pandemic).

As my children have become young adults they assume more and more responsibility for their own lives, lightening my cognitive load.

I take extensive notes when I read, which helps me retain and catalogue potential citations.

I don’t meet new people socially in real life so there are no names for me forget. Zoom screens have everyone’s name right there on the screen if I forget.

I still have Swiss cheese holes. But they are not as large, and I know what the “blank spots” feel like.

I’ve re-ordered my whole life to avoid falling into those thought holes.

I still repeat myself too often. Ask my kids too many questions and forget the details. I forget to shut the screen door and occasionally leave the burner hot on the stove.

I am no longer ashamed of what I can’t remember and consider it an opportunity to remind others of my human frailty and their own.

With the future uncertain and the past fuzzy I have developed my capacity to be wholly focused on the present – which I’ve learned has its own value in this world. I think more with my heart now, than my head. I am less concerned with appearing corny or woo-woo or sloppy in my thinking.

I’ve learned that I am not my thoughts – That “I” exist somewhere else, as something else. I am no longer an intellect. Perhaps I am a soul.

This is important to me.

I lived for three years as Forty Percent Martha and another three as Eighty Percent Martha. There were times in my life where this was and would have been completely untenable – when I was caring for babies, for elders, or building a career. I am grateful that my brain changed after those tasks were complete enough.

As it stands, I don’t have any desire to go back to One Hundred Percent Martha. She could do too many things at once, she thought too fast to see all the beautiful things that you can only see when your thoughts are slow. She could get lost in sea of facts and details and miss seeing the underlying eternals.

She didn’t know she was more than all that she could think of.

I now stay as close to the essence of things as I can because I know that the names, the initials, the markings, and the flights of cognitive virtuoso can be stripped away again in a flash.

What he keeps in view is the spiritual mechanism… intent on the inward qualities he loses sight of the external… He looks at the things he ought to look at and neglects those that need not be looked at.

When the horse arrived, it turned out indeed to be a superlative animal.

~ Raise High the Roof Beam Carpenters, J.D. Salinger