On Rehabilitating the Brain
Two years after my long-term opioid use ended, my brain was still a mess, even though doctors told me it would heal by then. It had not.
I had rendezvoused with Mr. Pennington in Asia when he was on his way back from India, unsure how my body would cope, if I would enjoy much of the trip.
But I bounced back from (and through) the rough 17-hour flight and time change. In spite of the heat and humidity, we ran around everyday. The fun never stopped. Wow, who knew that could ever be for someone born sick like me?
If only I could think!
Phucket, Thailand 2015
My strength and energy were good, better than ever in my life since I crashed at the start of puberty from Ehlers-Danlos Syndrome, never to be normal again.
In case you just tuned in, my life of disability from Ehlers-Danlos changed from injecting Vitamin C everyday. I gained:
Ability to exercise
Restorative sleep
Muscle strength
Reduced pain
I felt so much better, I thought I could do without heavy drugs. I was right. I’d been on morphine (and more) everyday for years.
People say to me, “You must have felt better being off all those drugs.”
Um, no!
Withdrawal was physically devastating.
I read every book I could find by a neurologist. Was there any hope for me?
Yes!
One thing was clear:
I was going to have to force my brain to function.
This is from the Brain Injury Association of America. It talks about what long-term opiate use does to the brain. Click image for full article.
Notable points:
“In addition to the cognitive and functional changes, imaging has documented volume loss in the brain associated with long-term use of opioids. Even several years into recovery, people who abused opioids continue to experience cognitive impairments, indicating the dysfunction is long-term and not due solely to the presence of the drug.”
I should mention at this point, I never was an addict.
This is something people find very confusing. Why?
Alcoholics Anonymous was the first voice on the addiction scene. AA is not science-based but a religion. It was built on a sect of extreme fundamentalist Christianity.
Its tenets prevent it from integrating science or research advancements into its program. No one is allowed to update AA. Or even criticize it. Per its dogma, all member success is due to AA and all failure in AA is your fault. (Note: that is how cults operate.)
AA idiocy about addiction has seeped into the culture. Sigh. Keep reading.
An addict cannot stop using. I did.
People get very confused about me, thanks to AA. They cannot make sense of my situation: I took prescribed drugs for Intractable Pain Syndrome caused by Ehlers-Danlos. When I became able to build better collagen (from daily ascorbic acid shots), my pain decreased and I didn’t need opioids anymore. I slowly cut back and got off. I became very ill as a result from having taken them for years, as anyone would. No sign of addiction anywhere in my story. Got it?
But thanks to AA
People think drug use = addiction = a moral affliction = a disease that is inherited and never goes away but it will if you sit with a group of people with substance problems and shame yourself and say you are powerless and stupid and this group of other addicts is the way out and god wants you to grovel and confess your sins, you will be cured except the disease/moral insufficiency will come back if you leave AA OR have one drink, in which case you will be RIGHT BACK where you started and TOTALLY DESTROY your life and AA will shun you because it’s your fault and DO NOT seek medical help for drug/alcohol issues because salvation is only achieved through god and self-abasement, duh.
Sigh.
That makes no sense.
The truth is that statistically people have a higher rate of quitting drugs or alcohol without AA. Because AA is nuts. Note: it tends to take any addict many tries, so don’t be discouraged. You just get some real support and try again.
Addict or not, long-term opioid exposure is very destructive to the brain.
It’d be nice if there were wide-spread understanding that chronic exposure to mind-altering drugs changes the brain, which praying and shaming won’t heal. Proper treatment will. Oh well.
From article linked above:
“In some studies, measures of neurocognitive function have shown that people with opioid dependence demonstrate impairments in the areas of memory, attention, spatial planning, and executive functions. There is also evidence that information processing speed is negatively impacted by chronic opioid use, causing difficulty with adjusting to new situations or learning new information, skills that are essential in the recovery process. Additionally, people abusing opioids struggle with solving complex problems and spend less time gathering information and reflecting on a course of action, impacting decision making and reasoning.”
Suggested program:
“Cognitive rehabilitation, focused on developing attention, memory and information processing skills, along with impulse control and executive functions, is essential in treating both the addiction and the brain injury.”
Which is the idea I got from all those books by neurologists I read.
I was going to have to force my brain to function.
I began studying Japanese to rehabilitate my brain.
Newly back from Asia, I wanted to learn an Asian language.
I picked Japanese because Chinese seemed too difficult, with all those crazy characters. I did not know Japanese had not only adopted the Chinese characters, but added three other alphabets. Oops. Oh well.
I signed up for Japanese 1 at community college in January of 2016. I sat there, class after class, remembering nothing, not able to pay attention, hoping not to be called on because what had the teacher just asked? I could never remember.
It beyond upsetting and demoralizing.
I saved my tears of frustration and shame for home. Put on your happy face, when you go out, kiddos. You’ll make yourself feel better.
Being me, I kept coming back to class.
I had faith, from all those books I had read, that the day would come when my brain circuitry would be rebuilt and start to fire, and I would remember. And be able to think.
I’m not the sort to give up, in case you are new to my blog.
I try harder than anyone, and I don’t care how bad it feels or how many setbacks I have. This is a personal choice of how I live my life. You do you. Ehlers-Danlos breaks most of us. It is a rotten disease. My level of commitment and determination is not for everyone. I just really don’t enjoy disability and will do anything to have a life, even give myself painful shots everyday because obviously they work, as here I am.
Go ahead and accuse me of “abelism.”
I will accuse you of “having poor boundaries and projecting your anguish onto me.”
We can be friends anyway.
Around Japanese 3, I became able to remember and focus in class.
A little, anyway.
The Japanese Language Proficiency Test
Every December (although maybe not this coronavirus December) the Japanese Language Proficiency Test is held all over the world. It is administered by the Japanese government and certifies levels of language proficiency, N1 - N5, N1 being the most advanced.
The Japanese take pride in their language and are most gracious to anyone trying to learn it. Japanese is a beautifully percussive language, easy for an English speaker to pronounce if you try. Their language textbooks are so entertaining, complete with cute characters and funny scenarios, printed on lovely, quality paper, so sensual to touch. I was charmed. That inspired me to keep studying. You gotta hang onto something..
Japanese is vaguely related to Farsi (spoken in Iran), due to the travelers on the Silk Road long ago. Japan went through centuries of isolation, cutting itself off the outside world, stopping other linguistic influences. Its language evolved to be, well, singular.
Subjects (he, she, it) don’t exist in Japanese. To construct meaning, endings are glopped on to adjectives and verbs. Japanese is like doing math. A Japanese sentence is very difficult to make sense of. I get what happened, but who did it to who? I give up! Someone just tell me!
Processing sound is a most complicated task for the brain.
which is one reason I picked learning a language for my brain rehab. Drawing those intricate Chinese characters would be excellent for my brain health too. You must use your hands to stimulate your brain.
I bought vocabulary CDs and listened and imitated. The quality of Japanese language CDs was so good, listening was a pleasure, so thanks again, Japan. Excellent brain exercise!
While taking Japanese 3, I heard about the Japanese Language Proficiency Test from my classmates. Five levels to choose from, pick whichever you like. What fun! Wait you guys are doing this test? I am very competitive! Sign me up!
My Japanese 4 professor 竹森先生 said I could pass N4, which is the second level from the bottom. He said N5, the easiest, would be too easy. But what does he know? He is Japanese. Okay I signed up for N4. No changing once you pay your exam fee. I know because I asked.
By the time I got back from my summer in Paris in 2017 and procrastinated further and finally did my first practice JLPT N4 test, I could only score 25% right, a definite fail. Oh f*ck, there were only eight weeks until JLPT N4.
F*ck! F*ck! F*ck!
What was I thinking?
I have no exposure to Japanese, no experience with it, except doing Japanese 1-4. I was getting 90% right on the N5 practice test. Wish I had signed up for N5.
I had a choice to make. Give up or go all out.
Guess which I chose.
I set up a study bunker in my living room.
I can do this! I can do this! I can do this!
I signed up for N4 Prep Class at Fuji School.
I spent every moment I could on another practice test, another grammar book, more vocabulary CDs. This was actually grrrrrrrrrreat for forcing my brain circuitry to come together and fire at once. Lucky me. All all my time and energy, all day, everyday, brain exercise. Looking at failure was a gift.
I paid for tutoring, tutoring, and more tutoring. “We’ve never seen anyone try this hard,” Fuji School told me.
It is a pleasure to be able to try so hard, I thought to myself.
Normal people don’t understand that.
They give up at the slightest obstacle and crawl into the corner and cry. How nice it would be to have that choice. With Ehlers-Danlos your whole life is crawling into a ball and crying for pain. No thanks! I’d rather try, now that I can.
Getting schooled by Noriko Sensei
I turned down all social engagements, except Clippers since we have season tickets, where I plowed through another practice test, to Mr. Pennington’s embarrassment. He also had to tolerate my Japanese language CDs in the car.
Go Clippers!!!!
The last night of N4 prep class.
I was the only one. Everyone else had stopped showing up. Japanese is really hard. High burnout rate. But not for this dummy. I’m too stupid to know when to quit. Turn your flaws to your advantage, kiddos.
On my last practice test, my score was just above passing. Yay!!! I have a shot!!!
I have a shot at passing. Yay!!!
People kept asking me:
Why was I doing this?
Why was I working so hard?
What did it matter?
Did I need it for a job or something?
Only to power up my brain!
What did I care if I passed? Okay, I totally cared. But I cared more about having a brain that worked.
December 3, 2017
At the campus of California State University, Los Angeles with my No. 2 pencil, sharpened.
The day I took the JLPT N4 was a great day of my life.
I was so happy that I had been able to put in all this effort, that my body was now reliable enough to show up to life, that I could set goals that normal people would take for granted and follow through with no EDS crash. Yay!! That was the real triumph.
I was blinking away tears of happiness and stress sweating through my tweed J. Crew blazer while waiting for the test to start. Brings tears of joy to me eyes even now.
Staff from Fuji School was there to cheer us on.
Who else was taking the JLPT?
Lots of Chinese, of course. They can already read the 漢字 (kanji). Unfair!
And lots of お宅 (otaku) which means “house,” a derogatory term for geeks and misfits so obsessed with anime and manga they do not leave theirs. Hey, this crowd looks a lot like Comic-Con 10 years ago, before it became cool and you could no longer get a ticket or hotel room.
They mean business.
Three hour test. Yikes.
During breaks, I marched up and down the stairs to get blood flow to my brain.
I snacked on dark chocolate and salt.
I did not think I was doing well, but who cares? I used to be totally disabled. This was fun compared to my old life!
The test was E-X-H-A-U-S-T-I-N-G.
Studying at home, I was reading questions out loud. Oops. I never practiced reading silently.
By the time the listening section came up, which was last, my brain was so tired, it was funny.
Finally the listening track said,
“The 2017 JLPT is now over.”
I understood that because it was in English. Phew! It is over. No way did I pass, but who cares? This was a great day of my life.
Then I went to meet Mr. Pennington at El Cholo. He was already in downtown LA for a Clippers game. The anticipation of that celebratory margarita and lobster enchilada had kept me going through that 6 week stretch of non-stop studying. Wish I had that right now. Please survive Covid, El Cholo!!! Go Clippers!!!
El Cholo, a Los Angeles landmark.
頑張った 。
I had done my best.
I ordered myself a present.
Great phrases in here.
One day, when Covid-19 is over, I will go on an eating tour of Japan.
I will ride the 新幹線 (bullet train), soak in the 温泉 (hot springs), visit the 神社 (Shinto shrines) and shop in the 銀座 (Ginza).
With the vocabulary from this book, I will survive any medical crisis I might have. I always consider medical possibilities when I travel.
January 24, 2018
Waiting for my cardiologist, an e-mail popped up.
JLPT results available.
Just as my the nurse was checking my vitals.
I got a high blood pressure reading.
My cardiologist was shocked and checked again.
My BP is chronically too low, having Ehlers-Danlos.
WTF?
I passed?
OMG. I passed.
Mr. Pennington pointed out this percentage would be a D.
Hee hee.
Passing the JLPT is on a curve. Looks like a lot of people did worse than I did.
Brain is working, as certified by the Japanese Government.
Happy tears.
I bought books to study for JLPT N3. But OMG each level is twice as hard as the last. Those books are scary. That goal will take a lot of time. I’m using my working brain for different projects
Japanese has to wait. For now.