It was four months ago today that my mom passed away.
It was an excruciating journey.
One you wouldn’t wish on anyone. Sometimes I can’t believe this is our story.
I am still numb.
I started counseling in the final year of her life, to process the grief and put a system in place to deal with the inevitable loss. I went to restorative yoga and took classes on breathing.
I gathered the tools to put in my toolbox. I suspect at some point the emotion will flow.
There were many good times. Up until the last month, there was always laughter. (Mostly from making fun of my Dad.) My mom had a wicked sense of humor passed on to both me and my son, and we used that tool effectively to lighten the darkness.
Speaking my mom’s language was a high priority. Managing anxiety. Building endurance. Seeking beauty.
“My mom has a poet’s heart,” I would tell every new caregiver who came to the house. “That must be honored.”
I found out after she had died that she had her own column in the college newspaper. I was not surprised she did, just surprised we didn’t know.
I am also not surprised that her words could have been written today–the timeless creature that she was.
I BEGGED her to write her memoirs and will never not be sorry that she never did.
HOW did MY MOM end her life unable to communicate?
I am grateful my faith is deep and I long ago learned to be okay in HIM, facing that which I cannot understand.
“I trust you to tell me,” my mom would say, “when it is over.”
I smile. Nod. Unflinchingly honest, I knew I would honor that request when denial and resources were both exhausted.
“I am so, so sorry, Mom,” I ache as we are talking about Hospice, “but I am out of ideas.”
Hospice was another road in the journey with unknown twists and turns, and none of us knew the distance from that beginning to the ultimate end. All we can ever do is our best, and we did our best trying to live while also dying.
We read to her a lot…me. Caregivers. Audiobooks.
Never as much as you would REALLY like–I share the same struggle with reading to my precious little peanut–but probably more than average.
As the days were coming to an obvious end, I ordered a book I remembered distinctly from my childhood, HAWK, I’M YOUR BROTHER.
I didn’t know it would be the last thing we ever shared…I honestly thought there was more time. The Hospice nurse guessed about a month–our crazy concoctions had fixed a few issues we were battling and there was no longer anything glaring at finality.
In the dynamics of my own marriage, my husband is usually gone for the hard things. Through no fault of his own, it’s just the way it has always gone and for that reason I believed my mom would pass away a few weeks later, while Carl was in California on business.
I was convinced of this, and comfortable with it.
So, when I sat down by her bedside that Saturday afternoon to read, I believed it was only another moment together in a lifetime of moments together.
The hawk is on his shoulder, ‘Fly now, bird. Go on.’ [The book reads.]
The hawk turns. He moves his wings…
Maybe he jumps a hundred times before he seems to catch the wind, before he lifts himself into that summer sky.
At last he soars. His wings shine in the sun and the way he flies is the way Rudy Soto always dreamed he’d fly…
The bird looks down and then he calls a long hawk cry and the sound floats on the wind…”
“I love you, Mom,” I say as I leave. “I know you know how much I love you.”
In hindsight I can see I was speaking her language–of freedom and soaring and permission to go–through a book uniquely part of our childhood.
I miss you, Mom. I don’t actually think you know how much I miss you.
You took her all the way to Dallas?” The Hospice nurse asked incredulously.
I could hear her eyes roll through the phone.
Today is my mom’s 82nd, and final, birthday.
What the judgy (but also incredibly efficient) Hospice nurse doesn’t realize is that I have had a lifetime of conversations, with my mother, about color and art and beauty.
Those are important things, my mom would say, that help to create a life.
And while my mom is clearly dying, she is also still living.
So we loaded up and went to VAN GOGH: THE IMMERSIVE EXPERIENCE where we were surrounded by music, light, dimension, and history.
“Look at the wall, Jojo. It’s beautiful,” my son said.
My mom has an unmatched gift for covering walls with random artwork and making it look like they were created to go together. Spending her birthday celebrating art makes so much sense.
When my mom was (mis)diagnosed with ALS in 2017, she wasn’t sure she would make it to her next birthday. “This isn’t it, Jojo,” I told her. “I mean take the medicine, because I am not a doctor, but I am not convinced.”
We traveled tens of thousands of miles, she and I, chasing hope, and have spent ten times that amount trying to find not yet discovered answers.
My Dad funded a research study we knew wouldn’t be fast enough for us.
Brutal diseases beat even the most determined into submission, and Progressive Supranuclear Palsy has done that to us. “I am so, so sorry, Mom, but I am out of ideas,” I tell her. “You have people who love you here on earth, and people who love you in heaven. No matter what, you are loved.”
The book of Job tells us that our days are numbered by the Lord; With each day that passes, my mom’s number eeks closer.
So whether the Hospice nurse understands and approves or not, we will fill her days with beauty.
And the other thing that nurse does not know is this: I am my mother’s daughter. I will do what I damn well please.
I know it’s preposterous to say that I am stunned, but that’s exactly how I feel.
My brilliant, valiant, warrior of a mother went home to heaven on Sunday, September 12th.
I thought we had a few days more.
The resilience my mom has shown over the course of her life is remarkable. The resilience she showed facing death unparalleled.
“You have had such a great life,” I reminded her. “The day after your 40th-anniversary party you told me that if you died then, you had all you could have wanted. That was 17 years ago.
You have done well.”
She has kids who love her, grandkids who think she hung the moon, and great-grandkids that will hear all the stories.
I always say recovery is part of the fabric of my children’s lives because they each attended countless AA meetings with their Jojo. They met the people. They smelled the coffee and cigarettes. They listened to discussions of life, lived one day at a time.
She helped countless people learn a sober way to live.
My mom was an avid shopper. Under the Christmas tree always looked ridiculous once Jojo showed up with her presents.
She loved clothes and shoes.
She was remarkably healthy except for one terrible disease.
She tried nearly every crazy therapy I brought her way to fight a disease with no cure. Except the hyperbaric oxygen chamber–that was a “no”. She was claustrophobic.
She was a reader and a book buyer. There were thousands of books in her home. She was so smart.
She and my Dad traveled the world with retired judges. They traveled the country with their animals in a fifth wheel. They spent weeks in Hawaii in a time share.
She had a wonderful life.
She died peacefully in her sleep.
We made it through a patch several weeks ago when she was in pain and anxious. Once we got over the hump, we got back to all the crazy oils, and lotions, and crock pots full of warm washcloths and my mom died both comfortable and virtually medication-free.
We honored her decades-long journey of sobriety.
We surrounded her with caregivers who loved her.
Every night my son would help her over to see my Dad, and he would kiss her goodnight and tell her he loved her.
While I was in church yesterday, praying for my mom and listening to a sermon about heaven, my mom was getting ready to go…
The last words I said to her the day before were, “I’ll see you tomorrow Jojo. I love you. I know you know how much I love you.”
For whatever reason, we never really talked that much about my mom’s life as a child. There really is so much that we don’t know, but my Uncle David has been kind enough to help fill in the gaps.
Lora Jo Kuether was born on September 1, 1939, in Chillicothe, Ohio. This is one of the first things I did not know. The gentleman at the funeral home asked me, “Chillicothe. How do you spell that?”
“Ummm…I’ll have to get back to you on that.”
My mom always reminded us that September 1, 1939, was also the day that Hitler marched into Poland…so life for everyone on the planet was eventually impacted by the day my mom was born.
Her family then moved to Pelham, New York, where my mom grew up. She had one older sister and two younger brothers. They lived on a dead end street where they played ball into the night using manhole covers as first, second, and third base. Her Dad would holler, “Joey, Butch, Davy NOW!!” When it was time to go in.
When my mom was in junior high and high school she’d roll back the rugs in the living room and host sock hops. She was a cheerleader. She played on the LaCrosse team. She’d walk to church on Sundays with her mom—her Dad was already there because he was a Presbyterian Minister.
What I didn’t know until recently was that HIS dad was also a Presbyterian Minister…a respect worthy line of people who served the Lord.
When my mom was 12, her parents purchased a 21ish acre lot on Livingston Rd in Laconia, New Hampshire. It had a two room cabin, kerosine stove, and a well in the back. There was no running water. My Grandma Rithy named it “Hi Larkin”.
Her Dad bought a tent to put in the back where the kids slept on old army cots. Her brothers slept in the tent for much longer than my mom, who eventually joined her sister Annie and worked as a chamber maid at the Wicwas Lodge, where they got free room and board.
My grandparents made everyone work on that cottage to make it livable. They nailed floors and walls and dug a cesspool and well. That home stayed in the family until after my grandmother passed away and my parents bought it. And the grandkids would tell you the upstairs was not as livable as they professed, with the tilted walkway that you needed to traverse to get to the upstairs bedrooms.
In her final years, my grandmother was forbidden to go upstairs. Safety first.
After being tenderly and generously cared for by my uncle and aunt, my grandmother, too, peacefully passed away in that home, while my mom was on a plane to be by her side. Now she is by her side. I’m sure they are still talking and laughing together.
Hi Larkin burned down years later.
My mom went to Wilson College in Chambersberg, Pennsylvania, where she received her Liberal Arts degree.
After graduating from college she spent a year abroad in the Netherlands. When her parents and brother visited her there, her Dad bought a red Volkswagen that they drove around Europe in.
My mom named the car “Rubin” which meant RED in German.
She lived in the Netherlands with her best friend Kitty, who was originally from California, so when they finished their time abroad they moved to San Francisco, where my mom met my Dad—a law student at Cal State Berkeley.
They married in the spring of 1964, and soon moved to the Central Coast. My dad was first an attorney at Bill Wright’s law firm until he was appointed to the Judicial Court by then Governor, Ronald Reagan.
Meanwhile my parents were growing their family first with their son, Glenn, then daughter April, and third and final me. Three kids under the age of 5.
They were crazy.
Our childhood was full of books. Their home literally had thousands of books in it, and their decor was centered around custom made bookshelves. The Pokey Little Puppy; The Tawny Scrawny Lion; The Bad Children’s Book were all read time after time after time.
She was creative. She wrapped presents in the cartoon section of the newspaper tied up with string. We made God’s Eyes with sticks from the oak trees in the yard and colored yarn. We learned how to paper mache.
She loved laughter.
I remember Saturday mornings when we were supposed to be doing chores and my brother would be laying on the living room floor watching the THREE STOOGES. My mom would let him slide from working because she just loved to listen to the sound of his laughter. His laughing filled her with joy.
She was outspoken. When my sister, who was a gifted athlete, would make a great play in the field, my mom would holler from the stands, “NOW YOU GET DINNER.” I didn’t know that my mom’s love of watching my sister play sports was, in part, because she was a gifted athlete herself.
My athletic skills are more like my father’s.
She volunteered in the classroom and corrected the teacher’s grammar. “ALOT” is not one word, it’s two. “LETS” needs an apostrophe every time.
She was a stickler for proper English. While at the dinner table, if one of us kids asked her to “Please pass down the milk,” she’d put it on the floor.
There. It’s down. We were proud of ourselves for remembering the please.
When we were all teenagers, my mom went back to school and got her teaching credential and master’s degree in English.
She was so smart.
In 1983, after an intervention planned by my father, my mom went to a recovery program at Cottage Hospital in Santa Barbara to deal with her addiction to alcohol. There she learned the fundamental basics of living ONE DAY AT A TIME…she became an active member of the Alcoholics Anonymous community, known as AA.
My mom, however, really needed a group that was just called “A”. I mean, when the queen of oversharing joins an organization based on anonymity it is problematic.
All three of us kids have memories of saying, “Moooommmm, the person behind you in line at Cornet’s doesn’t care that you are a recovering alcoholic.”
She overshared all the time…I remember after one of my brother’s little league games, at Shakey’s pizza, my mom telling all the other parents exactly who my sister and I had crushes on.
I didn’t know then how much I would simply miss the sound of her voice, even if it was oversharing.
In 1991, my parents moved to Marin County where my father became the special master to the courts for Buck Charitable Trust. My mom plugged in to AA there, volunteered, and worked with the aging population highlighting available community resources.
Long after the desire to drink had stopped, she kept showing up to meetings. “Some one was here when I first came,” she’d say.
But my mom’s real zest for life sort of began with becoming a grandmother. “JOJO” was her name, and grandkids were her fame.
She once gave me a card that said, “Perfect love sometimes doesn’t start until the first grandchild.”
She took them all to AA meetings. She went to dance recitals and ball games and birthday parties. She showed them how to compost. She let them stay at her house when they needed to. She taught them how to make a hospital corner on a bed.
She bought a ridiculous number of Christmas presents.
She and my Dad moved back to the Central Coast.
They traveled in their 5th Wheel, so they could take their animals with them.
They traveled the world with retired judges going to Alaska, and Cuba, and Europe.
Then they’d come home and invite everyone over and bbq ribs and steaks and before every meal they would lift their glasses in gratitude, toasting the blessing of their lives.
Years later my mom would say that was an important ritual because she could feel things starting to go awry, and she wanted to live one day at a time, grateful.
She loved adventure. She asked my brother to take her for a ride on his Harley, and he happily obliged. She and my husband began a tradition where he would take her flying in his plane every year on her birthday.
After we moved to Texas, Carl took it upon himself, each year, to take her to her AA birthday meeting where she’d get her chip and he’d eat cake. Once she lost the ability to speak, Carl would share and tell the community all about her beautiful journey of sobriety.
In a gathering like this, where the statistics are clear that someone here is struggling with some kind of addiction, I know my mom would want you to know that 90 meetings in 90 days can change a life. She would tell you that you, too, can have a beautiful and vibrant and sober life.
She believed that to core of who she was.
She believed that you could trust the process.
That when things get chaotic you should get really still.
That you could take a trip not taking a trip.
That bad things that happen are just AFGO’s.
That the old timers had a lot to offer.
That whether the disease is addiction or Progressive Supranuclear Palsy, living one day at a time is the only rational solution.
But the blessing of recovery inevitably follows the burden of disease. Our own personal and family dysfunctions color the lenses through which we see the world.
One of the things I did not know untilI put together the slide show we are about to see was this: MY MOM WAS BEAUTIFUL.
I spent my entire life not seeing it. I knew she was smart and funny and loyal and fierce, but somehow I didn’t see this. I don’t know how I missed it.
My prayer is that we all leave today just a bit more in tune with the abundant beauty that surrounds us…able to see clearly, as I see in the slide show, that things we perhaps have looked past for a lifetime, are here and waiting to be enjoyed.
I slipped in the back door and left a dixie cup of liquid pain reliever by the kitchen sink.
Yesterday, for the first time in a long time, my mom was able to swallow all her pills.
Today, she had an angry headache.
Progressive Supranuclear Palsy is a terrible, debilitating disease. To the average person, it looks a lot like ALS. In a spinning room, wiping away her tears, she was once given the Lou Gehrig’s Disease diagnosis. Then, months later, given it again—almost. (“You don’t have ALS yet,” the neurologist declared.)
My mom’s first symptom, slurring her words, began about nine years ago.
Today she can not speak. She has an incredibly difficult time swallowing. She “eats” smoothies and soups, over the sink, using one hand to hold her jaw closed. The other hand, which has nearly no function, claws plastic IKEA cups and throws the food into her mouth; then she focuses and swallows the best she can.
It is brutally difficult. She is gigantically courageous.
The process is hard and messy—she spills a lot. Remarkably, she has maintained her weight for coming on two years and we have had no bouts on pneumonia.
Pneumonia is our biggest threat.
I take that back. Pneumonia is our second biggest threat; discouragement is the first.
When you are given first an incorrect diagnosis (ALS) then a likely correct diagnosis (A-Typical PSP) that shares one thing in common—a lack of any medical help available—you begin a journey of willingness to try anything. In these last years, we have done yoga, acupuncture, cryotherapy, red light therapy, essential oils, ozone and UV therapy, IV vitamin cocktails, stem cells, crazy patches that supposedly activate your body, a massive list of supplements and CBD Oil.
The fact that I have resorted to CBD oil shows the level of ANYTHINGNESS I am willing to go to. I hate marijuana.
I hate it.
And, yes, I can tell you the difference between CBD and THC. I know the benefits of hemp and the long history of its uses in this country dating back to Mt. Vernon. I know about the endocannabinoid system.
But I still hate marijuana and every attempt to normalize it in society.
I have walked a long road and crossed a bridge on this topic and, as it turns out, I want help for my mom more than I hate all things Cannabis related, so in an attempt to help her conquer the (lack of) sleep beast that is haunting her, I patch her with crazy patches, drop CBD oil under her tongue, massage her swollen hand, put drops in her dry eyes and tuck her in—praying that she might rest. “The patches are just a placebo!” Critics say with rage.
Let me be clear, at this stage in the journey a placebo effect that makes things feel better is welcome 100% of the time. (I was kicked out of that Facebook group.) After a few days of using the patches, she could swallow pills again.
That might not last, but it did happen.
We have not found any miracle cure, and while daily life is not anything anyone would actually choose, most people don’t survive the disease as long as she has. And most people, after this long of a battle, are in wheelchairs or have significant cognitive impairment. My mom has no cognitive decline and has never fallen.
In other online groups of people associated with the disease, I am questioned, “Are you sure your mom has PSP?” Because nine years of symptoms later, she can still drive and walk and think. Something we are doing might be doing something to keep the full measure of the disease away. So I keep pounding on the internet and swiping my Dad’s credit card to find help.
And I keep my head in my Bible, steady in the knowledge that THIS IS THE DAY THE LORD HATH MADE. THE MESSAGE version of the Bible is my best friend as of late. Today I am clinging to His words in Proverbs 1:
These are the wise sayings of Solomon, David’s son. Israel’s king—Written down so we will know how to live well and right, to understand what life means and where it’s going.
I don’t have to understand or even like much of this life. I know where it is going for all who believe, and that is enough for me. I fail regularly at living well and living right—but that is not a surprise to God.
The surprise to me is that EVEN THOUGH GOD KNOWS EVERY SINGLE FAILURE OF MINE, He still loves me. And He loves my mom.
That is enough.
The ENOUGH of this life can weigh. Me. down. Over and over in my prayer journal I have typed the words, “Lord, I need to know that I will be okay in YOU if ________________ happens.” I am learning, slowly, to release the things that scare me most. The words from Psalm 18 encourage to keep going, and to encourage my mom to keep going:
God made my life complete when I placed the pieces before Him. When I got my act together, He gave me a fresh start. Now I’m alert to God’s ways; I don’t take God for granted. Every day I review the ways He works; I try not to miss a trick. I feel put back together.