Yesterday marked two years since CK and I have been legally wed. This year marks our sixth wedding anniversary, the traditional gifts being candy or iron to signify either sweetness or strength.
Today she's on her way to the Allied Media Conference. Our ability to end up traveling on or around anniversaries has been a constant theme since the first one. The exact dates themselves being less important than our joy in the passing of each year together.
We're living a pretty different life then when we began our married life together. Both of us are now running our own businesses, I'm not even working in tech any longer. We've moved to the far southwest hills of Portland, firmly in the suburbs and enjoying it. We garden even more now, we've adopted two dogs, and we've survived a whole lot of strife.
While this should feel like our season of celebration, this time between the anniversary of our right to legal marriage and the anniversary of our joining our lives together in public ceremony, it feels hard to really celebrate after Sunday's mass shooting at the Pulse nightclub in Orlando, Florida. The largest mass shooting in United States history, but only the latest incident of violence against the LGBTQ+ community.
The Persian poet Jalāl ad-Dīn Muhammad Rūmī wrote, "Is weeping speech?"
Imagine that every encounter you have with a new person is guarded. Do I talk openly about having a spouse, which could be kept "neutral"? When the new person inevitably refers to my "spouse" as my husband, do I feel safe correcting that person or do I let it slide because I don't have the time or energy to open myself up to possible confrontation? While recently flying with CK the airline staff at the check-in counter checked me in and referred to CK as, "Mr. K.", making both assumptions about gender, perhaps just not fully paying attention. Given the tension and stress in airports, was it worth our time and the potential for greater consequences to correct that person about gender, calling out that we're queer? Am I going to lose students if they find out my spouse is a "wife", not a "husband"?
We're lucky, far luckier than many. We live in a pretty liberal city, we're not the only queer people in our neighborhood, we're white, and we have a lot of access to things that make life easier. CK's family loves and accepts us fully. We have a multitude of friends who believe in us and love us. That said, we're grateful for two dogs that bark a lot in addition to a security system.
Imagine that every single day you wake up to the knowledge that there are not only countries in the world where you could be killed for loving who you love, but that there parts of the country you don't feel entirely safe traveling. When CK and I travel, within the country we are both citizens of, we often carry copies of a durable power of attorney for each of us, just to ensure that we would be able to help the other in the event of a medical crises. Imagine making that part of your pre-travel check-list.
Imagine that every single day you walk against a society where people think it is a bigger tragedy that more people like you weren't killed. You might say that this is just one, isolated, extremist preacher, but I have absolutely no doubt that there are people who share his opinion.
That's every day if you're queer. Maybe that's all you've got to carry. You are white and male. You felt accepted, valued, and loved by your family. You had friends and fit in at school. You went to college, graduated, found a satisfying career, found joy in the love of another person....
Stop there. because once you start expressing that your love for another person does not fit within the norms of society you stop feeling valued and accepted. Yes, maybe your friends, family, and boss accept you, value you, but you spend every day knowing that a significant part of society condemns you over who you love. That's the best case scenario if you live in a country that doesn't outlaw your very existence.
Just try to imagine that as the best case scenario. Most people don't have it that way. They don't experience an easy time at school, they struggle to try and fit in, they're not male or white, and they lacked the kind of resources that made getting an education and higher paying career possible.
Now imagine you grew up in a family that derided you, abused you physically, made fun of you, called you names, perpetuated verbal sexual abuse that filled you with shame and self-loathing, made you question yourself constantly, and left you feeling worthless. Imagine that every day you make your way forward, working for good in the world, fighting against the ingrained belief that you are a failure, a disappointment.
That kind of family of origin and the daily weight of homophobia is my everyday experience. I'm a queer woman from a toxic family. My Mother went to her deathbed telling people sadly about my "lifestyle" and making sure I knew that I owed her everything since I was lucky she didn't "get rid of" me.
Today I spent 15 minutes weeping in my van in a parking garage in downtown Portland. Struck with overwhelming feelings of failure, worthlessness, and self-loathing and trying to take in a beautiful email from my teacher telling me how much pride she has in work I've done. Some days are like that. The Buddha's last instruction* was to make a light of ourselves, to shine so that others might also find a way to liberate themselves from suffering.
Some days it is hard to be a light in a dark world.
A friend of mine posted the following (added emphasis is mine) and I think it sums up how I'm feeling today.
I'm so tired. Thank you to the allies who are raising the hard conversations ... I don't have the heart for it right now. I see you challenging friends, family, the media, and it matters to see your support. Please find a way to sustain that passion. Thank you to the few people who are gun owners who have said you don't need an automatic weapon to hunt or protect your families. You're right, but I do not have it right now to fight that fight. And thank you to the people who care enough to say, "are you okay?" Keep saying that - not just to me, of course, but for our collective healing, our humanity. It's not okay that we have to watch this turmoil, it's not okay that many of us have faced threats, exclusion, and judgment - for years and years, not just because of this. This event rips the scabs off of our hearts, to be sure - but this is bigger than that. Are we okay? Start asking that. We are not. Collectively, humanity really needs a reality check. Get the fuck over yourselves and be part of the solution. Don't pray for me, stand next to me. Don't insulate yourself, be uncomfortable with difference. Don't allow politicians to fuel divisive hate - all for personal gain ... check them. Tell them it's not okay. There are plenty of opportunities, find them. But most of all, don't forget these moments of horror and be comfortable again next week.
Please. Don't get comfortable. Don't go numb.
Speak up, stand up, walk beside us. Don't forget this with the next excitement that comes in the news cycle.
*The Buddha’s Last Instruction
by Mary Oliver
“Make of yourself a light,”
said the Buddha,
before he died.
I think of this every morning
as the east begins
to tear off its many clouds
of darkness, to send up the first
signal — a white fan
streaked with pink and violet,
An old man, he lay down
between two sala trees,
and he might have said anything,
knowing it was his final hour.
The light burns upward,
it thickens and settles over the fields.
Around him, the villagers gathered
and stretched forward to listen.
Even before the sun itself
hangs, disattached, in the blue air,
I am touched everywhere
by its ocean of yellow waves.
No doubt he thought of everything
that had happened in his difficult life.
And then I feel the sun itself
as it blazes over the hills,
like a million flowers on fire —
clearly I’m not needed,
yet I feel myself turning
into something of inexplicable value.
Slowly, beneath the branches,
he raised his head.
He looked into the faces of that frightened crowd.
Last year CK was out of town on Mother's Day, to help me through what has become a sad holiday for me, I invited people over for tomato soup and grilled cheese. I got out coloring books, colored pencils, puzzles, and other crafty things. It was a quiet gathering, but full of love.
This year was still hard, particularly since it is the first Mother's Day since she's died. I was grateful CK was home and we spent the sunny day working out in the garden together, had dinner out, and watched a show. Instead of Mother's Day, I have suggested that instead we celebrate "Resiliency Day". CK has pointed out we could celebrate "Dog / Cat Mom's Day", which is true, but I like the idea of a day acknowledging our resiliency, really celebrating it.
Maybe it is just a day where we do nice things for ourselves, like my day of grilled cheese and tomato soup with coloring books. This past Sunday I took a lot of pleasure in tearing out some landscaping cloth and moving rocks as part of a project to reclaim a space to grow veggies in; it made me feel connected to my strength.
That's the whole point of celebrating resiliency; celebrating our strength and our creativity in surviving.
I'd love to see this idea grow. How we can take a holiday that has become painfully associated, like Mother's Day has for me, and instead use it to celebrate how our creativity, flexibility, and strength helped us to survive, possibly even thrive despite considerable disadvantages.
That's my plan at least. I'll celebrate Resiliency Day on any of the dates that give me a bit of a crash. Taking dates, like my Mother's birthday, where it is hard not to be pulled down into anger and grief, and instead focus on how I continue to make changes to live in a way that breaks the generational abuse cycle.
Yesterday was the memorial for my Mother. She didn't want me invited, didn't even want me informed of her death on November 24, 2015. As it was, I was informed a week after she'd already died. Already been cremated. Already had her dog taken to another home. Already done, all of it.
I though about going. Really explored if defying her last wishes and showing up to bear witness to her life would in any way heal the depth of pain I have felt at the many ways she used isolation and cutting me off from contact with others as a form of punishment. I considered the cost of going to such a hostile environment, populated by people who supported my Mother, believed the things she'd say about me, and shared the profound homophobia she cultivated in her last year and a half of her life, and decided that all that stacked against a chance, a slim one at that, of any kind of healing or growth. One might hope that perhaps she knew how miserable her memorial would be for me to attend and asked me not attend out of compassion for me, however, that isn't the case. It was intended as punishment for my being a disrespectful daughter.
Instead, we stayed home and worked on chores, read, and I ended up going to bed early. At the time my Mother's memorial was due to start I decided was the perfect time for my daily Sadhana. I lit the candles, rang the bells, lit the incense. I took a deep breath and was struck with how to focus my intention to honor my Mother's memory.
71 full bows for every year she lived. A last bow for the year that wasn't finished. Then I sat with a photo I'd come across of her as a young girl with her sister. I was struck at how left out she looks, how unhappy in comparison to the glowing smile and gleaming curls of my Aunt. The toxic family behaviors seen in this photo. I suspect my Mother might be around the age I was when I first realized I couldn't trust anyone in my family to take care of me.
Today marks 49 days since her death. It wasn't her belief at all, but to me this time represents her journey across the Bardo. Since those bows and all day today I've focused my hope that she move onto a better life. A life where she is able to feel the love around her, where she is able to feel contentment, where she is able to play at the game of joy without a single stumble.
The Beginning of Grief
I made 72 bows
For her life.
Fast, at first,
On the flow
Of the breath.
Slower as the
The last 12 requiring
Multiple breaths each.
Then sitting, breathing in.
Feeling the blood moving,
The muscles responding
To the sudden burst of
Breath and movement.
Willing myself to
Let her go,
Let her be
Then 49 days
Pass by and
I feel like I am
For the feeling
Has finally left.
**Photo taken by myself of an art installation by Sarah Jane.
My Mother died on November 24, 2015.
I was informed via an email from her old pastor on December 1st. It arrived between my teaching two yoga classes.
I usually don't look at email between classes, but CK and I had left dinner plans up in the air and there was the possibility she was going to put in an online order for me to pick up after teaching. So I looked. The subject preview was sufficient for me to have received the news, even before reading the whole of the email.
I spent much of the rest of the week just stunned, feeling unable to take in the news. A morning spent angry with the facility she was in, since I had let them know that when her conditioned worsened to let me know. Then I thought about it a lot and wondered if it was intentional, that the facility had been told not to tell me.
Yesterday I checked back in with the pastor, asking when he'd found out. That perhaps there was some delay due to the holiday? However, the reply that came back confirmed my worst suspicion; that my Mother had demanded that I not be informed.
The family friends that had taken over care decisions for my Mother informed him the day she died and included a stern reminder that he abide by her wishes to not tell me. He told me that he talked about it a lot with his wife and prayed even more on it, and then finally decided that it was the greater sin for me to be kept in the dark and emailed me. I've since inquired further and he confirmed that my Mother had made the decision to cut me out of everything several months ago.
I'm not sure which is worse, thinking that people forgot to tell me or knowing that my Mother intentionally left me out of the loop.
The last contact I've had with my Mother was the vicious letter she sent me right before my birthday.
In reviewing the letter, which caused CK to exclaim out loud and go a little pale when she first read it, my therapist and I talked a lot about it. I said back in August that I thought it was another effort to get me to fall back in line and go apologize for ever wanting to live my own life, free from abuse. Instead it only strengthened my resolve to not talk with her.
Now the consequences have been made abundantly clear. If there was ever a human who could figure out how to use their own death to strike out at someone, my Mother was that human. True to form, she has had the absolute last word about our relationship by leaving a directive that I not be informed of her death.
My Mother was a master of grudges. Her last directive about me speaks volumes to the profound suffering she was going through. For her to foster such bitter animosity toward her own daughter is shocking, but true.
I feel all kinds of shame and fear around her death, this exclusion.
I feel ashamed I'm related to someone so spiteful and ugly; shame for her behavior. An implicit shame that secretly wonders if I am truly the horrible daughter she's portrayed me as to uphold her wishes, her personal mythology. Fear that as I age I will turn into her. Afraid her behavior is all my fault, just like she taught me everything bad always was.
Since Mom's abrupt departure this past November we've been slowly making the house feel more like our space. We've made the guest room more welcoming and moved in the dressers CK's Mom and step-father brought up for us. What was Mom's bedroom has become our practice room; a space for meditation and yoga.
Several years ago, when Mom was moving out of the home she and my Dad shared I took home the remaining of her Seven Dwarves, a little gnome, and leprechaun. Mom didn't want them, given that she was downsizing to an urban apartment she didn't have the space, and the dwarves themselves reminded her of her mother. We'd put them and a few other things at the front of the door, hoping that the familiar might help Mom in the transition to living with us.
My grandmother had made each daughter a set of the Seven Dwarves. She had got around to making a Snow White for her oldest daughter, her favorite, but never managed to get around to making one for my Mom.
As we've reclaimed the space there's been a lot of discussion about the disposition of these yard ornaments. They really weren't in good enough condition to donate, one even being broken at the back, and having them around just reminded me of the dreams for Mom I've had to let go of.
I took all the ideas and decided to put them all into play in different ways. Those ornaments that weren't already breaking I would "release into the world". Today our friend MC and I took Dora for a walk and placed the 2 unbroken dwarves and the gnome out along a trail in a small park not far from the house. It felt good to place these, I hope that these bring a smile to people walking in the park, a bit of whimsy to brighten their day.
Today is my Mom's 71st birthday. I've not sent her a card and will not be calling her later, in fact I don't even have whatever number she now has.
I feel like a terrible daughter, but I'm working on that because I know that having set this boundary with my Mother is the best choice for the sake of my health and they health of my marriage. I wisely scheduled a visit from friends for lunch and therapy this afternoon.
A year ago we were trying to make a celebration in Hawaii for Mom's 70th birthday, an age I never expected her to see. Even though we'd made all the arrangements and took special care, I was left feeling like Mom found her birthday a let down. On her birthday itself we went out to a restaurant where we could all get tasty food and she could have the fish she had said she was craving. She'd have rather gone to a different restaurant, but knew it would leave CK and I with no real choice for something we could eat. Later she'd make a point to tell me how the fish at a restaurant we like wasn't good, in fact she'd tell me at least a couple more times while in Hawaii that her birthday dinner wasn't very good. The travel back home was miserable.
I feels like things started to deteriorate rather quickly after that trip. Mom's increasing dissatisfaction in living with us; snide comments escalating to sharp words. Again overhearing her telling friends how it wasn't what it seemed here, that we didn't really take good care of her or make anything nice for her to eat or special dishes. Worse, her intimating to people that she felt I was misusing my access to her bank account. Attempts to take her out for lunch on weekends were spent in near silence, her eating but not really interested in engaging with us at all.
When Mom came to live with us I still had this desperate hope that I could really help. I had an even more tightly held hope that my Mom wasn't as bad as I thought, that some of my tense, defensive behavior toward her wasn't warranted. Seeing Mom through the lens of CK's view, free of my history, would let me heal some of that distrust that came up for me.
Only that turned out not to be the case, not entirely and not how I hoped. True, we managed to tremendously improve Mom's health. She was in better health than she'd been in for a few years. She was in much better health for making the transition to an assisted living facility. One of the things that hurts is finding out that Mom didn't really want her health improved, she didn't want to let go of her personal mythology that her health was an insurmountable obstacle and she a helpless victim of her bad health. She resented that careful blood glucose monitoring and insulin adjustments, along with a healthier, vegan diet improved her health noticeably.
The rest of it, the harder part, is how quickly CK saw the narcissistic, petty, ill person I'd been raised by. Not only was my feeling the need to defend myself warranted, it needed to be bolstered by setting the kind of boundary I've now set. As painful as this has all been, devastatingly so, I know I wouldn't have been able to see my Mom and my childhood quite so clearly if we hadn't moved Mom in with us. I was correct that in changing my view by seeing her as CK sees her would teach me a lot, the sad part is that it wasn't what I was hoping for. It wasn't that changing my stiff interactions with her would improve anything, not in the long run, since my Mom has never really wanted a relationship with me. The only relationship that is possible with her is the one where I'm not me, I'm her "miracle daughter" who takes care of her every selfish need. The mirror of the person she wanted to be.
That explains it so well, that she expected me to mirror back to her the girl she had wanted to be. Between trying to force me into becoming the person she wished she'd been, and either subverting and punishing me for asserting my own identity, it makes sense. When called on this behavior she attacked us.
I wisely scheduled a visit with one of my therapists today. She asked me what it was I was losing by sticking with my boundary-setting not contacting her. I thought about it a lot, I mean I'm clearly "losing" many things that do not further my life or my health. What is it that I feel loss for, what do I grieve, that's what I thought about. I finally replied that I was losing the fairy tale; a mother who cherished, supported, and believed in me. A mother who cheered me on as I made my way and who would always have my back. The kind of mother I see so many friends write about having. I have to set that particular hope aside so that I can move forward with healing and becoming the person I want to be.
I can still hold her in my heart, sending thoughts of loving-kindness her way along with my earnest wishes for her to experience peace and happiness, or even just contentment. I can feel great compassion for her inability to move towards health, but I cannot see her. Having compassion for her does not mean I set aside my own health or sacrifice my relationship with CK.
I'm not yet ready to write about the past few months. The high level summary is that Mom has not returned and is living at an assisted living facility not terribly far from here. On the advice of multiple healthcare providers, and even more importantly, my wife, I have asked my Mother not to contact me further. Thus far, she has respected my request.
I was asked today by one of those care providers if making this request and having Mom respect it made me feel happy. It doesn't, it doesn't at all, it makes me feel a great deal of sorrow. I fully accept that my Mom's view of reality cannot be challenged, ever. When that happens she either reacts to destroy or flee, or both really. I've stopped responding in the way I was trained to as a child and now threaten that view of reality. For the sake of my health and the health of my marriage, I am moving on with my life.
It is really hard. The holidays, particularly as compared with all the hope I'd been filled with last year, were painful. I'm still at the stage were animated movies with a princess in it can be triggering.
What I have been allowing myself to be fine with enjoying is the feeling of rest. Not having to time my entire life around blood glucose checks and insulin adjustments for a person who was hostile to both CK and I. My relief & gratitude and my grief can be part of me concurrently, within the same space.
Since then? I've been making art again. It had quite honestly been over a year since I'd really created anything, aside from what I'd made in a workshop last May. While I still need to get back to that large project, I've made a handful of new things. I am continuing to enjoy connecting with other artists, mostly all women, once a month.
At the meet-up at the start of this month, we had all brought supplies to share at a common table. Kind of the collage artist equivalent of a party where everyone brings clothes they're no longer wearing and you pick through all the other clothes, taking home something awesome to you. I'd brought a bunch of traditional scrapbooking paper, since I've been really moving toward using mostly things I've created, and stickers. Upon overhearing how I love finding ways to use real stamps in my work, several other women started looking through the pile on the table to help find all of the stamps (quite a bundle) that someone else had put there. Likewise for to giant puzzle pieces, from another women who'd noticed the smaller, altered puzzle piece I'd brought to share. I left with my heart full at how giving, including, and supportive this group is and how grateful I am that I've made space fr it.
I've been continuing to practice my photography. Last week I was fortunate enough to get a few days in Yachats with Dora while CK was away on a business trip. A good friend joined me for 2 of the 3 nights I stayed. It was the perfect time to practice what I'd learned in November.
CK and I have been working on projects around the house and are having some more art professionally framed. It feels like bit by bit we're reclaiming the energy of the house. I've been napping a lot, which I've been advised to find time to continue to do. The same group of care providers have noted that I've been dangerously exhausted. Physically, emotionally, mentally, and spiritually exhausted and it may take more than a few weeks to recover.
While I don't feel it is possible to be happy about making the decision to separate my life from my Mom, I do feel some wonder and enjoyment at starting to feel like it will be a year of changes to improve my life.
CK pointed me to Henry Miller's 11 Commandments of Writing & Daily Creative Routine. I am particularly taken with his third commandment:
"Don’t be nervous. Work calmly, joyously, recklessly on whatever is in hand."
Not bad advice as a new year begins.
Last Thursday Mom told me she didn't want to try to change or address her emotions. It hurts a lot. I'm trying to not let it feel like a personal rejection, but it is hard. When it counted all of my parents, Father, Step-dad, and now Mom, have always chose to not fight, to not do the work needed to stay in the world. I'm trying to remember that the depth of Mom's mental illness makes trying seem like a task not worth doing and it isn't that she doesn't care enough about me to try.
Saturday was filled with the wonderful gift of a cooking lesson from a woman who has gone from "vendor" to "friend" in the years we've worked together to provide a tasty lunch at Open Source Bridge. She met me, and a few friends, for "coached shopping" at a new Asian supermarket. Then on to freshly made tofu. Back to our home for a flurry of cooking. It wore me out, but it was good to have that energy in the house.
Yesterday I woke up feeling like I needed a do-over. I had slept alright and got up early enough to have a soak after feeding our companion animals. I then got Mom up and got her started on her day, but was finding my morning tea was leaving me feeling a nauseous. I decided the answer was to just go back to bed for a while.
I did. I slept another 90 minutes or so and felt better for it. Then I went online and discovered the news that Lou Reed had died.
I nearly just gave up and went back to bed, but the necessity of errands drove me forth. The misty, gray day suited my lousy mood. I bemoaned my iPod, which had died recently taking my library with it. Much of it is backed up, but getting our music server going is a project we need to take on together soon. I couldn't immediately gratify my desire to put on Lou Reed's music, loud. I was angry at yet another loss, regardless of the inevitability of loss that is part of living.
I decided the day, with all the tiredness and sadness brought on by Mom's declaration, combined with a moody-funk brought on by the news about Lou Reed, needed flowers. I set out with the intention of glaring down the errands, buying my damn flowers, and defying the misty grey weather by potting them on the front porch.
Then the sun came out. I got home, bought a copy of "Magic and Loss", transferred it to the shiny new iPod CK bought for me while she was flying off on another business trip, and set to planting my flowers. I ended by sweeping down the bricks. In my bones when I sweep down a walk in chilly weather I am drawn back to sesshin. The music ended. I softly chanted some of the Diamond Sutra. I went back inside feeling more grounded.
Today I saw my acupuncturist. I shared with him that I have been feeling foolish for getting my hopes up around Mom. I so deeply hoped that our alleviating the burden of her health management, of stabilizing her health, would create a space for her to want to have a relationship with me based around something other than appointments or shopping. The reality that she doesn't want that and no amount of my hoping and wanting it for us makes any difference is tough.
My very wise practitioner quickly responded, "Oh don't do that. Never feel foolish for hoping. It is wonderful to have hope."
I blinked in surprise at this swift re-framing of my feeling dumb for getting my hopes up. He then added, "You tested the bounds of that hope for your Mom. You've done what you could. It is alright to have had hope then found it wasn't a possible path. It is time to move on."
It still hurts, a lot. I'm trying to reset to new hopes for Mom. That she'll be safe and secure. That she'll find new friends who have more in common with her. I am not going to push it and hope for contentment or ease for her, I feel these will elude her entirely. She will always stumble on joy.
I was introduced to the song, "What's Good", by the late Lou Reed when it appeared on the soundtrack for one of my favorite movies, Until the End of the World. It is actually from "Magic and Loss". I have always been really struck by the lyrics toward the end that remind us that "Life's good (but not fair at all)".
If things were "fair" then Mom would want a relationship with me as much as I want one with her, she'd respond to all the work I put in to try and make that happen. Sunday ended up being sunny and beautiful. The flowers I planted graced our home. Life is good, even when it feels distinctly unfair.
by Lou Reed
Life's like a mayonnaise soda
And life's like space without room
And life's like bacon and ice cream
That's what life's like without you
Life's like forever becoming
But life's forever dealing in hurt
Now life's like death without living
That's what life's like without you
Life's like Sanskrit read to a pony
I see you in my mind's eye strangling on your tongue
What's good is knowing such devotion
I've been around, I know what makes things run
What good is seeing eye chocolate
What good's a computerized nose
And what good was cancer in April
Why no good, no good at all
What good's a war without killing
What good is rain that falls up
What good's a disease that won't hurt you
Why no good, I guess, no good at all
What good are these thoughts that I'm thinking
It must be better not to be thinking at all
A Styrofoam lover with emotions of concrete
No not much, not much at all
What good is life without living
What good's this lion that barks
You loved a life others throw away nightly
It's not fair, not fair at all
Oh, baby, what's good?
Not much at all
Hey, baby, what's good?
Not much at all
But not fair at all
**Trigger Warning: Lots and lots of Mom Stuff, Abusive behavior, references to childhood abuse and dealing with addiction issues**
It has been a year since we moved into our new home, 11 months since Mom moved in with us. It has been quite a year.
Honestly, I have found it hard to write about anything. This year has been facing the reality that I am unable to affect my Mom's happiness, no matter how hard I try.
It has also taken away my last hopes that maybe my childhood wasn't awful. That it only had moments of lousiness. That my Mom was pretty good the majority of the time.
Those last hopes are pretty much gone having seen how quickly CK has seen Mom's manipulative tendencies. How swiftly she's become horrified by and angry at Mom's behavior. It is deeply painful to really acknowledge the truth of one of my therapists observing that she felt my entire childhood was devoid of any adult who had my best interests at heart.
All I've wanted for Mom is to see her content, happy even if just in small ways. I gave up on seeing Mom have a life that's fulfilling a long time ago after realizing that I don't think I could recognize what that means to Mom. I also recognized a long time ago that what I find fulfilling, my Mother finds either amusing or baffling, which also hurts.
We hoped that by bringing Mom to live with us we could help relieve some of things she was clearly overwhelmed by. Living alone she fell several times, kept getting sick, and was clearly not coping with anything. I was going out to Gresham all the time, sometimes in a panicked rush. We knew that with some oversight with medication and meals, and some company, that she would stabilize. I'd hoped that with stability we might have the space to enjoy some of our time together.
The first weekend after she moved in we had a low blood sugar incident because Mom had taken insulin and didn't follow up with food. We were out running errands and not here to supervise. When we arrived home Mom was barely responsive, clammy, and incoherent.
By "incident" I mean a fire truck out front, 6 or 7 very large, male EMTs in our cramped living room that had just been filled with Mom's stuff, and an ambulance ride. It was the second time in my life I've been asked to "ride shotgun" in an ambulance with someone I know being stabilized in the back. I gave directions to the hospital, the ER doc went over her list of medications in shock. After returning home from the hospital we also took over Mom's medications, particularly things like Oxycodone and Ativan, which we caught her about to incorrectly dose herself.
It hit us really hard that the terrifying mix of Ambien, Ativan, Oxycode, and Fentanyl patches she was on left her in kind of a vague haze all the time. If you add to the the insulin, forgetting to eat, and not eating well we knew it was really no wonder she hadn't fallen more. A combination of over-medicating herself and low blood sugars could have very easily been lethal.
Since this incident all her diabetes medications and insulin levels have been adjusted and we most often check into be sure she's eaten after insulin. CK spent several months having weekly calls with a diabetes nurse specialist at Kaiser to track Mom's blood glucose, get Mom off the Metformin, figure out what the new R and N insulin doses should be, and what the best scale for corrective R insulin needs to be. We make sure Mom checks her blood glucose 4 times a day, correcting the insulin dose 2-3 times each day.
Every other week for the past year and a half or so I set up her meds for the next two weeks. We've also realized that she still doesn't do well getting them out of the containers, often leaving pills behind, and occasionally taking the pills incorrectly (wrong days, wrong time to take them, etc.). Since last autumn every morning we set out a day's pills in small ceramic ramekins, each resting on a colored sticky note to indicate which time it is to be taken.
I now also dispense her Fentanyl patches, which she also hadn't been taking correctly. I've got her to stop taking Ativan too and work with her in stressful situations to try and focus on her breath, reminding her that she's alright. Besides which, her last physician had prescribed it only because of the traumatic way her late husband's family dumped her at the independent living facility in January 2012. Mom isn't having panic attacks anymore, so it doesn't make sense for her to keep taking Ativan on a daily basis. At times she was taking one a few times a day in combination with Oxycodone 1-2 at a time, "as needed". Yes, that is on top of 100mg Fentanyl patches and her taking Ambien at bedtime.
We've stopped the Ambien too, particularly since she already is taking an Oxycodone at bedtime too. When she was taking those Ambien and Oxycodone at bedtime she would become alarmingly out-of-it. No surprise.
Then there's the kidney disease. After years of diabetes, and not really doing a good job managing it, with the related medications like Metformin has left Mom's kidneys is sorry shape. The result is a constant struggle with anemia since her kidneys fail to adequately do their part of the job of red blood cell production. This means bi-weekly blood work to see how her blood levels are. When they're falling, there is the scheduling for a type & cross-match followed by a transfusion, sometimes needed monthly. She had an access port installed several years ago, but to ensure that it always properly working in case a transfusion is needed we also have to have bi-weekly port flushes scheduled. Since we've engaged the help of the care management folks at least the work of taking Mom to a Kaiser facility weekly is offloaded from us, but still we're always reviewing the lab results. We also weekly dispense a dose of Procrit which stimulates the kidneys into working and have regular calls with the nephrology pharmacy as the dosage needs to change to try and keep ahead of the anemia.
It hasn't been easy getting Mom's health to stabilize, but we've done it. There have been no more serious falls and no more low blood sugar incidents. On top of that the change to a vegan diet* and stabilization of her blood glucose levels has meant that her eyes** are actually improving, her near constant digestive distress has been resolved, and her triglycerides have lowered to the point they can actually be measured.***
*Mostly vegan, we encourage her to eat as she likes outside the home.
**Mom is legally blind due to complications of the diabetes. Her eyes have had a lot of swelling in them, necessitating treatments directly too them. Her eye doctor was actually quite pleasantly surprised at our last visit and felt that the diet change and blood sugar stabilization is clearly helping. He told Mom that she should keep doing what she's been doing!
***Yes, Mom's triglycerides have been so high they've been out of measurable range.
We've worked with a new physician on what her dose of Oxycodone is, but Mom often complains about wanting to go back to when she was self-dosing with these. The amount we can get from the pharmacy is very strictly controlled and we're not allowed to pick them up early. On more than one occasion we've come up short of the date, which leaves me suspecting that she can actually get into them on the high shelf I've put them. In fact, I've moved them this week because I really think some of those prescriptions have been "short" because she's got into them.
There's been some good, but mostly it has just been a damn long couple of years we're coming up on. That said, it has been a particularly lousy week.
Sunday, when CK and I were going to leave to go take care of the week's grocery shopping Mom somewhat snidely remarked that she hoped we had fun without her.
Mom's been resentful for a while that grocery shopping isn't set aside as a fun outing for her to poke around the store. Getting the grocery shopping is largely a chore I like to get done with as efficiently as possible and I realized early on that shopping with her took at least twice as long. I also had to stop her from nearly running into people with the shopping cart she insists on using. Grocery shopping with Mom makes a tolerable chore an anxiety inducing activity.
On Monday I had to admit I was fighting a cold. Watching CK play Skyrim after dinner started making horribly dizzy so I went to lay down. While I was doing so I could overhear Mom, through her closed door, on the phone with a friend complaining about us, particularly about how "of course" we didn't take her with us shopping along with other bitterness.
This is not the first time one of us has overheard Mom bitching about us on the phone. CK even confronted Mom once after overhearing her telling a friend that I was misusing her funds. What shocked CK most about this is my lack of surprise that Mom should get caught saying awful things about me to people behind my back. She's done it many times in my life, at various ages.
On Tuesday Mom's blood glucose at dinner was unexpectedly high, particularly since she'd had lunch earlier than usual that day. It was high enough that I'd asked her what she had for lunch and asked if she'd had a snack in the afternoon. A snack would have been fine, I just wanted the 220 blood glucose to make some sense. I had her retest, assuming she had something on her hands, but it was still at 200. I just shook my head over it and gave her a higher dose of the R insulin to take before dinner. We've suspected Mom's been snacking in her room because she's been overheard munching at times and we've also caught Dora licking up crumbs off the floor. We've asked her about it, but she always denies it. sometimes really defensively.
On Thursday morning CK realized that our recycling and compost cans didn't make it down to the curb and rush out in the morning to do so. She discovered Mom had accidentally dumped the small trash can from her bedroom into the recycling. This has happened a couple of times. We've labeled the cans with big reflective letter stickers, we've suggested she not take it out when it is dim outside (which makes it even harder for her to see which can is which), and we've even noted that her trash is emptied every other week by the person who comes and cleans the house for us. Still, it is one of those things where she still wants to feel like she can do something herself, so sometimes we end up with trash in the compost and recycling, leaving whoever finds it the messy job of getting the trash out of the wrong bin and into the right one.
That's not the bad part. Yes, it is frustrating and irritating, but if that's the only irritation we dealt with it would be entirely manageable.
In the trash CK discovered several Twinkie wrappers and a receipt from buying some herbal weight loss pills while out shopping with friends when we visited Toronto for our anniversary. Take away that Twinkies aren't vegan. Take away that she's self medicating with weight loss pills that, combined with all the medications for her diabetes, high blood pressure, and congestive heart failure, not to mention her pacemaker, are really a dangerous combination. Not to mention just being a bad idea to take them with Mom's combination of health challenges. Take all that away and we're left with her sneaking things that are not good for her and lying about it.
CK confronted her while I finished getting dressed. I had to take several deep breaths to go out into the kitchen where I could hear Mom implying that her hiding things was our fault. That she is forced to lie and sneak because we so rigid, don't let her have anything she wants, and "treat her like a child". I confronted her about the high blood glucose on Tuesday evening, noting that Twinkies explained it now. I told her I wouldn't have cared if she'd had a sugary treat, even if it isn't the right kind of choice for herself. I had just wanted to understand because unexplained highs or lows in the blood sugar can be indicative of something going on that should be seen to by her doctor.
Since Thursday morning Mom's barely spoken to us****. She is polite, but doesn't really engage and retreats to her room. I haven't given in to the old training that compels me to make it better for her, comfort her. CK is also not really talking to her at all after telling Mom she needed to really honestly talk to us. Right before Mom told CK that she's not a psychologist and she can't make Mom say anything.
This past spring we had an assessment of Mom done by a company in town that provides care coordination and management for seniors and other vulnerable people. They advised that Mom shouldn't be living with us, that the level of oversight and assistance she needs would require us bringing in a lot of extra help in the home. I've also been questioned pretty repeatedly by both of my therapists this past year about what I get out of having Mom live here, aside from the reassurance that direct oversight of her provides.
Mom's not happy here. My therapists believe Mom really isn't capable of happiness, that she connects with others only through misery. Lately I think the main things she gets out of being here is an increase in her monthly income, because she's not spending as much for her "rent", and access to a hot tub. I've felt for several years that while Mom says she loves me, she doesn't like me. She doesn't respect me, doesn't understand me, and feels entitled to demand respect from me.
Mom has this idea that merely attaining a certain age entitles someone to be respected regardless of how they behave. Growing up I was repeatedly told that age demanded respect, regardless of truth or what was ethically right. Mom also raised me to respond to her unhappiness, to do anything to make her happy and to make things easier for her.
Add to a huge, lifelong list of behavior and mental health issues the fact that the clear toll of the past couple of traumatic years is a decline in cognitive ability. Add to that the reality that Mom can go from generally OK to totally decompensated very quickly. This progression is so rapid that it is not advisable for her to take public transportation, not even the ride share for seniors. She does take a shuttle to the senior center, but those drivers have more experience dealing with folks like Mom.
The assessment folks were right. CK and I are so overwhelmed with the effort to care for her that that effort combined with our respective, demanding jobs, means we often have little energy left to connect with one another. It has become increasingly clear that Mom does not, cannot appreciate the tremendous effort it takes to keep her health stable. In fact, I often am left feeling like she resents our efforts to keep her health stabilized because she doesn't want to think about what she eats, she doesn't want to keep a consistent schedule around eating, she wants to take all the pills that let her put this world she hates and the pain she fears behind a haze of fog.
The reality is that Mom will be unhappy, petty, and spiteful no matter where she lives. She will continue to decline mentally, further removing any hope that she can honestly engage with us about the hurtful ways she behaves. Not that she ever really has taken responsibility for her behavior.
On Tuesday afternoon we met with a woman who specializes in placing people in care facilities. She was recommended to us by the people who did the care assessment. Her belief, given Mom's cognitive state and mental health issues, is that Mom needs a residential care facility. She is encouraging us, me particularly, to understand that it is OK to pursue this decision about Mom's long term care, that it isn't reasonable for us to sacrifice our life together just so Mom can be terrible to us, me particularly. No sacrifice on our part can actually bring Mom happiness in any way, but will only further harm us.
****As of 11pm we've had a huge blow up, but I suppose at least it isn't festering just below the surface any longer.
Back in January I finally decided to sign up for a workshop with Seth Apter at one of my favorite little, local art shops, Collage. Today was the day.
It has been hard this past several weeks. Igal's death has been a dark pall over the bright flowers of spring. I was really quietly pleased that despite the grief, anxiety, PTSD triggers, illness, exhaustion and busyness of April, I still managed to put together 30 poems in 30 days.
In the cleaning, sorting, distributing, and dealing with Igal's apartments, which his closest friends took on, some of his things were sent to, or set aside for people. I helped in the initial days, the apartment was easier to deal with than the meetings to plan his memorial. In the final days our friends decided some things should be brought to us.
Japanese ceramics, a collection that seems to have no theme beyond being pleasing to Igal at some time has been brought to CK and I. I look forward to serving festive dishes, particularly Japanese ones, on these beautiful dishes. At future Thanksgiving dinners it will give me a way of continuing to include Igal, despite his being gone from this life.
In January, when I'd decided to attend the workshop, I had so looked forward to discussing my ideas about it with Igal. He had encouraged me to explore using acrylic medium for my artwork. At one of our infrequent, but wonderful Art at Koehler Haus days, Igal sat with me and shared his acrylics to help me learn how to use them.
Another gift of our friends was a decision to bring Igal's art supplies to us. Today I had Igal with me; I brought his paint box with me to class and used many of his acrylic paints and glaze in the start of my project today. I am so humbled that our friends thought these things should come to me.
I was so nervous this morning before heading to the workshop. All the usual feelings of inadequacy, of "pretending" at art. CK gave me a kiss before leaving, encouraging me.
Our instructor, Seth Apter, was great. He immediately assured us that we would most likely not finish! Such a relied to be assured that 54 small collage pieces was a tall order indeed!
We quickly got to work on applying black gesso to all 52 playing cards and a piece for the front, another for the back.
He reminded us right away to not forget to work on the cover and back pieces, on book board, pieces in addition to the 52 playing cards. The black and the beauty of metallic, gold acrylic inspired me to create a small Enso. I will admit that it felt really very good when Seth complimented it, showing it to the other workshop participants, and recognizing it as an Enso.
Next we were encourage to apply some layers, at least one, of acrylic paint. My colors were all fairly rich and dark, against the black gesso they mostly implied a suggestion of color, which was pretty lovely.
Then we were to set aside one side for adding text. Eventually my book will have poems by Hafiz and Rumi appearing on these pages. To the other side we received instruction on how to mix the acrylic paint with glaze to make sheer, translucent layers of color over the black gesso.
Next came time to apply collage layers. Here's where I felt a little lost. I'd thought I'd seen the boxes of paper and emphera I've collected these past handful of years, but I only found the small box of the smallest scraps. Given that we're altering playing cards, it was really just fine, but I still wish I'd found my awesome paper stash!
All too soon the workshop was over! I am only a quarter or a third of the way done! I really can't wait to get my office fully together, my chair out the box, so I can create!
Today is all "wrapped up" and I'm already thinking about making a book of Mary Oliver poetry in this form. I'm also really intrigued by Seth's inspiration for this workshop; making one card a week for an entire year. Seems like a great way to combine collage, altered art and haiku into a project.