Dooce is Dead

“Dooce” was the blogger name of Heather Armstrong.

The pioneering mommy blogger Heather Armstrong, who laid bare her struggles as a parent and her battles with depression and alcoholism on her site Dooce.com and on social media, has died at 47.

As a personal blogger back in the early blogging days, Dooce inspired and pushed the envelope for many of us trying to establish our own authentic voices on the internet.  As she succeeded in writing herself into existence, she paved the way for personal bloggers, like me, to use that public format as a way to navigate our ways through tumultuous personal times because we did not have to feel isolated and unheard.

For me, it included years of being an abused caregiver; the five days I sat with my mother while she died;  my debilitating struggle with not being about to fall asleep; my experiments with medical marijuana; and my ultimate sleep solution with an unusual pharmaceutical.

Like Dooce, I suffered from depression, but unlike her, I have been able to control mine, and, in association with that, to finally fix my sleep problem.  For years, I tried to convince doctors that my inability  to fall asleep was a matter of inefficient brain chemistry.  While my depression meds triggered certain neurotransmitters that produce the chemicals that supported mood, they did not deal with dopamine.  After doing extensive reading on the subject, I was convinced that my brain’s inability to trigger dopamine was behind both my mood swings and my sleep deprivation.  A psychiatrist finally prescribed Abilify (which triggers dopamine) and my problems were solved.

I think of what Dooce endured as she struggled to find a solution to her depression.  Her depression grew worse, leading her to enroll in a clinical trial at the University of Utah’s Neuropsychiatric Institute. She was put in a chemically induced coma for 15 minutes at a time for 10 sessions.

She finally committed suicide.  What if her struggle could have been lessened if she just were given the blend of meds that would have balanced her brain chemistry?  Why isn’t there  more research being done to produce the pharmaceuticals that will help brain neurotransmitters produce and maintain the necessary balance of the chemicals necessary for mood balance: dopamine, serotonin, oxytocin and endorphins?  One big motherfucker happy pill that balances imbalanced brain chemistry.

Dooce committed suicide because life’s pain was more than she could handle.

Last night on the series “911: Lone Star”, a character with the last stages of Huntington’s Disease commits suicide, using what looks like helium inhalation. I happen to believe in the right of an individual in terminal stages of an illness to choose to end their life on their own terms.

I also believe that folks should be more comfortable talking about death and dying. ,  Back in 2010, there was a movement to set up “Death Cafes”.

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.

I, for one, would love to  have access to a Death Cafe, and even suggested that a local senior center hold one.  The idea was never even considered.

At  age 83, I think about dying, since it could happen any day, now.  I also think about living, and doing what I can to make what life I have left continue to be a hoot.  But I would love to meet with kindred folks who, like me, want to be emotionally ready when the time comes, not matter how it comes.

Dooce is dead, too young, too fraught with pain.  There had to have been a better way for her.  There has to be a better way for all of us.

Sleep still won’t come.

Months and years have gone by as I unsuccessfully struggle to find something to help me fall asleep. I have blogged about it various times, the latest here:  I never did the Ketamine Therapy for various reasons.

Over the years, Ihave undertaken several steep studies, the results of which say that I have apenea and need a CPAP.  But, I say to them “Once I manage to get to sleep, I sleep.  I just can’t FALL asleep.  A CPAP will not do anything to help me fall asleep.”

Last night I did an at-home sleep test, which required that I wear a strap around my chest so that a sensor was where my heart is, a tube around my ears and into my nose so that my breathing could be tracked, and a sensor on my finger to gauge my oxygen levels.  Even though I took some of the mariijuana gummies that often help get me sleepy, I was awake all night.  Well, I might have dozed off now and again, but mostly I watched the hands of the clock move through the night.  All of the paraphernelia I had to wear did not encourage sleep.

I know that we are advised not to get medical help off the internet, but the various doctors I have been to can only advise me to use a SAD light in the morning and go and sit before it.  That’s the standard way to fix a Circadian Sleep Disorder.  But I am so tired in the morning that I just can’t get myself out of bed until almost noon.

I have a theory that I can’t seem to get the doctors to consider, so I have been researching the way neurotransmitters have to work in order to support sleep and stave off depression. Severe, chronic stress, sleep deprivaion, and some drugs can cause neurotransmitter depletion. Some researchers believe that insufficient levels of neurotransmetters could lead to feels of sadness, depression, and sleep problems. One of the therapies that specialists use is Amino Acid Therapy, which provides the specific nutrients that the body needs to built its own neurotranmitters and rebalance the brain. I have been taking supplements, but apparently they are not enough.

Without an amino acid infusion for neurotransmitter balancing, it’s not unusual for patients to deal with an absence of dopamine or GABA, which means that they have difficult time resting, relaxing, and sleeping. Most importantly, neurotransmitter balancing reduces stress. With these natural chemicals, patients return to the point of equilibrium and feel more in control of themselves.

There are other theories that I am researching, including one that involves the brain producing an enzyme when under severe stress that diminishes the effectiveness of the “happy” hormones that the neurotransmitters send out.

My Circadian Sleep Disorder began during the five traumatic years I spent caregiving my mother while we lived with my brother in his house.  I slept when she slept, forced myself to stay awake when she was, and had to survive abuse from my brother.  When I finally moved out into my daughter’s house, I spent two years healing the best I good, but my sleep never went back to anything near normal.

I have always been a night person, but I still was able to fall asleep on a dime.  Not any more.

My plan is to discuss all of this when my doctor calls me with the results of the sleep test.  A Neuropsychiatrist is the specialist who can test for neurotransmitter functioning and prescribe a treatment.  There is one locally, and my goal is to get an appointment with her.

I desperately need to knit up my raveled sleave of care.

 

Getting Back in the Personal Blog Saddle

More than 20 years ago, my son, Bix (who is autistic but didn’t know it back then) got me into blogging.  The personal connections that I made back then helped to get me through some rough caregiving years.  We all posted every day, whatever was on our minds at the moment — politics, culture, health, family, mutual support, cats. We commented on each other’s posts and kept conversations going. We were a real community; we got to know each other pretty well.  Some of us even found a way to meet in person, but even those of us who never did, still developed real friendships.

But, times change, priorities change, culture changes. Life happens.

My last post pretty much explains why I have been otherwise occupied.  I am on my last great adventure — the adult love affair of my life.  At 82.  It has it’s challenges, especially since we live an hour away and each of us lives with our daughters.  But we are figuring it out, together.

Now that we are past the Solstice and into a new year, I’m going to make an effort to post more often.  There are still things I care about, struggles I and others are going through.  Maybe there will be a way to slowly build another blogging community, but even if not, I will again follow the example of my son and get my blogging hat back on and see where it goes.

One of the things that has gotten my brain interested in writing again was a request from my daughter to write my story for my grandson, Lex.  The request actually came as a gift last Christmas from Storyworth.com, which provided a question every day that I could answer, with the idea that it would all be printed into a book at the end.  I opted just to start telling my story (I just finally started), and I have until January 16 to finish it.

My circadian sleep disorder is still not under control.   Medical marijuana usually helps.  I manage it the best I can.

And so it goes.

 

 

Out of Focus

I wote this in 2004, four years into being the full-time, live-in caregiver for my mother, who had severe dementia and the object of the abuse heaped upon me by myi brother. It is a reminder that I have been through writer’s block before.
I think I remember a time when I could focus on one thing at a time — a poem, a person, a pleasure — when the process was as important as the product. I’m trying to remember when the last time was that I felt that focus, that stillpoint. Oddly enough, I think it was was a decade ago when I used to go out on Thursday nights to dance the Hustle for hours on end. I would follow the lead with such total focus that all I was aware of was my blood humming to the rhythm of the bass and my body carving sharp arcs through the smokey air.
I think I used to know that same kind of focus when writing a really good poem, feeling the rhythm come, hearing the hum of swarming words. But that was when I lived alone, with long, quiet moments to feed my focus. That was when I would have hours of down-time at work, alone in my own office, with nothing to do but let myself succumb to the processes of dream timethink what happened is that I got really good at my job — multi-tasking, meeting deadlines, serving many masters. Scheme thinking. Quick thinking. No time to dream, alone, in a corner with a window.

I think what happened is I learned t.o care too much. I think what happened is that I let the world nibble away at my layers so that I lost my deepest secrets.

“The Many Breasted Artemis,” my shrink once noted, as I unloaded my distress at being expected to always be the nurturer, the feeder, the source of unlimited resources, the problem-solver, the responsible one.

I thought that when I retired, I would be able to find, again, that dreamy focus. Instead, it takes me until midnight to finally breathe evenly and deeply, to let go of all of the knowing. It takes me until midnight to finally feel the yearning for deep secrets.

But to have secrets, one has to have a life beyond the giving of care.

I’m waiting for my time to come again, when I will, again, simmer and stir, ladle, at last, into mounds of midnight words, that witch’s brew.

Beginning a New Adventure: My Jungian Journey

I have been through the process before, and blogged about it decades ago (somewhere on my old blog, which is only partially still available on blogspot). Severe sleep issues, depression (only partially helped with meds), and writer’s block have led me to try it again, this time with a different analyst, because my previous one is focusing these days on veterans and PTSD. Jungian analysis connects well with Shamanistic “soul retrieval”, in which I’ve also engaged before and which also has been successful.

One of the concepts Jung espoused is “synchronicity”, which, simply, is meaningful coincidence. And there already have been several as I work with this therapist: we both use a pen with purple ink; we both have hair issues; we both sport wearables that identify us — me my t-shirts and she exotic necklaces. Jungians also deal with dream interpretation, and I had one last night that is rife with meaning.

In real life, I am always worried about getting locked out of the house if no one else is home, so I found a very esoteric place to hide a key, which I wrap in plastic before I hide
it. Last night I dreamed that someone I was with wanted to come into the locked house, so I went an got the hidden key, let us in, and then started to re-wrap the key. Except I was having a hard time manipulating the plastic. I woke up before the story ended.

I have only had three sessions, but already stuff is shaking out.

One of the fascinating techniques that Jungians use is “sandplay.” My therapist has walls of shelves with various figurines, from realistic to imaginary, to use in setting up a sandplay scene. The figure at the beginning of this post was the one I picked to begin my scene. (I didn’t know why until I got home and started analyzing why I might have.) The actual figurine did not have that Celtic Raven on her shoulder, but she did have some sort of a black bird. I replaced it with a Celtic Raven because I have become fascinated with its mythology — and this representation of it. (I even made a shirt with a Celtic Raven on it.)

I have named her “Baba Bogina,” Polish for “Crone Goddess.”

So much is happening, and I have just begun. One of things I will be doing in the next few weeks is making an appointment with a nurse who is also a shaman, to do a “soul retrieval.” Those of you who read my blog eight or so years ago, know about the traumatic five years I spent living with my demented mother and my emotionally volatile brother — resulting in what my Primary Care doctor was convinced is PTSD. There is stuff still stuck in my subconscious that I can feel is keeping me from moving on. I’m still feeling angry. I’m still feeling guilty.

I was in a similar place after my divorce, and, thanks to my former Jungian therapist, I was able to move on. Follow me if you want to get a idea of how Jungian therapy can work from a very personal perspective, as I learn to access the wisdom of Baba Bogina, who is an archetype and who is a part of me.

Death With Dignity

The case for “Death with Dignity”

I have a unique relationship with death. My father was an undertaker, and we lived in an apartment above his business. Contemplating death and dying — my own and others’ — has been a part of my life since childhood. I have sat vigil during the hours and days of the deaths of both of my parents. At the age of 77, I am closing in on my final years. I have no control over when or why I will die; but I am learning about the choices I have about “how”. What I have come to believe is that it doesn’t matter what one believes about an “after-life”; what is important is to live fully while embracing the fact that we, after all, are all “terminal.” Those individuals whose religious beliefs preclude them from participating in such a process can follow the dictates of their religions, but those of us who have different beliefs should be allowed to make our own choices.

The Commonwealth of Massachusetts is once again considering a Death with Dignity bill. Modeled on the Oregon law, H 1991, Compassionate Care for the Terminally Ill Act, would give terminally ill people more freedom, control, and peace of mind at the end of their lives. It is called “The End of Life Options Act”. I noticed that both the Northampton City Council and the Amherst Town Meeting passed resolutions in early November that called on the legislature to enact “The End of Life Options Act” (H1194 and S1225). I urge other municipalities to become familiar with the intent of this bill and take action to lend their support.

Seven out of 10 Americans who support the end-of-life option allowing qualified terminally ill people to end their lives through physician-prescribed medications support having a process to enable terminal patients to choose how they want to die. Such laws have enacted and practiced successfully in other states. I believe this bill has strong safeguards to ensure that no one – including people with disabilities, the frail elderly, and the low-income –could be coerced or pressured to end their lives rather than live longer or seek continued treatment for their terminal illness.

This is NOT assisted suicide, but rather an option to give people the right to choose to end their suffering (and that of their family) when faced with a prolonged and painful dying process.

I support this bill because I have sat by the beds of both parents as they suffered through their last days and hours of pain before death took them. When my father was in the last stages of pancreatic cancer in 1984, thankfully, we were able to use the services of Visiting Nurses (this was before Hospice was available) to give him drops of morphine while he lay in his bed, gasping for air and enduring a level of pain I can’t even imagine. It took him three days to finally die.

My mother, who died at the age of 94 in the “Comfort Care” unit of a hospital, hung on for a week with renal failure, until I finally insisted that the doctor increase her morphine dosage. A “Death with Dignity” Act would have spared both my parents painful deaths that, at that point, were inevitable anyway.

Please join me in contacting the co-chairs of the Joint Public Health Committee:  Sen. Jason Lewis (jason.lewis@masenate.gov, 617-722-1206) and Rep. Kate Hogan (kate.hogan@mahouse.gov, 617-722-2130). Urge them to pass H1194 before the deadline in early February.

For more of my musings about a better way to die, see my blog post: https://www.kalilily.net/2011/10/22/dealing-with-that-disturbing-d-word-being-a-midwife-to-the-dying/

Facing Finalities

I am going to Maine with two friends next week. While there, I am going to put to rest what remains of the guilt and sorrow and regret regarding my relationship with my mother.

The other day I went and spent some time with a good friend, and who is also a healer of souls carrying burdens of regret and guilt. Ed Tick began as my therapist and over these 30 years, that relationship blossomed into a friendship. I still reach out to him when I am troubled, and I visited him earlier this week in his new home not far from where I now live.

The result is that, next week, in Maine, as part of solidifying this new phase of my life on which I have embarked, I will do a ritual to let go of stuff that needs to be freed. I will build a fire, read this last missive to my mom, and then burn the paper. And then burn the triptych with her images — sending her history as a woman to soar with the gulls.

In preparation, I have set up a little altar to honor the good parts of my relationship with my mother, who died five years ago. I have her wedding ring that I put on a chain, and beads from the old red coral necklace (that has been a part of my matriarchal lineage for several generations) that I made into another necklace. I will wear these during the ritual, but, for now, they are a part of the altar. One of the few things I have left of hers is her old statue of Saint Anthony, the heretic converter. I’m sure that she prayed to him all of the time to convert this heretic. It didn’t work, but this icon,one of her favorites, has become mine. Maybe I like him because he holds a lily. And a child. And an open book. In my poetic heresy, I can interpret that any way I like.

altar

So, here is what I will read. And what I will burn. In place of prayer, I write. Here and wherever. Because I can.

If we become the mother
we wanted, our children
grow the roots and wings
of our lost early yearnings,
Our daughters become
the women we wish we were,
our sons the men we dreamed.
But too often we succumb
to the echo of her voice,
caught in the tangle
of a cord never cut.
There is no burying our mothers,
though we lay them deep.
They live in us one way or other,
whether we heed or not.

I am sorry, Mom, that I was not the daughter you wanted. I’m sorry that you were not the mother I wanted. I know that you tried your best to be the best kind of mother that you knew how to be – the kind your mother was. And I did my best to break away from that kind of suffocating tradition.

Yet, despite how I disappointed you over and over, you were always there for me when I needed you. Because that is what the mothers in our family do, And that is how the best parts of you still live on in me – in the kind of mother I have finally become.

I’m sorry that your last years were filled with such turmoil. I wish I had made better choices about how to give you the care you needed. I guess it was my turn to try my best. That was all either of us could ever do.

I’m sorry that your last days were not what you had always hoped they would be – to die at home, in your own bed, with family around you. I did the best I could, Mom. I tried to make sure that you didn’t suffer. Instead, I suffered for you, and that was OK because it meant that in those last days I kept you safe from enduring some unnecessary familial narcissistic tyranny.

There were good times and bad times during the last of the years that we lived together. I like remembering the time we had then to talk and laugh, to dance the polka, to sing all of the old songs, to share our memories of times that were good for us both. I liked that I was finally able to do things for you that you really appreciated, that made you feel good. Because I know there were many other times before that when I made you feel bad.

All of those years as I struggled to grow up, I never really saw you the way that others did. You would have been glad to hear what cousin Cristine wrote to me about you after you died. She said:

I remember the enigmatic smile she always wore, like the one in The Portrait. I never remember her upset or angry. She was always dressed impeccably and I remember her love for Ferragamo shoes. Odd what we remember from our past — the strange minute things that become permanent strong memories and the important things that fade away. I always remember the bathroom at your house on Nepperhan — the l-o-n-g narrow pink bathroom with a door at each end (how cool!) and how it always smelled of green Palmolive soap. I remember your mom cooking and running back and forth to the kitchen and not sitting down and enjoying her own meal.

Someday, I will write a poem about that “enigmatic smile,” which I now think was a biting back of your disappointment and frustration for the parts of your life that you were never allowed to make your own — but I was too wrapped up in my own selfish agendas to realize that.

I don’t know if you were aware of much during your last days, but there was a sea gull who spent most of each day screeching from and pacing on the roof outside the window of your hospital room. This is what I found out about sea gulls:
Sea Gulls are messengers from the gods, especially ancient Celtic deities. They bridge the gap between the living world and the spirit world. Opening yourself to their energy enables you to communicate with the other side. Sea Gull can also give you the ability to soar above your problems and see things from above. Seeing all the different viewpoints.

So tonight I am here at the ocean, communing with the messenger seagulls, sending this message into the wind, into the endless sky: I miss you, mom, I’m glad we had some good last days together, and I wish we had been able to be closer, sooner. I release what is not worth carrying, and I cherish what is left: the comfort that, at the end, we knew how much we loved each other.

an old poem

Every once in a while, I scroll through this blog, re-reading stuff I wrote and forgot. Today I found this short poem.

Some say the world will end in fire,
a sudden spike of life and then the glory.

But for her, it was a slow fall into
the cold of oblivion, the bones of her face
sharding like ice, her fingers blue crystals
clutching frigid white sheets,
sliding toward the final winding.

Had my mother lived, she would have been 99 this month. But it’s good that she didn’t, given her severe dementia at 94. A longer poem I wrote about that has been accepted by Caregiver magazine.

I can’t find my keys

Really, I can’t find my set of keys that hold, not only my car and house keys, but all of those little tags they give you with bar codes that give you special privileges — like discounts at the food market, drugstore, and gas station. It also had my library card on the ring. And a tag that gives my phone number in case the keys are found.

Since I haven’t gotten any calls, I assume that the keys are somewhere in the house. I keep looking. For all I know, they fell into the trash at some point.

There is a place to hang our rings of keys right by the front door when we come in. But I forget to do that.

When I was my mother’s caregiver, and dementia caused her to hide stuff all over the place, I bought a set of key finders and attached them to her keys and her wallet. I would press the remote and the beeping would lead me to the lost article — sometimes tucked in the corner of her pillow case, sometimes in a purse at the bottom of her closet, sometimes under the mattress. Once in the refrigerator.

So I just bought a set of key finders for myself and attached one to my spare set of keys. But I don’t have all of those tags, and now I have to replace them all. I have one “key” finder that can be stuck to the back of something like the tv remote. I think I’ll stick on the back of my iPhone, since that’s the other thing I keep misplacing.

It’s bad enough that, more and more often, I can’t find the word I want to complete my thought. Now it’s my keys that get lost. What’s next? Me?

end of her days

She spends most of her time in a cocoon she makes of my quilt. Sometimes she buries her head; sometimes she stares into space.

I don’t know if it’s her 9th life that she’s nearing the end of; over the past 17 years she certainly has gone through several, including last February, when I (and the vet) thought it might well be her last.

They were are able to diagnose and treat her then for pancreatitis, and she rebounded. But not this time.

The blood and other tests the vet did the other day indicate she’s healthy. Except she’s not. Her x-ray showed some weird pockets of fat where there usually aren’t any. More tests might figure out what that’s all about. But I have decided that there will be no more tests. She’s 17 and has had a good life.

She’s been coming to sit (or get into her “begging” position) at my feet and make strange staccato meows as though she’s trying to tell me something. If I pick her up and put her in my lap, she makes a whining sound low in her throat. If I pet her, she sometimes hisses.

Obviously, something is wrong.

She eats a little. Uses the litter box a little. Sometimes she stops whatever she’s doing and just sits, silent and glassy-eyed, as though introspecting.

So, I’m just giving her “comfort care” until the next stage of whatever is going on inside her. When she becomes “uncomfortable,” I will take the next step and end her days.

She has been my one close and constant companion, has been with me through the deaths of relationships, the deaths of family members. I will do for her what I tried to do for them — the best I can to make the end of her days easier.

Her name is Calli.