Category Archives: blogging

The struggle to be heard.

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To be “heard” is to be visible, to be acknowledged as valued and appreciated.

Today is the 55th birthday of my incredibly articulate late-diagnosed autistic son.  Today he posted about marking the completion of his having to date traveled 32,120,000,000 miles around the sun.

His writing is thoughtful, moving, honest. But between his autism and what looks like is going to be diagnosed as a bad case of Chronic Fatigue Syndrome, the only place he can hope to be heard is over the internet. He really needs to write his autobiography, but that’s a challenge I don’t think he can find the “spoons” to master.
He  ends his post with this final poignant statement:

Thirty-two trillion miles is a long way to travel, and that doesn’t even include the miles accounted for by Earth’s rotation, let alone the rotation of our solar system around the galactic focus. That’s a lot of mileage I’ll be accruing even as my autistic and myalgic fatigue increasingly keeps me confined within a one-mile radius here in downtown St. Johns.

The passage of every mile, be it on foot or on orbit, subtracts a portion of life. I’ve already traveled a considerable portion of the way toward my death, and now I’m closing in on the reality that I mostly will move only as the planet carries me around the sun. So, then, maybe all of this is why I’m here, once again writing into the great and yawning abyss of the web: as my real geographies contract, perhaps I’m reaching—flailing, really—toward those ethereal, untouchable geographies.

For now, anyway. Until I quit on it again, or everything else up and quits on me. Which, at some point, it will, and must. As it will, and must,  for everyone.

So it goes.

Here we go again.

Happy Birthday, Bix. I wish I had the magic that could take away your pain –existential and otherwise.

It might be me.

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I’ve been searching to find out who might be the oldest continuing personal blogger in the U.S.  Not a blogger who hawks services or products or is any kind of influencer.  Rather, a female blogger who posts about her life and times.  My search has yielded no information. I have been blogging since 2001, starting at kalilily.blogspot.com.   Is there any woman out there older than I (84) doing the same thing?

Back in December of 2001, I blogged about why  I started to blog.  It’s worth reprising here:

So, there are some discussions going these days on about the purpose and value of weblogs. Oddly enough, the other night at my bi-monthly group meeting, I mentioned that I had begun a weblog, and I was asked to explain what that was and why I was doing it, and why I just wasn’t keeping a journal. As I’ve said, I’ve unsuccessfully tried keeping journals before and I write so much slower than I think that I got frustrated and quit. I can type almost as fast as I think (I got used to doing that at the job from which I retired last year, which involved mostly whipping out quick documents for others to share and claim as their own.) So, it’s easier to do it on the computer. And why don’t I just keep a journal on disk, I was asked. The truth is, I admitted, is that I’m used to writing for an audience. And I like having an audience. Even my poems are usually written with an audience (sometimes of one) in mind. It’s why I ballroom dance. I’m a performer at heart. I need ways to say to the world: this is who I am. Look at me. Pay attention. It seems to me that that’s at the heart of why everyone else who keeps a blog does so. In a world where we all have to live up to expectations and assume roles for survival purposes (our own and others) — caregiver, mother, employee, citizen — it’s so satisfying to have a place where one can BE who one is. Or in some cases, where one can BE who one wants to BE. It really doesn’t matter. We can create who we want to be or be creative with who we are. Either way, one has an identity, a voice. In a way, it’s kind of a new art form — or at least it can evolve in some cases into such. How cool is that!

 

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My son Bix tells me that blogs are back.  This blog never really went away; I just did.

The odd combination depression and the peculiarities of my personality negated any effort at creativity.  I just wanted to sleep; nothing caught my fancy.  But ending my brief (1 1/2 years) relationship and getting on more effective meds did the trick.  (I think that he ultimately hoped for companionship, while I hoped only for a final romantic adventure.  We were both disappointed).

But now blogging is back, my son says.  And because mine has never gone away, many of  my posts still get read when somebody googles a topic about which I posted.  For example, my son recently posted this:

Tfw you’re googling for what was in the Greedy Bastard at Mad Dog in the Fog and on the first page of results is a blog post by my mom referencing one of my own where I talk about heading down to an antiwar protest that I have no memory of attending.

That referenced post of mine was from October 2002.  Yup.  Once something can be caught by google, it’s there for eternity. It’s one way of getting a feeling of leaving some kind of legacy, I guess.

It’s almost October, and if I look back in this blog, I find that October is when I come to life creatively.  I am looking back on my life in general quite a bit these days — finally recognizing the times that I was my own worst enemy.

There is much to write about these days.  I wish it were 20 years ago and I could be back with those folks in the old blogging community and get into those ongoing conversations we would have about life, the universe, and everything.

But that’s OK.  I’ll just continue here anyway, because when I talk to myself, I tell the truth.

 

Like Lazarus

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Like Lazarus, this personal blog periodically comes back to life. This time in the midst of major world crises — war and death, planetary destruction, political insanity.

I am feeling lost in the middle of all of this — tired, unconnected, useless.  The tiredness is overwhelming.  Nothing inspires me.  So I sit down to write to try to tap into that place deep within me where there must still be signs of life.  It takes an effort just to do that much.

I  continue to struggle with the inability to fall asleep.  A combination of Abilify and Melatonin seems to have begun working.  Time will tell.  The Abilify was prescribed (added to my depressive meds) because last year I was diagnosed with Bipolar 2, which means, while I don’t get manic, I do have periods of significant mood swings that affect my life.

But I am still tired during the day, and nothing seems to pique my interest — no crafts, no projects…  I only occasionally leave the house.  It doesn’t help that the magnificent maple tree outside my window is intently shedding dry brown leaves instead of turning its usual Autumn color palette. The brittle leaves are piling up in inches-thick mounds.

Notice that none of my neighbors have leaves in their yards.  It must annoy them to have the breezes send some of ours onto their well-manicured lawns.  My son-in-law usually mows the fallen leaves into mulch as the season progresses, but this pile-up is overwhelming.  When he has time, he will figure out what to do with them.

I have plenty of time, but I can’t seem to figure out what I want to do.  I check the calendar my senior center and circle programs to consider.  But all I do is consider.

The one thing that keeps me going is my relationship with the man to whom Match.com accidentally sent me, even though I canceled my subscription years ago.  The same age as I am, and a fellow Pisces, he amazes me with his perseverance and positive attitude. We both struggle with health issues (I had my right knee replaced last June), and we live an hour’s drive apart. So getting together can be a challenge, but we manage.  And having lunch every other Friday with him and his sister is also an incentive.

I saw something on the senior center page that I am considering.  They are looking for town residents to help “build an age-friendly community….help shape the future of an Age and Dementia Friendly East Longmeadow”.  Well, I sure know about age and dementia, and I sure would like to become part of some community.

Meanwhile, the poor Palistinian people are being annihilated.  Where is there justice in all of this? Gaza is about the size of Philadelphia; Israel in a little smaller than Massachusetts, but has a strong military.  Although Israel is fighting Hamas, it is killing  ordinary Palistinians who  have nothing to do with Hamas. Looks like David and Goliath, and Goliath is going to win. Why isn’t neighboring Egypt offering to take Palistinian refugees, who are caught in a cage with no way out?  Gaza and the innocent people in it are fodder. And America is backing Goliath.  At least, why aren’t we working with Egypt to rescue the women and children of Gaza?

 

Dooce is Dead

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“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.

Buddha and The Babe

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This is part of my altar that features a Laughing Buddha and the Venus of Willendorf.

Buddha and The Babe

The body parts of the ancient female figure are exaggerated, and many scholars believe that figures such as this one were considered fertility goddesses.

Abundance, luxuriousness, and productiveness are all considered synonyms for “fertility”, all of which relate to the attributes applied to both icons. The gifts that these symbols represent are very similar:  the comfort, security, and stability of having more than “enough.”

It is what we all want, yet millions of humans around the world have barely enough.  Five years ago, a study reported that 40% of Americans do not have enough resources for the basic necessities of food, clothing, and shelter.  Researchers state that, although economic growth and low unemployment are “critical to reducing material hardship,” they “alone do not ensure everyone can meet their basic needs.”

An article on the Santa  Clara website by Joseph Westfall,  a research assistant at the Markkula Center for Applied Ethics, offers a cogent argument for Social Welfare.  He begins with this:

When Congress and the president negotiated over welfare reform in 1996, a key element of the debate was whether government aid should continue to be an entitlement, a grant the poor receive solely by virtue of being poor.

Ultimately, the bill that passed last August changed welfare from an entitlement to a block-grant program for states; states are now free to set their own eligibility criteria and may limit access to welfare in various ways, including limits on the length of time a family may receive assistance.

Still, the basic ethical issues behind the debate persist. Is society responsible for the well-being of the poor? If so, at what cost to the rest of the community? Are the poor to be held in any way responsible for themselves? How far must poverty go before society is morally bound to act?

He cites philosopher  Peter Singer, who  writes, “[I]f it is in our power to prevent something bad from happening, without thereby sacrificing anything of comparable moral importance, we ought, morally, to do it.” For Singer, social welfare is not only a “good thing to do,” it is a moral imperative.

Beef up your argument for Social Welfare by reading Westfall’s article.

And take a look at my son, Bix’s blog post responding to Biden’s statement where the President refers to the necessity and dignity of having a “job”: “It’s about being able to look your kid in the eye and say, ‘Honey, it’s going to be OK,’ and mean it.”

Bix, who calls himself a Mediocre Autistic, has this to say:

You know what else would let people look their kid in the eye and say this? Universal basic income. Medicare For All. Orienting our society around social welfare rather than the scarcity lie of extractive capital.

My dignity is inherent. I’m born with it. So are you. Biden, as I said, would scoff at a suggestion that he doesn’t believe this; no doubt he’d call the charge “malarkey”.

But there’s only one way to read a statement like “a job is about your dignity”, and if it isn’t what he means, then he should say what he means and mean what he says, because saying what he did serves only to lessen the lives of those who can’t work.

 

 

Getting Back in the Personal Blog Saddle

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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.

 

 

It’s All Going to Hell

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It has been  three months since my last post.  I have spent these months searching for medical help with my Delayed Sleep Phase Disorder. None of the so-called “sleep” doctors I’ve been to ever mentioned the possibility of DSPD.   In desperation, I just sent an email out to a neuropsychologist because the stress has affected my usually-easy-going temperament, and I don’t even like myself any more.

Also, during these few months, the family brought a rescue dog home.  He was smart, sweet, and cute, but he would not stop biting when playing.  He went back to the rescue.  So, last week, they brought home a cute, sweet, gentle rescue kitten, who is still sequestered in the upstairs bedrooms because their current prissy cat refuses to have any of it.

My plans, after the holidays, is to go the shelter and get a senior cat who just wants to snuggle. I need the companionship.  I need the touching.

I need to find a way out of his personal sleep hell. It has affected my digestion, because when I eat depends on when I sleep.  When should I take my meds?  I often don’t even know what day it is.  It’s making me crazy.

ADDENDUM:  My daughter just told me that when I got home from the store yesterday, I left my car running in the driveway.  It’s a good thing my grandson noticed the car’s lights were on.  I am definitely losing it, fast.

09/18/2020, 7:45 PM

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I never worried about getting old. I figured that I would deal with it when it happened. Well, it happened, and I’m not dealing with it very well these days. Objects seem to fly out of my grasp. I’m constantly misplacing things. If I get down, I can’t get up without help. I trip when there’s nothing there to trip on. The technology that I used to use without a second thought now requires too much figuring out. It doesn’t help that, back in March, I accidentally sent my removable partial denture down the garbage disposal, making it unusable, and it’s taking forever to get a new one. I lose track of my finances and find myself owing more than I thought. My crazy sleep pattern doesn’t help, of course.

It wouldn’t have helped if I had worried about getting old before it happened. There’s no way to have known what it was going to mean for me. Everyone is different. My mother lived until she was 94, but her last 10 years were lost in dementia.

I wonder who those old people are who go out dancing, marathon running, paddling canoes. Of course, I’m assuming the Pandemic has put the kibosh on all of that now — unless they are the deniers. Good luck to them, I say.

I finally let my hair go gray more than a decade ago, and I was very happy with it. Only now, my hair is thinning. Not so happy, now.

The other day I took a magnifying mirror outside so I could see my eyebrows, which are also thinning – except for the long wiry white ones, which I plucked out. I suppose I could get one of those eyebrow stencils, that so many of the folks on tv seems to be using, but I think they look horrible. Not many choices here for me.

Over on Ronni Bennett’s blog, she has been chronicling what it’s like to get older. Exactly my age, she is now chronicling how she is dealing with the pancreatic cancer that is literally killing her. She is heroic in dealing with her situation. I wonder how I would handle it.

Don’t get me wrong. I am grateful that I can still drive, blog, see the tv, chat on the phone with the one close friend I’ve been able to make in the ten years since I’ve moved here (more on that another time). Grateful for the support of my family, especially during this time of quarantine.

The one thing I certainly never expected to happen when I got old is the Great Orange Turd, who has made all of our lives a nightmare. And I just heard that Ruth Bader Ginsberg has died. Fuck it all.