Passionately imperfect

Being alone in a pandemic while struggling with a neuromuscular disease in a disordered,declining town I have been upset and frustrated constantly. I have gone down the “What if” rabbit hole, convinced if I had made different, better choices my life would have been more productive, peaceful, more secure… better.

I have rolled it back to 1997 and considered the choices I made up til then and if I hadn’t moved in the direction I did. There are lots of people I wouldn’t have met. I was still restless, and scared… something had to change, I had to try for my dreams. Oh, but the pain and financial hits I endured, maybe that wasn’t the pivot.

I rolled back to 1991 and found stability but I wasn’t happy in the city. My son wasn’t safe, didn’t know his father,I felt trapped in an unstable relationship or trapped in a city that felt stifling in stability.

I rolled back to 1989 when I thought it was too risky to move to Finland in a small town to be with a man I met on a weekend and give up my life in the US. So scary, so insane, so exciting, so far past my comfort zone I couldn’t do it.

Today it occurred to me to look up a man I met only once but he made his intentions very clear. He was a pastor, I was only 22 and he really scared me, I could see only darkness and loneliness. It would have been safe, secure, predictable. It would have made my mother happy to brag about. It was at this moment I jumped into the ocean of life knowing his life was not mine. I found he died last year, 32 yrs in the same place, never married,no kids.

I have to accept what my life became, a wildly colored adventure of lovers, animals, kids, travel, illness, injustice, heartbreak. It really hasn’t been easy or always fun and often I felt unprepared but I learned so very much being passionately imperfect.


When raising kids, or training dogs it is imperative they experience the consequences of their actions. Biting means isolation, stealing means restitution, isolation and a lecture. It is never fun to watch for bad behavior then give immediate consequences. There are usually dozens of things that also need to be done and then there is the fatigue.

I know any time I let something slide whether intentionally or not, things only got worse. Candy was hoarded and gorged before meals, another theft discovered, dog charged out the door at an even worse time and invariably I was more exhausted.

This month we have a toddler in chief who has not learned from verbal correction or attempted impeachment and still yells he is not responsible. The problem now is 3,000 or more are dying daily from an illness he didn’t want to deal with, the election did not go his way, he was thwarted in his attempt to overthrow Congress and refuses to understand how impeachment works and what it means. He has brought shame to the whole country but feels no personal consequences.

There are some who are adult enough to see we need to attend to the life threatening , the momentous things and feel too overwhelmed to give the immediate consequences, proposing to wait a while. They are elected adults but I doubt they have raised children. To keep peace, to grow responsible behavior, there must be swift, sure, impactful consequences to actions. Apparently even with geriatric toddlers.

Up in the air

Covid -19 infection rates are soaring across the country with hospitals concerned about being short of staff so “allowing ” nurses who test positive to continue to work. How this will affect their health, no one knows. How the hospitals wll survive economically, no one knows. How we move forward without 247,000 already dead? How long will the deathrate hold at 1,000 people a day across the country? What will happen to the people who had severe complications? Will more than a few have a second infection? How bad can it be the next time? Will the vaccines actually be safe?

And still, I hear from former friends that this is all a hoax, some sort of planned reset. Their concern is the economy, the nonessential job their kid lost, the inconvenience to travel and tradition. What I don’t understand is how it can be both a hoax and some sort of intricate plan. How can science be ignored because one doesn’t see a body they know? How can I make them understand when they see a well loved dead body, it will be too late for them?

the value of little things

Today I woke on sundried sheets with an odd feeling of optimism. It is the simple things that make us feel the best after horrible,very bad times. We certainly have had enough ,horrible ,very bad.

I see Joe Biden as the safety pin that floats around the bottom of my purse. It gets transferred each new purse, isn’t pretty, isn’t new but always moves forward and waits to serve.

This year a fool has gotten hold of our carefully knitted , intricately patterned democracy and dropped many stitches running them back many rows. It is a mess. It is discouraging. But when you catch the dropped stitches , put them on that safety pin and patiently work restoration with the crochet hook of unity, all can be restored. It all starts with stopping the destruction, holding the line. It isn’t easy, sexy and there are often twisted stitches that must be redone more than once.

It is easy to glibly destroy what was carefully wrought , tempered, grown into our democracy. Trashing something takes no skill, artistry. The horrible responsibility of stopping death, destruction is daunting enough but to repair amid the scrutiny of little minds with big mouths… I couldn’t do it.

Still I am grateful to Joe Biden for being the safety pin in this time of historic need.

Time keeps on slipping…

I fell into bed exhausted at 7pm. Woke at 11pm uneasy, sort of hungry and sticking my toe out of the covers it was licked by a very awake dog. Riley, awake and not monitored tends to make for disasters. After a bit I got up and did the dishes hoping hot water and productivity would soothe more than the cup of eggnog.

Riley made me take him out and hear the silence ,save for distant tires on the interstate, see twinkling stars and bright high moon through leaves falling silently only disturbed by a black cat bounding through. Somewhere there had been an electrical fire and the smell hangs in the warm humid night. The pigeon loft rouses with a chorus of cooing and settles back to sleep assured everything is ok. Big dog is snoring in the recliner despite my being awake, I have a feeling he will demand normal schedule be kept later in the day, no exception.

You tube movies only partially numb my brain. My heart is aching for my kids wondering if they are ok. Covid infection rates are going up as are hospitalizations and neither have health insurance but both have been drilled on good health practices all their lives. I wanted to make the world so good for them, just, safe, healthy, secure and the last week has shown it to be anything but. I feel like I should have been able to prevent, or stop some of it. Letters, calls, voting,research, personal action and we are still in a complicated, deadly mess where so many children are growing to be parents of hopelessness.

So like the clock on the wall, everything is cockeyed tonight. I can right the clock but not the times.

Broken but not useless

Many years ago I had a gorgeous Cambodian foster daughter. She taught me so much about resilience in a short time. Seek beauty even if it isn’t practical. Mistakes are not fatal but not trying is. There is always someone who has less, someone who needs you. Most importantly broken is not useless.

I had a one cup pyrex measuring cup, nearly new when she broke the handle off in some long forgotten way. I was mad. In my defense I was 25 and every penny hard won, I thought she was careless. She calmly pointed out it still worked perfectly and a potholder made it good for hot things. Immediately I felt foolish because ,of course, she was right.

Twenty-five years later that measuring cup just shattered into bits, finally worn out. I replaced it with a second hand 4 cup pyrex measuring cup with a chip on the rim. I chose this because again money is a huge issue but mostly to remind myself to accept imperfection. This has been increasingly hard the last few years as weakness, fatigue and loss of balance and endurance are my invisible chip. I realized recently that it is I who have deemed myself useless compared to what I used to do, what I wanted to do.

I can’t deny the strong resentment I have around these limitations. That will never melt into some peaceful acceptance. Frustration looks to be permanent but not crippling if I can fix just what must be fixed,even if in very small bits, break dreams into smaller parts, enjoy what I have knowing others have so very much less.

Find the beauty.

17 days til election day

So many countdowns in my head. And yet someone asked me why I fixate on integrity. I spent a good bit of time trying to figure how to convey how a concept, a trait can be the glue that holds you together, the guiding star you aspire towards. Couldn’t make a good elevator pitch but kept coming back to the point that integrity is part of you or it isn’t and I can’t change either position.

Three days til I find out the results of the last muscle biopsy and find out how I will live the rest of my life. What do I spend my money and energy on? Where do I go? How long do I have ?? Who can I count on, who needs to go one without me? Nothing important besides the core integrity of my life.

Seventeen days til election day and we find out who will represent our country and lead it back to health.

Thirtynine days until Thanksgiving day. The day when families used to gather to eat and visit while playing football or watching it. A day of ambivalence that has been cherished even while traveling frayed nerves and diets are forgotten. A day that launches the race to the next milestone of the year with a parade.

Sixtyeight days until Christmas. The day families used to gather and exchange gifts so everyone was in debt and puzzling what to do with the gifts they hate. Decorations turn every house and yard into something else… elegant or hideous in the eyes of the beholder who cruises through neighborhoods with kids to see the sights, hear carols, feel joy.

Seventyfive days til whoever survives this year can scream Happy New Year! A day of planning how to make the next year better, how we can be better people, a day of relief and rest for most.

But this year each milestone day is buried under the fear of illness, sadness of death, debt, insecurity, and isolation. Soul sucking, life protecting isolation, the hated necessary task of every person, every day. Too many of us know that the hard things of this year will not disappear quickly, traditional celebrations will be very different this year and perhaps for years to come.

The time is here now, decide who we are at the core, what we want to be moving forward so that no matter what we are living through when each of these days come we mark it with joy and hope.

Just a drink of cool,clear water

Taking things for granted is not something I did.  I  know how much of the world does without the most basic things like clean drinking water. Then in the course of 2 days I was put to the test .

They are doing work on my street , long, long overdue work. But this messed with the waterlines so boil order was issued. I was so grateful to get the notice as in TX they don’t give notice, the pressure just drops by half, or dirt comes through the lines and I boiled big pots while calling water company and hearing their surprised voices at the issue.

This reminded me how grateful  I am not to have arsenic contaminated water as in TX, lead as in Flint, MI, or whatever was in Grand Island NY.  I thought about all the people drawing spring, river water who don’t boil it , living and dying with waterborne illnesses. I thought about the rivers that are in danger of pollution from flooding in Michigan, coal ash seepage down the road, fracking in Oklahoma, field runoff all over, and I wanted to fight harder for clean water. Then I told myself, I am so lucky.

The next day, while drawing a big pot to boil,having the jug yet to fill for hand washing, the water stopped suddenly and completely. I went outside and asked the water company guy on site when I would have water back. I was met with a puzzled look as he said I had water. No was my reply. He pointed to the valve he’d shut and said that was all he had done. And it turned off my water was my reply. In minutes I had water back to fill all the vessels, get clothes started in the washer and it was off again.

I thought about the Indian Reservations where generations have lived without running water even to this day. I understood previously what inconvenience that must be but this day I felt the pressure of the inability to wash clothes or dishes, insecurity about how to make the water I had last since there was no place to go to get more. I thought about the Rohinga refugees living in tents, all about their lives uncertain including this basic thing. How is this possible in this world? And I was getting very tired physically and emotionally.

A few hours later I turned on the tap to see… brown water coming out and it wasn’t clearing. Put some in a jug and went out to the water guy noting the water was the exact same color as the dirt around the valve. He grimaced and said he could flush the main when the guys down the street got out of the way. OK.

I came back in remembering how people in Puerto Rico were collecting ground water after the hurricane, the bottled water sitting unused for a year on a tarmac. How in the midst of this pandemic many people all over the world are fighting illness, poverty, natural disasters and this brown water would be completely acceptable to them.

A few hours later, the truck had moved so I checked the water. It hissed, sprayed, thumped with the air in the pipes to every faucet and turned brown to beige to clear with steady pressure. The next day I got a text message saying boil order was now lifted and sighed while giving thanks.

Each day put some number of us closer to death, homelessness, food insecurity, lack of water, crushing depression, financial insolvency. The pressure of all these things makes a simple boil order feel so much more than it would have been a year ago.

It feels hopeless

Conflict and insult at every turn at every level is really wearing on me. I assume it is the same for everyone but don’t talk to people. Any conversation risks debate on my perceived white privilege, tRump, the reality of Covid-19, pushing through fatigue or some other thing that wears me out.

People on the autistic spectrum feel things though they seldom express it at the time. The more frustrated they become, the more they stuff the feelings they don’t know how to process. It can result in explosion or implosions and sometimes one right after the other. This time is a minefield for them.

As the mom of someone struggling with all the above while dealing with a muscle disease and stupid people across the alley, I feel overwhelmed.

Wholeness, integrity feels so foreign in every area of life, living is just a slog through  the impossible thorny thicket of time.

Living under this administration is like typing with a cat on your lap

IMG_20200730_123229643The cat on my lap is shoving her head into my left hand and intermittently whacking the keyboard with her paw. The result is not what I intend and she has made things happen I don’t know how to do, let alone undo. She is resolute my lap is where she will be and her claws are no match for this dress. I have the scabs to prove it.

All this also applies to 45 whom I having an increasingly hard time to think about without strong , explicit language.

In the last week 45 has said things that rival what a cat paw does on my keyboard: nonsense. He has stuck his ugly orange head where the experts should be howling like this 12 yo confused cat. 45 and his obnoxious sharpie  are interfering with testing, peaceful protests, data gathering in a pandemic and clear decision making for schools. His demands for attention and pettage have a time and place but this is not it.

Fortunately, the old cat is sensible enough to know when she should go curl up on the bed. Sadly, 45 does not have that sense, so we will struggle on with the wounds of jobs,health insurance loss, illness, death, uncertainty of weather encumbered by a yowling old orange thing who thinks everyone should love him.

45 has chosen his own adjectives, “sad” “disgrace”.