The Passing of Edith

Edith fell ill last June both literally and figuratively. She passed away six weeks shy of her 100th birthday. 

I first learned that Edith was in trouble when I got a call from her son, Gene, telling me she had fallen twice. He had found her on the floor the day before and in the bathtub that morning.  He called the medics who took her to the hospital.  All sorts of pictures went through my head about what that looked like. But, I was wrong as Edith patiently explained to me when Ronnie and I visited her in the hospital. She explained it many times. 

It seems she was going to change from her day clothes to her night clothes while sitting on the edge of the tub before falling backwards into the tub.  She then spent the night in the tub before Gene found her the next day. 

In the hospital, I asked her how she felt. “Oh, I feel fine. I don't know why I'm here.”

“You're here because you fell and spent the night in the tub.  Do you remember that?”

“Oh yes, I was quite comfortable.”

“Were you cold?”

“Oh, no. It was very comfortable. I had a pillow,  I was fine.”

Ronnie chimed in, “You had a pillow?  How did that get in there?”

“Well, I don’t know.  Maybe it was a towel but it was very comfortable.  But, I still don’t know why I’m here.”

“It’s because you have pneumonia,” explained Ronnie.

“Well, I don’t feel sick.  I feel just fine.”

“You have at temperature of 101,” I added.

“Oh, I wonder why.”

“Because you have pneumonia.”  Ronnie again.

“Well, how did I get that?”

Ronnie:  “It just happens.”

“I didn’t do anything.”

Ronnie:  “You just get pneumonia.  It’s like getting the cold or the flu.  It just happens.”

Edith pondered, “I wonder how that could be?  How could I have landed in here?”

We both say, “You fell and spent the night in the tub.”

To which Edith responded, “Well, I feel fine.  How long am I going to have to be here?”

Me:  “Until your temperature gets down.”

“I’m ready to go home now.”

Me:  “You’ll have to wait until you are better.”

“Who knew that could happen to me.”  A few minutes pass.  “I just don’t understand why I’m here.”  And, the three of us go patiently around again.

It was the first time I experienced Edith not being on top of things.  Ronnie was exceptionally patient and loving.  

Edith said, “I have to go to the bathroom, but they said I need someone with me.  I don’t know why.”

“I’ll go and get someone,  But, I might have to tell them I’m your daughter.”  Ronnie replied smiling.

“I’d be pleased to have you as my daughter,” Edith stated.  Ronnie was touched by the thought.

On Ronnie’s return, Edith went on.  “Can you tell me why I’m here?”

Ronnie:  “Because you spent the night in the bathtub and have a fever.  Do you remember spending the night in the tub?”

“Oh, yes, I was very comfortable.  But, I was mad at myself for falling and figured I’d just sleep there.”

“Do you think it’s normal to spend the night in the tub?”  Ronnie queried.

“No, I don’t suppose it is.  But, I could have gotten out any time I wanted.  Gene didn’t have to get me out.”

“Oh?  Do you remember Gene had to get John (Edith’s grandson and next door neighbor) to lift you out?”  Ronnie again.

“Oh, yes.  I remember that.  But, the next thing I know I’m here and I don’t know why.  I guess I just keep asking the same question.”

Ronnie responded, “Yes, but that’s okay.  You just ask when you need to, and I’ll keep answering you.”

I marveled at my partner’s patience and kindness.  It wasn’t that I hadn’t seen it before, but it was usually directed to me.  I wasn’t generally able to observe from a distance.

I was texting Edith’s granddaughter, Sarena, who lives in Tennessee.  She was trying to decide when to come.  I said, “You need to come sooner than later.”  I had no idea how much time Edith had.  When she was taken to the hospital, it was discovered she had a grapefruit sized tumor on her back just behind her right shoulder.  No one knew it was there.  It hadn’t been there for her physical eight months prior.  It was cancer, of course, making it’s way internally to her lungs.

Sarena, a massage therapist, was texting me asking if she should cancel her clients for the next day and come as soon as possible.  I didn’t want to be responsible for that.  I told her it would probably be okay to fly out the following day.  I fervently hoped that was the right decision.  It turned out we had a lot more time than I thought.

We came up to Des Moines, well technically Burien, from Olympia several days in a row to see Edith in the hospital.  Two nights later, we came and met Sarena in the hallway.  We hugged like long lost friends.  Sarena was exhausted.  She was staying at Edith’s and spent most of the day and evening at the hospital.

Edith had been living alone in her house since her husband, Wave, passed in 2001.  John lived next door.  Gene and Mary (Gene’s wife) lived two doors down.  Edith prided herself on her ability to care for herself, tend her garden, and freeze and can her crops each fall.  She had told Ronnie and I only a few months before that she wasn’t going to have a garden that year.  She was only going to plant tomatoes and cabbage next to the house.  At the time, Ronnie and I exchanged looks.  We knew it was the beginning of the end.  Was she going to make it to November and her 100th birthday?

Sarena  told us it was so painful to have to tell her Gramma that she wouldn’t be able to go home.  Sarena cried telling us that daily care at home for Edith was too expensive.  It pained her to tell Edith she couldn’t go home.  In the coming days, Sarena, Gene, and Mary worked with the social worker to find a small adult family home (AFH) that Edith could go to.

Still, as Ronnie, and I sat with Edith, she kept asking, “When can I go home?”  If we tried to explain she couldn’t go home, she just said, “I feel just fine.  I can take care of myself.”  It wasn’t true.  We knew it wasn’t true, but it was a truth Edith just couldn’t accept.  

She started on occupational and physical therapy in the hospital.  I thought the mantra should be, “Edith, if you can walk down the hall, get yourself to the bathroom, and make a meal, you can go home.  Do you feel like walking?”

Her response was, “No, not right now, I’m just too tired.”  She wasn’t able to demonstrate her physical capacity but her mind was undeterred.

Sarena, Gene, and Mary found a AFH in Des Moines which was just a mile from Edith’s house.  A younger woman and her sister-in-law ran the home.  There were only six or so beds.  When Edith got settled, Ronnie and I went back to visit.  She was happy to see us.  Then, she wanted to know when she could go home.

Sarena was there looking very tired and stressed.  She met with the social worker and nurse.  But, said she had to go home to be with her husband.  She wasn’t sure if it was okay to leave her Gramma.  No one could answer that.

As is her nature, despite wanting to go home, Edith found the good things about the group home.  She said it was pretty and she liked the people.  She liked the food the woman cooked and thought she was a good cook.  It was good to see her eating.  She had been eating less and less.  I thought that at least during this last phase of her life, she wouldn’t be so lonely. 

While Sarena was still there, she took Edith to the beauty parlor to have her hair done.  It was so familiar to see the lovely cloud of fluffy white hair that Edith always had.

A few weeks later, we came up after Sarena had gone home.  Gene and Mary were meeting with the hospice nurse.  Mary came over to Ronnie and I.  She said, “We talked to Edith.  She doesn’t want anymore treatment.  Just comfort things.  What do you guys think?”

We agreed that was the best thing.  Then, Mary added, “We talked about what to do after she passed.  I wanted to tell you after we went over her list, Edith added, ‘And don’t forget Joceile.’”  Tears were in my eyes.  I thanked her for telling me.

I was so touched to be included, to be important in this woman’s world.  Although, I grew up several doors down from her.  I had never been close to Edith until the last 20 years.  She had taught my mother to sew and watched her grow up.  She was my brother, Zack’s, godmother.  But, I had always been a bit afraid of her.  She was so firm and seemingly unyielding.  

I did not feel warmth from her until in 1998 she took my Granny in to care for her.  Unbeknownst to us, it turned out to be my Granny’s last four days.  But, she died being happily cared for by a relative by marriage.  It was the way of things in farm country where Edith and Granny had grown up in the south.  I saw Edith in a whole new light.  It changed our relationship forever.

I had been calling Edith every week for several years.  We talked about her garden, her children, granddaughters, and great granddaughter, and her favorite TV shows.  Now, calling her became more difficult.  She had been having more difficulty this year following any change in the conversation.  Allowing for transition time, we were able to cover our same old topics.  

At the AFH, she began mostly sitting in a recliner chair.  She stopped watching TV.  She stopped going outside.  One of my topics, things she remembered from long ago were now almost impossible for her to track.  I realized I had asked her all the questions about the past that I was ever going to be able to ask.  There wasn’t much more to talk about except, “Ronnie and I are thinking of you and sending you our love.”  At the end of every conversation, I said, “I love you.”  Her voice would get a softer tone as she said, “Love you too.”  I was afraid for the day she might not be able to give me that response.

I was able to visit her at the AFH a couples times alone.  Ronnie was able to come with me a couple times.  She slept more and more.  She had a hard time following conversations.  After about fifteen minutes, she was too tired to talk.  We sat with her.  “You don’t have to talk, Edith.”  We’ll just eat our lunch.  She struggled to stay awake.

The tumor kept growing at a rapid pace.  Toward the end, it was melon size.  She wasn’t in pain.  She kept saying she was fine even when she had absolutely no inclination to do anything other than sit.  She had some difficulty getting comfortable leaning back in the chair due to the bulk of the tumor.  I never knew when my visit would be the last.  I knew it would come.  

Ronnie always called Edith a Force of Nature.  Strong and independent, she kept living.  Some times, she had trouble choking a bit.  Later, she needed oxygen.  I knew one day I would get the call.

From the outset, I was mostly texting Mary.  Gene wasn’t a good texter.  I would check with Mary for an update.  I had learned from when Edith was in the hospital that she was not a reliable reporter on the state of her health.  Gene would take her to her doctor’s appointments and drive her around.  Mary reported that one day they were going by her house.  Gene asked her if she wanted to stop in.  “No,” she said, “I’m just too tired.”  When I heard that, I knew the end was getting closer.

One night a few weeks ago, I was meditating before I went to sleep.  The meditating guide was telling me to check in with my body from head to toe.  As soon as I started, I was teleported to a place where I felt Edith getting ready to leave.  With my imaginary body, I could feel her leaving.  It was a powerful feeling of her moving out of her body with me as a witness.  It lasted several minutes.  I was surprised.  I doubted I had actually felt the moment of her leaving.  In my heart, I wished her a safe journey.

The next day, I texted Mary asking about Edith’s status.  Mary’s brief reply was, “No change.”  I wasn’t surprised.  Sarena came towards the end of September but didn’t stay very long.  Edith was glad to see her.  Both of them were sorry Sarena couldn’t stay longer.  Ronnie and I made our last visit at the end of September.  Edith was surprised and glad to see us.  But, she simply could not stay awake for more than a few minutes.  I held her hand and sat with her.  As we left, I cried.  It was not because her dying was wrong.  It was the pain of saying good-bye to such a long and later, loving relationship.  

It was the morning of September 28, 2017 that I woke up to the text from Mary that I had been expecting but dreading:

“Hi, Joceile and Ronnie.  Sorry to tell you that Edith passed away at 1:00 this morning.  Her breathing got real bad yesterday.  She went peacefully in her sleep.  Sarena is coming this evening.  Will know more later in the day.”  When Ronnie woke up, I told her.  We sat in stunned silence.  The Force of Nature had passed on.

Edith’s death is the final passing of my grandparent’s generation.  There is no one left who remembers those days before all the children were born.  When Edith and my Granny were young and married to two brothers.  Two brothers from Arkansas who came to Washington to work for Boeing.

A few days later, Mary told me that Sarena wanted to start going through things at Edith’s house.  This was basically the culling of accumulated things from when Edith and Wave moved into the house in 1957.  The year I was born.  Mary texted me, “Is there anything you want to remember her by?”  I responded I was only interested in pictures of Edith, my grandparents, and my mother, father, and brother.  

Later, Mary told me there were a lot of slides because Wave was very into them at the time they were popular.  Having spent my time looking at slides as a kid, I said, “No, thank you.  I’m good.”  If you’ve ever looked at slides one at a time by popping them into a reader with a light, taking a look, popping it out, and then putting in the next one.  You know, life is too short.

A day or so later, I texted Sarena to ask her how it was going.  She responded, “It is strange being here without Gramma.  Finding some interesting things.”

“What kind of interesting things?”

“Oil stock certificates from 1910.  Property deeds from around the same time.  Also a book... How to Attain and Practice the Ideal Sex Life (1940).”

My response was, “No matter how old we are, we all were younger at one time.”

Ronnie’s response was, “Where was that book hiding?”

“In the bottom of Gramma’s dresser drawer.”

Ronnie and I laughed.  Such a tried and true place to hide your secret sex things.  So far, no vibrators.

Later, Sarena, Gene, and Mary, found the attached photo of Edith in her twenties which would have been about 1940 give or take.  In the picture, Edith is holding a guitar and smiling.  It is an Edith I have never seen before.  Both Ronnie and I said, “I didn’t know she played the guitar.”  There is so much I didn’t know about Edith’s life.  I asked her every question I could think of but there will always be the unanswered questions.

The night before she passed, Hugh Hefner’s death was on the news.  He was 91.  The day before that, Ronnie’s 90 year old cousin in Montreal told Ronnie that her best friend from early childhood, Eva who was also 90, passed away from a two year process of cancer.  Ronnie’s family is Jewish.  

Ronnie and I pondered the arrival of Edith, Hugh, and Eva at the gates of heaven.  We figured Eva showed up and they said, “The kosher banquet food is over there.”  Edith showed up and they said, “So, glad to see you.  We’ve been expecting you.”  Hugh showed up and they said pointing, “Take that non-stop elevator down.”

Edith’s other granddaughter and great granddaughter are coming for Edith’s service later this week.  Ronnie and I are not going to make it because we are out of town.  I am clear that nothing I do from here on affects Edith.  My only consolation are those three words she said at the end of her list, “Don’t forget Joceile.”  With those words and her sweet ending to our phone calls, I know she loved me.  

Even Forces of Nature eventually turn to dust.  “I love you, Edith.”  The soft voice answers, “Love you too.”

Joceile

10.5.17

For another Edith story, go to:  joceile7.blogspot.com, “My ‘Aunt’ Edith”

The Case of the Disappearing Table

September 23rd.  It is my grandmother’s 108th birthday.  She has not been here for nearly 20 years.  I miss her.  But, it’s not like she would still be here at 108.  My pain is not about Granny.

My pain is not because I miss her.  The deal is I’m in pain, physical pain.  Pain is wracking my body.  Suddenly, I get teary.  I am nearing the end of my ability to tolerate it tonight.  I say to myself, “Sometimes, it is better to move.”

I think about that, “Yeah, but I never know when that sometime will be.”  I raise up out of the chair and begin moving.  “It probably can’t get any worse.”  I go to see what kind of chores around the house need doing saying the mantra, “It can’t get any worse.”

I made a tactical error today.  It's a Saturday.  I did too much.  I did a little more than two hours of my state job.  I went to dinner at friends’ house, and I went to a reading at a local bookstore. I parked the car two blocks away and had to go up and down a flight of stairs.  By the time I got back to the car, which was painfully slow, my legs were tingling.  The tingling is stunning like I imagine the Aurora Borealis might be if all that energy was placed in one body but not in a good way. 

The tingling when bad enough gives way to pain. Sometimes, too much pain.  Pain that makes me want to do nothing more than curl up in a ball but that doesn't help either.  

On the way home, I said something stupid to my partner. That didn't sit well for either of us. I apologized but I still feel bad. We had ice cream bars when we got home. I laid back in my zero gravity living room chair and read for awhile. But, my hands started hurting and moved from an ache to a sharper pain. Finally, I got to the teary place. 

It does not help for me to want to take out my anger about the pain on myself. I spent decades taking my emotional pain out on my body. It gets me nowhere. It won’t help to take physical pain out on myself that way either.  Now, I just have to wait. To be patient for it to subside. 

Finding a healthy way to express it is causing me to write about it now while I'm teary. At least, someone is listening to me.  I know my partner would happily listen but I have nothing new to say.  After we got home, I told her that my pain level was an eight (out of ten) if it was anything.  What else can I say after that?  There is nothing to do about it but wait for it to subside, for the pain medication to kick in, for tiredness to come which hopefully converts to sleep.  Even fitful sleep is better than what is happening now.

This isn’t new, of course.  It is just one of many no good, very bad moments.  Named after a kid’s book we read when our daughter was small.  The No Good Very Bad Day.  That always seemed like a good way to express the feeling of a bad day.  I thought the fact it was a kid’s book helped us all understand that is just what happens sometimes.  Then, we start over the next day.  Hopefully, with a different outcome.

Ronnie saw me crying.  She asked if there was anything she could do.  “No,” I said.  Then added, “But, actually, I left my tea in the car.  Could you retrieve it?”  Even a small thing seems big.

Recently, I have noticed things when I’m not in pain that are still alarming.  I call it, “The Case of the Disappearing Table.”  I have been dropping things at an increasing rate over the last few years.  This from someone who could always gracefully catch the ball and catch myself in any fall.

I thought I was getting used to dropping things.  I also seem to be unable to hit a garbage can.  Even if I am directly above it, the item invariably takes a turn and drops outside of the can.  Damn.  If I wanted to touch it twice, I wouldn’t be throwing it away.

Anyway, I began to have this experience of putting something on a table or a counter, turning, and having it fall off as though someone pushed it.  I do have the presence of mind to know that is not the case.  So, I tried to observe what exactly was going on.  

It seemed that I could no longer rely on my placement ability.  I was in fact placing things on the edge of flat surfaces.  I was leaving enough of them hanging off that gravity was exuding its force.  I could not take a cauliflower out of the refrigerator, place it on the counter, and turn back to the refrigerator for something else without the cauliflower flinging itself off the counter like it had some kind of death wish.  I now make a serious effort to look at the item’s placement so it does not fall off.

This is a strange occurrence when I have spent the vast majority of my life knowing where my body was in relation to other objects.  I now have to make an effort when going through a doorway, around a corner, or over the lip of the carpet to make sure I do not bump into some inanimate object or trip over some imagined obstacle.  So much for the grace of youth.  My grace is gone, and I mourn it.  This usually means I have a fine selection of bruises over several spots on my body at any one time.  

For several years now, I avoid drinking liquids without a lid.  I grew up a fairly fastidious person.  I don’t like spills.  I don’t like stains on my clothes.  However, it began to be amazing how a gesture would lead to spilled liquid.  Whether at home or work, I have learned it’s just much cleaner to place the lid on the liquid between every sip to ensure it stays safely in its container.

Some moments, I can’t help but wonder where all this is going.  I have been poked, prodded, and tested in a large variety of ways with no clearer picture other than what it is not.  Ronnie and I are now excellent at giving each other basic neurological tests as a result of all this testing.  One day after having another basic neurological assessment by a doctor, I asked Ronnie if I could do one on her.  I was terribly annoyed when she surpassed my own strength and coordination levels.  I didn’t call her a bad name, because I love her.  But, really?

Finally, it’s been several hours now and some pain medication.  The pain is starting to subside.  Along with a bit of conversation and some writing, it's now 11:45 p.m.  I am able to move from that eight out of ten down to a six. As they say, tomorrow is another day.  

I enjoyed what I did today.  Maybe, what I did today had nothing to do with the pain.  No one knows.  Because I am human, I hope that tomorrow will be a better day.  I believe and hope tomorrow can’t be any worse.  But, perhaps, it will be exceptional.  Every now and then, I enjoy my ten minutes of being at peace with the world.  It can happen any time, and I will notice.

L’Chaim.

Joceile

9.23.17

Surviving Bureaucratic Employment: Secrets of a Four Decade State Worker

• Identify who you need on your side.  Know on which side your bread is buttered.  
• Never offend the receptionist or clerical folks. They can make your life a living hell. 
• Always treat kindly those who provide you a service.  You may need that service again.
• Never refuse a request, order, or directive by your supervisor, manager, administrator, deputy assistant director, assistant director, or agency director. 
• Prioritize projects by the management team noted above before all others.  They do your evaluations and assignments.
• Be aware that anyone can become your supervisor one day when you least expect or want it. 
• Don't burn bridges. You may need them to beat a hasty retreat one day. 
• Never send an email containing something you wouldn't want to see on the front page of the paper. 
• Never do anything you don't want to explain on the witness stand. 
• Never leave a voicemail that you don’t want shared.
• Follow the chain of command or the chain will be wrapped around your neck. 
• Never steal anything especially funds. The audits will get you if a coworker doesn’t. 
• If you lie about something and there’s no evidence, don't come clean. It makes it worse.  Don’t make this a habit.
• Conversely, if there's evidence, admit your misremembering quickly. 
• Don't lie. It's too hard to remember what you lied about. 
• Be willing to apologize right away if you screw up.  It makes it look like you are taking responsibility. 
• Don't spread gossip.  Know that people talk and most can’t can keep a secret to save their lives. 
• Keep track of where people get their information, because they are conveying your information by the same route.
• If you want to share something but feel the need to say, “Don’t tell anyone.”  Stop.  Everyone uses that line.  No one can follow it.
• Treat crucial information on a need to know basis.  Never flaunt your knowledge.  It makes you look untrustworthy.
• If you don’t ever want something known, tell no one. I mean, no one!
• Don’t say you give 110%.  It doesn’t exist.  People can only give 100%.
• Proof your work. Mistakes happen. Don’t contribute to them.
• Don’t say you do an excellent job.  If your performance is excellent, it will speak for itself.
• Pay as much attention to what people don’t say as to what they do say.  There’s volumes of information in what’s unsaid.
• Everyone makes mistakes.  Admit it, own it, and move on.  Don’t belabor your mistakes.  They happen to everyone.
• Relationships matter.  All of them.  Customers, coworkers, and managers see what you do and how you do it—always.
• If you dislike someone, don’t let them know.  They’ll never forget it.
• If someone is talking too much, politely excuse yourself to use the restroom.  No one holds that against you.
• Schedule meetings for the least amount of time.  People naturally expand their talking to fit the allotted time.
• Never meet force with force. Take the force directed at you, grab it, and move it in the direction you want it to go.
• Don’t wait for someone else to take charge.  Step up and keep things moving.
• Volunteer wisely.  Take the first easy offer quickly.  It gives the impression you are a team player and will pitch in.  You’ll be able to rotate out first.
• Trouble communicating? Shut up and listen. There’s no better way to discover what’s needed.
• If you have memory problems, never answer a question without checking the file.  It makes you look thorough.
• If you can’t pronounce a word, find another one to do the job.  You don’t want folks thinking you aren’t smart whether you are or not.
• Treat feedback as a recipe for success.  Use it, follow it, and improve from it.
• Don’t make excuses for being late.  Don’t be late.
• When you are sick, call in and simply say you are too sick to come to work.  Your supervisor does not want nor need the details.
• If you find yourself making excuses, re-examine your behavior.  Is this how you want to come across?
• If someone says something mind bogglingly stupid, respond by asking them to explain their thinking.  Don’t tell them it’s mind bogglingly stupid.
• Your reputation is your most important currency.  Spend it wisely.
• Never use your reputation to get someone a job.  They may not hold up their end of the bargain.
• Know your limits and follow them. 
• Stay in your lane!
• Never take a job based on money. You’ll spend a lot of time doing the job. Money doesn't make up for that. 
• Be content with being lower on the totem pole. Those higher up aren’t having a good time either.
• Make your own joy. You’re only limited by your imagination.
• You will always have a boss. Getting to the top doesn't negate that. 
• If you have an issue with your boss, talk to them about it. Don't go over their head. If they weren't interested in hearing it from you, they sure as hell won't like hearing it from their boss. 
• Handling Micro-Managers: Drown them in information, copy them on everything including every email response, letter drafted, report written, accepted meeting, work hours, and arrival/departure times. Don’t make a move without including them until they beg for mercy.  People fail with micro-managers because they fight the sharing of information instead of using it to their advantage.
• There’s nothing wrong with tilting at windmills. But choose them wisely. Pushing bedrock wastes energy.
• Never give bad news or schedule a meeting to give bad news on a Friday. People will worry and get wrapped around the axle with no one to talk to until Monday. It will make things worse.
• When negotiating a solution to a problem, make your pitch on what’s in it for the other party. Self interest is a powerful motivator. Make saying yes a no-brainer. 
• Always under promise and over deliver. Accountability is what builds your reputation.
• Remember, no one cares what you did last week, last month, or last year. What matters is what you can do today. Don’t rest on your laurels.
• If you are going to file a lawsuit or discrimination complaint against your employer, find another job first. No organization you file against will ever have your back or trust you no matter what they say. 
• If offered money to settle a dispute, bump it up 20% and take the money and run.
• Treat everyone how they want to be treated. There's no substitute for success. 
• Dress like you respect yourself. If you don't respect you, nobody else will.
• In the age of video work activities, do not swear, scream, or go to the bathroom without checking, double checking, and triple checking that your camera and mic are off. 
• Cultivate a poker face so others don't know what you are thinking unless you want them to.
• We all need to laugh. Be the comedian but never at the expense of others. Self-deprecating humor is a useful tool. It encourages people to smile when they see you coming—and remember you.
• As long as you designate yourself as the Self-Appointed Morale Officer, you can support people at any level by telling the truth with kindness.
• Remember, the only difference between you and those you serve is luck. You are not superior. 
• Break these rules only with great deliberation.  Don’t be a fool.  Don’t be hasty.  Don’t be predictable.  Don’t leave evidence.  Don’t think you can beat the system.

Author withholding name until retirement date

8.31.17

[Picture of anonymous author with grey hair in blue and white checkered shirt with folded bandana over lower half of face.]

Exceptionally Persistent

I’m a successful survivor of bureaucratic employment.  It hasn’t been easy.  There have been times when I struggled with health.  At one point, I was missing too much work.  I knew my supervisor, who I didn’t care for, was going to get on my case.  What to do?  Strike first, but respectfully.

I wrote her an email, “I wanted to tell you that I am not meeting my personal attendance expectations and missing more work than I would like.  I want to share with you what I am doing to improve my attendance.  I am working on my health with my doctor, trying a new medication, and having weekly therapy appointments.  I wanted to let you know I am aware of my need to improve in this regard.  Thank you.  Joceile”

I stole her thunder.  What was she supposed to say?  By acknowledging the issue first and telling her how I planned to address it, I used my power to address the concern.  She never said a word to me.  My method of taking responsibility and being proactive about my attendance concerns took the wind out of her sails.  Over time, I was able to improve my attendance.

I can’t tell you how many employees who know they are not performing up to expectations just wait for someone else to say something.  They sit at their desk every day hoping today is not the day their supervisor says something about their failing to perform.  Twice at work yesterday, folks came to me about trouble they were having either personally or in their performance.  One said, “I just need to take care of myself.”  

I confirmed, “Absolutely.  If you don’t, nobody else will.  You are in charge.”  If you don’t take care of yourself, who the hell is going to do it for you?  No one.  No one at all.

In another case, the employee said to me, “I got this feedback from my supervisor.”  It was negative feedback.  “I don’t know what to do.  I am so unhappy in my job.  I don’t want to stay here until I retire and die six months later.”

Well, what are YOU going to do about it?  I talked to her about meeting expectations.  I told her expectations are just feedback.  A message of what you need to do differently just like something you would tell a loved one.  “I didn’t like it when you did X.  Please do X differently in the future.”  Ask your supervisor, how am I doing?  Why just dread and wait for them to come to you?

In your relationship, ask your partner, “How do you think we are doing?”  Be prepared to answer the question when they ask you the same.  Reflection has power.  Reflection with someone you have a relationship with is power times two.

She acknowledged she could do those things her supervisor identified differently going forward.  As for her unhappiness, I added, “No one else is going to figure out your Plan B.  No one is going to fix it for you.”  Unfortunately, I have had this conversation once a year for the past five years with this employee.  Sadly, she has been waiting for an opportune time to make something different happen.  I told her, “Thinking there will be a good time to start acting on making a change is a myth.  It’s not going to happen.  If you wait for this crisis to pass, then there will be the next crisis, and the next.  There is no good time to start working on what you want.  It’s like having a bucket list for when you retire.  You may never get there.  Don’t wait.”

She felt better after our talk.  She felt hopeful for a few minutes.  I know from past experience her hopefulness will get crushed once again by daily living.  But, the task is hers.  No one can make her life better than her.  I know that having major Depression gets in the way along with various health conditions that can take it out of you.  But, mostly, it doesn’t get better without my taking action for myself.  

She asked me, “Do you feel hopeless and run down?  I know a lot of other people do.”  She was speaking of state employment.

“No, I don’t.  I’ve been working for the state for 39 years.  I discovered 37 years ago that I needed to work part time.  That has worked for me.  But, I don’t know your path.”  I also know but didn’t say that if you seek out other like minded dissatisfied coworkers you will find them.  Conversely, if I am the light in the employment party, hopeful people will gravitate to me.

There are so many gray areas in life.  But, take stock, are you doing what you need to do to make a change?

Recently, one of my very successful coworkers by most measures said, “That’s the first lie they tell us.  That you will get ahead if you just work hard.”  He’s right, of course.  It is a lie.  But, it doesn’t mean that you can’t take a cold look at your options and figure out your next step.  

He grew up in the inner city.  He figured he had two options:  the military or prison.  He chose the military and survived.  He managed to survive multiple deployments.  He’s here now as living proof of hope.

Another friend grew up poor.  She figured she had three choices:  marriage, the military, or college.  She chose college and made it work.  And, she has to keep working at her dreams every day, year after year.

I have been working with a naturopath for over a year that specializes in psychiatric homeopathy treatment.  It’s definitely made a difference in my nightmares.  But, my mobility issues wax and wane.  I keep working with him because I have faith.  Last week, he told me twice that I was a “Trooper.”  At the time, all I could think of was that I am a really just an idiot.  I just keep banging my head against walls trying to get somewhere better.

My partner, of course, adamantly told me that I am NOT an idiot.  I knew that and thought it worthy of consideration.  So, I thought about it.  No, I’m not an idiot.  But, I decided I am persistent.  Actually, I decided I am Exceptionally Persistent.  

For those of you who watched Star Trek:  The Next Generation, the bad guys said over and over, “Persistance is futile.”  But, they were wrong.  The humans found a chink in the bad guys armor because they were persistent.  

My favorite movie of all time is the The Shawshank Redemption.  I understand about being imprisoned with an evil sadist (my childhood home) and institutionalized (the state hospital at 14).  What the movie resonates with me is hope.  I figure if I am still breathing there is hope.  I refuse to let go of hope.  Hence, being a Trooper.  But, I have to keep a cool eye on likely possibilities.  Hope has to be properly directed.

I’m not saying it’s easy.  I’m not suggesting it works out every time.  But, what are our options?  I’m not interested in just giving up.  I know it’s an option but not one I can live with.  I could have spent my life institutionalized.  But, I chose not to and was able to make it stick.  It was part luck and part determination.

I know fundamentally there are grave injustices in the world and terrible evil.  Many times people, women, children, and men, are assaulted, maimed, and killed as a result of evil.  This makes persistence feel futile.  A lot of people don’t make it and are just mowed down.

However, I feel deep inside that if I am still alive there is still a chance of escape, of healing, of joining with like minded survivors.

I told Ronnie that the Mets were losing as usual.  She said being a Met fan can feel futile.  I thought about it and responded, “The Mets are like me.  Exceptionally persistent.”  Life is not a baseball game.  But, baseball is like life.  Keep hanging in there.  Keep pitching.  Keeping swinging the bat.  You may be a Trooper or an Idiot but it is the only way to get somewhere different than where you are right now.  If you are where you want to be, enjoy it.  Revel in it, because everything is temporary.  Life is in embracing the inevitable change.  Be Exceptionally Persistent.  What other choice do you have?

L’Chaim.

Joceile

8.24.17

[Picture of me at a Mets game with my arms high and spread wide with hope for good things like a Mets win.]

IntermittentBodyCrap.com

Sometimes, when I’m having a tough time with my body, I feel really afraid.  When I have trouble walking.  When turning on a simple lamp switch hurts my fingers.  When buttoning or unbuttoning my pants takes concentration.

To be sure, I have a little pain doing these things most of the time.  But, when I’m really having a tough time walking, balancing, and my legs are hurting and tingling like there is no tomorrow, I feel afraid, sad, and disappointed.

In fact, I feel a little teary just writing these words.  Now, I know historically

I have gotten better many, many times.  But, I’m always afraid that this time it won’t be like that.  This time is the time there is a descent into a permanent hell.  This is the time I won’t get better.  I won’t be able to walk the dog again.  I won’t be able to button my shirt, turn on switches, tie my ties.  (Don’t tell anyone that they’ve been permanently tied for quite sometime now.  I just loosen them and put them over my head.)

I preach mindfulness.  In this case, the mindfulness is not entirely just what I am feeling right now.  To be productive, the mindfulness involves directing my mind to what is working right.  I am breathing in and out.  I am typing and it is not really hurting at the moment.  My toes are still wiggling, even if, it is out of pain.

When I am in a lot of pain, my counselor suggested I focus on a part of my body that is not in pain.  She first said, “Focus on the tip of your nose.”

“No, I don’t want to be thinking about the tip of my nose.”

“Okay then, focus on your hair.  Is your hair hurting?”

I tug at my hair.  “God damn, my hair doesn’t hurt!  Who knew?  My hair doesn’t hurt!”

Sometimes, this kind of thing is helpful.  It mostly just helps for a couple minutes.  But, if I can remember to go back to it from time to time, those minutes can add up.

I also remember that line in “A League of Their Own” when the baseball star says, “I’m quitting.  It’s just too hard.”  Tom Hanks replies, “It’s supposed to be hard.  If it wasn’t hard, everyone would do it.”  

I have to confess that I’m not sure how that applies in my case.  I do think of it as I’m working on my own special hard and not everyone would be up for it.  I remember when I would wake up and couldn’t walk years ago.  I would have a period where I couldn’t move my legs at all.  At that time, I didn’t have a wheelchair.  We would have to go rent one.  It was $30 a month which was a lot of money.  

So, I would wake up needing one unexpectedly.  I would sit on my butt and sort of scootch backwards by using my arms to pick up my torso and move myself across the floor.  One day a friend was visiting, and I was doing this to get to somewhere in the house.  My friend said, “Wow.  I wouldn’t do that.  I would just stay in bed.”

I thought, “How in the hell would that help me?  Where would I get just staying in bed and waiting?”

During that period, I finally asked my doctor if I could just have a prescription for a wheelchair for a year so I wouldn’t have to go keep renting one.  My doctor put in an order.  I was at home when the wheelchair was delivered.  The guy showed me how to work it, and it was fitted to me.  To my absolute HORROR, he told me it was mine to keep and not a rental.  I had pondered how to decide when to get my own wheelchair.  Something I never wanted to have to decide.  Yet, someone had made the decision for me.  It was cheaper for my medical insurance to just buy one rather than rent one for a year.  Convenient but a terrible thing to have to need in my mind at the time.

I’ve had to put a lot of work into seeing the wheelchair as just a tool.  That it’s not something about ME.  It is just a tool that I need to use from time to time.  To hell with anyone who doesn’t get that.

Back to where I am today.  I try to avoid using the wheelchair whenever possible.  It’s not because it’s inconvenient which it is.  It is rather that my arms, hands, and shoulders don’t have the strength to just keep pushing unlike when I was younger.  Crap.  What an outcome.  So, I walk as much and as hard as it is.  Sitting in a wheelchair can also get damn uncomfortable which is like being trapped in the middle seat on an airplane.

Last night, I was watching a show about service dogs being matched to all kinds of people and kids with disabilities.  Suddenly, I felt as one of them.  Fortunately, I already have a fine companion dog.  But, Sheba can’t go in public with me because she gets freaked out.  She is an extremely loving, fairly well trained dog.  But, as a rescue dog, she has her own special needs.

I’m going to a Mets vs. Mariners baseball game in a couple weeks.  I will have to use the wheelchair but someone will push me.  I am terrified of needing a wheelchair and not being able to push myself.  I know what that could lead to.  Please god, could I never have to use an electric wheelchair?  I just don’t want one.

As a kid, for some reason that completely baffles me, I thought using a wheelchair would be cool.  Obviously, I never hung out without someone who actually used a wheelchair.  It would have cleared up my fantasy real fast.

There have been moments when I had to go up a hill and was alone.  I would push a few feet, take a break, and push a few feet more.  One time, a guy came up to me.  He said, “Can I give you a push?”  

These are the moments when I have to swallow my pride and be honest with myself and him.  “Yes, that would be great.  Thank you.”

He said, “I’ve watched you go up this hill before and marveled at your ability to just keep plugging away.  I thought you might like help.”

Boy, was he right.  “Thank you so much.  I appreciate it.”

Another time, I was in Seattle for work.  I parked my 1969 Mustang up a bit of a hill.  I knew going to the worksite would be easy down hill.  But, coming back, not so much.  On my way back, there was a guy sitting on a little wall.  He looked strong and homeless.  I proposed, “Hi.  Will you push me up the hill to my car for a dollar?”  He said sure and pushed me up to my car.

He pushed me up to the Mustang and said, “Is this your car,” with a little bit of awe.  I thought he was thinking folks in wheelchairs might not have cool cars.  I felt bad about it in that moment because he needed money.  

I handed over the dollar and responded, “Yeah.”  

“Cool car,” he said.  It caused me to have a new thought about street folks.  I had money and could spend it anyway I want.  I realized I had no right to tell him how to spend his money just because he didn’t have any.  I changed my belief system at that moment about homeless people’s right to spend their money how they want.  But, I’ve gotten off track here.

We remodeled our house with disability in mind.  We installed big flat light switch plates, pulls with handles, and a walk-in tub which I use daily for a hand held shower.  It was in preparation for a lifestyle that I hope will never come.  

I work at a job that is accessible.  I can also telework fairly easily and still meet my customers’ needs.  But, I want to keep walking.  I want to walk the dog.  At times like this, I see people walking and moving comfortably on the sidewalks, and I hate them.  No offense, but that line, you don’t know what you have until you loose it is so damn true.  

Today, I’m working on being nice to myself and trying not to get ahead of myself.  I just need to do the next thing.  I don’t have to figure out tomorrow or what next week will be like.  I just need to notice where I am right now and figure out the next thing.

I’m thinking about starting a website called IntermittentBodyCrap.com.  But, at least in this moment, I can truly say that my hair doesn’t hurt.

L’Chaim.

Joceile

7.15.17

Picture:  My Granny, Lucille, and I.  Circa 1992

For more stories, go to:  joceile7.blogspot.com

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