Why Would I Reboot?

I have been thinking about what makes a person get through life to a better place.  I think of it as rebooting.

I started my employment with the state of Washington on April 10, 1978.  I made $513 per month as a file clerk for the Department of Labor & Industries.  I had moved to Olympia and been unemployed for three months and was in terrible need of a job.

Previously, I had been a clerk typist with two different private insurance companies.  I didn’t mind being a file clerk.  There were tens of thousands of files for employers in the state of Washington.  Each employer filed a quarterly report, and we file clerks filed them.

Sometimes, we got fabulously behind.  The eternal pull of not enough staff and too much work in government caused us to have mountains of reports needing to be filed.  We would sit at desks pushed together and sort quarterly reports by six to eight inch stacks by their six digit numbers.  We set them out in ten piles by the first digit, picked them up in number order, and laid them out by the second digit, repeating the process until we had gone through all six digits.

It was a time when there was still smoking at the desks.  It was common place and accepted that we engaged in verbal harassment by gender, religion, politics, and whatever else came out of our very bored minds.  None of us knew anything about laws against discrimination.

We knew too much about each other’s personal business.  There was one guy I remember for whom no topic and razzing was out of bounds.  I called him “Rotten Roddy.”  He delighted in poking people in places where they were most vulnerable.  The work we were doing was painfully mind numbing.  We were just trying to get through the day.

One day, I looked at all those files and said to myself, “Well, this isn’t going to keep me out of the mental hospital.”  I tried to think of what my options were.

I put myself on the hiring register for a clerk typist job.  I got hired just a couple units over and was tied to a desk.  I couldn’t play or joke.  It was way too serious for me.  I talked to my old file clerk boss and told her I was really depressed.  She told me I could come back.  So, I decided to voluntarily demote.  I made a lot more money as a clerk typist 3 but hating the job wasn’t worth it to me.  I know I was supposed to hate being a file clerk, but I could get up and move around make jokes and tell stories.

Sometime, in my second year of full time file clerking, I learned about tandem employment.  It was where you shared a job with someone fifty fifty.  I knew filing could be easily accomplished by two people in a week.  I started lobbying my management to allow me to job share so I could go to college.

I set a date to begin in July 1980 so they could hire someone in time for me to start school in September.  In typical management fashion, they put me off by telling me they weren’t sure.  But, I kept coming back with, “When can we start?”  Finally, in July, it was approved, and they recruited for the other half of my job.  When someone was hired, I started making $268 per month now working half time.  

I worked eight hours on Monday and Tuesday and a half day on Wednesday.  I had to learn to live on less money.  I moved from my apartment and in with roommates.  It was a lot less money but working half time was so much easier on my psyche.  I started to believe maybe I could stay out of the mental hospital.

I started at the Evergreen State College in the Re-entry to Education for Women program.  It didn’t work out for me.  I found it to be too great a challenge.  Before the end of the quarter I dropped out.  If I knew then, what I know now, I could have made it work.  But, I had limited knowledge about how to help myself along when I didn’t meet my own expectations.

The new problem was that I didn’t want to tell my employer, because working part time was so much better for me mentally.  I enrolled in a correspondence course in motorcycle mechanics.  I knew I wouldn’t actually be able to be hired as a motorcycle mechanic from a correspondence course.  But, I learned the world of engine mechanics, and I was fascinated.  I had a motorcycle that I loved.  I can't say how many times I took it apart and put it back together sometimes correctly and sometimes incorrectly.

My partner at the time helped me start volunteering for South Sound Advocates.  It was a small non-profit agency that advocated for people with disabilities.  I began learning American Sign Language.

After a year or so, I told my management that I had changed the course of my education.  By then, the tandem situation was working so smoothly that they didn’t feel the need to end it for which I was grateful.

I put myself on the half time clerk typist 3 register.  I would not consider a job unless it was part time.  My mental health was worth more than making the most money, having the best career, or being top dog.  

I told people that getting a little more each pay day did not make up for hating your job every day.  What you do every day is what matters the most.  Maybe you can’t have a new car every three years.  Maybe you won’t be able to get a new stereo.  Maybe you won’t be able to buy a house.  What mattered to me was how I spent my days.

I worked with people who actually said to me, “I only have 17 years until I can retire.”  I was flabbergasted.  

“You are wishing your life away,” I thought.  “How is that a good life plan?”

Of course, if you have children, it changes the equation.  I still think there are options.  If I am mentally ill, it won’t do my children any good.  We might have to live in a multi-family situation.  We might have to do more creative things to have fun.  We won’t be going to Disneyland.  I am willing to make those choices.

After about six months, I got a call for an interview for the Washington State Human Rights Commission that needed a receptionist in the afternoons.  I excitedly went to the interview.

I wasn’t the most stylish dresser.  I knew that might be a problem.  However, I had good skills.  I wanted the job.  At the end of the interview, the manager asked, “Why do you want this job?”

I thought a second.  My response was, “It would be the first time I ever had a job that matched my own personal beliefs about equality and the world I want to live in.”  I could tell by the look on her face that I got the job.

The point is that I looked at what wasn’t working for me, what didn’t seem sustainable for me, and found other options.  There are ways I was lucky and continue to be so.  There are also ways I was willing to adjust my work life to match the needs of my mental health.

I work with people all the time for whom their health is seriously impacting their ability to work full time.  We meet and talk.  I make suggestions to them that there are other options.  I am frequently rebuffed by how no other options will work and yet what they are doing is not working.

Making less money is a pain.  Sometimes, a person might have to get food stamps or change their living situation.  Some folks need to apply for disability benefits.  There may be other options they are not considering.  Of course, it isn’t easy.

I think sometimes our lives are like our computers.  Computers have millions of things going on inside them.  When your computer goes all out of whack and you ask someone what to do, what do they say?  “Reboot.”  It’s always, “Start by rebooting.”

Sometimes, our lives need a reboot.  We need a redo.  We need to stop and assess what is working and what is not.  

I go to counseling every week.  I self pay.  My insurance doesn’t cover the cost.  I can negotiate something reasonable with my counselor.  Not going is not an option.  It is like a utility bill.  I have to allow money for counseling every week, every month, year after year.  It is non-negotiable.

I can’t tell you how many times people tell me that they’d like to go to counseling but they can’t afford it.  Or, things aren't that bad.  Or, they don’t have time.  Or, they don’t know who to see.  I say, “Make a phone call.  Make ten phone calls or make a call a week.  Keep making phone calls until you figure out something that works.”  Life is short.  I need to do what I can to make the most of my life.  It is the only one I’ve got.  For all we know, it is the only one any of us has.  Make the most of it.

L’Chaim.

Joceile

Steve Macuk: Powerful with Love

February 18, 2013

A man I love is struggling with cancer.  I'm fortunate in that I am able to do the long good-bye. 

Steve is my former therapist who taught me about the power of love. 

"I want you to sit powerful with love."

"What is that?  Is that some religious thing?"  I asked. 

"No, it's just a state of mind."

"Is it some corporate wording?  Where did you get it?  Powerful with love."  I am not one to accept things easily. 

"No, I made it up."

"You made it up?  In your own mind?"  I persist. 

"Yes."

"You're sure, because I've heard wording like that before?"

"Yes, Joceile.  I'm sure."

"All right. What do you want me to do?"

"I want you to sit powerful with love..."

"I'm not using that phrase."

"You don't need to.  Sit powerful with love and visit a former self of you.  Can you do that?"

"Yes, who should I visit?"

"Visit you when you were upset a month ago.  Can you picture that?"

"Yes."

"Okay."  Steve said, "You visit yourself when you were upset sitting powerful with love."

That phrase again. "How long do you want me to visit?"

"I'm gonna leave the room for a few minutes. How long would you like?"

I pondered this for a few seconds. "Four minutes exactly."  I didn't want it to be too long or too short. 

"Four minutes," he said. "You understand what to do?  Remember to start by sitting powerful with love."

"I've got it."

"Okay, I'll be back in four minutes.  No more. No less."  Steve left. 

I was alone in his office.  I looked around at his pictures and bookshelf.  I took a breath and filled myself with love.  I grasped that part of me that loves my partner and loves my daughter.  I remembered being loved by my grandmother.  I imagined that I was loved and felt it.  Then, I took myself back a month before.  My former self was crying and hurting.  I wrapped my imaginary love arms around myself and held tight.  I sprinkled golden fairy dust over my former self.  I thought, "Why not?"

My former self and I basked in the glow waiting quietly for the minutes to pass.  Shortly, Steve opened the door and walked back in.  I stretched my arms and yawned.  

"How'd it go," he asked. 

I waited, gathering my thoughts.  "I met with her. She was crying. I spread love on her...and golden fairy dust."

"Golden fairy dust?"  Steve commented. "I've never heard of that before.  Is that some religious thing or corporate slogan?"  

No, he really didn't say that last part.  But, thus began an ongoing process with Steve and I.  He never failed to remind me of the power of golden fairy dust...and, of course, sitting powerful with love.

Postscript 

On March 24, 2014, the world lost Steve. I can tell you, though, that Powerful with Love lives on in my heart, thoughts, and deeds along with many, many others he touched. 

Sitting Powerful with Love with Steve taught me to see love everywhere around me but especially in my heart.  I am able to feel the love in my heart when conversing with almost anyone.  I worked with him for a little more than two years.  His outsized influence on me has changed my life forever.  There's so much love on this planet, I feel his spirit is strong.  I don't stop loving him because he's not with us anymore.  I just miss his easy presence.

I love you, Steve.  I miss you.

Video of Steve Macuk

https://www.youtube.com/embed/D9rNe3FLdZE

At Last, Thankfulness in Walking

An extraordinary thing has happened to me in the last month.  My walking has improved.  It is as if a switch was flipped in my nervous system.  My legs are getting the messages I am sending them through my muscles, and they are responding.

This started spontaneously about a month ago.  I do not know why.  Later, I went on a long trip and a few days into it, they started failing again.  But, after I got home and settled in, my walking improved again.

I am so excited.  I am able to once again go for walks with my dog.  I tend to go out at night.  I am not deterred by cold or rain.  Fortunately, neither is the dog.  I love the outdoor privacy when it is dark and damp.  Sheba and I have the world to ourselves.

As for me, I feel so blessed and honored to get to walk freely again.  Many people do not know what it is like to lose the ability to freely walk.  Others lose the ability and are not so lucky to get it back even if it is intermittent.

I haven’t been able to walk in the woods with my dog since last May.  Getting to do that again is better than birthdays, special celebrations, or getting an unexpected refund from some purchase.  

When I can’t walk well, I spend most of my time being very mindful.  I notice what I pass by.  I am moving so slowly there is nothing to do but notice what is around me.  I call it “The Smelling the Roses Syndrome.”  I have to accept that I can’t move any faster or any better.  I focus my energies on just noticing.  It includes cars, people, buildings, trees, or anything that stimulates my interest.

I find myself in buildings examining the ceiling.  Where do those pipes come from?  Why is that beam designed like that?  For what purpose?  Is this the original wall?  This kind of thinking stimulates my sense of myself as an observant person.  What could be wrong with that?

It also causes me to observe people more closely.  What does his posture say about his thoughts or intention?  Hmm, she is standing with her arms crossed.  Is she aware of that?  Could she be merely cold?

Watching people makes me more aware of my own body language.  If I’m moving slowly, I could at least stand straighter.  Why are MY arms crossed?  Are my hands above the table or below the table?  Do I seem impatient?  Is it okay to be impatient when I am uncomfortable?

People often hold doors open for me at work.  As I am moving slow, I often say, “Oh, that’s okay, it’ll be a week before I get there.”  

Many times, people say, “Take your time, I have no where I have to be right now.”  They go out of their way to make me feel like I am not imposing.  As we have time to watch each other as I get to the door, sometimes there are other incidental comments shared.  “It’s okay the evening can start without me.”  “Where are you going after work?”

I can respond with, “Ah, it gives you time to check your phone?”  Followed by, “Thank you.  I hope you have a good evening.”  I guess the point of these exchanges is that they cause a certain civility.  A moment of connection out of our busy or seemingly busy lives.  I appreciate these moments.  They make my loss of quickness far more bearable.

But, for now, I can walk even without a cane.  I recall when I was a teenager.  I would sit on the front steps of my grandparents’ beach house reading or looking out at the beach and the water.  All at once, I would launch off the steps, run through the yard, jump off the bulkhead, and run down the beach as fast as I could until I ran out of breath just for the sheer joy of it.  I wonder now what my grandparents thought.

I have to find sheer joy other ways now.  But, right now, this moment, I can walk.  I don’t know why or for how long.  I may have theories that may or may not be proven right as more time passes.  But, for this moment, for this instant, on this night, I can walk, and I’m grateful.

I say a lot, “Use it while you’ve got it.”  I know that life can turn on a dime.  I also know it can be a positive turn as well as not.  I am looking for the positive as often as I can.  It’s there somewhere.  I know it.

To Life.  L’Chaim.

Joceile

11.23.16

For more stories, go to joceile7.blogspot.com

My "Aunt" Edith

I have a woman in my life who is going to turn 99 on November 14th.  Her name is Edith.  I call her my aunt, because it is so much easier than outlining the convoluted way we are related.  There is no blood relation.  She is my Granny's sister-in-law by Granny's first husband who passed away.  Granny was married to Edith's husband's brother.

Then, as if that isn't enough, my Granny and Grandpa (Granny's second husband) went into business with Edith and her husband, Wave.  They bought a service station in downtown Des Moines, Washington, in the early 50's.  So, really, to just say my Aunt Edith makes so much more sense.

Edith and Wave were my brother's god-parents.  This status was very important once upon a time.  She's been in my life since before I was born.  Growing up, she lived two houses down from me.  She is a seamstress and taught my mother to sew.  She is what one might call a "good Christian woman."  Her husband, Wave, was a preacher and a healer after he phased out his work at the gas station.

Edith has endured some big hardships.  She had three children.  Her oldest son went to Vietnam.  He was never the same after he came back with PTSD.  He died a few years ago of respiratory complications due to agent orange.  Her daughter died of leukemia in the 80's leaving two granddaughters.  Her younger son went to Germany when he was drafted.  He currently struggles with health issues.

In 1998 when my Granny was dying, Edith took her in.  My Granny was unhappy in the Masonic Home which was a retirement home in Des Moines.  Edith invited her to live with her and Wave.  My Granny was so happy to be living with Edith.  Edith bathed her and cared for her.  Their cultural upbringing was to care for members of the family.  Unfortunately, Granny only lived with Edith and Wave for three days before going into the hospital and passing away.

Since Granny lived with Edith, I reconnected with Edith.  I checked in with her regularly.  Wave's health issues became more severe, and he passed away in 2002.

I always call Edith and say, "Hi, Edith, it's Joceile."  She doesn't have caller ID.  It is a childhood habit that is hard to break, even though, I figure she knows my voice.  I just feel better if I follow the etiquette from the "old" days.

Edith tells me she never expected to live alone.  Her youngest son and wife live three doors down.  Her grandson lives next door.  She feels like folks are looking after her.  I live in Olympia.  Traveling is not my friend, so I call.  

Her son brings in her mail each day.  He doesn't want her to cross the busy street.  She never fails to remind me that her daughter-in-law is "a wonderful cook" and sends up left-overs with her son.

At first when Wave was alive, I called every other month or so.  After Wave died, I started calling every two weeks.  Now, I call weekly.  I never manage to call twice a week, although, I intend to.

Edith is rich with information about the world she has occupied.  She grew up in northwestern Arkansas.  Born in 1917, she lived on a farm with her family scraping by as best they could with gardens and animals.  She moved to Washington to marry Wave after he came to Washington as a mechanical engineer.  He may have worked for Boeing.  I'm can't remember.  His brother was similarly mechanically inclined.

Edith still has a garden every year.  She cans and freezes like a mad woman at the end of the summer.  She shared apples with me this year, so I made a lot of apple sauce.

Des Moines is no longer the small town that I grew up in.  Edith has been ripped off several times.  Her car has been stolen twice.  This last time two days after Christmas, at 97, she decided she would stop driving.  It makes me sad because she only drove to the grocery store and the post office half a mile away.  She says she misses having her independence.  She always notes that her son and daughter-in-law will drive her anywhere she needs.

She keeps her carrots in the ground during the winter and pulls them up as she needs them.  Last winter, someone stole all her carrots by pulling up two rows out of her garden.  It is mind blowing.  Really?  They stole her freaking carrots?

Once or twice, she has been the victim of fraud.  As a result, she takes scissors and cuts her return address off all her junk mail and throws it away hoping that will keep her out of the hands of the fraudsters.  I haven't told her that her name and address is electronically available all over the internet.  

Occasionally, she talks to me about her concerns that "they" are going to cut her social security because of some come on junk mail she has received.  I tell her not to worry that her social security isn't going to be cut.  I remind her that our Congress can't get its act together to do anything much less cut her social security.  I fear that she still worries because the junk mail keeps coming.

Edith watches a few television shows every week and reads romance novels.  She told me that she has several hundred in her spare room and occasionally just reads them over again.  When I call, we talk about the state of her garden and what she is doing with her harvest.  We also talk about the state of her TV shows.  We talk about either Dancing with the Stars or the Bachelor or Bachelorette.  I just barely see a few minutes of Dancing with the Stars each week but manage to hold my own in a conversation about any of the shows.  

She also likes Survivor.  I've never watched Survivor but apparently they take place on beaches all over the world.  For Edith, it is a travel log.  Also, she is pretty amazed by "what they put those people through."  I can only imagine.

I've asked Edith about growing up in Arkansas.  I've pumped her on everything I can think of about being in Des Moines during the war (WW II) and what happened with her family, my family, and my grandparents.  Since my grandparents have died, I am aware of the saying, "Everything that goes unasked, goes unanswered."  (I may have made up this alleged saying.)  I know if I don't ask someone about memories I don't have access to I lose that information forever.  I can't Google what's in Edith's head.

Ronnie and I try to take Edith out for dinner at least once a month.  Edith loves Wally's.  It is a seafood restaurant.  She always gets fish and chips with one piece of fish.  She always tells us that it is so much, she will be eating the other half for dinner the following night.

She went to a church up the street for many years.  Sadly, the church closed a few years ago.  The church her friends go to is in Federal Way.  Although they would happily come get her and take her to church, she doesn't want to make them travel out of their way.  "Oh, no.  I'm fine.  I don't want to make them come all this way."  All this way is probably three miles.  I know they wouldn't mind.  But, asking for assistance doesn't come easy to Edith.

She is fiercely proud.  She is used to doing for herself.  If I lived closer, I'd take her to church myself.  But, I don't live closer.

Making contact with Edith is so important to me.  I love her.  I care for her.  I hope if I should be that old and alone one day that someone will check in with me regularly.

Sometimes, we talk about her God.  When I was younger, I hated talking about her God.  Now, that I am older I don't mind so much.  I'm no longer threatened by her God.  I ask questions.  She has told me that she hopes I have made peace with God, because "it is so important."  I assure her that I'm good.

There is one special thing about my conversations with Edith even though sometimes they can be a bit redundant.  At the end of our conversations, I always say, "I love you."  Her response is so touching.  No matter what we have been talking about, her voice changes slightly to a warmer tone, and she says with such love and sweetness, "Love you too."  It is that incredible love and gentleness in her voice that touches me to my core.

I can't hear that sweetness too many times.  I know one day she will be gone.  I love you too, Edith.  You've already lived far longer than most.  Here's to you becoming a centenarian.

Joceile

Edith and Zack 

Conflict: Me & the Boogie Man

I have a young friend that does not understand the importance of conflict.  Actually, I believe a lot of people, young and old, do not understand conflict's role in everything life related.

First, a definition:  Conflict is the state of competing agendas.  Conflict can be the outcome of misunderstanding or misinterpreting what's been said to you.  It is not inherently bad.  It is like gravity.  It just exists.

Conflict is often seen as something to avoid.  Perhaps being an indicator of something wrong in a relationship.  Rather, conflict is the smelly fertilizer that enriches our relationships.  It is as  common as dandelions trying to get a toe hold in a perfectly manicured lawn.

To me, one of the most frightening feelings resulting from conflict is anger.  "I am angry at you for..."  "You are angry at me for..."  People fear that it can instigate violence and trigger memories of past violence.

People avoid conflict because they fear their own or another's anger.  Because of my traumatic childhood, anger evokes a lot of fear for me.  Raising your voice at me gets my attention instantly, and I freeze.  I had to learn that a raised voice now isn't the same as a raised voice and a raised hand from my childhood.

To successfully explore relationships, business, and performance opportunities, it serves me to embrace conflict for the learning opportunity it is.  Learning to effectively engage in conflict is one of the single most important things I can do to improve the quality of my life on all levels.

Conflict creates a tension between me and the other person.  This tension is when we are present in the moment.  It is where we have the most power to act.

Conflict allows an opportunity to look into more than one perspective of a relationship and grasp the essentials of what makes one side think or feel about things the way they do.  It is easy to succeed when things are going well.  It is far more telling how I react when things are going badly or when I've made a poor choice.

There is a tendency in this modern world to deal with conflict using the intractability of the written word either by email or text.  Trying to put my feelings into these one way messages does not allow for the give and take of conflict.  There is no opportunity to qualify what I am saying when I see a puzzled or angry look cross my talking partner's face.

I have missed many opportunities in my life, because I was busy avoiding conflict by not asking myself, "Why do I feel that way?  What caused me to react that way?  Is there something I should be asking of the other person?"  Because I didn't ask myself those questions, I didn't follow up with the other person either.

In my love relationship, conflict is something I have never loved.  I have never run with open arms to grasp and explore it.  However, it is the part of what allows us to draw closer together to understand each other better.

When we were young and very much in love, we would work through conflict which was usually some type of misunderstanding all night until we reached resolution.  Our idea was that there was a glass between us that we wanted to keep clear.  If we let something lay on the glass without examining it, it would be a smudge on the glass. The smudge would collect other bits on the glass and continue to grow into some small hill and possibly a mountain.

Things left on the glass unexamined made it more and more difficult for us to see each other on the other side.  The glass would grow dimmer.  We would not be able to see the one we loved on the other side.  My interpretation of my partner through this smudged glass would cause her to seem like someone other than my best friend, someone who was trying to make me different than I am.  Someone who was my enemy trying to drag me through perspectives that I knew were wrong.

My deepening depression in our 19th year caused me to see less and less of who my partner really was and her desire to connect with me.  As the glass grew dark, I could no longer see the woman I loved and instead saw someone who was trying to make me different and did not appreciate who I was.  I began hiding inside myself, angry, frustrated, and withdrawn.

Fortunately, for me, after a perilous time, my depression began to recede.  I was once again able to see the woman I had always loved but pushed away so hard when the conflict became frightening.  I could once again see the love she had in her face for me.

After several years of hard work, the glass is clear once more.  We see each other.  When conflict arises, such as a misunderstanding or an action of thoughtlessness, we are now too old to stay up all night.  Sometimes, the discomfort lasts for several days as we slowly work our way through it.

Resolving conflict can make relationships grow and support a system of balance.  Every day the sun rises and sets.  The night intervenes.  This is conflict.  Day versus night.

My young friend is uncomfortable with conflict.  Thinking perhaps that it is a sign of something wrong with the relationship or that she has been wronged by another person.  It is true that it needs to be addressed, talked through, and understood.  It is not true that it needs to be avoided.  The feelings do not go away.

To deepen a relationship is to seek to understand the other's perspective, to get to know what is inside of your friend, lover, or opposite.  There is much to learn about another person if you ask questions to gently pull apart the conflict, dissect it, and understand it.  "I reacted that way because I felt....  What was going on with you then?"

There are no streamlined methods for dealing with conflict.  I have to start with how I felt and why I felt that way.  I have to patiently listen to how the other person felt and why they felt that way.  The seesaw goes back and forth.  My turn, your turn, until there is understanding, followed by, hopefully, agreement.  It does not always work this way, but this is the goal.

Nobody likes conflict.  It is not fun to look inside yourself and admit to your own failings, pre-conceived notions, or baggage from hurts long ago.  But, if I care for you and us, I will ask questions, I will face truth, and our glass will stay clear.  I will ask.  I will listen.  That is the method of conflict.

Someday, those dandelions may grow on my grave.  It will not be because I didn't face conflict even when I was most scared, angry, and uncomfortable.  It will simply be that nature had the last say which is life in balance.


10.22.16

Just Call Me "Wheels" For Now

Recently, my fortunes changed, and I found myself having to use a wheelchair to get around.  This is not my first time finding this to be true. Although, I fervently wish it would be my last time.  A coworker asked if she could call me “Wheels.”  You bet.  I’m good with that.

The deal about using a wheelchair is that it humbles me. I cannot hide my disability from anyone who sees me. I have to take on verbalizing my needs. It may not be true for everyone but sometimes I need a push or a door held open for me. Often, I have to ask for help, because people simply don't know what I need unless I tell them. This dynamic is okay but it's humbling.

I also get to learn about the little details of accessibility in my office building. Please don't take this as a complaint but rather a recitation of the facts--some of which are humorous. For example, I park in the garage at my building. But, I work on the second floor. The most direct route to get from car to cubicle is as follows:  park on garage level D; elevator to floor 3; plaza level to bridge to third floor of building (did you know that the plaza bridge is tilted slightly upward coming in?); elevator to floor 2; and in wing door to cubicle.  Whew!

This works fine unless it's raining. Quick rundown of that path from floor 2:  elevator to first floor; through Accounting to ramp to garage floor E; elevator to garage level D; and over to car. Whew, again!

Then, there are interesting disability access door buttons. The lobby has the best one:  swipe badge, hit button, door opens to elevator area, and roll in. For this one, I don't even have to wait around for the door to close to prevent tailgating, because the receptionist is right there watching.  Sometimes, she even hits the button for me.

Entering from the plaza on floor 3 is interesting. Swipe card, move six feet back to hit accessibility button, move six feet forward to catch opening door. Do not dillydally during this process or you will have to repeat it.

Then, there's my personal favorite--the second floor restroom and my wing door at 2E. We do not have accessibility buttons for every wing door. So, it can make for some quirky confusion. If I swipe and hit the button at 2E, it opens the door to the restroom and not the wing door. Oops. Sorry, ladies, I'm not actually coming in there right now.

Between the Washington State Law Against Discrimination (enacted long before the Americans with Disabilities a Act) and the ADA, we are very lucky to have such a wealth of accessibility options.  I am very appreciative and grateful. As is true with many things though, there's just always one more thing. As Roseanne Roseannadanna said, "It's always something."

I hope you have a good Disability Employment Awareness Month. As always, if you have questions, please, just ask me.  I really don't mind.

October 2015

Bring It On

I returned from vacation a couple weeks ago.  The Sunday before returning to work, I was a little down because pain and difficulty walking were still omnipresent.  I thought I would get a head start on my emails before Monday morning.  About the fifth one in, I opened an email that said, "on behalf of the Governor's Committee on Disability Issues and Employment...You have been nominated for the 2016 Employment Support Professional of the Year Award."

I couldn't believe what I was reading.  I read it to my partner, "Does this actually say what I think it says?"  I texted my team asking, "Do you know anything about this?"  I got responses back like, "Yeah, well, maybe, I knew about it."  Apparently, my Human Resource Division coworkers had been working behind my back since last July nominating me for this exceptional award.

Not only did I have the honor of being nominated for this award, the whole of the Department of Licensing (DOL) as an agency was nominated for 2016 Employer of the Year.  (For those who don't know, DOL won 2015 Public Employer of the Year.)  I felt excited and humbled by having this opportunity to receive acknowledgement by my peers in the statewide disability accommodation network.

I've watched enough Academy Awards to know it is foolish to not come prepared no matter how unlikely the award.  So, I wrote a just in case speech as I didn't want to be the person with no words.  In fact, I recorded myself and listened to it over and over in my car to get the right pacing and voice inflection.  I knew it might be silly, but I wanted to be prepared...just in case.

From DOL, Laurie Milligan, Betsy Vandrush-Borgacz, Tod Ayers, and I attended at the Microsoft campus in Redmond.  My family was also there.  They fed us a nice breakfast.  There were great people to meet and share stories.  At our table was a couple from Vancouver who had a coffee roasting wholesale and retail business who hired disabled employees.  They were located between the School for the Deaf and the School for the Blind in Vancouver.  It was fun.  We were ready to party.

There were sixteen of us nominated for my award.  All of us are the best in our business.  Our names were in the program and our pictures flashed in a queue on the wall.  At the appointed time, our names were read individually along with some part of our accomplishments.  One by one, we came to the stage, were given a certificate signed by Governor Inslee, and had our picture taken with the chair of the Governor's committee.  We then lined up and awaited the announcement of the winner.

I had decided earlier in the week that just being nominated was an award and that anyone who had done more than I certainly deserved my support.  Finally, they announced the winner.  It was not I.  However, I felt I was in extraordinary company.  The winner spoke only briefly.  They took a group picture, and we filed back to our tables.

My partner, daughter, and brother were there with me.  My daughter, who is a performance artist, had heard my just in case speech the week before.  She had said, "If you get close to that microphone, grab it.  Don't let it go and give your speech."  Sadly, I was not close to the microphone.

The ceremony was long.  DOL had been nominated as an agency, and our group waited pensively.  There were 42 nominated employers.  Each with a story.  We applauded politely.  A Walmart was nominated for hiring several Deaf employees which was glorious.  However, their other employees volunteered to take sign language classes on their own time and out of their own money.  We raised our eyebrows.  Surely, Walmart could pay their employees to learn sign language and provide the training?  That is what DOL is doing.

The ceremony worked it's way through various levels of employers including small, medium, large, private, non-profit, public, and youth employer.  Everyone came up, got a certificate, and had their picture taken.

Betsy suggested that if we won, she, Laurie, and I should go to the podium. Tod would take pictures.  With a little fanfare, the award recipients were announced one by one and given an opportunity to speak.  Finally, the level that we thought DOL might get came up.  A different agency got the award.  Betsy sent me a little pouty face.  We were disappointed but still thrilled to be in contention.

Then, they announced an award that was not on the program.  It was for 2016 Employer of the Year which transcended all other employers in the state of Washington.  Suddenly, the powerpoint on the wall said, "Department of Licensing."  I looked at Laurie.  We couldn't believe it.  The three of us went up to the podium.  We didn't have a plan of who would speak.  Laurie gestured to Betsy.  Betsy said some words about DIG, our Diversity and Inclusion Group.

Then, they took our pictures.  I looked longingly at the mic.  I heard my daughter's words, "If you get close to that microphone, grab it!"  I fumbled in my back pocket for my speech.  Before we left the podium, I said I had something to say.  I grabbed the mic, brought it to my mouth, holding my cane and my paper, and spoke the most important part of my just in case speech:

"I have two takeaways to share with you.

First, disability comes in an astonishing number of ways, many of which are unseen. All of us will at some point have some form of permanent or temporary disability during our lifetimes.

According to NAMI, the National Alliance on Mental Illness, 25% of adults in this country experience mental illness in a given year.

From the 24 year old who suffers from severe depression and can only work part time to the 50 year old Veteran with PTSD who's managed on their own for many years who finally says, "I need help."

The question is:  Are we going to treat others how we will want to be treated when it's our turn?  Will we be willing to have the uncomfortable discussions?  I want to know someone will be there for you and you and you and you and me.

Second.  I have been in this business for over 35 years. I can tell you what makes reasonable accommodation viable in employment. It takes commitment and passion at all levels of an organization.

From a governor who says hiring employees with disabilities is a priority and follows up with:  "I'm watching. Do it and Show me the numbers."  All the way down to a coworker who says, "I don't understand but I can still support my coworker."

This has created a culture in my agency where if a job applicant or employee needs an accommodation, we don't say, 'Oh my gosh, how are we going to work around this?'

Instead we say, 'This is a learning opportunity.  We're hungry for learning by doing.  BRING IT ON.'

Without this attitude,  Nothing changes. We ALL want this change.  We need to support people in making it happen and hold them accountable.  Going forward I say, 'This can only get better.  Bring It On!'

Thank you."

The crowd burst into applause.  As I walked back to the table, a woman who uses a wheelchair darted out, gesturing at my paper, and said, "Can I have a copy of that?"  I gave it to her.  It was the end of the ceremony.  People came to me and said, 'That's what we wanted to hear.'  One woman said, 'I actually got teary.'  Betsy told me that people came up to her and said we need a new hashtag:  #BringItOn.

My partner video taped most of my speech.  It was a grand moment.  I knew my daughter was so right.  When you have something important to say and have an opportunity, grab the mic.  You never know when the opportunity will come around again.  Bring It On.

Joceile Moore

10/8/2016

YouTube of Bring It On:
Link under picture 
https://youtu.be/bY5lBdUPzK4

http://youtu.be/bY5lBdUPzK4

Play to Win...Why?

When I was a kid, I always wanted to learn how to play chess.  But, I didn't have anyone to play with so I could learn.  I got a chess set and learned how to move the pieces.  I played with my brother who is three years younger than I.  I taught him how to move the pieces, and we played.

Because I was older than him, I could be more strategic in my moves.  It was difficult to be strategic with a focus on winning and teach him to win at the same time.  I was maybe eight, and he was five.  The problem was that when I took his queen he started crying.

My mom would come in the room and say, "What's wrong?"

Zack would speak through his tears, "She took my queen!"

My mom's response to me was, "Give him back his queen."

Then, I would cry, "Mom!"  So, the strategic part was lost in the game for me.

One day, we were visiting some bunch of relatives somewhere.  There was a cousin I had never met before.  He was around 13.  I learned he knew how to play chess and asked him if he would teach me.  He said sure, and we started playing.

He was supposed to suggest moves to me so I would learn.  I trusted him and dutifully followed each move as he directed.  Further into the game, he said, "Check mate," with an evil grin on his face.  He was very pleased with himself that he had led me down the garden path while I blindly followed him so he could nail me.  I was terribly embarrassed and humiliated that he had tricked me when I trusted him.  After that when I saw him, I steered clear.  It left a bad taste in my mouth.

Another time, I got a brand new life jacket.  I was eight.  It was a bigger kid one without the cushion behind my head.  I was proud.  I felt strong.  I was showing my neighbor, Johnny, who was a grown man.  I said, "Hit me as hard as you can.  I bet I won't even feel it."

He reared back and belted me in the in the chest in my life jacket.  He hit me so hard I lost my breath.  This was not what I'd envisioned at all.  I looked at him while I couldn't breath.  Okay, so I could feel it.  But, why hit me so hard?  Why?  Why?  Why?

Later as an adult, I got really good at playing Othello.  It was the kind of strategy I was good at.  I could see the whole board.  I could see many steps ahead.  It was one of the few games that no one could beat me.  The strategy of the game just suited the way my mind worked.

One weekend, we were at a party at my coworker, Clarice's house.  She had a lot of family over, and we had brought the game with us.  I'm not sure how it happened.  But, I ended up playing her fourteen year old niece in front of everyone.  They wanted to know if she could beat me.

We played.  I knew my ability to envision the game and the results of all the moves would enable me to win.  But towards the end, I found a move that would cause me to lose that wasn't too obvious.  The girl was thrilled and everyone was impressed with her win.

Walking away, my partner, Ronnie, said, "I followed every move but one.  I couldn't figure out why you made that one move."  I smiled.  She looked at me and whispered, "You threw the game didn't you?"

I responded, "I'll talk to you about it later."  I didn't want to take any chance that someone would figure out I threw the game and certainly not the girl.

Later, Ronnie and I talked about it.  "I knew I could win.  But, I thought she might enjoy winning."  I thought about the boy and the chess match.  "Maybe it made her day.  I certainly didn't need to prove that I could win.  I know it's not easy being a teenager."

From time to time, I think about that game and smile.  It is the mark of self confidence when you know you can win but strategically know it is not necessary to prove it against someone else.  Maybe, the other person could use a win.  Certainly, I didn't have to take advantage of someone just to stroke my ego.

I don't understand when someone who is so strong finds the need to build themselves up at the expense of someone weaker.  Is that really winning or just being an ass?  I see a lot of that in the world.  I just don't get it.  Beating someone weaker doesn't prove a damn thing except that you're a jerk.

9/4/16

The Underdogs: Me and Snoopy

I'm reading this book about service dogs for children with disabilities. The chaos of the family life of those children prior to getting a service dog reminds me of my own childhood family chaos. 

I could tell the story from many perspectives but for now I'll just start with our dog.  My brother and I longed for a dog.  We asked my dad repeatedly if we could have a dog but the answer was always no.  My mother was not opposed but my dad had the final say.  He would say they were too much work.  He would say they made noise.  He would say that he had grown up on a farm with animals, and he had had enough of animals presumably forever.  

Each year, we would ask him if we could have a dog.  He would say, "Who would take care of the dog when we visit your grandparents in Oregon this summer?"  (My father's parents.)  We visited them every summer for my dad's two week vacation.  For my brother, Zack and I, we just really wanted a dog. That's all we knew about it.

By fourth grade, his parents left Oregon and moved to Oklahoma.  That summer, we went to Oklahoma for two weeks.  

During elementary school up to this point, we had a family that lived across the street, the Carlson's, who had three kids our ages.  A boy, Robby, who was a year or two younger than Zack.  A girl, Christine, who was Zack's age and Linda, who was my age (three years older than my brother).  We loved the Carlson's and played with them every day all the time.

When I was in fourth grade, they moved away to Alaska.  There was a huge hole in our lives.  (Our mothers also spent an extraordinary amount of time together including ironing and doing other housework while talking on the phone.)  In June after returning from Oklahoma, there was a vacancy from missing the Carlson's that nothing could fill.  We begged dad for a dog and finally he said yes.

There was a litter of mixed breed puppies with a family a couple streets over from our house.  We picked out an all black dog.  My mother and brother loved Peanuts.  I didn't care what the dog's name was.  So, they named him Snoopy.  Snoopy was the cutest puppy in the world.  He grew to be around 35 pounds.

We all loved Snoopy.  I loved Snoopy.  Snoopy did everything with Zack and I.  He followed us on our bicycles when we rode all around the school.  He went with us on our adventures in the woods.  He was our best pal and teammate.  During the summer, when we went to our grandparent's beach house on weekends (my mother's parents), Snoopy came with us.

More than anything, I wanted to have Snoopy sleep with me at night.  My mom said he couldn't sleep in my bed with me. So being a young person of infinite ideas, I slept on the floor with Snoopy in a sleeping bag all summer.

My mom told me that when I was very, very young I had a little dog.  I don't know it's name.  My mom told me she got rid of the dog, because she didn't want her baby girl smelling like dog.  (In my head, I imagine a loss as a tiny child that I couldn't name.)

My mom kept telling me that when school started I would have to sleep in my bed and Snoopy couldn't sleep with me.  She kept telling me, "Remember, Snoopy won't be able to sleep with you when school starts."  I knew what that meant for me, but I had no idea what it meant for Snoopy.  

When school started, I rolled up my sleeping bag, put it away, and crawled into my bed.  From an adult's perspective, naturally, Snoopy crawled up on my bed to sleep with me.  But, from a kid's perspective, "How do I make him stop?"  The answer was, I couldn't.  

I would start out at night with Snoopy on the floor.  Then, at some point, Snoopy crawled onto the foot of my bed and went to sleep.  He never woke me when he crawled up.  Then, at another point during the night, I was awakened by my father yelling at Snoopy to get off the bed and hitting him.   

This was an outcome I could not have predicted and no adult assisted me in avoiding. For months, it was a nightly occurrence unless when my dad came home drunk he just forgot to check on me and the dog.

Unfortunately for Snoopy and I, this same scenario played out when we went to my grandparent's beach house on Vashon Island.  We would take Snoopy who was Zack's and my best friend.  At night, we would sleep on a couch that folded flat into a bed and sometime during the night, Snoopy would crawl onto the foot of the bed.  Also, every night, I was rudely awakened by my Grandpa yelling at Snoopy to get off the bed and hitting him with a newspaper.

We tried to make Snoopy pleasant little dog beds, but nothing could compare with Snoopy's need to sleep with me.  I felt bad.  I was sure it was my fault, but I had no way to figure out how to make it stop.  Because of the cruelty of my father and my fear, it would never, ever occur to me to simply ask him and my Grandpa to just stop and let Snoopy and I be.  What a horror that there was no way for me to make it stop.

My lack of direction for dog training got even worse when Zack and I started school in the fall.  Snoopy followed us to school.  My mother didn't want Snoopy in the house, because he would make it dirty.  Zack and I would walk to school and make Snoopy stay at home.  But, repeatedly, the principal would come get me and tell me my dog was at school and threaten me with the dog catcher.  I didn't know how to make Snoopy stop.  I would take him back home.  If he followed me, all I knew to make him stop, was to beat him just like my dad beat me.  I would hit him or kick him trying to make him not follow me.  How could Snoopy know the difference between going to school during the summer while we rode bikes and not following us in the fall when school started?  No adults helped with the problem.

One day, my neighbor saw me beating Snoopy and told me that was no way to treat a dog.  I felt so ashamed.  I didn't hit Snoopy again.  But, then, we tried tying him up.  Snoopy would cry and cry.  He would not stop.  If I let him off the rope, he would stop.  As soon as I tied him up again, he would go back to crying.  One day another neighbor walked up to our house and yelled at me, "If you don't shut that dog up, I'll call animal control."

I was at a total loss.  Mom still wouldn't let Snoopy in the house.  Snoopy took to running off during the day mostly to the people where we got him from.  I didn't like it, but I couldn't think of an alternative.  For a few weeks, Snoopy would bring a friend back with him.  He was a big German Shepherd type dog that we called Luke.  I wanted Luke to like me.  I wanted him to stay at our house with Snoopy.  Luke came and visited with Snoopy for about three weeks and then he was gone.

Finally, we took Snoopy to the vet to get fixed.  It was just Zack and I.  The vet was about a quarter mile away on the highway.  We took Snoopy in, and they told us to come back and get him at five o'clock.  Zack and I were back at five but the doors were locked.  They were closed.  No one told us to get there before five.  

Zack and I were bereft.  We could hear Snoopy whining.  We wanted Snoopy.  We didn't want to wait.  We called to Snoopy.  I said, "Snoopy, don't worry, we will get you."  We were crying.  The vet and his family lived behind the office and down a story.  We went in the back yard trying to figure out how to rescue Snoopy.  

There was a sliding glass door and the vet's family had sat down for dinner.  We begged him to give us Snoopy.  I guess having us hang around was worse than taking the time to give us our dog.  We went home with Snoopy.

Snoopy continued to disappear for periods of time usually not more than a day or two.  In the winter, Snoopy was finally allowed to come in the house again.  One night, I woke up.  My dad was yelling.  Snoopy was screaming.  My dad was beating Snoopy.  I didn't know what Snoopy had done.  But, my dad was beating him.  My mom was yelling, "LeRoy stop."  Zack and I were crying.  We were terrified.  

My dad almost beat Snoopy to death.  Snoopy had no broken bones or anything.  But, he never went near my dad again.  I wish I had that choice.

Finally, in sixth grade, my dad stopped coming home drunk.  He stopped coming home at all.  One night, the furnace pilot went out.  Mom, Zack, and I were huddled in the living room fold out couch trying to stay warm.  My mom kept calling my dad asking him to come home to light the pilot.  No one else knew how to do it.  My dad wouldn't come home.  We were so cold.  

After that, my brother who was probably nine learned to light the pilot.  Women didn't do things like that in my family.  We never had to wait for my dad again.

Another year went by, and my mom finally kicked out my dad.  I had encouraged her to do that for months and months.  We had stayed up late nights while she cried waiting for my dad to come home.  I tried to comfort her.  I tried to bolster her confidence.  Instead, I just became her sole support.  I had no way to escape my mom's need but to go to school and stay late talking to my teacher.

One day, Snoopy came home and he had lost an eye.  We didn't know how.  We couldn't afford to go to the vet.  So, it was just like that.  Snoopy had one eye.

At fourteen, I ran away from my mom.  A couple months later, I ended up in Western State Hospital.  While I was gone, my brother lived alone with my mother.  I heard that one day Zack saw that Snoopy's other eye was in trouble.  My mom wouldn't take him to the vet.  My brother was terrified Snoopy would lose his good eye and be blind.

My brother called my Grandpa and begged him to help Snoopy.  Grandpa took Snoopy to the vet.  After that, Snoopy went to live with my Granny and Grandpa.  Not long after, my brother and mother moved out of the house.  They moved into an apartment where they couldn't have a dog anyway.

When I got out of Western, I went to live with my Granny and Grandpa.  I found myself living with Snoopy again.  Both Snoopy and I had a good life with my grandparents.  We had regular meals and lived in safety.  Snoopy slept on the floor on Grandpa's side of the bed.  He was nominally my dog.  But, Grandpa and Snoopy became good buddies.  Grandpa took Snoopy with him everywhere.

Just before bedtime, Snoopy would sit in the doorway between the living room and bedrooms watching Grandpa and willing Grandpa to come to bed. If Grandpa didn't come, Snoopy would put himself to bed. 

When I left home, Snoopy stayed with Granny and Grandpa.  After Grandpa retired, he took Snoopy in his truck everywhere.  Grandpa was a big recycler and had a route he followed.  He disconnected the dome light in his truck so the passenger door could stay open while he was doing things.  That way, Snoopy could let himself in and out of the truck.  It also was a way for Snoopy to not get too hot in the truck.  Grandpa called him ole Snoop because he poked his nose into everything.

My grandparents lived in my home town of Des Moines, Washington.  I moved to Olympia.  Snoopy stayed with Grandpa.  Again, I wanted a dog.  I waited until I lived somewhere stable before I even thought I could get a puppy.  

In February 1984, I got Sasha.  He was a mixed golden retriever, yellow lab pup.  I didn't want a dog who was too rambunctious.  I looked at the litter.  All his brothers and sisters were jumping up and carrying on.  Sasha was trying to sleep, and they were bothering him.  I decided he was the dog for me.

One of the things I really needed to know about myself before I ever had children was whether I could trust myself to not hit my dog.  It wasn't a problem at all.  I never hit Sasha.  I loved him.  Sasha was a loyal and good natured dog.  He just wasn't the sharpest tool in the box.  But, he was always game for anything I wanted to do.

The year I got Sasha, Snoopy started having heart problems.  He woke my grandparents in the night screaming.  Grandpa took him to the vet.  By now, Snoopy was about 18 years old.  The vet said there was nothing he could do.  He had a couple more of those awful bouts.  I saw my Grandpa the day he had to put Snoopy to sleep.  My Grandpa cried.  His heart was nearly broken.

When my Grandpa came to my house and met Sasha, he fell in love.  Grandpa wouldn't let himself have a dog again but he was always glad to see Sasha.  Sasha was always thrilled to see Grandpa.

One day, I asked my Grandpa why he loved Snoopy so much.  My Grandpa told me the story of being a teenager living in Olympia (1929 or so).  There was a stray black dog that looked a lot like Snoopy who followed Grandpa and his friends around everywhere.

Grandpa and his friends hated this black dog.  They couldn't seem to shake him.  For reasons unknown to me, they tried everything to get that dog not to follow them.  They tied him in a bag and threw him in the back of a truck.  He came back.  They put him on a freight train, but he came back. Then one hot day, Grandpa took that dog out into the water, held him under while he thrashed, and drowned him.  Once the dog was dead, Grandpa felt really, really bad and regretted it the rest of his life.  Snoopy reminded him so much of that dog that this was how he could make amends.

Snoopy's story is my story.  We were both underdogs that survived.  Lots of underdogs don't.  It wasn't by our wit, our courage, or our beauty.  It was only by our luck and the fact someone cared.  It was also, of course, because my Grandpa had to make amends.  Thank goodness someone was making amends. Otherwise neither of us would have survived.

8.28.16

[#1 Picture of Grandpa and Snoopy at the beach. 1976]

[#2 Picture of Snoopy, a black dog, on the porch at Vashon. 1970]

Deterioration

It's amazing how much you can do while slowly deteriorating physically. Not everyone can see the changes. But, I see them. Slow and relentless effecting my every physical act. 

Getting up each day requires an assessment.  What is my capacity for walking today?  First thing in the morning, I have to determine how many hand holds I need for going from the bedroom to the bathroom to the living room.

What is my energy level today?  Well, that's a moving target.  At this moment, maybe I feel like doing anything is like walking through six inches of mud.  Maybe later on, I will only notice one inch of mud.

When I'm ready, I start thinking about bathroom business and making breakfast and lunch to go to work.  There are multiple issues threading my way through getting ready for work:

- Taking medication in the form of pills.  I can't hold pills well anymore.  They jump out of my fingers, usually hitting the floor, landing somewhere, and vanishing.  Fortunately, we don't have small children.

- I make tea and marvel at whether I spill water, tea, or honey.

- It is no longer safe, from a spillage perspective, to hold an open container of liquid thoughtlessly.  I am a ginger ale a day person.  I favor aluminum cans.  Last year, my partner bought me a six pack of plastic ginger ale bottles with lids.  What a revelation!  The spillage reduced exponentially.  I hate plastic bottles so everyday I poor my aluminum can of ginger ale over the sink in the same plastic bottle used over and over.

- In addition to saving the floor from ginger ale, it has also saved many a workplace desk.  I take a sip and always put the plastic cap back on.  I can't tell you how many times I've visited folks with offices, keep the plastic cap on, and sigh with relief when somehow my arm manages to tip the bottle over harmlessly onto their desk.

- I also have to pace myself.  It used to be if I was 20 minutes late I could just speed things up.  But, not anymore.  To hurry just invites disaster.  If I have to hurry, some step just needs to be cut out completely.  Otherwise, I risk making a mess or entering into so much pain that I just have to stop moving for a bit.  It's hard to make an appointment when I have to stop moving prior to leaving the house.

One of the things that drives me crazy is that I can look fabulous but feel like total shit. One of my favorite lines is, "Just because you feel like shit, doesn't mean you have to look like it."  The theory is a mixed blessing.

This all started in June of 2011.  I was just recovering from a deeply dangerous depression nearly loosing my partner and probably my life.  I had been going to the gym, seeing a personal trainer, and loving it.  When I walked through the parking lot from work to the gym, my feet started feeling funny.  

My feet began to be very unhappy in shoes with some kind of buzzing feeling.  I tried all types of shoes including leather, sandals, tennis shoes, and just plain socks.  For a long while, walking around in socks at work was the better choice.

Sometime towards the end of that year, I saw a foot doctor and a neurologist who both said I had neuropathy in my feet, peripheral neuropathy to be precise. But, there was no clue as to why.  It was not the worst thing in the world, and I soldiered on.

I kept going to the gym.  In late 2011, I got this extreme pain down the right side of my leg.  In the search for that cause, I learned I had a cyst pushing into a nerve in my spine that was 90% for certain causing the pain.  In April 2012, I had the cyst surgically removed.  The pain down the right side of my leg went away.  But, by June 2012, a new pain in my legs replaced it.

This new pain was a dull muscle ache.  My legs felt like I had just run five miles and felt oxygen starved.  Then, the tingling in my feet and legs started.  I hurt my back in October 2012 and had to stop going to the gym.  I went back in December 2012 but then had to stop again.  I had trouble walking any distance.  I began to use a cane on the bad days.

I launched into the What's Wrong with My Body department.  No doctors had a clue.  I began the treatment search.  

"Have you tried acupuncture?"  The most famous line folks with neurological problems hear.

"Yes."

"Massage?"

"Yes."

"PT?"

"At least three different practitioners."

"Naturopath?"

"Yes."

"Diet change?  Go off gluten, dairy, sugar?  Eat lots of green vegetables?"

"Yes, as much as I am capable of."  I know I never really put my back into the diet thing but often I can barely stand to eat as it is.

My symptoms worsened.  Some days, it involved my arms and pain in my hands.  But, it would ebb and flow.  Some days, it would reach the point of pain where I would freak out thinking my life was on this terrible decline into major disability.  Then, I would get better for a few weeks before going through another period of difficulty moving and walking.

I love to walk with the dog.  One of my measures is, "Can I walk the dog?"  Sometimes, I would walk easier and farther.  Hope would spring up.  Then, one evening, my body would tingle from head to toe.  Tingling maybe a misnomer.  It is actually more like laying there while electrical shocks are running through my body.  I would lie in bed hoping it would go away and wake up far more mobility impaired than I had felt the day before.  What one might call a relapse or a flare.  (It would be better if it was a flair.)

For awhile, I just called it, "No Walkus."  This was taken from the idea that what if a doctor couldn't diagnose a broken leg or sprained ankle or some other mobility thing and would just tell a person that it was "No Walkus"?  They l couldn't identify the problem but for sure the person couldn't walk worth shit.  Hopefully, it would just get better. 

On to more neurologists..."What is it?"  

"Peripheral neuropathy."

"MS?"

"Fibromyalgia?"

"Vitamin deficiency?"

"Lyme disease?"

"Was it all the toxins I was exposed to in the 60's and 70's growing up in my grandparent's service station?"  No clue.

Finally, I woke up with such a bad day that I couldn't walk and broke out the wheelchair.  I rolled into the neurologist's office who is now off my list forever.  He said it's not this or not that.  But, "Don't give into the pain."  

"What the fuck?  Do you even know me?  Do you even know my history?"  I thought.  I was flabbergasted.  Telling me not to give into the pain was like telling Einstein not to give into his stupidity.  That is NOT the problem.  I had to use the wheelchair for three weeks during that period.  I know it is a useful tool but I hate being limited to wheelchair use.  Gradually, I worked up to two canes and back to one.

During one procedure, the nurse asked me if I had fallen in the last six months.  I laughed, "Are you kidding?  I fall every other month."

A visit with a rheumatologist.  "Not really Fibromyalgia.  Eat better and keep moving."

Symptoms piled on symptoms.  Loss of fine motor skills.  Loss of feeling in my feet.  Loss of strength in my legs and hands.  

I spend part of my life looking for mobility aids to make things easier.  I now have:

- Three canes, a walker, and two wheelchairs.

- A disabled person's license plate.  (I will not drive with one of those damn placards hanging down all the time!  It's a safety hazard.)

- My cell phone has a ribbon tucked into the case for the back of my hand when I'm holding it so I won't drop it all the time.

- The major jars I have to unscrew all have thick rubber bands around their lids.

- A zero gravity living room recliner which keeps life from being total hell. 

- A sit/stand desk at work.

- A tablet and a keyboard at work for taking notes.

I drag my mind back from what might be in my future.  I am a great typist, and I write. Will I have to adapt to another way of writing?

My mother always dressed us in white.  She loved to tell the story, "Joceile is so neat that she can eat a chocolate ice cream cone and not spill a drop on her clothes or her clean white tennis shoes."  Oooh.  Ahhh.  Not anymore, Mom.

I was athletic until my first bout of mobility issues.  In racquetball, the teacher observed me play and shook his head saying, "You play with finesse."  He knew it wasn't that I was so skilled. I could just fake it.  My partner says I was unconsciously graceful.  It's gone for now.

At first, when my partner and I played catch with our baseball gloves, it was funny.  I stopped being able to reliably let go of the ball.  Sometimes, I would let go too late and the ball would go straight up in the air.  I would cover my head, and both of us would run for cover.  Now, I can't hit a garbage can when I'm dropping something from straight above it.

During one of my treatment regimes, I had a great time for six weeks going to a hyperbaric chamber which increased my body's oxygen intake.  I made great strides in walking and decreased pain until it stopped working for me.  Crap!

Finally, after two spots showed up on my MRI, I really began to believe I had relapsing and remitting MS.  Two neurologists said, "Yes, but get a second opinion."  

I finally landed at the Swedish MS Center in Seattle with one of the best MS specialists in the region.  He reviewed all of my records and my carefully completed ten page questionnaire.  My partner and I waited impatiently in his office.  He came in and said, "I can say for certain you don't have MS."  He went on to say that if I had symptoms like this for as long as I had experienced with MS my MRI brain exam would look like Swiss cheese which it does not.

This actually made sense to me.  So, I asked what he thought was the problem.  Brilliantly, he said, "I believe you have nerve damage of unknown origin."  My partner and I looked at each other.

"Well, of course, that is great news.  But, what caused the nerve damage?"  No clue.  We walked out of there chanting "NDUO.  NDUO."  Nerve damage of unknown origin.  "What the fuck does that mean?"

What it does mean is it seems to be gradually getting worse.  Like a feather slowly falling to the ground on a light breeze.  Back and forth, up and down, slowly, inexorably falling to the ground.  Not there yet, little feather, keep floating as long as you can.

And that's where it lies.  I spend my time appreciating the life I have now.  I am mentally healthy.  My partner and I are reaping the relationship benefits of 30 years of hard work.  We live on a lake in a beautiful part of the country.  We have successful careers.  We pinch ourselves daily at how lucky we are to have such a good life.  

I work really hard to stay in the here and now and not try to divine the future.  No clue as to what NDUO may lead to.  But, right now, I'm lucky for every moment, every act of love and kindness, every understanding of where my life could have led but didn't.

Sometimes, my partner worries about me, and my daughter worries about me.  After reading this, you maybe worried too.  But, don't be.  I keep plugging along, because I Don't Give Into the Pain.

I love my partner, my daughter, my dog, my job, my heart, and my passion for life.  There is nothing else to dwell on today.  I don't own the future.  We can all only take it as it comes.

To life.  

L'Chaim.

8/13/16

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