Sunday, January 14, 2018

TM

I feel like screaming. Literally, growling or yowling, and wonder if that would help at all. After two weeks of managing all right, my legs are killing me and walking is nearly impossible. The damnable thing is that I have no idea why. 
It’s not like I did anything terribly different yesterday than I had on any of the previous days. I did walk a short way through the woods with my dog buddy for the third time in four days. I felt okay, relatively, when I went to sleep. But, I woke up at five this morning in pain and uncomfortable, and my walking is in the shitter. 

I had been feeling more hopeful. After our trip to Oaxaca, Mexico, in December, I had an appointment with another neurologist (one I had seen many years before).  I was not able to walk well in Oaxaca. This was unfortunate because as much as I love Oaxaca it is not the accessibility capital of the world. 

In any case, Ronnie and I decided we were going to pursue a diagnosis for me no matter what it took after all this time.  I wrote out my “Chronology of an Illness” with all the details of years of frustration. So, my request for him was written down as:

“What I am asking for:
  • Updated MRI, with plan for yearly MRIs to monitor
  • Diagnosis and/or treatment plan
  • Referral for electric wheelchair
  • What would you do if I was your wife?”

The neurologist looked at my history, what I’d written, notes from other neurologists, test results, all of it, and popped off with, “Have you heard of TM?”  

Ronnie and I looked at him and shook our heads no.  He said, “It’s Transverse Myelitis.”

In unison, we said, “What’s that?”

He went on to explain it’s a autoimmune disease that started out when I was much, much younger either from a viral infection or trauma. Ronnie and I exchange knowing looks. Trauma from childhood is my middle name.  It attacks the myelin coating of the nerves effecting the central nervous system.  This was in keeping with what we have known before. 

Then, there was a good news, bad news situation. He said the good news is that it hadn’t turned into multiple sclerosis and won’t now due to my age. Also, the autoimmune issues settle down as you get older. (I just proudly turned 60 which he noticed.)  The bad news was my body’s ability to cope with the previous nerve damage lessens. 

So, there it is.  As for electric wheeled devices to help one who can no longer push themselves?  Only if one can’t get around their own house. For work or community, it’s on me.  And, no, there’s nothing more he could do for his wife or daughter or brother or uncle or aunt or cousin. But, getting exercise is good for you. I haven’t figured out entirely how to do it without causing a flare with the related incapacity. 

And, here I am.  Extremely uncomfortable with no known reason why, trying not to think of what tomorrow will bring whether good or bad.  Because, tomorrow is of absolutely no help for today.  Thus, I think I’ll go brush the dog out on the deck and look at Mt. Rainier.  I don’t have to stand, and it’s exceptionally rewarding in its accomplishment.  It makes the dog very silky, and the house less hairy.  What’s not to love?

L’Chaim. 

Joceile 

1.14.18

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






Saturday, January 13, 2018

I Nearly Lost Her

At 14, I wanted to kill myself.  I thought about it constantly but I just couldn’t throw caution to the wind, pull the trigger, or take the whole bottle of pills.  Other than my friend, Sasifraz, who was a mystery voice in my head, Suicide was my constant companion. 
To be sure, there were times when I took a calculated risk by taking the rest of the bottle of pills. It was never quite enough to take me out, though. One time I did end up losing three days because of the overdose. Sadly, it was harder on the people around me who were actually conscious than it was on me, because I had very little memory of the event.

I was 21. I remember Elizabeth, my partner at the time, yelling at me and pushing me down the hallway out to the car to go to the emergency room.  I remember the nurse handing me some type of tube like container to get urine thinking I was male.  I went and got a cup to give her.  I remember being in the hospital bed with Dr. West talking to me and me crying about my parents.  

The worst thing was that Elizabeth and I were supposed to move that week.  She was really pissed which I understand.  I seemed to have forgotten about the upcoming move. I remember going to work on the third day because I was worried about losing my job.  My boss asked me if I was okay.  She said I seemed inebriated.  I think I went home.

There was another time after that when my stomach was pumped.  I had taken a shit load of sleeping pills and went back to bed later in the morning.  Unfortunately, my mother dropped by unannounced.  I couldn’t stay awake.  My mom thought I was sick and left.  Elizabeth knew I was drugged and once again yelled at me to stay awake as we drove to the emergency room.  Why didn’t she ever call 911?  I guess we thought it would cost money. 

There were some other times involving my wrist and a razor blade.  At 17, I was in the emergency room shaking after they stitched up my arm.  The nurse said, “Well, if that doesn’t kill you...” gesturing at my arm, “this will.”  

I said, “This what?”

She said, “The drugs you’re on.”

“I’m not on drugs.”

“Oh,” she responded and instantly started being nicer to me.  It appeared that people who take drugs don’t deserve compassion but mental patients do.  I was grateful I fell on the mental patient side.  The next day I went to the psych ward at UW Hospital.  

That time I was terrified that I was a lesbian.  At a younger age, my mom told me she went to high school with a young woman who jumped off the Narrows Bridge.  Mom said she jumped off just because people thought she was homosexual.  I took that to mean it was better being dead than gay.  I don’t remember if “gay” was even in my vernacular then.

There were many, many more times with the stitches and the ER.  So many times that I’ve long since lost count.  There were two issues for me around self harm.  One was the ongoing internal discussion about suicide.  The other was the intense anger turned inward.

Because my anger was turned inward, I did not harm other people.  I acted out but mostly toward myself.  I was deeply disturbed and angry about the abuse and harm I was subjected to as a child.  I was so angry that I wanted to kill somebody.  But, my belief system did not allow me to harm others.  I believed the only thing I owned was my body.  I believed that my body was the only thing I had a right to harm.

It is a sad, sad point of view.  However, it kept me from committing crimes and going to jail.  Instead, it lead me down the garden path of mental illness.  The difference between being a criminal and being a mental patient is just a quirk of fate.  Whether the anger goes inside or outside, it is still profound anger.  That is partly why men are more likely to be in prison and women more likely to be in mental hospitals.  We are trained that way.  There maybe some biological imperative.  I don’t know anything about the science.

My desire to kill myself or hurt myself led me through harrowing times.  It hurt my family, my partner, and my daughter.  Obviously, it hurt me but that is not the burden I carry.  I nearly lost Ronnie.  She hung in with me until finally I was so far into depression she said, “I can’t live with suicide as your secret mistress.  I need you to stop that affair.”

It was a moment where our relationship hung in the balance.  At that point, I heard voices yelling at me to just bail.  I couldn’t dream of letting go of my suicidal fantasies.  At the start of the year that nearly destroyed us, I chose suicide over Ronnie.  I ask myself, “How can that be?”  But, the answer is that nothing was clear at the time.  It only clarifies on reflection.

At that point, Ronnie and I had been together for 21 years.  She had hung in with me through thick and thin.  Initially through four years of an on again, off again need to use a wheelchair.  But, the mental illness part was always there.  It always had been.  It was not like it would just go away.

I went to counseling faithfully every week.  I worked part-time for the state.  Our daughter was with us half of the time.  I had gone through three months of being off work due to depression while I switched state agencies in 1995.  There were times Ronnie told me later that she wondered how she would make it through to our daughter leaving home.

The final crisis happened after our daughter had graduated college.  I became disconnected from everything but work.  Ronnie’s parents had died.  My grandparents had died.  I was just obsessed with killing myself.  We had long since agreed that I would not cut myself.  Unfortunately, there were a lot of other ways to hurt myself including scratching and biting.  

After I chose my suicide mistress over Ronnie, we tried couples counseling.  But, I just fell further and further into a deep depression.  Since, I thought we had broken up I went back to cutting myself.  It entailed several self directed visits to the ER.  Finally in September of that year, I was hospitalized.  After I got out, I got hooked up with an exceptional psychiatrist.  Dr. McNabb actually listened to me and worked with me as a partner.  

I got a new therapist named Steve.  I had never had a male therapist before.  He was an extremely gentle and loving soul.  He taught me about Powerful with Love.  I was hospitalized again at Thanksgiving.  When I got out, I kept working with Steve.

Ronnie and I continued to live together.  We had a basement apartment that I stayed in.  I spent half the week with a friend and her family so that Ronnie and I could have a break.  I looked at an apartment once thinking that I should move out. It was in my price range. I went in. It was dark with an upstairs bedroom. I thought, “I couldn’t hope to not die here by killing myself.”  I didn’t look again after that. 

Ronnie was looking for a house too. Neither one of us really wanted to be apart. She was looking for a house with a mother-in-law apartment for me, or a small attached house, or a little house just down the street. She wasn’t having any luck. 

We were still uniquely suited to be together. In the summer, we had a garage sale. We worked like a well oiled machine. Ronnie, who was thinking pretty clearly, thought, “Really, we can do this so well together and we have to break up?  Really?”

Ronnie was in terrible pain.  I was mostly out of it.  One day, Ronnie asked me what I wanted.  I stuttered.  “I want... I want.”

“What do you want?  I’m serious.”

“I want more of the Great Grey Nothingness,” I responded.  At that moment, I knew it was true.  I just wanted the great grey nothingness that came seductively with depression. 

Ronnie had been saying I was depressed for years.  But, one day, she said, “You are clinically depressed.”

Like an idiot that comes to, I responded with, “Oh, Clinical Depression.”  As if to add, “Why didn’t you say so.”

“That doesn’t really mean anything diagnostically, you know.”

“Maybe not.  But, it means something to me.”  Having a name for the severity of what I was experiencing was helpful to me.  It didn’t matter that it was diagnostically inaccurate.  I finally got a glimmer of the huge problem that was enveloping my life.  And Ronnie’s life.

As winter began to withdraw that year, I slowly started to come out of my self imposed prison.  Powerful with Love work with Steve included sitting in my loving space and sending that love far across the world to someone, somewhere who needed it.  It gradually expanded to me sending the love to some past incarnation of myself.

Also, the medication that Dr. McNabb gave me started having an affect.  I continued to hurt myself regularly but the fog was starting to clear.  I spoke to Steve about it.  He said, “Ah, the assistance of medication.”  But, we also continued to work on the love piece.  

Steve suggested I look at pictures of the folks I loved.  I did.  I looked at pictures of my daughter, my grandparents, and the friends of my youth.  At some point, I stumbled on the videos I had taken of our daughter while she grew up.  I was particularly taken with her earlier years at three.  I would play a few minutes of the video before I went to bed at night.  I would feel the love I had for my daughter.  Gradually, I would reach for the video whenever I felt really bad.  It could be several times a day.

Then, one day, I discovered a small part of the video that included Ronnie.  I was filming my daughter when Ronnie came in the room.  I didn’t have much video of Ronnie because filming her wasn’t her favorite thing.  As she came in the room and laid down on the couch to read, I caught her.  I swung the camera her way and said her name.  She looked up at me with an astonishing smile filled with genuine love for me and said laughing, “Hi, Joceile.”  I saw it.  In that moment, I saw she loved me.  I remembered she loved me, and I loved her.  I played it over and over again.

I remembered she was not my enemy trying to take away my suicidal mistress or making me someone that I wasn’t.  She just simply loved me, and I had forgotten.

Around the same time, we were visiting my daughter.  My daughter and I were lying on the floor joking about something.  She traced a scar line along my wrist.  She said to me, “You can do what you need to, but you can’t leave me.  Because, then I will feel like I did something wrong.”

At that moment, I knew I was done.  I couldn’t leave my daughter or Ronnie.  I was done with the great grey nothingness.  I was done with hurting myself.  I was done with Suicide.  It took months of talking to Ronnie to begin our recovery.  I needed to listen to her.  To listen to the hurt my illness had caused.  To listen, respond without defensiveness, and listen some more.

I wanted my Ronnie back.  I remembered the love in her face when she looked at me in the video so many years ago.  I knew that I had to make amends.  

It has been seven years now.  Ronnie and I have worked hard to rebuild our relationship.  I have worked hard to listen to her instead of the voices.  It is not easy.  It is not quick.  But, it is the most important work I have ever undertaken.  

We will always be recovering from that time.  We refer to it as the dark time.  Few weeks go by without our referencing it.  It was terrible.  It was catastrophic.  Sometimes, catastrophe can be the opening for healing.  It is an opportunity.  It is not without difficulty.  It is a challenge.  Knowing how close we came to losing each other pushes us to work hard to address issues over and over so we can stay together.

I nearly lost her.  I am glad every day that I didn’t.  It makes these older years so much sweeter.  Something to be savored and grateful for daily.  Thank you to the power of love.  And, Ronnie, I love you and me too. 

L’Chaim.

Joceile

12.5.17