Grief and other socially unacceptable attitudes…

I have had a number of lovely discussions with a friend and mentor about grief.  “Of course we should grieve the things we have lost.” He says.

He says it so simply, as though it were a given.  Every time I hear it my brain erupts into hundreds of little voices, hungrily digesting or spitting out the simple truth behind his words.  The chaos this phrase causes inside of me seems ridiculous because of course we should grieve the things we have lost.

Why don’t we?

I learned, as a weird and often rejected child, not to show the sorrow and hurt I felt when a person or group dismissed me.  If I showed them their words stung, they won.  If I hid it inside and pretended not to care, saving my grief for the privacy of my diary or best friend, I won.  I soon learned to build my entire life on this simple principle.  Do not show people they have hurt you.  Do not share your grief with people you don’t implicitly trust.

I remember one day in high school when a friend gave me a great gift.  I was dating a boy in my choir, one who had asked me to keep our relationship secret at first and then threw a nasty public scene when I ended it.  I mean nasty, in front of everyone, calling me a whore, etc.  I bravely stood up and fought back and showed nothing but disdain for him and his sharpened steel tipped words as they ripped through my skin and bled me in front of my entire social group.  A friend stepped in and took me aside, saying “C.Mon, he’s not worth it.”  He walked me to his car and told me to hold on for a few more minutes.  Then we drove around the block behind a building and he said “Okay, now you can cry.”

This person had taken me to a safe place away from the prying eyes of everyone who would have taken pleasure in my pain and given me permission to grieve.  I grieved.  I cried like to world had ended, not because I had broken up with a boy, not because I had been so publicly renounced, but because I had someone in my life who had offered me protection for my feelings.

Over the years, each time a relationship ended and the friendships I made were divided, I grieved for the lost friends privately, showing nothing but understanding and acceptance for those who decided to toss me aside and stay connected with the other person.  I shared my grief in journals, with one or two people, or sometimes not at all.

My conversation with my mentor, his simple acceptance that we should all grieve what we have lost, opened up a maelstrom in me.  I have spent the last year trying to pretend I accept and understand the behavior of the people I called friends during the last ten years of my life.  People who chose to toss aside the relationships I built with them and never even bothered to ask me what happened.  People who cared so little about me that they just threw me away.

Of course I should grieve what I have lost.  I have lost the illusion that I mattered to these people.  I have lost the belief that they cared about me. I have lost the certainty that the time and effort I put into them, listening to their problems, helping them with solutions, loving them, would be returned.  It won’t.  When the shit hit the fan I was tossed aside in moments.  No questions asked.

Just as I mourned the loss of connection with the friends I had before my marriage, the friends I didn’t get to spend time with because I was busily putting energy into my husband’s group of friends,  I mourn the loss of connection I had with his friends.

However, I have another nugget of simple truth to get me through.  “Of course I grieve the things and people I have lost.  You have to.” He says over coffee. “But I also have to realize that there are other, sometimes better people and things in my life now. “

The secret.  Grieve, and then let go.  You can’t let go if you don’t grieve.

So today I shed the tears my younger bullied self so bravely taught me to hide.  I shed them openly and honestly. I grieve here, in a public forum, no building to hide behind.

I grieve the loss of the easy banter I had with my husband’s friends.  I miss the group outings, the parties, the shared jokes and experiences. I miss feeling they were assholes for sending one person into a movie theater line to save the space for eleven of us and knowing every person behind us hated us as the rest showed up.  I miss arguing politics with them, celebrating holidays with them, sharing stories with them.  I miss every single one of them, but mostly I miss them all together.

And I am letting them go.

Sometimes the ups, outnumber the downs.

The new super-powered ibuprofen I was given seems to be bringing the shadowboxer down to a dull roar.  I am still oddly aware of the right side of my face, in that it feels slightly more electrical than the left side, but it’s not making me cry anymore, so Yay!!

In other news, I got a new job this week, which is wonderful and super exciting.  I will tell more details when I am actually plugging away at it.  I am also writing a book on Evidence.  So, that should be a fun combination of time consuming activities that require me to have a normal appearing life, along with the lowering in pain necessary to do it! So Yay!

So despite the dire sounding nature of the illness I have and the complete upheaval of my family by divorce, things are shining pretty over here for a change.

Move ‘em on, head ‘em up, Head ‘em up, move ‘em out

This whole “lead a normal life” regimen is really hard.  So far I am mid-transition with my medication which means I am getting the sharp face punches more frequently.  The good news is they last a very short time and I am learning to breathe through them.

Still, the only way I can keep on with the normalcy prescription is to just keep moving.  The first day I cleaned my entire living space from head to toe, reorganized my files and office, cleaned my son’s space, washed and folded laundry, waked to campus, taught class, then hung out with the kids, doing homework and such until bedtime.  Ten o’clock, my chosen bedtime, has never been so happily greeted.

The second day I spent in search of the icky cat pee smell and spent two hours scrubbing hardened cat resin off of various parts of the house where my twelve year old had failed to sweep up spilled litter when changing the catboxes.  Afterward I mopped assiduously. For exercise I spent 45 minutes on the exercise bike. Finally, I worked for a few hours, cooked dinner and did dishes before helping the kids with schoolwork, baths, and bedtime.

By the time the third day rolled around I had the hardest time getting moving.  Every step seemed a struggle and every action a burden.  All I wanted to do was lie in bed and watch t.v. or sleep.  Instead, I got up.  I got the kids ready for school, made myself breakfast, and did thirty minutes on the exercise bike.  I worked, applied for jobs, reviewed my current cases and did laundry.  After school I took Marlena to the doctor for a knee injury at school and once home ran errands for her and made sure she was comfortable.  When she and Ollie left with their father I did rest some.

I keep thinking that if I just keep busy I will get used to it again.  I used to have tons of energy and was able to handle dozens of complicated things every day while still managing to be a good parent.  I even did this with migraines.  Heck, I’ve had ‘em since I was 12, so learning to cope with them was  a necessity.  I succeeded through law school with more than 16 headache days a month and a small child.

Still, despite the prescription to just keep moving, I can feel the tiredness pouring from my body.  It’s inclination to lie down and sleep is powerful, fed in part by the three or four different medications I am on that cause drowsiness.  At this point, it’s sheer will, stubborness, and the love of those around me that keeps me going on this new lifestyle change.

Back to life, back to reality.

Dealwiththis

That’s how the doctor’s edict is feeling these days.  I am running from the morning until the evening just trying to live a normal life.  I am job hunting, working, cleaning, reading, mending, parenting, seeing doctors, and eating like a normal person.  So far it appears that I can live a moderately normal life, even if I am really excited when bedtime arrives at ten.

In one week I start the new medication to handle the nerve pain.  Until then it’s reset my circadian rhythms to see if it helps make the headaches go away.

I have to say I am at least distracted from them by doing.  I managed law school with migraines and I always thought it was because my brain just compartmentalized the pain into a tiny corner and focused on Evidence.  I think the past few years there has been less of an ability to compartmentalize.  My hope is a regular schedule and a non-coma inducing treatment will result in me once again being able to kick ass.

Fake it ’til you make it.

That is basically my new medical plan.  For now at least.  It turns out the fancy drugs they gave me to assist in fighting off the shadowboxer caused suicidal ideation.  Long term use of opiates does the same thing for me, so I am used to randomly being ready to hang up the towel when my brain chemistry is altered by various medications.

So I called my doctor and used the magic words.  “Dear Doctor So and So, I want to drop a piano on my head. Please advise”.  I had an appointment the next morning where he took me off all my currents medications and started me on all new ones.  He also ordered the following:

Go to sleep at the same time every night.

Wake up at the same time every day.

Eat breakfast, lunch, and dinner at about the same time every day.

Exercise every day.

Work at the same time every day.

He basically ordered a “Fake it ’til you make it” prescription.  I started it yesterday.  It was grueling.  I wanted to fall asleep at noon, so instead I spent two hours cleaning.  I ended up going to bed at ten.  Ten took forever to get here.

So, today I woke up to get the kids to school. Stayed up after seeing them off, made myself eat a healthy breakfast, and am now sitting down to work.  I assume someday this routine will reset my circadian rythyms and seem more natural, but for now, it feels a little like water boarding.  I keep forcing myself to keep doing stuff until it’s time to go to bed. 

 

Haiku Friday

Don’t leave me she said

as though reading in my face

the deep pain I hide.

Promise me she said

I need you to stay with me

You are strong enough.

I know it hurts mom

But you can do anything

You can fight this thing.

Promise me she said

promise me you will wake up

you will fight and win.

Promise me each day

you will keep pushing forward

you will grit your teeth.

You will not give up

If tired take the time to rest

If saddened cry.

Whatever you do

promise me you’ll stay with me

you are my best friend.

 

 

 

 

 

The shadowboxer *amended

I have been tentatively diagnosed with trigeminal nueralgia. It’s a clinical diagnosis, meaning they won’t know for sure until we rule out everything else, but the signs are pointing to this baby as the likely cause of my issues.

Trigeminal neuralgia is traditionally called the suicide disease because of it’s recurring, unpredictable, and intense episodes of explosive pain.  I have decided to rename it “The shadowboxer”.

When I was just out of high school I got a job working at the Wendy’s on Colfax and Emerson.  Each day during my shift this homeless man would walk past the windows in our “sunroom”.  He was always boxing an invisible opponent, which on east Colfax isn’t the most uncommon sight ever.  However, I would see this guy get hit back by his invisible opponent.  His head would snap back, he would buckle at the stomach, sometimes he would even get knocked down.  Every time he would stand, reposition into fighting stance, and keep on punching.

Well now I have an invisible opponent of my own.  I get hit or kicked in the left side of my face several times a day.  The rest of the day I spend feeling as though my face has a headache.  My left cheek always hurts, my left eyebrow is sore to the touch.  I have decided I will also continue to stand up, reposition into a fighting stance, and keep on punching.  Hence the name change.

I never know when these boxing matches are going to occur.  The wind can set them off, sounds can set them off, trying to sleep on the left side of my face can set them off, chewing can set them off, etc.

To be frank, I am terrified to leave my house.  I don’t want to become an agoraphobe, but the thought of being out and about when one of these matches comes on is scary.  I am embarrassed by them, they turn me from a smiley fun person into a tense curled up ball of pain and misery.  They make me cry.  Sometimes they hurt enough I have to bite onto something to stop from screaming.  So imagine my horror at the thought of doing this at a party, during the class I teach, while picking my children up from school, etc.  I don’t cry in front of people easily.  I hate crying in front of people.

So, how did this all come about?  Why the sudden change from headaches to the Shadowboxer?  It turns out that people with trigeminal neuralgia can be misdiagnosed as having migraines for a long time before the traditional symptoms manifest.  It also turns out that trauma can cause an onset of otherwise dormant symptoms.  Well, three or four weeks ago I fell on the ice and hit my head.  Three or four weeks ago a tow truck ran a red light and T-boned my car.  I have no medical training so I don’t know if that is why I am suddenly where I am, but I can tell you those events coincide with the pain timeline.

How can you help?  Please don’t offer me advice, unless you have trigeminal neuralgia.  Please do offer me love.  Please let me know if you have somewhere I can retreat to at an event you are inviting me to, if an attack occurs so I don’t have to worry about embarrassing myself and everyone else at your party.  Please reach out to me, visit me, send me notes.  If I cry when we are talking, please just let me cry.  Please don’t tell me how much better it’s going to be.

Trigeminal neuralgia has been described as one of the most painful and debilitating diseases in existence. I got to have that conversation in the medical office when your doctor looks at you, puts on his “Bad News” face, and says “I can try medication and if that doesn’t work, surgery, but if this indeed what you have, it’s a lifelong, debilitating condition”.  So I am not really wandering around feeling like things are heading towards better.

What I need is the ability to express that.  I understand the first knee jerk reaction to someone saying life sucks is the sun will come out tomorrow.  I get it.  It’s a reaction I initially have too.  However, a good friend of mine long ago taught me better things to say.  Here are some examples, if you ever find yourself at the opposite end of anyone facing anything like this, like me.

1.  That sucks, I’m here for you.

2.  I love you.

3. I am sorry things are so hard for you right now, let me know if you need anything and I will try to help.

4.  Hug

5.  I will totally come hang out with you where you are the most comfortable.  I will not be mad at you if you can’t make it to my parties etc.

6. If you want to spend the day watching movies in bed, I will come do it with you.

7.  I will not be embarrassed if you have an attack while we are out.  I will try to get you somewhere you feel safe and I will wait it out with you. Fuck everyone else in the room, they can just deal.

Also Please bitch to me about the things that are going wrong in your life.  I don’t care if you think I am worse off, I care about you and I want to be a person you can talk to. 

Believe me, “well that sucks” is exactly what you need to hear sometimes.  I am working my ass off to get better, to stay cheerful, to keep going.  In the morning I start the day with Pink’s Try, because I do just have to get up and try.  Every day.  When it hurts too much I curl up with my mom or dad or cat and I cry.  I am doing everything I can to get better physically and to make it through this mentally.

But I need you guys.  I do.  I just can’t always go to you, call you, make contact with you.  So please continue to love me even as I seem to disappear from your lives.  It’s not my intent to leave you.  I just have a really scary new opponent in my ring and my match is far from over.