Back on the Horse….it feels like a rocking horse.

So it’s the end of day 3 at work.  New position but something I know I’m good at.  Facilitating trainings and engaging groups of adult learners.  I can do this in my sleep.  I can do this from my bubble!  Today I had my first facilitation.  It all felt foreign.  Maybe it was the topic, maybe it was the group, or maybe I can’t do this effectively from the bubble.  I thought that once I jumped in full time, full pace, that I would be able to somehow, miraculously or other, step out into the world.  I have felt small increments of freedom but they are but teases to me.  I want out!  I want to breathe the air of the world of others.

And then there is this overwhelming exhaustion.  I still have trouble believing that it takes so little to drain me.  But I am back on the horse and I’m  gonna ride!  What’s the worst that could happen, really?  Things can only get better!



The great camping trip

I had been waiting, and planning, and now came the big camping trip.  Oh my.  I found that I was  not nearly as organized as I used to be.  For me, most of the joy of camping comes from planning and packing. This time I found it to be overwhelming and anti-climatic.  And not very efficient.  And laborious.  By the time we hit the road, we were late, I was frazzled and it was not a good start to the trip.  I let go and moved forward.  We reached the campground and I was happy again, thinking of the rituals involved with setting up the tent and the campsite.  I soon realized how the rituals would be impacted by my one-handedness.  But  I had my boy and my good dog Paulie and the fresh, crisp outdoors.  We made a fire with the kind help of our neighbor Leon (whose wife is a teacher at a private school).  We all snuggled in, (me, my son, his friend Zane and the dog).  Crawling into my sleeping bag was harder than I anticipated.  I finally managed and fell into a long hard sleep.  

I was anxious to start the day with coffee, pancakes and camping excitement.  Thank God the coffee went smoothly.  The pancakes, not so much. It was a lot to get around.  It was a lot to sit and relax.  It was a lot to just crawl into the tent at night.  But my friend Lydia pointed out that at least I was DOING it.  That was before I fell into the campfire!  Yeah me!

As soon as I got home I was planning my next trip so I must have , subconsciously had some fun.   My big dog Paulie had great fun.  Here’s to the next trip!

Also Known As…

I assured my peers and therapists at rehab today that I would not identify anyone in my blogs with real names.  The didn’t seem relieved s much as intrigued and then proceeded to use most of the remaining group time trying to pick out alias for themselves!  So let it be documented that “Silk” and “Satin” are not really the names of therapists at Sacred Heart Brain Injury Rehab.  (Go figure)  We giggled for most of the group time.  I think the new guy was a little under impressed.  We called another staff member at home, I’ll call her the “Singing none”, to sing to her.  We sang Happy Birthday and when I mentioned that I didn’t know it was her birthday.  Satin and Silk both answered that it wasn’t, they were just messing with her.

So how this helps the cognitively disadvantaged in rehab is beyond me but we were having fun!


Golden Dragon

I met a golden Dragon once. She was the most beautiful dragon I had ever seen. She flew so effortlessly like she was dancing.  The first time I tried to approach her, I was foolishly awkward and she breathed fire.  I knew she wasn’t trying to kill me, just make me conscious of my awkwardness and her power..  I swore not to make the same mistake again but the next time I tried to get close to the dragon, my awkwardness raised it’s awful head.  I waited for the fire but it never came.  When  I made eye contact, I could see the compassion in her eyes.  She recognized me.  She knew me.  She had felt that awkwardness before too and it made her compassionate instead of impatient.

I tried for quite some time to tame the dragon.  I got close, she never breathed fire at me again,  but she would not be tamed.  It was enough to have gotten close though.  Not everyone gets to become friends with a golden dragon.  I saw her soft side.

Years later a killer would try to slay her, but the dragon is so strong and good that the killer could not finish her off.  She only got stronger.  No matter how many times the killer tried, she survived.  She survives to this day in a beautiful city by the ocean.

I will never forget that golden Dragon or the time that I got to spend trying to tame her.  She was much too powerful for me.  But I will see her again and know that we are connected and that is beautiful to know. “I know a bird can fly; I know a fish can swim; I know animals can run. Creatures that run can be caught in nets; those that swimcan be caught in wicker traps; those that fly can be hit by arrows. But the dragon is beyond my knowledge; it ascends into heaven on the clouds and the wind.

It is a beautiful thing to watch.  A gift really.


What About Sex?

I know, right?  My discharge papers from the hospital clearly stated, “No sexual activity”  as if to add insult to injury!  Not that I’d been having luck in that department for months, and my mother was going to be staying with me for several weeks, but still, to have it as medical advice!  In writing!!!!!  Ahhhhhhhh!  So, apparently one of the days I wasn’t at therapy, the group discussion was on sex after brain injuries.

When I returned and saw the “What about sex?” folder I asked what the discussion was about The summary was:  Go slow, talk a lot, describe what you want.  How is this any different than good sex from before?  Oh well, When I asked about why I was advised against having sexual activity upon discharge, she said it was usually a heart issue.  Since I climbed 303 steps in July, I think my heart is good.  I guess I am cleared for sexual activity, yeah!  And the crowd goes silent!

So I have been thinking of skin.  I am a big fan of skin. Particularly skin on skin.  It’s good, and it has given me some hope and has begun to free me from the past.  So I am on a quest for skin.  And what about sex?  Perhaps that will follow, but for now, skin and touch will be very nice.  Ad I won’t take it for granted.



You look Different today!

So I am really getting better with my endurance and stamina but Mondays are still hard and I am usually pretty tired in the mornings at rehab.  First thing in the morning is cognitive thinking with group.  We are getting a lot of new “customers” in the program and today the group room was packed.  The group leader left for a few moments. We sat in silence, the old timers and the newbies, waiting. Waiting.  Several staff members walked by and asked who was running the group.  Another “who the heck is in charge” day.  Then the group leader returned and cognitive thinking started.  In the middle of an activity, my favorite aide came in and looked at me and said, ” What’s different about you?  You look nice today.”  I don’t know how to respond some days.  All I could say was “Thanks”

So I’m home now trying to clear my mind with some mindless TV.  I’m still exhausted but happy.  And my dogs are relatively well behaved  Life is good.

Names are changed to protect the innocent, and the guilty!

So I promised a post about rehab.  Here it is.  Outpatient rehab has become a revolving door of Patients.  There are too many people who have experienced some kind of brain injury.  I never realized!  

Stroke alone kills almost 130,000 Americans each year—that’s 1 out of every 19 deaths.

On average, one American dies from stroke every 4 minutes!

So there are a lot of us out there.

I wouldn’t wish this on anyone.  In addition to stroke survivors, there are patients here who have experienced other types of brain injuries from car accidents to brain injury after seizures or surgery.  Our ages range from early 20s to 70s.  Our backgrounds are just as varied and yet the common factor of brain injury bonds us in a unique way.  I have written about my early humiliations and powerlessness but the day to day experiences in outpatient have humiliating aspects as well.  We, as grownups, must be supervised and accounted for constantly.  Walked to the bathroom, sat with during lunch, and of course it is based in protection but there are times when most of us just want to go out and take a walk over lunch.  Take for instance George (not his real name), who was relatively new to group.  I happened to notice him walking down the street alone and wondered if staff knew he was gone.  (The day before, walking with staff he nearly walked into traffic!)  When I mentioned that I saw him, there was a mad rush to the door to chase and capture George, who must have taken many a walk alone in his pre brain injured life.  I hope he gets back to that.  

Please visit the above listed site to get more information on strokes and prevention.  I was lucky to be with someone who recognized that I might bbs having a stroke, notified paramedics and allowed me to receive prompt treatment.  He may have saved my life.  I’m sure it kept the stroke from being more severe!  Angels, everywhere!

I’ve Looked at Clouds that Way

I’m sitting in morning group minding my own business waiting for something to start. And something did! One of the assistants came into the room singing. I think it was singing. Anyway, she’s asking who knew the song (I did). And who wanted to sing along ( I did not!) then she continued through a list of songs asking the same questions. She got to “both Sides Now” and was amazed I knew the song. Back before the Stroke I actually played the guitar and sang. “both Sides Now” was one of the first songs I learned and sang all the time.

As I sang along (don’t judge). I realized what a lovely song it really was and how differently it hits me now.

“Tears and fears and feeling proud,

To say “I love you” right out loud

Dreams and schemes and circus crowds,

I’ve looked at life that way.

Oh but now old friends they’re acting strange,

They shake their heads, they say I’ve changed

Well something’s lost, but something’s gained

In living every day.

I’ve looked at life from both sides now

From win and lose and still somehow

It’s life’s illusions I recall

I really don’t know life at all”

I guess I thought I did at some point at least glimpses of knowing life, knowing love, understanding it all.  “But now it’s just another show, You leave ’em laughing when you go And if you care, don’t let them know, Don’t give yourself away.”


The day it all changed

On February 12, 2014, my life changed forever. I experienced a stroke which effected my left side and have hemi-paresis as a result. With help from phenomenal therapists, I have begun walking and getting back some movement in my arm and hand. Some of the people in the photos on this website are directly responsible for motivating and inspiring me to never give up. Honestly I really wanted to though. Still do some days. I feel alone and afraid most days. Thank god for the serenity prayer and “one day at a time”. Thank god for good friends, family and some amazing strangers. When I am recovered I swear I will find a way to repay my debt. I swear.