Pray Attention

Written October 10, 2010 8:40 pm

Anita had a quiet day today.  Sunday is a day of rest at Shepherd Center, i.e. no therapy.  She was off the vent at 6:00 am this morning.  She continued to rest until 9:00 am, whereupon, she ate breakfast, dressed, and got up.  Anita participated in a Skype video with family members and took some phone calls from friends.  She then ate lunch, followed by attendance to a non- denominational church service. She remained up in her wheelchair for the afternoon, read the latest Caringbridge entries (Thank you for your many wishes and prayers), watched some TV and ate dinner.  She retired to bed and remained off the vent again until 10:00pm.

Church.  John and I decide to make the journey to the 4th floor and attend the service.  I am able to drive myself there as long as someone else pushes the elevator buttons.  It's "freeing" to get away from the Neuroscience Unit, which I affectionately call, The Island of Misfit Toys.  It takes me awhile to back into the elevator.  My neck stiffness makes it difficult for me to maneuver in small spaces.  Shepherd has an awesome "fix it" staff that repair corners and elevator walls scraped up by unskilled drivers.  I figure I am good job security for these engineers.

The service is conducted by volunteers from several churches around the Atlanta area.  There is a piano, music, and a message just like real church.  Some Sundays there is even a choir. The worship is attended by many.  A few wear helmets and stare blankly into space. Several patients are in power chairs, like me, and some are able to push themselves in manual chairs.

I find it hard to focus on the sermon.  The music is nice, but I am distracted by the "congregation".  The ventilators keep time with the music. I look around at the sea of patients and visitors.  Most are younger than me. I can't help but think of all the stories contained in this room.  I wonder what has happened to all these folks. I want to know what they were like before their accident or illness.  What do they miss the most?  How are their families?  Their pets? What have they lost? What have they found? And, what are their hopes?  Chances for recovery?

The music stops.  The silence brings me back. The message of the sermon today is hope. I glance around again and see some smiles. We are all here.  There is hope.  If I had a magic wand, I would wave it and heal us all.  But I don't.  So I'll just pray.  Now...for just a little while.

The Shepherd Center

Written October 9 2010  8:54 pm

Anita was again taken off the vent at 6:00 am this morning.  She dressed and ate breakfast.  She had an Occupational Therapy (OT) session in the morning, focused on trunk control.  She then had lunch, and then had the afternoon "off".  She remained up in her wheelchair for the afternoon, took another 'trip' around the Shepherd Center, read the latest Caringbridge guestbook entries, took some phone calls from family and friends, watched some TV and ate dinner.  She retired to bed and remained off the vent until 10:00 pm, another 16 hours off the vent.  She will repeat the 16 hours off the vent on Sunday, and as previously noted next steps regarding ventilator weaning will be evaluated on Monday.  Sunday is a day of rest at the Shepherd Center, i.e. no therapy tomorrow.

The Shepherd Center is amazing.  Both from the perspective of a patient and from that of a former Occupational Therapist.  There is a full size recreational gym here for wheelchair sports (which are incredible to watch).  There is an Olympic size swimming pool, where the occasional scuba diver is spotted.  Family areas abound.  Some have pool tables.  Others have areas to play games with kids, get free coffee and snacks, or just watch TV (lots of football to be viewed here in Atlanta).  And all of it is completely wheelchair accessible.  There are lifts to lower patients into the pool.  All the tables adjust up and down to accommodate wheelchairs. Hallways and doorways are wide and forgiving "freeways" for wheelchair users.

The artwork that lines the hallways and foyers is not the standard "bolted to the wall" nature scenes from hotel rooms.  The art here is museum quality with different themes on every corridor.  There are sculptures, paintings, photographs, and collages of animals, birds, flowers, and abstracts.  It is absolutely beautiful.

There is a gift shop too, full of treasures I view through the glass window.  I won't drive myself inside for fear of breaking something.  I'm not that good at maneuvering my "semi" in tight spaces.  But I am able to operate my power wheelchair independently and cruise the "hotspots".  I find hope around every corner.  The family members I see look tired but determined.  The staff and volunteers are always kind and enthusiastic.  The patients are supportive of each other and we share victories and setbacks with genuine excitement and concern.

Hope and humor abound here.  Even though I am 9 hours away from family, friends, and Trudy, I am grateful for this opportunity to be helped and cared for here at the Shepherd Center.  Now...for just a little while.

Written October 8, 2010  8:54 pm

Anita was taken off the vent at 6:00 a.m. this morning.  She subsequently was out of bed, dressed and ate breakfast by 8:00 am.  She had Physical Therapy (PT) session, followed by an Occupational Therapy (OT) session (painting).  She then ate lunch, and had the afternoon "off" due to internal meetings for the various therapy departments.  She remained up in her wheelchair for the afternoon, took a trip around the Shepherd Center, read the latest Caringbridge guestbook entries and watched some TV.  She retired to bed and remained off the vent until 10:00pm, for a total of 16 hours off the vent.  The plan for the weekend is to have some therapy on Saturday morning, to repeat the 16 hour stretches off the vent on Saturday and Sunday and to evaluate next steps regarding ventilator weaning on Monday.

Vent weaning.  One of the hardest things I have ever done.  Ranks up there with Graduate School and Childbirth.  Each morning I am "unplugged" and my ventilator buddy stops his noisy cadence.  The silence invites fear to come into my room and squeeze tightly around my ribcage.  It takes me a few shallow breaths to realize that I can do this.  One breath at a time. I am always dizzy at first, but this dissipates quickly. The pulse oximeter (which measures the oxygen in my blood) shows that I am within safe parameters, but that does little to comfort me.

I move forward and "drive" myself to the therapy gym, leaving my "life support" in my room.  The therapists and other patients distract me, but I always feel a little breathless.  As I look around the gym here, I count my blessings.  Some folks will never be able to wean from the vent.  Some can't feed themselves.  Some are taking their first independent steps in months.  Some can't remember where they are. And yet, this room is full of smiles, laughs, hope.  It truly is the most amazing place I have ever been.  Disability is a "real leveler" (quoting John).  Your background (sex, religion, education,  family life) doesn't matter here.  We are all working towards independence.  Friendships and bonds are formed quickly.  And laughter is always welcome.

Laughter is good exercise.  It fatigues me.  But, despite my breathlessness and fears, I relish the freedom of being off the ventilator.  I can laugh out loud. And I can talk freely without the vent. And I do.  I talk all the time, to anyone who will listen.  I know I am talking too much, but I can't seem to stop.  When I am unplugged each morning the words just pour out of me.  If I could hold a pencil, I'm pretty sure I could write the next Oprah Book selection.

I asked my Pulmonologist when he thinks I will be free of the vent.  He assures me that I will know when its time.  When it bothers me to be hooked back up at night, he says I'll be ready.  I can't imagine ever refusing the ventilator at night.  It's my pacifier. I don't think I could rest without it.  When I am plugged in I can't talk.  But I can let go and relax.  Grateful that I don't have to think about breathing.  I can just sleep.  Now...for just a little while.

Written October 7, 2010  8:54 pm

Anita was up, dressed and off the vent by 8:30 a.m.  She had an Occupational Therapy (OT) session, focused on eating breakfast.  She then had a Physical Therapy session, which was followed by a short Recreational Therapy session.  She then ate lunch.  In the afternoon she had an OT session which focused on home requirements/accommodations.  Anita then returned to her room and watched her afternoon Soap.  She then ate dinner, and participated in a Skype video call with family members in Midlothian.  She then read the latest Caringbridge guestbook entries, and watched a DVD (Northern Exposure episode).  Anita retired to bed and remained off the vent until 9:30 pm, for a total of 13 hours off the vent!!!

Caringbridge. What a wonderful way for friends and family to stay in touch during trying times.  John's postings provide a touchstone for him.  His daily updates keep our friends and family in the know and allow John more free time away from the phone.

But the best part of the Caringbridge is the well wishes , prayers and encouragement it provides me.  John pulls up the site each night before he leaves for his room at the Shepherd Center.  He either reads me the postings, or positions the computer so that I can see them.

There are so many.  Some nights I fall asleep before getting through them all.  It's wonderfully overwhelming.  I am surrounded by love and prayers.  I feel it. The well wishes warm my soul and keep me motivated.  The stories of the boys, Trudy, and the happenings at home, make me smile, but weigh heavy on my heart, making me long for my old life.  Will I ever get it back?  There is sadness , wondering what lies beyond The Shepherd Center for me.  But the Caringbridge inspires me.  It is my night light that helps me get through just one more night.  I will never be able to thank you all enough.  Now...for jut a little while.

Written October 6, 2010 7:21 pm

Anita had another good day.  She was up and dressed and ate a good breakfast.  She went off the vent at 09:00 a.m.  Anita then had a pet Therapy session with Maisy, a friendly Rottweiler, which was very much appreciated.  A meeting with Assistive Technologies followed.  She then ate lunch.  In the afternoon, she had a group therapy session with other patients.  Anita then participated in a Skype video call with her sons, her mom, and her cousin.  Anita then read the latest Caringbridge guestbook entries.  Anita is touched by and feels the many good wishes and prayers heading in her direction.  She looks forward to hugging and thanking everyone in person.  She also thanks everyone for watching out for and supporting our family, including Trudy, during this time away from home.  Anita then retired to bed and remained off the vent until 8:30 pm, for a total of 11.5 hours off the vent!!  She then rested for the remainder of the evening.

There are many service dogs here at the Shepherd Center, helping some  of the working staff perform their jobs.  Golden retrievers, Yellow Labs, Black Labs.  They are beautiful, but they are working, so I am not supposed to pet them.  I've always had a dog in my life. It's a comfort to me to just observe these  magnificent canines.

I miss my dog.  I think of her often, knowing she would be here if she could.  Helping me with my recovery.  Trudy's soulful eyes looking up at me. Her slick black  head resting on her spotted paws.  Understanding me.  Loving me just the way I am. Wanting no more.  Well.... maybe a treat.

Animals are good for the soul.  My visit from Maisy, the "therapy dog" was the best therapy I've had at Shepherd.  Maisy is a huge black and tan Rottweiler.  I heard her collar jingle as she came into the therapy gym door at my back.  I was side lying on the mat in PT when she arrived.  Her owner asked permission for Maisy to visit.  I joyfully accepted. This warm heavy dog jumped up on the mat and spooned me.  It was wonderful.  What a gift.  She stayed there for a good 5 minutes, nuzzling my left hand (my weaker upper extremity) encouraging me to pet her. 

I smiled ear to ear and did the best that I could.  When satisfied with my "performance", Maisy jumped off the mat and sat on the floor looking up at me.  She was beautiful.  Working at the Shepherd Center, I was sure she'd seen more than her fair share of suffering.  But her eyes didn't show it.  There was a kindness in those brown eyes.  An understanding that went beyond human comprehension.  Maisy didn't ask for one more rep on an exercise.  She didn't pity.  She just knew.  What a blessing to get a visit from such a kind soul.  Dog therapy.  The best yet.  Thank you Maisy.  Now....for just a little while.

Written October 5, 2010

Anita had another busy day today. The day started with coming off the vent at 7:30 am.  She then showered, dressed and ate breakfast.  She had a Speech Therapy (ST) session in the morning, followed by a Recreational Therapy (RT) evaluation.  After lunch Anita had another ST session, followed by another PT session.  She then returned to her room, watched some Soaps and remained off the vent until 5:00 pm, a total of 8.5 hours off the vent!!!  She then returned to bed and rested for the remainder of the evening.

A shower.  At last.  Another something that I used to take for granted.  It's been almost two months.  I am ready to feel the water flowing over me. The way I used to wake up.  Maybe I will do better in therapy today after participating in my old morning routine.

Of course I can't take my ventilator buddy into the shower, but today I am unhooked early and my tracheostomy is covered.  I can't let the water flow down over the top of my head, but there will be a hand held shower head rather than a bed bath.  Bring it on!

My OT arrives promptly at 7:30 a.m. to evaluate my showering abilities.  She transfers me by hoyer lift into a special shower chair.  Its seat is horseshoe shaped, open in the middle, allowing for "undercarriage" washing. I am wheeled into the shower room which is large enough  to be a car wash for compact cars.  The entire room, sans ceiling, is covered with medical grade beige tile.  There are two handheld showers and the floor slants down to a huge drain in the middle of the room. Voices and noises echo as if we are standing at the edge of a canyon. It's sensory overload for me.

The kind therapist removes my hospital gown and turns on the faucet.  The water feels sharp against my skin and I discover I can't feel hot or cold.  My OT picks a comfortable temperature and sprays me down.  She squirts liquid soap into a washcloth that is placed in my hand.  I can't squeeze it enough to wring it out. I am only able to wash the tops of my thighs somewhat effectively with my right hand.

Reality slams me head on once again.  I can't do this.  Bathe myself. I certainly never pictured this as part of my path right now. But I said can't.  That word is not welcome at the Shepherd Center.  My OT picks up the washcloth and finishes where I have failed without a bother.  She doesn't mention my inadequacies, but rather, starts a conversation about favorite soaps, lotions and shampoos.  Her kind distraction is welcome and blocks the lump in my throat and the tears in my eyes.

Despite my dependence in this basic life skill, I am delighted to get away from the bed bath.  It feels so good to be clean.  I am transferred back to bed where the nursing assistant dresses me and hoyer lifts me back to my power chair.  I can take myself to the therapy gym now, with clean hair and a renewed determination.  I can do this.  Now...for just a little while.

Written October 4, 2010  8:15 pm

Anita had a pretty busy day today.  The day started with a Physical Therapy (PT) session in the morning.  Speech Therapy (ST) then performed a Barium Swallow test to check Anita's swallowing capacity.  Anita passed the test and is now released to eat and drink "regular" food.  an Occupational Therapy (OT) session followed which focused on her ability to feed herself.  A Neuropsychologist then tested Anita's cognitive capabilities, which were found to be in order.  Another PT session followed in the gym.  She then returned to her room and had a vent weaning session in the afternoon during which she remained off the ventilator for over five (5) hours.  She was somewhat tired after the full day of activity and rested the remainder of the evening.

Barium Swallow.  I am familiar with this procedure.  It's done to make sure that the swallow muscles are working so that liquids and solids go into the stomach rather than the lungs. This is a test I hope to pass so I can eat real food and have my feeding tube removed.

Although I have knowledge of this procedure, I have never seen one performed. I am interested to see this first hand, but a little nervous about what to expect.  I am hoyer lifted onto a stretcher and taken to another floor where I am lifted again and placed into a small manual wheelchair.  The chair is wheeled into a small dark room.

My Speech Therapist has a student with her today.  I welcome students.  They are enthusiastic.  Full of questions for their mentors.  And their mentors do an extra thorough job to demo to the student exactly how things are done.  There are always students in Rehab. 

A Barium Swallow test is a live x-ray, so all those in the room (except the patient of course) must don a lead apron.  My therapist comes in and dresses out.  The student arrives a few minutes later with a look of confusion on his face.  He is wearing his lead apron, but is holding a triangular shaped object and looking at his mentor for direction.  It is a lead shield for the thyroid, but my witty Speech Therapist has advised her student it is to protect his privates.  Since the lead apron hangs almost to his knees, he is obviously perplexed.  When he realizes what the triangle is for, we all have a good laugh.  The comic relief is welcome in this small dark room.

With everyone properly outfitted, I sit in front of the screen.   My therapist holds the cup full of chalky liquid to my mouth.  I can see the liquid on the x-ray going into my mouth and then down my throat.  It goes down the right path, bypassing the lungs. I tuck my chin to encourage a swallow. After a few more gulps, I am then fed jello, followed by pudding, raisins,  and crackers to chew and swallow.  I am surprised how difficult it is for me to manipulate food in my mouth. And to push it to the back of my throat. I really have to think about it. Yet another thing I hope to never take for granted.  The x-ray is fascinating.  Watching the internal act of chewing and swallowing is an intimate experience.  Definitely an inside view!

The good news...I pass. I am cleared to eat solid food.  Now on to OT to see if I am physically capable of feeding myself.  Can I get a fork to my mouth?  I'm not passing this test too well. Since I have limited use of just one hand I need a sticky mat so my plate won't slide and a plate guard to keep my food on the plate.  But I can't even get my food to my mouth due to muscle weakness in my arm and I can't hold a utensil.  So, I am given a special cuff that is strapped around my hand with an opening to hold my fork or spoon.  My OT also outfits me with a special hinged device that supports my arm.  Once my arm is strapped into this device I can use shoulder muscles to get the food to my mouth.  Once my tray is set up (all containers opened, long straw in place, food cut, arm placed in hinged device, and towel in lap to catch the spillage) I can feed myself.  But after all the tests, modifications and 2 months of not eating, I find that I am not the least bit hungry.  Now...for just a little while.

Written October 3, 2010  9:19 pm

Anita had a rather quiet day today.  Sunday is a day of rest at the Shepherd Center, i.e. no therapy.  However, Anita did sit up for a large part of the day, while resting in anticipation of more therapy/ventilator weaning this coming week.

Rest.  A coveted commodity here in Rehab World.  A pause.  A respite. Different than sleep. In medical settings sleep is constantly interrupted. I am turned every two hours. Vital signs taken, medications given, feeding tube feedings, trach changing, suctioning, blood taking and the occasional x-ray.  And between all of this, there are dreams.  Some I want to be awakened from so I can escape their dark images.  Others, where I am walking and driving, I want to stay in.  Magically, I am back in my previous life for just a little while.

But Sunday is a day of rest.  There is no rush to get out of bed.  No where to go.  Nothing to do.  It's wonderful to have a leisurely morning.  Until about 11:30 am.  This is when I realize how much of the day stretches before me  with little to distract me.

John is here.  I watch him eat lunch.  We watch TV.  We look out the window.  He reads me the paper.  Idleness leads to dark thoughts.  I can't run away from them, so I decide to sleep to escape them. Sunday afternoon is nap time.

After being hoyer lifted back into bed, I close my eyes and count my blessings.  I am slowly weaning off the ventilator.  I have a power chair and I can drive myself to therapy now.  I finally had my Coke.  John is here.  My mom is at my house "caring" for my teenage sons.  I have a long road to recovery, but I am lifted by love, prayers, and support from friends and family.  Even strangers

I fall asleep while counting my blessings and dream of walking barefoot across fields of grass and pebbled paths.  I'm so grateful to recall this feeling so vividly.  And thankful for the much needed rest.  Now...for just a little while.

Written October 2, 2010  9:14 pm

Anita had a less strenuous day today.  She started the day with a session of Occupational Therapy(OT) in the morning during which she performed some range of motion exercises.  She had a vent weaning session thereafter during which she remained off the ventilator for over five (5) hours.  During the vent weaning session, she again talked with her sons and mother by telephone.  She was quite tired after the vent weaning session and rested for the remainder of the day.

I was able to breathe on my own for more than 5 hours today.  Excellent and exhausting.  Dizzying.  Breathing is hard work.  My weakened diaphragm feels lost under my slumped posture.  I try to sit up straight, but my poor muscle tone won't allow it.

I glimpse my reflection in a polished elevator door.  The power wheelchair is huge, swallowing my emaciated body.  It has become a part of me. A shell I wish I could hide in.  My hair is almost gone and my skin is the color of paste. I am dependent on people and machines for survival.  Despite this I feel an innate drive to fight.  Keep going.  Let go, let God. This too shall pass.  These thoughts roll through my head on a continuous loop.

The days here are hard and exhausting.  The dark is long, but the nights are short, never allowing enough hours to rest.  But I am here.  Hope is here too.  I see it in the determined faces of the patients.  I hear it in the kindness of the therapist's voices.  I feel it in the gentleness of the staff.  And I am surrounded by the support of families, staff and volunteers who roam these halls spreading hope.  Kindness is here and it is not hiding.  Now...for just a little while.

Written October 1, 2010  9:05 pm

Anita had another pretty busy day.  Today she was dressed and in and out of her wheelchair  (for Physical Therapy) for over eight (8) hours during the course of the day.  She started the day with a session of Speech Therapy (ST) during which she got the long awaited Coke, which reportedly tasted very, very good!!!  A PT session followed in the gym.  She then returned to her room and had a vent weaning session in the afternoon during which she remained off the ventilator for approx. five (5) hours.  During the vent weaning session, she talked to her sons and her mom by telephone.  She was somewhat tired after the vent weaning session and took it easy for the rest of the evening.

I finally got my Coke! Careful what you wish for.  The Speech Therapist advised me that the acidity of colas, makes them hard to swallow, and therefore a poor choice for the first fluid consumed in almost 2 months.  But I have been craving and dreaming of that sweet cola taste since August.  Besides, she doesn't know that I am a seasoned Coke drinker.

I remember the ice cold Coca-Cola in a bottle that was opened on the side of the cooler at the store. I'd quickly suck the foam from the top before it could flow over. Then I'd open that package of Lance peanuts and drop a few into the Coke.  The peanuts added a crunch, like ice, but with a warm flavor that tasted like summer baseball  games or fishing from the river bank.

Over the years my Coke consumption has declined, but sometimes it's the only thing that will quench a thirst.  And it has become my new obsession.  I think it symbolizes healing.  Progress.  The therapist brought in the small red, black and white can with a cup of ice.  She pulled the silver tab.  The Coke sighed and then glugged as it was poured into the cup.  My mouth watered as I watched the foam rise to the top.  The therapist opened the bendy straw and pushed it through the ice.  She commented  how this was not per protocol, but she could not deny my request.  She advised me to be careful and only take small sips as she lifted the straw to my lips.

I drew the brown liquid through the straw savoring its cold sweetness. I pushed my tongue to the roof of my mouth and tucked my chin to swallow.  It felt like shards of glass going down my throat.  Who coined the phrase "soft drink".  There was nothing delicate or easy going on in my throat.  My Speech Therapist raised her eyebrows, watchful for my reaction before taking the cup away.  I swallowed air and saliva to try and erase the burn, then I smiled and nodded to her.  I was afraid if I told her how badly it hurt, she would take it away. She smiled as she replaced the bendy straw with a long plastic one and set the Coke on my bedside table.  Now I could access it independently.  It took me all afternoon to finish that Coke, but sure was good.  Progress.  Now...for just a little while.

Written September 30, 2010 7:51 pm

Anita had a very good and busy day today.  She was dressed and up in her wheelchair for over six hours during the day.  She started her day with a session of Occupational Therapy (OT) during which she had her vision tested with good results, and practiced her handwriting.  She then had a vent weaning session during which she remained off the ventilator for over three and a half hours.  During the vent weaning session, a Montgomery Valve was installed which allowed Anita to talk.  A medical conference with the lead physician and Case Manager took place during the weaning period.  A Speech Therapy (ST) session took place after lunch during which Anita drank some water and ate some chocolate pudding, the first food ingested orally in weeks!!!  Anita quite enjoyed the chocolate pudding, and is looking  forward to a Coke, which is on the agenda for tomorrow.  A Physical Therapy session followed in the gym.  She then returned to her room and watched some afternoon soaps.  In the event she received visits from her second cousin and her brother, who is visiting for a few days.  She was quite tired by evening's end and finished the evening with a viewing of an episode of The Office.

I remember being able to speak again.  And I vividly recall the chocolate pudding.  Wow.  The simple things we take for granted.  Being mute is so isolating. Folks tried to include me in conversations.  I nodded or mouthed words (extremely frustrating) in return. Now the Montgomery Valve allowed my wishes to be heard.  My voice was weak, but I could talk! I spoke to John, my roommate, the docs, the nurses, the therapists, the cleaning crew, other patients.  Anybody who would listen.  It was exhausting.   I was able to verbalize away during the day, but at bedtime, the valve was removed. Usually I was so tired I didn't mind.   I had all night to think of more things to chat about the next day.

My Speech Therapist clearly heard my choice of pudding flavors (chocolate). I wasn't hungry at all, but being a true "chocoholic", I thought the sweet treat might stimulate my appetite.  It didn't.  I seemed to have no spit and I couldn't find my swallow muscles. The therapist scooped a half spoon of pudding and brought it to my mouth.  I had a hard time manipulating the custard in my mouth. When I finally pushed it to the back of my mouth, it felt like I was swallowing a bolus of 10 saltine crackers.  Who knew pudding could be so painful.  I was told I did well, but further tests needed to be done before I am allowed to eat solid food.  I wasn't hungry anyway and eating sure seemed like a lot of work.  So, I continued to receive my meals via the feeding tube.  Now...for just a little while.

Written September 29, 2010  7:34 pm

Anita started her rehab program with becoming familiar with operation of her motorized wheelchair.  She then had sessions with PT, OT, and Speech Pathology.  Anita was in good spirits and pleased to get started in earnest with her rehabilitation.

I remember feeling so much hope.  Finally starting rehab! It wasn't hard to leave the Shepherd ICU.  I hadn't been there long enough to get close to the staff.  The Neuroscience Unit became my new home.  We were like the Island of the Misfit Toys (a reference to Rudolph the Red Nosed Reindeer movie).  Most of us weren't classic spinal cord or head injury patients.  There were a few, but for the most part our diagnoses were things like West Nile Virus, Craniotomies, surgeries gone wrong or just plain bad luck.  And some of us suffered maladies yet to be named.  But I made it.  Out of ICU at last.

My expansive new room could house 4 patients, however I only had one roommate.  I hadn't had a "roomie" since college. The first thing I noticed was the case of coke she had under her bed and the open one on her bedside table.  This looked promising.

She was on a ventilator too, but was more mobile than me.  She had a regular wheelchair and was able to get in and out of bed with minimal assistance.  I was still transferred by hoyer lift.  I was well used to this "carnival ride", but this was hoyer lift Shepherd style.  There were tracks in the ceiling and a box-like mechanism that was able to slide on the tracks.  This box housed the cables that were lowered and then hooked onto the mesh fabric sling that was placed under me.  With a push of the button the sling folded, supported and lifted me.  I could be suspended over my bed or moved via the tracks to my wheelchair.  I felt like Peter Pan.  There was a sense of freedom in "flying" around the room.

When I wasn't flying, I could lie back and view the beautiful artwork on the ceiling tiles.  If the tube to my television was placed near my chin, I could maneuver it to my mouth (through head movements and bizarre facial expressions) and control the TV by sip and puff.  In my new home, the nursing routine was the same.  Feeding tubes, catheters, turning every two hours, bed bath, and trach cleaning.  I continued to battle the ventilator monster, but I was fighting him on my turf now.  My new home.  Free of constant monitoring.  Now...for just a little while.

Written September 28, 2010  8:11 pm

Today was a day of transition for Anita. In the morning, she was fitted out with a motorized wheelchair.  At noon, she was transferred out of ICU to the regular floor.  She then went through another series of evaluations by the various disciplines, Speech, PT, etc. on the floor.  Tomorrow, her rehab program will start in earnest.

Wheels!  I am mobile.  Not quite free, but perhaps it's just a roll away.  The therapist suggested  I start with a sip and puff power wheelchair, due to my decreased movement  This chair is operated by blowing or sipping on a straw attached to the chair's "brain."  Truly amazing.  I recall a patient I had once who controlled his whole environment (TV, lights, bed, computer, even his van) through a  sip and puff apparatus or switches that were operated by head movements.  As a therapist, this technology thrilled and fascinated me.  As a patient, not so much.

Thank goodness for my husband, advocate, hero who was adamant that I try a toggle switch mounted on the right side of the chair.  I could wiggle a few fingers, so once my arm was placed in the right position, my fingers could grasp the switch and I could move forward. My ventilator is attached to the back of the chair, so it follows me like a dark, ominous shadow.  I am issued a suction machine (even has my name on it) and am told it needs to be with me at all times.  Someone has to follow me with this device in case my mucous secretions seize up on me.  At least I am up.  It is a step, or a roll forward.   I wasn't allowed to go too far today, but I have dreams of returning to nature.

As an OT working in Rehab, we encouraged patients to set goals.  There was a universal goal that most patients expressed, "I want to walk again."  Well guess what?  So do I now.  With my patients, I never acknowledged that this might not be possible.  I tried to set smaller goals to distract them and provide small victories on the path to wellness.  I feel the need to elaborate, be more specific with my goal.  If only I could verbalize, I'd tell them, "I want to walk out of here with a Coke in hand, completely independent to appreciate family, friends, and nature just like I used to."  I promise to never, ever take anything for granted again.   I quickly realize I am exhibiting 2 of the stages of grief/loss as outlined by Elizabeth Kubler Ross; denial and bargaining.

Today I realized that therapists know too much to be model patients.  I just need to let go, let God.  Now....for just a little while.

Written September 27, 2010 7:08 pm

Anita had a somewhat mixed day today.  In the morning, Physical Therapy (PT) and Occupational Therapy (OT) performed an evaluation of her muscle/functional capabilities.  Speech Pathology worked with Anita on swallowing ice chips and noted improvement in her swallowing capabilities since the initial evaluation.  Anita managed to remain off the vent for an hour and a half in the afternoon.  However, she became quite anxious and her blood pressure increased.  She was quite tired thereafter  and rested for the remainder of the day, with her blood pressure returning to normal levels.

Evaluations.  I am the new kid on the block and everyone wants a piece of me. I am asked to wiggle my toes, move my arms, stretch my fingers.  I feel like a failure.  I can shrug my right shoulder and barely move some of the fingers on my right hand.  That's it.  I don't think I am making a very good first impression.  I want to scream, "Don't give up on me.  I will work hard."

I can breath on my own for one and a half hours now.  That's progress isn't it?  And I swallowed some ice chips.  They felt like cold jagged rocks tumbling down my throat. The melting water tried  to choke me. Rather scary since I don't have the muscles needed to cough, or even to clear my throat.  As much as I want an ice cold coke, I am afraid to try to swallow now.

John is encouraged by my progress.  As an OT I know better.  I write the note in my head.  "Patient shows minimal progress", or "slow, steady progress noted.  Will continue with current goals."

I was so hopeful when I arrived here in Atlanta.  Everything was new.  But the realty is, my abilities haven't changed much.  New personnel, but basically the same routine.  I miss my kids.  My dog.  My independence.  I want to go home.  But I can't.  I have to stay here.  I have to try harder.  Now...for just a little while.

Written September 26, 2010

Anita had another quiet day today.  Sunday is essentially a day of rest at the Shepherd Center, i.e. no therapy.  However, Anita was taken off the ventilator today for an hour and fifteen minutes, and continues to make progress with ventilator weaning.

Rest.  I am so tired.  How can that be?  I nap several times a day.  I sleep most of the night.  Must be my active lifestyle.  While in bed, I am turned every two hours.  I get a bed bath in the morning. I am transferred to a chair where I sit for all of 2 hours.  My trach is changed daily.  I get meals and meds through a feeding tube.  I watch TV.  John keeps me posted on the "news" I need to hear and provides encouragement.  How can this far from hectic schedule keep me exhausted?  I remind myself that my body is healing.

I do my part.  While resting, I turn my thoughts to nature.  My muse.  My hope.  I miss the outdoors so much.  I visualize walking through the woods with my dog.  Healing thoughts of velvet green moss covering the sides of the paths. I take off my shoes, letting nature's carpet sooth my hot, tired feet.  Birds and breezes whisper to me.  The smell of rotting leaves and trees waft around me as I crunch through hardened paths and step on the occasional stray stick. Peace.  Bliss. I wonder how many people have walked down this path.  What were they thinking?  Did they meander and enjoy the sensual experience of a walk in the woods or did they stride through counting calories, distracted by sweat and labored breathing.

Maybe this is why I am weary.  I walk too much in my head.  It seems I can't get away from myself.  I cannot give up my walking thoughts.  It's my solace.  Now....for just a little while.

Written September 25, 2010  8;25 pm

Anita had a relatively quiet day today.  She had a Physical Therapy (PT) evaluation in the morning and received some range of motion exercises.  She sat up in a wheelchair for two (2) hours in the afternoon.  She was then returned to bed, following which she was taken off the ventilator for twenty five (25) minutes as an initial step in the weaning off the ventilator process.  Weekends at the Shepherd Center are relatively quiet with regards to level of rehab activities, as compared to during the week.  Anita was resting easy be evening's end.

Here I am, in another state, still in ICU.  As usual, John sits vigil during the day.  But something is different.  I'm lying on my back, gazing at butterflies and flowers, words calling to me; hope, faith.  The ceiling tiles are all painted with vibrant colors, scenes from nature and encouraging words.  No two are alike.  A feast for my eyes.  I am so used to flat white tiles with black specks resembling splattered paint.  And sometimes a small stain just to add dimension.  I used to stare at them for hours, trying to make images or shapes out of the dots.  Sometimes the dots seemed to swim in a sea of confusion.  To me they were ICU clouds.

The ceiling tiles here are beautiful.  Some are worthy of framing.  The nurse notices me looking at them and tells me they have all been done by patients in Therapeutic Recreation.  She remarks that I will have a chance to create one.  I smile.  That would be nice, but I have never been an artist and I can't lift my arm or grasp a paintbrush.

As per my paralyzed protocol, she then rolls me to my side.  I can no longer see the tiles, but I see her.  I know she will be back in 2 hours to turn me again. Being paralyzed in bed is akin to spinning on a rotisserie. Before she exits, she casually asks while fluffing my pillow, "Can you cluck with your tongue?"  I try, and to my delight, find that my tongue makes a noise as it slaps off the roof of my mouth.  "Good," she says.  "If we ever try to leave before getting you comfortable, or if something's not right, just cluck at us.  We will figure out what's wrong and fix it."

Fix it.  I like the sound of that.  And I love that I have a "voice" now.  It's very chicken-like, but I can be heard.   And my overhead art gallery is amazing.  I'm still scared, but my new environment is hopeful. They are well used to patients with my deficits and I am medically stable.  Hope is hiding in the ceiling tiles and in my clucks. Now...for just a little while.

 
Written September 24, 2010  9:39 pm

Anita and John departed at approx. 10:15 a.m., by ambulance  to the airport.  They then flew to Atlanta, GA by air ambulance, connecting with an ambulance which arrived at the Shepherd Center at 01:00p.m.  The flight was generally uneventful although Anita's oxygen levels decreased and heart rate increased slightly for a short period of time while reaching altitude.  Her oxygen and heart rate levels returned to normal prior to arrival in Atlanta.  Upon arrival at the Shepherd Center, Anita was admitted to the ICU, typical of the Shepherd Center admissions process for ventilator dependent patients.  During the course of the afternoon, a series of examinations/evaluations were conducted by members of the medical team, including Respiratory, Speech, Neurology, Physical Therapy and Occupational Therapy.  Anita was quite tired after the day's exertions and was resting peacefully by evening's end.  Anita and I would like to take the opportunity to thank the staff at the VCU Medical Center for their kindness and support during Anita's stay over the past weeks.  It was very much appreciated.  Anita now enters a new phase in her recovery, and we look forward to her return home in the near future.

Leaving today.  Not the way I had hoped.  I was holding out for spontaneous recovery.  Walking out the door, surrounded by friends, family and astounded medical staff, squinting in the sun, with a bounce in my step. If only.  My exit happened like a typical medical discharge.  The wait to leave was full of apprehension.  My bags were packed, my ventilator buddy ready for a fast escape.  But there were papers to be signed and docs to find before we were released. Plenty of time to build anxiety.

I was transferred to a stretcher and wheeled out of the hospital.  Outside!  The first time in over a month.  My senses were overwhelmed with the sounds and smells that bounced off the exhaust stained walls of the parking deck.  Not exactly the soothing nature scene I so desperately needed.  After being loaded into the ambulance I could see my mom and sister-in-law on the sidewalk smiling and waving.  I wondered what emotions they were feeling.  I could only acknowledge them with a smile.

The ride to the airport seemed long.  I remember the bright sunlight, the noise of the planes as I was wheeled out of the ambulance.  Helpless.  Sensory overload. 

I was scared.  I like flying, but this was an air ambulance and the sense of urgency was palpable.  I was leaving my past, all that had become familiar in the past month, and jetting into the unknown.  I had no map.  No plan.  The jet was small.  Being on a stretcher, I took up the most room.  John was there.  My eyes locked onto his for assurance, safety. The pilot and 2 medical personnel were the only other occupants.  It was intimate. My blood pressure and vent settings fluctuated with the changes in cabin pressure.  I was anxious.  The nurse asked if I wanted to be "knocked out".  I nodded yes.  The next thing I remember was being pulled out of the ambulance at the Shepherd Center and transferred to a bed in ICU.  My new home.  John is here.  He looks exhausted, but is sitting in a chair in the corner.  I can't keep my eyes open.  We made it.  The next chapter begins.  Now.....for just a little while.

Written September 23, 2010  8:59 pm

Anita made further progress weaning off the ventilator today.  She managed to breathe without the ventilator for a period of twenty two (22) minutes.  She also had a session with Physical Therapy, and sat on the edge of the bed, showing good progress with her balance and strength on her right side.  Speech therapy adjusted the tracheostomy tube bulb for an 0.5 hour in the evening, which gave her the opportunity to talk with sons, mom, and sister-in-law, in advance of her transfer to the Shepherd Center in Atlanta.  Anita and John will fly to Atlanta, GA by air-ambulance on Friday morning.  A nurse and Respiratory therapist will also be present on the flight.  John will split his time between Atlanta and Richmond in the coming weeks.  We are confident that Anita will make good progress in her recovery at the Shepherd Center and look forward to her return to the Richmond area in the near future.

I've always hated good-byes.  I'm surprised I have never tripped over all the loose threads I've left dangling in my life.  I am the one at reunions who joyfully suggests we keep in touch and get together soon.  That rarely happens, but it's more pleasant than a good-bye.

So, how do I say farewell to the boys.  A Hallmark card moment for sure.  But, I discovered life doesn't work like a greeting card.  There was no swell in the music.  No close up.  The trach bulb was adjusted to allow me to talk. My mouth and airway filled with secretions. I was suctioned, and I think my heartfelt sentiment was simply, "do your best," which I delivered as enthusiastically as I could.  My boys.  They looked so grown-up, yet still children.  I think they responded, "see ya".

So much to say.  So many emotions.  The room was filled to the brim of all that was left unsaid.  As it should be.  Life goes on.  Here and in Atlanta.  Now...for just a little while.

Written September 22, 2010  8:43 pm

Anita made further progress with weaning off the ventilator today.  She managed to breathe without the ventilator at three (3) different times during the day, for a period of eighteen (18) minutes each.  Speech therapy adjusted the tracheostomy  tube bulb temporarily (0.5 hour) to check Anita's vocal chords/ability to speak.  She showed good results.  She met with family members and friends in the afternoon.

Anita is now at a point she can move out of ICU to a rehabilitation facility.  However, due to her current ventilator dependence, she will have to be transferred to a facility which accept ventilator dependent patients.  After review of various facilities, it has been decided to transfer her to the Shepherd Center in Atlanta, GA for ventilator weaning/rehab.  This will occur in the next days, after the appropriate planning, paperwork, approvals, etc. have been completed.  Needless to say, this is an additional stress on our family, but we are all on board and believe it provides the best opportunity to Anita for recovery.  We thank you for all the prayers and good wishes you have shown Anita and our family during this difficult time, and ask that you continue to keep Anita in your thoughts and prayers.

Looks like I am going to Atlanta.  Nine hours (by car) away from family, friends, and the awesome care and support I have grown accustomed to.  I am medically stable, but it scares me to think that quadriplegia and vent dependency is my new normal.  I am fretful.  John seems stressed.  Everyone else has that deer in the headlights look.

How in the hell did my once active, crazy life with a husband, two kids, and a dog in the burbs end up here?  Ok Anita, calm down.  Be mindful.  Be thankful.  John and my "therapy" friends have found a place that will work with me.  Help me find more independence.  I am hard-headed, strong willed and I've got my faith, family, and friends in my corner.

I am helpless, but I can't refuse.  Where would I be, where would I go if I did.  Besides I love to travel.  This could be my last vacation.

Stop.  Deep breath....forgot, I can't do that.  Ok.  Stop. Blink hard and think.  My brain feels like it is missing a piece of this puzzle.  The facts:  I'm paralyzed, on a ventilator, medically stable and going to Atlanta for Rehab.  I have 2 boys in High School that need their mother.  This sucks.  My life is out of control.  John assures me that all is arranged.  He is coming to Atlanta with me.  My mom, brother, and cousin will be with the boys.  He has gotten the ok from work.  What a blessing.  My head is spinning. I swallow my tears, my fear.

I decide to control what I can.  My attitude.  I can change that.  I can be grateful for this opportunity to heal.  I can teach my boys about perseverance, faith, and determination.  I can thank John by doing my best.  I decide to let go, let God. Now....for just a little while.

Written September 21, 2010 8:43 pm

Anita made further progress with weaning off the ventilator today.  She managed to breathe without the ventilator at three (3) different times during the day, for a period of ten (10) minutes each.  Speech therapy adjusted the tracheostomy tube bulb temporarily (0.5 hour) in the early afternoon to check Anita's vocal cords/ability to speak.  She showed good results and was pleased to have the opportunity to talk with the medical personnel assembled and with John.  Speech Therapy again adjusted the tracheostomy tube bulb for 0.5 hour in the evening, which gave her the opportunity to talk with her sons, mom, and sister-in-law, which was a great comfort to all present, the highlight of the day. Anita will remain in ICU thru tonight, and as previously noted, decisions on next steps re:ventilator weaning program/rehabilitation will be forthcoming this week.

Vent weaning.  Sounds simple enough. Just unplug the machine and practice breathing.  Like riding a bike.  Right?  Not hardly.  I was excited at the prospect of banishing my noisy friend, but the ventilator had a firm hold on me.  The vent was my muscle, pushing air into my lungs, filling them like balloons.  It was keeping me alive, but I hated it.

For weaning, I took a ride in the hoyer lift to sit in a chair.  It was difficult to sit up straight with all the pillows, tubes, IV lines and muscle weakness, so an abdominal binder was wrapped around my ribs (like a girdle) to help me sit up straight.  The tube was pulled from my trach and I was told to breathe.  I learned it's impossible to take a deep breath without muscles.  It was like sucking air through a straw.   It was as if someone put a pillow over my face and I couldn't fight them off.  Frightening.  My brain focused on being plugged back into my "life support".  Each second seemed like a minute.  Minutes like hours.  I tried to be mindful, but that's hard when it feels like you're drowning.  John and the nurses and therapists were so encouraging, cheering my 5 minute victory.  I was relieved when I was re-attached to the ventilator. 

I felt like I failed.  I have never been so scared. How was this going to change?  What was going to happen to me? My family?  Once I calmed down, I prayed.  I visualized 6 minutes tomorrow.  Deeper breaths.  Pray.  Visualize.  Now...for just a little while.

Written September 20, 2010 8:16 pm

Anita had a good night's sleep last night.  As is now normal, she sat up in the armchair for a number of hours during this morning/early afternoon.  She performed breathing tests, and managed to breathe without the ventilator for a test period of five (5) minutes, the first small step on the road to weaning her off the ventilator.  She visited with family members and various friends during the course of the afternoon.  She was excited to see the "Anita's Bracelet" poster and photographs of all the ladies donning their bracelets.  Thanks to "B" for making the poster/bringing it to the hospital.  Anita will remain in ICU tonight, and as previously noted, decisions on next steps re: ventilator weaning program/rehabilitation will be forthcoming this week.

Our friends are amazing.  Thanks "M" for your creativity to design and create the Anita bracelet.  Her idea is that wearing the bracelet or using the keychain will keep me in the thoughts and prayers of folks.  And what fine folks they are.  Other friends donned their bracelets, took photos and made a poster that John hung on my wall.

I have a prayer shawl from another state.  Prayers have been put in the Wailing Wall in Jerusalem for me.  I was given a St. Jude Medal (the saint for lost causes).  I can't name all the churches that have me on their prayer lists. Even some of my docs and nurses have asked if they could pray for/with me.  Are you hearing us God?

I think there is some divine intervention going on here.  Despite tubes, ventilators and IVs, I remain hopeful and peaceful.  I do have my moments of doubt and despair, but they always pass.  The sun continues to rise and I know that I am blessed with a wonderful family and friends.  The docs are doing all that they can.  If it all ended today......no regrets.  Now...for just a little while.

Written September 19, 2010  8:49 pm

Anita had a good day today.  She slept well thru the night.  She was quite alert and in good spirits throughout the day. She sat up again in an armchair for a number of hours during the morning/early afternoon.  She visited with family members and various friends during the course of the day.  Thanks to all who visited for the cards, photos, etc. and to N for the beautiful quilt.  Special thanks to K who provided some OT/PT to Anita during her visit.  Anita will remain in ICU thru tonight, and as previously noted, decisions on next steps re: ventilator weaning will be forthcoming early this coming week.

I am overwhelmed by the number of cards, Caringbridge posts, and visitors that surround me.  John tapes the cards to the wall and reads me all the encouraging thoughts and wishes daily.  He is my link to the outside world.  My rock.  Steady and strong, he visits every day.  I wonder how he gets anything else done. 

I see the worry on his face and I want to reach up and hug him.  I want to tell him I am ok, just go home.  But that's not true.  I need him here and I am so thankful that he stays.  Right now I am trying to keep the faith, but it's not easy.  Somewhere deep inside me, I know everything will be all right.  I want to tell him I am at peace, no matter what.  But I can't.  All I can do is smile, nod my head, and try to convey my thoughts with my eyes.  I look into his for hope, encouragement to make it through another day.  Now...for just a little while.

Written September 18, 2010  9:31 pm

Anita had another good day today. She was quite alert and in good spirits throughout the day.  She again sat up in an armchair for a number of hours during the morning.  She visited with family members and friends and watched some television during the course of the afternoon.  She will most probably remain in the ICU thru the weekend, with decisions on next steps, re. ventilator weaning program/rehabilitation forthcoming early next week.

Rehabilitation.  I like the sound of that.  As an OT, I worked in Rehab.  Spinal cord injuries, head injuries, strokes, joint replacements, and other maladies.  My life has witnessed more tragedies than most, but each journey touched me deeply.  I have seen the resilience of the human body. And the human spirit.   I've also witnessed miracles in the medical world.  Folks who defy the odds.Now I am the one needing intervention.  There are admission requirements for Rehab.  I have to show potential for improvement.  I need to tolerate several hours of Rehab each day.

I'm scared.  I am unable to hold my head up.  I can move my right wrist but not much else.  I can't even breathe on my own.  Passing a Rehab evaluation does not look promising.  John encourages me and tells me my "therapy friends" are assisting him in finding a place for me.  The elephant in the room s the ventilator.  No one wants to take me and my pachyderm friend.  Too risky.  A facility could get stuck with me for a long time.  John remains hopeful and optimistic. But the OT in me knows what happens to those who don't qualify for Rehab and are unable to be discharged to home. A Nursing Home.  I try to come to grips with this.  Maybe this would be better for all.  I would be taken care of.  My family could go on with their lives and visit on the weekends. No.  I will hold out for a miracle.  For Rehab.  I will kick this vent to the curb and pray hard.  One breath at a time.  Now...for just a little while.

Written September 17, 2010  9:40 pm

Anita had a good day today.  She slept well through the night.  She was quite alert and in good spirits throughout the day.  She sat up in an armchair for over four (4) hours in the morning, and had some breathing tests  performed which showed  additional relative improvements in her breathing ability.  afternoon.  She visited with family  members and friends and watched some television during the course of the afternoon.  She will remain in ICU thru tonight, which is not necessarily a bad thing, i.e. room comfort, medical coverage, etc.

Sitting up in a chair.  A positive.  Try to clear the lungs.  The head.  An easy task for most.  Not so for one who cannot sit unsupported.  I remember the ordeal of getting out of that bed everyday.  An arduous task, made possible by modern technology.  The Hoyer lift.  The closest one gets to a carnival ride in the ICU.

I was rolled side to side so that the nurses could slide the mesh fabric under my torso. The cloth that would suspend and support me during the "ride."  This sling was then clipped to a frame with me cradled in the middle. I was unable to support my head independently.  I had an entourage to manage my neck, fold my arms across my chest, and captain the vent tube, feeding tube, IV lines, catheter, and my wayward legs.  After securing all my accessories, the nurse cranked up the lift, so that I was hovering over the bed.  Magic.  Then the transfer device was wheeled over to the chair, where I was slowly lowered to sitting.  I would be unhooked from the arms of the lift, with the mesh sling left in place for the return trip.

This was quite the production that soon became routine.  Sitting in a chair.  Not an amusement park ride, but definitely a three ring circus.  My new trick.  Part of my new normal. I had to keep reminding myself.  I was moving forward.  Now....for just a little while.

Written September 16, 2010 8:48 pm

Anita slept through the night.  She was quite alert and in good spirits throughout the day.  She had a short bout of Occupational Therapy (OT) in the morning.  She was then sat up in an armchair for a couple of hours, and had some breathing tests performed, which showed some relative improvements in her breathing ability.  Speech therapy adjusted the tracheostomy tube bulb temporarily in the early afternoon to check Anita's vocal chords/ability to speak, which again proved positive.  Decisions on ventilator weaning program/rehabilitation will be reached in the next few days, specifically facility/location.  In the afternoon a bronchoscopy was performed through the tracheostomy to verify that there was not a collapse in her trachea, which could have been a cause for the low oxygen levels experienced the previous night during the MRI test.  The trachea was found to be normal.  some sputum samples were taken from her lungs to be checked for infection, and to ensure that the appropriate antibiotics are being utilized to combat a bout of pneumonia, which was discovered after the MRI incident.  The bronchoscopy procedure took less than a half hour, and Anita was in good spirits after the sedation wore off.  She visited with family members and friends in the late afternoon and received "range of motion" exercises in the evening prior to retiring for the night.

Pneumonia. Damn.  That news scares me.  Being on a ventilator and contracting a respiratory illness is bad news.  My nurse rallies round and orders a special breathing treatment.  I am rolled side to side to allow the staff to don a plastic vest on me.  It is velcroed snuggly around my torso.    When turned on, it vibrates against my ribs with the goal of breaking up mucous in my chest.  I still don't have muscles to cough, so I am suctioned after the treatment to clean out my lungs.  Gross. I hate depending on people to clear out my bodily fluids.  That is a perk of being in ICU.  It seems there are many folks to help with this and they do it with a smile. Thank God for them.   I'm scared about pneumonia.  This is a good sign though.   It means I do want to live. 

I have a voice now.  Although it's only temporary, I now have a say in my treatment.  The bulb is adjusted occasionally, permitting  me to speak.  I don't know why it can't be permanently modified to grant communication.  It must have to do with fatigue.  Seems I always have more to say than time allows.  It saddens me when the bulb is closed back so that I can't speak.  Lip reading is so frustrating.  Reading lips is like speaking a foreign language.  I understand, but those I am speaking to do not.  It's worse than charades.  A guessing game and an inadequate way to communicate.

Imagine being allowed to talk only once a day for 10 minutes.  What do you say?  I lie here thinking of all I want to say, and the questions I want to ask.  As soon as the bulb is adjusted, it seems I forget all that I planned to vocalize.  Instead I ask about the kids, my dog, my family.  I advise John to take care of himself. And of course I ask for a Coke.  I'm thirsty.  I want a Coke with chewy ice that I can sip through a straw.  I want to be able to talk all the time.  I count my blessings that I have a voice. I am heard.  Now....for just a little while.

Written September 15, 2010  7:47 pm

Anita is resting comfortably this evening following a traumatic night spent in ICU.  During the course of the MRI last night, Anita's oxygen levels dropped suddenly (for a few seconds), which was followed by a substantial increase in her heart rate and blood pressure.  She was rushed to the ICU whereupon she was stabilized.  Her blood pressure subsequently dropped below acceptable levels, she was then administered with an IV Saline Bolus (i.e. quickly administered) whereupon her blood pressure increased to acceptable levels.  An x-ray and CT of her chest/lungs was performed, which did not reveal blood clots (embolisms), a potential source of the low oxygen levels.  An EEG was performed on her brain and showed normal results, i.e. no seizure activity.

Despite the night's events, Anita was quite alert and in decent spirits throughout the day.  She visited briefly with family members and friends and was at up in an armchair, as well as receiving "range of motion" exercises in the afternoon.  Anita will remain in ICU overnight and was resting comfortably as of this evening.

I hear the doctor say, "We will have to keep a close eye on her."  I notice the Indian accent right away.  I also observe that it is dark and John is here.  Something must be very wrong.  I remember from my days of working in Rehab, that it's usually bad news when the Indian doctor is called in the middle of the night.  My next thought is, what happened? The last thing I remember was going into the mouth of the MRI.  How did I get here?

I'm back in ICU.  Stepping up in the world.  Back with my old nurses.  It almost feels like coming home.  Seeing old friends.  Bigger room with bigger windows.  Prime hospital real estate.  But, what the hell?  I am going backwards.  I just want this nightmare to end.  How long do I have to endure this?  I don't understand.  It's so hard for me to wrap my head around.  There's too much time to think, but I can't stay focused long enough to finish a thought.  My thoughts are scattered.  A puzzle that I am trying to put together.  The corners are there, but key pieces are missing.   I wish someone would come in and tell me what is wrong and what we have to do to fix it.  Put it all together.  Find the link.

I'm trying to do my best. Focusing on the positives.  I have wonderful friends and family supporting me.  Caring docs and nurses here providing excellent care.    I imagine wings enveloping me in a protective cocoon. Escaping into sleep. A place where I walk and talk and laugh and feel.  A place where nature surrounds me with abundant colors, smells, textures, sights and sounds.  My old world.  So vivid to me in my slumber.  Now...for just a little while.

Written September 14, 2010 8:30 pm

Quiet day today.  Anita visited with various family members and friends through the course of the day and watched some television.  An MRI will be performed tonight to check lesions/inflammation against previous MRIs.

Into the rabbit hole again.  The only plus about an MRI is it's an outing.  An adventure.  I get to leave the floor and explore other corridors, elevators, departments. I'm pushed down the hallway in my bed, still flat on my back, but it's good to get out.  ICUs are rather stoic and secluded.  When I leave the floor, my senses are overwhelmed.  The smell of microwave popcorn makes me yearn for my old life.  The overhead lights glaring at me between  institutional white ceiling tiles, burn my eyes, causing me to squint at the brightness. The loud ding of the elevator door startles me. I'm like a hunting dog on steroids, keenly aware of sights, sounds, and smells. My head is ready for the hunt, if only the body would cooperate.

The elevator spits me out at the X-Ray department.  I am pushed into the outer chamber of the MRI scanner.  It's dark in here.  No windows to the outside.  Just one that allows the technician to look in on the man-eater from the safety of the "control booth". I hear the monster gurgling as if underwater.  I don't look into its mouth.  I don't want to see the narrow passage that's going to swallow me for the next few hours.  I get lifted and slid onto the narrow table.  My head is strapped in tight, which is pretty frightening, since it's one of the only body parts I can move independently.  They cover my eyes with a washcloth, stick earplugs in my ears and send me into the beast's mouth. 

I keep my eyes closed and try to relax.  Deep breathing is my first choice for stress management, but due to some paralysis and a ventilator, that's not possible.  So, I play the alphabet game.  I remember it from long car rides as the "picnic game".  "I am going on a picnic and I'm bringing an apple....I'm bringing an apple and a bandana...." The letters bounce around in my head. I am aware.  I am aware and brave.  I am aware, brave and creative.  The beast keeps cadence with each letter by hammering, dinging, buzzing.  The earplugs aren't working, but I can't tell anyone.  I am aware, brave, creative, and determined.  The noise makes it hard to focus.  My thoughts wander. Why is there a letter x?  Why aren't there more words that begin with x, q, or z?  These thought make me panic. So, I focus on the letters again.  I am aware, brave, creative, determined, and enlightened.  It works.  I actually fall asleep before reaching the letter "h".  At least I think I do.  Now...for just a little while.

Written September 13, 2010 8:38 pm

Anita slept well through the night.  She was again quite alert and in decent spirits throughout the day.  She showed functional improvement in her right arm/hand, and right foot.  At one point, she requested a pen and paper to convey her thoughts, which were not clear (to me) by lip reading.  Her first two (2) written words in some time were "shot by...".  After a brief confusion, it became evident that she was directing our oldest son to get his senior portraits done by a friend of ours.  She had a short bout of Physical Therapy (PT) in the afternoon and managed to sit up on the side of the bed while assisted.  The attending doctor is a strong advocate that Anita move (have moved) her hands/arms and feet/legs as much as possible during the day.  Accordingly, all nurses/therapists (OT, PT, Rec, etc.) who plan on visiting Anita will be required to give her a bout of therapy during their visits!!!  Anita's PT exertions tire her, and she rested for the remainder of the day, while watching some television intermittently.

The television fills my brain with news every morning.  It flows into my head like the fluids from my IV that course through my veins.  It's there, but I don't need to digest it.  The "bus stop" report every morning reminds me just how long I have been here.  My kids are back in school.  The summer is over and my Junior and Senior boys are growing up fast.  Without me.   There are college applications, senior pictures, beginning of the year forms to be completed, lunches to be packed, decisions to be made.

The reality of my situation is overwhelming.  No one talks to me about the difficulties the boys are going through.  I know John is taking care of them, but he's here a lot.  So, who's taking care of him?  I guess everyone is trying to spare me any anxiety.  But my frustrations are real. They are mounting.   I can't talk to my kids.  I can't cry.  I can't scream or stomp my feet or shake my fists.

I hear the weather report for the school day.  If I were home I would recommend a rain jacket today.  The boys would grunt or chuckle before running out the door without one.  I recall what my neighbor says to his son, "if you're going to be stupid you gotta' be tough."  Oh how I wish I was home yelling at the boys to get out of bed right now. But I can't.  My roles; wife, mother, daughter, sister, friend, dog caretaker are non existent.  I am a helper and a peacemaker in need.  Can someone help me?Now...for just a little while.

Written September 12, 2010  9:14 pm

Anita had another good night's sleep last night.  She visited with various family members and friends throughout the day.  A highlight of the day was a visit from a therapy dog (labradoodle) from the Delta Society Pet partners, which Anita quite enjoyed.

Dogs.  I've always shared my life with one. My first was a beagle mix who watched over me as I grew up.  I got her when I was just 5 and we shared many adventures. She taught me to notice nature and I taught her to be street smart.  Tippy used to follow me everywhere.  She learned to wait patiently for me outside the local 7-11, where I would get a candy bar and a Slurpee, and always reward her with a chewy, chocolaty Tootsie Roll.  There were no leash laws back then, so my best friend accompanied me on all my travels.  She patiently listened to all my teenage angst with knowing, soulful eyes.  She was always there for me. We picked right up where we left off when I came home from college. She knew me better than anyone.  After her death, I thought I could never replace her.  I was right.  Her unique "pupness" could not be duplicated.  Eventually new paws would scratch at my heart though, and I would invite another dog into my life.

I think my dog Trudy sent this little pup to visit me today.  She knows I need a fur fix.  The therapy dog jumped up on my bed and John helped guide my arm to him.  My fingers tangled in his curls and when he looked at me with his brown eyes, a genuine smile softened my face.  This is so much better than any medication.  Our visit was short, but I won't forget the pressure of the dog on the bed, his healing eyes. Therapy dogs.  Their restorative powers are magical.  I am not sure man will ever understand the width and depth of a dog's healing potential.  I am grateful for all the dogs who have graced my life.  I am thankful for the nurturing visit today providing hope and solace for this ravaged body, frustrated soul.  Now...for just a little while.

Written September 11, 2010 7:35 pm

Anita had a good night's sleep which continued through the early morning. She was quite alert and in good spirits for the rest of the day.  Her vital signs (i.e. temperature, pulse, blood pressure, etc.) were stable. She visited with various family members and a number of friends for short periods of time throughout the day and was engaged with her visitors.

John tells me it's time.  There are many friends who want to visit and he feels I am up for it.  I want to see them, but I don't want them to see me.  I know I must look horrible.  I can't talk.  I can't even wave.  But somehow, that doesn't matter.  All these folks are praying for me, leaving me messages on Caring bridge, caring for my family.  I need to let them in.  I need to see their smiles, feel their comfort.

John funnels folks in just one to two at a time.  It's really awkward in the beginning.  Worse than a first date.  A lot of silences, but the ventilator fills the void, making sure no one forgets it is there.  John does a great job of keeping the one-sided conversation flowing. The sentiments are kind and helpful.  I like hearing about the kids and my dog. The anecdotes about them give me hope that there is some normalcy in their lives.  I love seeing John get a much needed hug.

We are so blessed.  The love from friends and family that surrounds us is holding us up.  I learn there is even a sign-up sheet to walk Miss Trudy everyday.  My mom tells me that she's quickly running out of room for storing all the food that is coming in. The comfort this provides is incredible.  I will never, ever forget these kindnesses and I hope someday to pay it back, forward, sideways, and upside down.

Thanks to all of you for keeping us going.  Thank God for friends and family.  You guys are the greatest! You help keep me going.

Now...for just a little while

Written September 10, 2010 8:47 pm

Anita had a restless night's sleep, and spiked a fever early in the morning.  She also exhibited low blood pressure and low hemoglobin levels.  She was administered with an IV Saline "Bolus" (i.e. quickly administered) and blood transfusion to address the low blood pressure and hemoglobin levels respectively.  X-ray (lung), blood and urine tests were also performed to check on the cause of the fever and low blood pressure/hemoglobin levels, results to be forthcoming in the next days.  Anita visited briefly with family members in the early afternoon, but was quite tired and rested the remainder of the day.

The results of the most recent spinal fluid test (September 9, 2010) were received back from the lab.  On a more positive note, the results of the Myelin Basic Protein (MBP) levels test showed in the normal range. a decrease from the MBP levels from the spinal tap fluid test on September 4, 2010, which were found to be higher than acceptable.  This indicates that the steroid/plasmapheresis treatment program has had the desired effect, and that the nerve demyelination activity appears to have ceased.  The treatment plan for the foreseeable future is to commence with a steroid taper program (i.e. weaning off steroids), monitor clinical neurologic progress, and protect against fevers, infections, and respiratory issues as appropriate.  We are hopeful that Anita has reached the "bottom" with this disease and is now on the road to recovery.


I've been sick a long time.  At least a month now, but it seems longer.  I lie here day after day, listening to the hum of the ventilator.  Not talking.  Not eating.  Not moving.  The lines of fatigue around John's eyes seem to get deeper everyday.  I wish it would just end.  John has cast a net to keep me from drowning.  Every time I start to go under he wills me back.  But for what?  I'm having a hard time envisioning the future.  I don't own a wheelchair.  I don't want one.  I'm too weak to even sit in one.  Does this damn ventilator have to follow me home?

I have to choose better thoughts.  I need to hope, pray, rest. With sleep there is escape. So, I close my eyes , looking for dreams of walking on the beach, searching for sea glass.  The waves keep the rhythm while the wind paints my sun screened legs with sand.  Sweat and humidity cover my body like dew on the grass. Walking in the surf, seeking sea glass.  It's like trying to find a puzzle piece. When one piece is found, another follows.  And once the finding begins, it's hard to stop.  Little tiny shells, polished pebbles all shades of brown can be mistaken for glass.  But the discriminating eye can tell the difference. Slowly.  Walk slowly. The breeze dries the ocean on my skin, leaving salt crystals behind.  I stop to cool in the surf and gaze out on the expanse of the sea.  My feet get sucked into the sand a little deeper with each retrieving wave.  It feels like I am trying to root here.  I see pelicans on patrol, dolphins playing and fish jumping.  The roar of the ocean drowns all other sounds.  The briny smell of fish and the nostalgic scent of Coppertone fill my lungs. I lick my salty lips and chew a few grains of sand which feel like small pearls to my teeth.  I promise myself I will get back here.  This place where my magic is.  The beach has persevered through many storms.  I can too.  Now...for just a little while.

Written September 9, 2010  9:26 pm

Anita had a good night's sleep last night.  She was alert this morning.  The latest spinal tap procedure was performed this afternoon.  Results of these tests will be forthcoming in the next few days, whereupon the next treatment steps will then be determined.  Anita was quite tired after the spinal tap procedure, and rested for the remainder of the day.

The clock is melting.  Elongated, with the numbers one through six pooling at the bottom and seven through eleven climbing up to meet twelve.  Time moves slowly here, but the numbers appear to have given up.  My timepiece of reality is draped against the wall like a clock in a Salvador Dali painting.  I am aware I am hallucinating, but acknowledging this delusion doesn't make it go away.

I know that it's night because it is dark and I am alone.  I can't tell what time it is because the numbers on the clock keep moving.  I'm frightened.  I wiggle my fingers to find my pancake call bell.  Just feeling the flat disc under my fingers provides a measure of relief.  I want to press it and call for help. But I don't.  No one can fix this.  No one can help me.  I can't tell them I am seeing dripping clocks.  I can't tell them how horrible it is to lie here without sensation, wanting desperately to turn over and lie on my stomach, breathe on my own.   I don't want to be left alone with crazy clocks and disturbing thoughts. Maybe it's best that I can't talk right now.  I don't seem to have anything good to say.

So I close my eyes and make  my own reality.  I am asleep at home feeling the crisp coolness of the new part of the pillow I have just bunched up under my face.  I stretch my leg to find John on the other side of the bed. His breathing is rhythmic and soothing.  I roll over and pull my knees to my chest, glancing at the digital clock on the nightstand.  It's 2:00 am.  I feel that marvelous," I can sleep a few more hours" before the alarm goes off.  sensation.  In this reality, I turn again to spoon with my husband.  If only this were real.  I swear I will never take tossing and turning in bed for granted.  Ever.

Thoughts of sleeping in my own bed eventually chase away the sagging clock.  The minutes meld into hours until the sun peeks through my window.  I watch the dust motes dance in the light giving me hope and promise.  Another night survived.  The light has arrived again.  A new day awaits.  I pray for courage. For more time.  Now...for just a little while.

Written September 8, 2010 9:26 pm

Anita had a fitful night in her new surroundings.  Accordingly, she slept for the greater part of today.  A further spinal tap will be performed tomorrow to check again White Blood Cell, Protein and Myelin Basic Protein (MBP) levels.  Review of the results from this spinal fluid test, together with the results of the previous spinal fluid test and recent MRI test results will confirm if the steroid/plasmapheresis treatment program has had/is having the desired effect.  Next treatment steps will then be determined as previously noted.

I'm in a new room.  The Step Down unit.  I am told this is is forward movement, but I can't help but notice the smaller room with just a tiny window overlooking the roof. It feels like a step back, not down.   This is a step closer to discharge but I can't see the positives.  I'm still on a vent.  I still can't move.  Transferring out of the ICU indicates that I'm stable. Is this my new norm?  If so, how do I accept it?  How can I do this to my friends and family?

I have a new nurse here.  He looks like Arlo Guthrie with his wiry grey pony tail.  He is so kind. He always makes sure that I can press my pancake call bell, not just once, but three times, before he exits the room. He talks to me.  Not only about how I am doing, but about his day, his family. His kindness and this distraction are much appreciated. I need to get out of my head and into someone else's, where MRIs and spinal taps are just words in a chart, not arduous tests that must be passed to take another step down the ladder of the healthcare continuum.

Time moves slowly here and changing rooms is unsettling.  I knew the sights, sounds and routines of the ICU.  I should be encouraged to step down but I'm not. I'm scared.  Fear and loneliness are hiding in this room trying to get their hooks in me. I don't like my new surroundings.  It doesn't feel right.  But I can't tell anyone.  I'm not sure I would even if I could talk.  I need to be strong.  Don't give the fear any credence.  I would run from it if I could.  Instead I go to my mindful place, close my eyes and cocoon myself in large white wings. I pray for courage.  Peace.  I visualize myself walking with my dog.  One step at a time.  Now...for just a little while.

Written September 7, 2010 9:06 pm

A conference was held with the Attending Neurologist this morning.  His diagnosis is that Anita is suffering from a case of Acute Disseminated Encephalomyelitis (ADEM), underlying cause unknown.  The report of the MRI performed on Sunday did not show any new lesion development or enhancement of existing lesions.  We are still awaiting the Myelin Basic Protein  (MBP) level results from the spinal fluid test, which will take another few days.  As previously noted, the results of the MRI test together with spinal fluid test results will confirm if the steroid/plasmapherisis treatment program has had/is having the desired effect.  Next treatment steps will be determined upon receipt of  Myelin Basic Protein (MBP) level results, i.e. continued high levels (indicating continued demyelinating activity) may require further drug treatment program (Cytoxan), lowered levels may result in continuation of the steroid treatment program to reduce lesion inflammation.  The tracheotomy bulb was temporarily adjusted today to check Anita's vocal chords, ability to speak, which proved positive, albeit her voice was somewhat weak/hoarse.  Anita's condition was also considered stable enough to move her from the Intensive care Unit (ICU) to a "Step Down" unit in the main hospital.  Anita visited briefly with family members in the afternoon and watched some TV in the morning and the evening, while resting for the rest of the day.

Communication. My Undergrad Degree is in Comm Arts.  I remember one of my professors talking about the complexity of speech.  The anatomy of the spoken word.  He got my attention when he orated, "Can you imagine eating spaghetti without your lips?" I would like to tag onto his lecture, Can you imagine a head full of thoughts, concerns, wishes, ideas straining to be heard, looking for a way out, but finding none. My lips work fine, but lip reading provides limited communication at best.

"We're going to adjust the bulb on your trach to check your vocal chords .  They may have suffered some trauma, so don't be alarmed if you can't speak." That scared me.  I already couldn't breathe or move on my own.  Now they were telling me I may not be able to talk.  Really?  John, the Respiratory Therapist and a few doctors were in the room when the kind therapist gently adjusted the tube coming out of my neck.  She has been my best cheerleader.  Always positive.  Always encouraging. "Try to say something."  I did.  "She sounds like Lauren Bacall!"  She was as happy as I was. I laughed.  I don't recall what I said, but I was relieved.  Grateful to have a voice. Talking was exhausting and the bulb was quickly adjusted back to its original position.  I was told it would be lowered periodically to allow me to talk.  Until then, I must corral my thoughts and pick and choose which ones get voiced.  Something else to do while I lie here.  Think of what to say first.  Now...for just a little while.

Written September 6, 2010 7:35 pm

Preliminary review of the results of the MRI performed on Sunday did not show any new lesion development or enhancement of existing lesions, which is positive.  The full MRI report will be available tomorrow.  The results of the MRI test together with spinal fluid test results (remaining results expected over the next days) will confirm if the steroid/plasmapherisis treatment program is having the desired effect.  The next treatment steps will be determined upon final review of these MRI and spinal fluid test results.  Anita watched some TV in the morning, visited briefly with family and rested for the remainder of the day.

There is an elephant in the room.  It has a long tube, like a trunk, attached to my trachea. The ventilator.  I give everyone and everything a nickname. Not this beast.  I wish I weren't so aware of it.  Frightening.  There are no words to fully describe a ventilator experience.  The air being forced into my lungs, keeping me alive, fills me with an angst, a terror I have never experienced before. The whooshing noise of the machine is not something that lures sleep.  It's a messy business.  There is suctioning that must be done often to keep my airway clear of mucous.  It's an arduous task performed by nurses or respiratory therapists.  The ventilator tube is removed and a sterile tube is pushed into my trachea causing a cough like gag, bringing up secretions, which are then suctioned out.  Nasty. The trachea itself houses a  plastic cannula that needs to be changed daily. This is not only scary, it's painful.  I'm not sure how it works.  I don't want to know.  I only write about it here, hoping I can wrap this memory up, tie it with a black bow and hide it in a corner of the attic.

Helpless.  Feeling a need to be suctioned to clear the airway.  It's the middle of the night.  No one is here.  I edge my right hand and stretch my fingers to find the call bell (a special pancake shaped device designed for those with limited dexterity).  "Can I help you?" Damn straight you can.  I can't talk, but I need some suctioning in here. Having a hard time breathing. "Can I help you?"  Another pause.  "Someone will be right there."  Each second seems like a minute, each minute, an eternity. Someone help me please.

I can't even cry.  I can't talk abut this to anyone but myself. The words roll around in my head like die in a cup. Thoughts start to form but they are suctioned out before they make a lot of sense. I stare at the Wash Hands sign for hours.  I wish I could scream.  I want the lights on.  I want the lights off.  Turn the TV off.  Change the channel.  Turn me. I'm not comfortable.  Can anyone hear me?  I'm scared. Really scared. I want to die.  I want to fight.  I need to fight. God help me. Please.  Keep me in this moment.  One second at a time.  That's all I can do right now....for just a little while.

Thanks for listening.

Written September 5, 2010  10:05 pm

The first results from the spinal fluid tests showed a decrease in White Cell count and Protein levels as compared to earlier spinal fluid tests.  These results together with a slight neurological improvement (i.e. strengthening in right arm, slight movement in left shoulder) was seen as positive by the Medical Team, and could indicate that antibody demyelinating activity (i.e. lesion development/enhancement) has ceased.  An MRI test was performed in the afternoon, of which results will be available tomorrow.  The results of the MRI test, together with spinal fluid test results (remaining results expected over the next two (2) days) will confirm if the steroid/plasmapherisis treatment program is having the desired effect.  The next treatment steps will be determined upon review of these MRI and spinal fluid test results.  Anita visited with family during the morning, but was quite tired in the afternoon after the MRI test and rested for the remainder of the day.

 In the dream I am walking barefoot across a meadow.  I have on long jeans and the cuffs tickle the tops of my feet as I climb the small hills in front of me.  Pebbles, like glass, dig into the soles of my feet.  Each stride causes pain.  I am late for something and as I run across the meadow I am keenly aware of the contrast between the cool, green grass and the hard dusty patches under my toes.  I call these my rock dreams.  I have them quite often. Always in a different location, yet each elicits the same feeling of walking barefoot. Each step causes a knee jerk of pain, walking like a chicken pecking at its feed.  I actually enjoy the dreams.  In them I can feel my feet, see myself upright and walking.  They give me hope.

Walking was my favorite activity before this illness.  Every morning, rain or shine, I would hook Trudy to her leash (after she pawed me at least 10 times during my first cup of coffee) and take off.  Nature was my muse.  I noticed everything.  Hawk feathers on the ground.  Through the fog, I heard the geese honking before they lowered their feet, skimming across the pond, causing a small wake.  Frost patterns, like icing, spread across the wooden slats on the bridges and on the edges of the path. Pieces of driftwood by the stream that ended up in my pocket if they were small enough.  Trees. Rocks.  A heron wading patiently through the water, searching for food.  I saw an owl once, resting in the hollow of a tree.  We gazed into each other's eyes.  It was a haunting experience.  I left it feeling like I had witnessed something I wasn't supposed to see.

Each day was different.  We didn't always go the same way.  We fought the wind, Trudy's ears flipping back, me pulling my hood up.  Other times, the rain would catch us by surprise.  Trudy would walk a few steps and shake the wetness from her fur.  I hunched my shoulders up to my ears, as if that would stop the rain from soaking me.  Walking in nature was how I cleared my head.  Nourished my soul.  Now I just have to visualize it, remember it, long for it.  Dream about it.  Now...for just a little while.