12/12/16

Just had another great energy session with Sara.  We worked together for 2 hours. Sara told me she thought I should have some needles in my chest along my lung meridian. Interestingly enough when Lauren, my acupuncturist took my lung pulse for our first acupuncture session she told me that that pulse was the most compromised. She also told me that the lungs are where you hold all your grief so she wasn’t concerned or surprised. My concern is that eventually your diaphragm and vocal chords can be affected by ALS and that is scary. Knock on wood for the most part my lungs seem strong (thank you yoga breathing) although my voice definitely gets tired especially at night or in loud places.

Sara also felt that Josh, my cranio/sacral energy guy should work on my feet and ankle alignment. All this as she felt a huge release in my neck as she talked to me about my busy life at the store combined with taking care of my family and my father. She imagined me keeping all the tops spinning at the store while fielding questions about my father’s health and the life of my boys and never really having the time or being able to say or express what I was really feeling at any given moment. This was just Sara talking to me about what she was getting mentally while she worked with me – my body, my spirit and my mind.  She felt me opening up and I told her about my blog, she was curious, she was thinking about starting her own blog. Amazingly enough she didn’t know I was a writer! All these years of working on me and I never talked to her about my writing.  I told her what Lisa told me when we visited her in Israel last fall – she was amazed that I wasn’t writing, because the one thing she knew about me for sure was that I needed to write, no choice, Mark has to write! And so when she heard I wasn’t really writing anymore she was alarmed.

I think that is one of the many keys to this illness. I had my emotions on lock down, not a very healthy thing. I always blamed my lack of writing on being just too busy, obviously a bad excuse. Sara and I talked about that me having that outlet is one of the paths to healing.  A way to untie the knots. Sara’s smile as she left the house today was so warming. She was going to her studio to meet Jackie for a session. Yeah! Jackie’s turn!

Otherwise I’ve been spending the rest of today and part of yesterday organizing and paying bills.

Yesterday my outing was to the Hungry Moose baker Ashley’s pie party!  Spent most of the day recovering from the Sagittarian birthday bash combined with some store paperwork.  We arrived at the pie party at around 5pm, tons of cars, kids sledding, and friends all about. A couple of young men helped spot me as I walked from the car thru the snow and into the house. The entryway to the house was a giant pile of shoes. I navigated slowly to a chair around the corner by their Christmas tree right in front of a large table full of delicious pies. Ashley had made 15 pies plus all the ones her friends had brought. I resisted, drank water and talked to people as they took turns sitting in the empty chair next to me. I got to see some good friends I haven’t seen since before my diagnosis. Hugs, kisses, some tears, but it was really good to see people and enjoy the holiday party – best part being the hellos and big hugs from some of the children.

Then back home, where my good buddy Curly was waiting for me with slow roasted chicken and a big salad to watch the Giants-Cowboys Sunday Night Football game. It was a classic cold weather old school defensive struggle with my Giants coming out on top 10-7!!! It was so much fun just hanging out with Curly, Howie (who had Eli in fantasy football) and Jackie and rooting for my GIANTS (pronounced Gee-Ants). Lots of fond memories of many dedicated Sundays spent screaming at the television.

Sagittarians Rule!

Sag Party!

Annual tradition of 5 half Sagittarian couples birthday celebration

This year at John and Laura’s house.

Great food, great wine, great friends, great laughs.

We were playing Celebrity, Sagittarians against non-Sagittarians. I was putting my water glass on Nettie’s chair. John brought me over a side table and I was like I don’t need that, I like keeping my water on the chair, and then went to grab it, but grabbed Nettie’s thigh “by accident”. I laughed so hard it was awesome. Nettie laughed, I laughed, everybody laughed, but I laughed uncontrollably for a long time, and it felt so good and genuine. I haven’t laughed like that in a long time. I’ve laughed, but my laughs of late have seemed physically awkward to me –on this one I got past that awkward, self-consciousness and laughed that full body laugh for like 5 minutes straight! Yeah!!!

Later on in the evening, we had another big laugh, John was trying to get a song to play through Spotify. He had it on and then it went away. Laura said, What did you do?!” and John said,  I’m sorry, I pushed the wrong button! and Laura said without missing a beat, “ Story of my life!”  Another full body laugh. It was infectious as everyone lost it again! Yeah!

We did a little gift exchange…

Nettie bought me a service bell as a birthday gift. When I opened that I laughed and said, “oh yeah, Jackie’s going to love that!” A service bell, the retro box it came in is awesome, but the memories of a service bell, not so awesome. I mentioned to Nettie, Oh, I have stories about a service bell, but I’m wasn’t going to tell it at the party (I didn’t want to cry), but I can tell it here…

We do use them at the store so the register clerk isn’t tied to the front counter, but when my Dad lived in Big Sky, I bought one for him to keep by his bed. When I slept at his apartment in the bedroom upstairs when he would wake up in the night he would ring the bell for me to come help him. He would ring that thing over and over and then start yelling for help when it didn’t wake me.  I don’t think I ever slept well those nights as I was afraid I wouldn’t hear the bell and he would try to get up without me.

Denise and Dan bought me a heating pad and a neck warmer. Using both right now to keep my feet and neck warm.

It was such a beautiful evening, my friends are so good to me. Helping me get onto the high stool at the kitchen bar, from there to the sofa, keeping my wine, water glass and dinner plate full of goodies, helping me up, keeping me steady, helping me in and out of the house. Even escorting us home.

What a magical evening! I’m a bit worn out today, but it was well worth it!

12/10/16

Last Friday night we had a staff party/community dance party at the Riverhouse. Almost everybody on staff was there and fun was had by all.  Lots of our nearest and dearest were there as well. The deejay played great dance music all night and I sat on the dance floor surrounded by beautiful blondes.  I was escorted down to the dance floor by Nettie and Barbara and I told Nettie about my years ago Los Angeles sushi restaurant memory: We were sitting at our table enjoying some yummy sushi when a glow entered the room, it was George Burns approaching 100 years old, with 2 young blonde bombshells, one on each arm.  The light glow around him emanated from him, no cameras, just him and 2 young beauties.  That’s exactly how I felt as I was escorted to the dance floor by Nettie and Barbara:

Later that evening Jackie and I danced, holding hands and dancing back and forth. No spins. Later we lip synced I’ve Got You Babe.  There were glow in the dark rings and necklaces and crazy hats. The party went till almost midnight and it was super fun for all. When we got home I was exhausted, climbed my new stairs from the garage into the house then slowly headed into the house, thinking of the living room chair where I would take off my fancy blue leather Italian shoes and my coat. As Jackie said watch out for the rug I tripped and went flying straight down and into the closet door – face first – smashed my lip pretty good. Looked like I might have gotten into a bar fight.  All healed up now and haven’t fallen since. I need to be mindful of every step and not think 5 steps ahead!  Keep my head where my feet are. One moment at a time. Those are some good mantras to live by.

Saturday was a recovery day, don’t think I ever got out of my jammies. No, I showered and dressed to go out to the school gym to see the first high school basketball games for the boys and girls teams at 6pm.  Sat courtside center court, right in front of all the action. Boys won a close one, girls after a tough first half won easily. It was a great outing, got to see and say hello to a lot of community members I haven’t connected with since before the illness, lots of love and support and more importantly a little bit of normalcy, just watching the kids play hoops!

Sunday was football at a friend’s house, watched the Giants get romped by the Steelers.  That was after working at the kitchen table getting a head start on payroll and bill paying. Tucker came to the house and took over for me after I went to my friend’s house.

Monday, I had someone bring me my work from the store and did payroll from home. Sara came over and did some energy work with me. A gentle session.

Tuesday I worked at the store and did some wine work. I love ordering wine. It’s just too much fun. Sat in the dining area and met with wine salesmen and did some paperwork.  Stood at my desk for a while and then I just had to wrap up and head home to rest then finish my work from my spot at the kitchen table.

Wednesday was a town day. Friend Erin picked me up at 9:45 to head to see Andy, my therapist. A session about mind body spirit as all my appointments were that day. Erin and I went to lunch and then I had an acupuncture session followed by an energy session.  It was a day for me about me.  Definitely a calming day. And all my people were working on aligning and nourishing my mind body and spirit. Spending time with Erin also had a calming effect on me – he’s just the right guy to escort me from appointment to appointment and having good car time with.

So that was a quick summary of my day to day for the last week.   Trying to get into a calming routine and finding time to read, write and relax. Not quite there yet, but getting there – that’s what I tried to do on Thursday, spend the day at my spot on the kitchen table writing this – now it’s Saturday – yesterday Jackie and I went to Bozeman and saw my new nutritionist who really turned my diet upside down and also a new occupational therapist who could have talked to us forever, and then I hung out with Debby while Jackie continued with chores and I rested, lied on the sofa and talked…

And today I’m posting this…

A Coin

gold and shiny

left on the deli counter

next to the tip jar

by an unknown customer

during a lunch rush

with one particularly frustrated

young lady

an unhappy customer who felt neglected

as I struggled

to get a cookie out of a jar with plastic tongs

to spoon salads to go from the case

to make change from the register

to take care of the long line

behind her

a religious coin, a guardian angel

I kept it in my pocket for a few days

it fell out in the car

on our way to my first neurologist appointment

Jackie sat to my left

the doctor stood right in front of me

I sat on the end of the patient’s table

my naked legs dangling

the doctor looked at my legs

and said to Jackie, do you see that?

yes I see, Jackie said

my muscles twitching uncontrollably

me completely unaware

The doctor blurted,

Mark, you have ALS

I stared at him then looked at Jackie

her entire body shaking

that’s it?!, she said, you’re just going to tell us that –

it can’t be anything else?

he had a list of neurological disorders on the computer behind him

and ruled them out

one by one

when it hit me, I got off the table

sat next to Jackie, fell into her arms and bawled,

Lou Gehrig, he played every game without a day off for 15 years straight

and then he got this

we left the office in shock

went to separate bathrooms down the hospital hall

I leaned on a wall and waited

when Jackie appeared we broke down

got it together and left

a few days later, without looking for it

I found the coin in the car between the seat and the door

it sits on a bookcase in my bedroom

Birthday/Un-birthday

12/2/16

My 55^th Birthday.

The day began slowly like all my days begin these days.

After doing my exercises I lied down in bed again to rest.

Jackie was getting ready to leave for work and came to my side

in tears telling me how much she loved me.

I didn’t need to get dressed this morning because 

Sara was coming over to the house to do energy work with me. 

In fact everything planned was at the house

so I wouldn’t have to venture out unless I wanted to.

Grandma Peggy helped me with my breakfast and at 10:00 am Sara appeared with her little Chihuahua Nala, who at some point during any massage will get up on the table and rest on your crotch.

It was our first session at the house so Sara got my father’s massage table from our pile of Stan downstairs. Sara bought that table for Stan a few years ago as she worked on him weekly the last few years.

I got up on the table in my jammies and our session began.

It was a very intense session, lying on my father’s table, unable to go to Sara’s studio because of an unsafe staircase.  I talked to her about my cranio/sacral session with Josh the day before and how he had me say out loud , I allow myself to heal on all levels. She said as she held my feet that I felt more open, more fluid. We talked about her relationship with my father, how she met with him weekly, and did so much more than give him massages. She helped him in the bathroom, she helped feed him, she worked with his issues as they came up, especially his tummy.

We talked about that phone call in May, when Stan’s caregiver wanted to take him to the hospital and I said no., not until I got there. She yelled at me over the phone for 5 minutes straight, I held the phone away from my ears, but I heard those 5 words loud and clear and they have not left my brain since, You are an awful son.

Sara held my head in her hands as I bawled, and she asked me what I would like to replace those words with. And so I repeated out loud 5 times, I am a good son, a good son, I am a good son, a good son, a good son. And Sara said, how about an amazing son, and I said no – a good son was enough. And I cried and cried.

It was quite a session, such a good release.

And then I had to get dressed as a wine salesman was coming over to taste me on some really nice wines.  We sat at the kitchen table listening to jazz and tasted and talked. It was a much better atmosphere for tasting then next to the triple sink at the store.

At 2 o’clock Debby and Liz came over for a writing workshop session. We sat around the kitchen table and discussed a poem I had started at the last workshop and then we did a couple of triggered writings on the spot, one about bicycles and one called “What have you held onto for too long?” There’s probably an infinite number of poems that might come out of that trigger for me… the most interesting one: “doing the right thing.”

After that good friend, Tracy came over with her kids, Jayden and Brody and we had such a nice visit. Jackie was home from work by then and Grandma Peggy came upstairs. Jayden had made me a beautiful large birthday card she had invested a lot of time into and had in big letters, “Happy Birthday Uncle Marky Moose” and Brody brought some big birthday balloons. The kids were so adorable. Brody wanted to know where everybody else was and why there were no other decorations.

 

I received so many calls and texts all day long and when Tracy and the kids left I went to lay down for a bit and listened to some of the voice mails and read over some of the birthday texts and called a few people back. As I talked on the phone my phone kept ringing… I lied down in bed and talked on the phone as Jackie prepared dinner until I heard our dinner guests arriving.  My voice was getting tired as was my body, but I did get a second wind for dinner with some of our bestest of friends, Dan and Denise, and John and Laura. By now Howie was home as well and soon enough his good buddy Jackson arrived.  We drank some Barbaresco and Barolo and ate a delicious spaghetti and meatball dinner.  Then cake and gifts, and love and laughter. John and Laura got us a foot massager and when Jackie tried it out she laughed hysterically and almost peed her pants. So we have a new addition to the living room, a foot massager/heater.

So that was my birthday. Double nickels. I finally have 2 nickels to rub together…

Yesterday was my un-birthday. Stan used to always say on the 26^th of December, “Christmas is coming.” And so my un-birthday. We had a 10:15 am appointment with my new naturopath doctor. She had the results of my food intolerance blood test. She took away – sugar, potatoes and fish. No dairy and grains at the same time. No iodized salt. And about a dozen new supplements and homeopathics as we begin a detox… I cried at the counter as I collected all the pills and realized all the foods I was saying goodbye to. I was overwhelmed.

Then we took Peg to the airport and said goodbye to her.

Then we went to Costco, but I just sat in the car.

Then we picked up our coffee order for the store.

Then we went to the co-op for lunch

Then I went to my therapist for more processing.

Then to Staples to buy office supplies for the stores and new office.

Then Jackie drove home through a mild snowstorm 

and we stopped at the store to drop it all off.

Then home to leftover spaghetti dinner.

Then shower and sleep…