Ed Bartosik's Blog

Life in a Few Paragraphs

Ed Bartosik

Ed Bartosik
Bronx, New York, USA
June 21
www.edbartosik.com A native of Bronx, New York. Raised in the foster care system led by Catholic Charities. A son of an alcoholic father and a mentally ill mother who were suvivors of Nazi slave camps, this is my life in a few paragraphs. My theatrical and social work career spans some 40 years. I was diagnosed with ALS in December of 2012, this is my life with ALS.


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AUGUST 17, 2013 7:29PM

Living With ALS: Lost in Space

Blog Post # 69

August 17, 2013 

As the Jupiter One crash lands on the floor and all occupants survived the landing, I hereby claim this hospital bed to be the property of me.  My life raft on a sea of morphine and adderol to help me navigate the very fine… Read full post »

AUGUST 14, 2013 9:59AM

Living With ALS: Faces So Pure

Blog Post # 68

August 14, 2013

My children surprised me with a visit last night.  I wasn't expecting them until Thursday.  It was such a surprise,  I thought I was being punked.   They told their mom they could not wait until Thursday to see me.  I was so glad… Read full post »

Blog Post # 67

August 13, 2013

 Entering a new phase as my tongue has atrophied and is blocking my airway.   I am depending on the bipap and morphine more and more as I struggle to keep my head above water.  Jacqui spent the night with me as I am… Read full post »

AUGUST 12, 2013 6:34AM

Living With ALS: Rhythm Management

Blog Post# 66

August 12, 2013

I know it is a bit early to expect, but I'm finding it difficult to manage the rhythm of my life.  I know how to go with the flow.  It has been a few steady days of chanting namyo-ho-renge-kyo, reciting morning and evening gonyo.  Still,… Read full post »

AUGUST 11, 2013 7:21AM

Living With ALS: Settling In

Blog Post #65

August 11, 2013

It has been some time since I had a great day.  Yesterday was such a day.  

Rebecca, a young nurse's aide, whose warm and infectious smile greeted me with the warmest "good morning," that I did really feel like a child again.  Just writing… Read full post »

AUGUST 9, 2013 4:36AM

Living With ALS: Simple Joys

Blog Post #64

August 9, 2013

 There is this one simple little pleasure that I've grown accustomed to since my diagnosis of ALS.  I need to sit upright in a 90° angle.  Maintaining a good posture reduces stress.  This in turn makes you happy and being happy is my modus stratage… Read full post »

AUGUST 8, 2013 2:31AM

Living With ALS: Taking Stock

Blog Post #63

August 8, 2013

If one is measured by the company one keeps, than I am no fool nor am I poor of heart or lacking soul.  Since coming to Calvary on Monday, there has been a steady stream of friends coming to visit.   Some I have not… Read full post »

AUGUST 6, 2013 10:10AM

Living With ALS: Trip to Calvary

Blog Post#62

August 6, 2013

We did everything we could to prepare for the transfer to Calvary Hospital.  Proper bipap machine, check, sponge bath,check, morphine for anxiety,check.  A smooth transition ensued to boarding the ambulance for the ten minute ride to Calvary Hospital.  All o… Read full post »

AUGUST 5, 2013 8:12AM

Living With A.L.S.: High Anxiety

Blog post #62

August 5, 2013

Awoke this morning thinking of Mel Brooks' lyrics.

Sometimes I feel like I'm gonna explode and

when I'm approaching total overload

I know that when I'm having a panic attack

 To duck and cover

Cuz I can feel it coming

Well it's high anxiety!… Read full post »

Blog Post #61

August 4, 2013

Tomorrow is my move to Calvary Hospital and its a mixed blessing.  On the one hand I'll get the care and attention I need and on the other hand it is a hospital for the terminally ill.  Calvary is where my father went to die… Read full post »

Editor’s Pick
AUGUST 2, 2013 7:22AM

Living With ALS: Pain Management

Blog post #59

August 2, 2013

 "Where are the papers old man?"

"In the study, in the top left hand drawer  under the false bottom of the desk drawer next to the spy glass," I offered quickly at the slightest hint of torture.

I now know I'm a wuss when it… Read full post »

Blog post #58

July 31, 2013

     Twenty or so Indian, Pakistani and a few white angels surrounded my hospital bed.  All dressed in white. Was I in heaven?  The ambient sounds of alarms, beeps and pings now grounded me as reality closed in.  Gasping for air doesn't do the… Read full post »

Blog post 57

 July 30, 2013

     My second stay at Montefiore Hospital is not the experience of the first.  This time around most of the staff acknowledged my ALS.  The trouble now is weakness in my breathing muscles.  In this disease if you use it, you lose it. &nb… Read full post »

Horse rides


Tales of the Home: Horsing Around, Part Two.


            Herbie was Dominican by birth and his folks immigrated when he was an infant.  Herbie was the runt of the litter.  A gimp with one bad leg and a bad left a/… Read full post »

JULY 19, 2013 2:04PM

Living with ALS: Hospitalized

kids hospital

Blog Post #56

July 19, 2013

I just spent seven days in the hospital due to bacterial pneumonia.  Good news is I quit smoking.  That means everything.  I can't afford to relive this experience again.  My week in the hospital really showed me how/… Read full post »

"Tales of the Home" are a collection of stories from my days in the Kennedy Home.  Some characters and stories have been combined to give the reader a fuller understanding of what life was like in this institution of 270 children in the Bronx during the 60's and early 70's.  Some names… Read full post »
JUNE 26, 2013 11:38AM

Living with ALS: Health Update June


Blog Post # 55

June 26, 2013


Got my new CPAP machine and it's been a hit and miss proposition only because of the heat wave we've been experiencing over the past few days.  The machine is made to help with my sleep apnea that/Read full post »

JUNE 21, 2013 12:52PM

Living with ALS: Birthday Wishes




Blog Post # 54

June 21, 2013


I was born on the first day of summer 57 years ago.  June 21, 1956 was the day that wishes came true for Josef and Halina Bartosik, recent immigrants from war torn/… Read full post »

Ellesse and Zach and me

Blog Post 53

June 17, 2013


It has been awhile since my last blog entry.  I have been working on my memoir, which is really a daunting task as I try to make sense of my early childhood experiences.  Chapter one is just about finished/… Read full post »

JUNE 1, 2013 8:11AM

Living with ALS: Feeding Tube?


Blog Post 52

June 1, 2013


            Alright, so I've been agonizing over this for about two weeks now.  Should I go ahead with the procedure of placing a PEG in my abdomen or not?  The reason for having the procedur/… Read full post »

MAY 30, 2013 4:47PM

Living with ALS: Alien Abduction


Blog Post 51

May 30, 2013


            There were wires coming out of my body!  There were electrodes with wires, dozens of them, streaming along my body to a junction box near my head as I lay in a darkened room.  Wir/… Read full post »

MAY 26, 2013 3:54PM

Living with ALS: Know Thyself!


Blog Post 50

May 25, 2013

            "Every now and then when I smell the sweet aroma of honeysuckle in late summer or the musky odor of damp fallen leaves in autumn, I am transported to my days at the Lt. Joseph P. Kennedy Jr./… Read full post »

MAY 18, 2013 11:22AM

Living with ALS: What Up Homie!


Blog Post 49

May 18, 2013


I received a visit from my Kennedy Home homies Anna De Jesus and Larry Byrnes.  I haven't seen these guys in about 40 years.  We were the original homies long before "homie" became a thing you called your friend/… Read full post »


Blog Post #48

May 12, 2013



To live or not to live, that is the question.

Is it better to stay, and suffer all of the ridiculous highs and lows of life?
Or to leave, and avoid the trials and tribulations altogether?

Read full post »

MAY 10, 2013 3:21PM

Living with ALS: Health Update


Blog post #47

May 10, 2013

Health Care in the US is such a mixed bag, continuity of care being a major speed bump.  I have all the equipment I need and then some without co-pays.  So, I guess I can't complain too much.  However,/… Read full post »