Grief Story #5: Pete Benson

Grieving the Past and Future

Pete Benson

February 2015

This body of mine has always been a pretty good one: I have enjoyed good health and good intelligence. I have kept the body in good condition over the years through a variety of physical activities--bicycling, hiking, and contra-dancing among others. I remain as intellectually active now as ever. I started learning Russian at age 50, so I could become a translator, and I still accept translation assignments. I authored and published a book when I was 67.

Thus, as my 70th birthday came and went, I could still keep up on the bicycling and on the dance floor with most guys in their 40s. The only giveaway of my true chronological age is my skin, which shows the wrinkles and spots typical for a person who's spent much of a long life exposed to sunlight. I'm also more bald than not-- but my hair started thinning noticeably when I was 18, and had progressed to a substantial bald spot by the time I was 30, so perhaps that does not count.

When I was 73 (a year and half ago), I was diagnosed with chronic lymphocytic leukemia (CLL). The doctor giving me the diagnosis pointed out that the word “chronic” in the name is the “good news”; that because the disease progresses slowly, something else is likely to carry me off before the CLL does, in view of my age.

Okay, no big deal, I felt.

Then I found myself unable to bicycle up moderate hills that previously were not a challenge for me. I could no longer manage the rather aerobic contra-dancing, which I could previously do all evening without a break. I was often too tired for sex in the evening, although previously I had continued to enjoy an active sex life with both my wife and (being polyamorous) with a secondary lover.

CLL introduces faulty red blood cells into the blood stream, crowding out the healthy cells, which are the carriers of oxygen to the muscles, organs, and other tissues. In spite of a lifetime of cardiovascular and pulmonary conditioning, I found myself panting for breath after only modest exertion. More recently, I have often been short of breath for a number of minutes after no exertion at all or after a meal, as blood and oxygen are diverted to the stomach. I must now sleep or otherwise be resting in bed from 10 to 13 hours out of 24, usually. My body weight has dropped more than 10 kilos in recent months--without my trying. Much of that, I'm sure, has been muscle mass, although my belt cinches to a tighter

hole now, reflecting some welcome loss of my modest paunch.

CLL also damages the immune system, making me more vulnerable to infectious diseases. In December 2014, I developed a cold--rare for me in itself. The cold did not clear up, but deepened into a more substantial respiratory distress. I ended up spending eleven days in the hospital in January, where the respiratory distress was diagnosed as

pneumonia. It nearly killed me at one point.

I should note in passing that there is a glimmer of light in this picture: My oncologist has promised to put me on a recently developed new pharmaceutical for CLL chemotherapy, which he says has shown very encouraging results in its initial clinical trials. He tells me the odds 12 are quite good that within six months I'll be feeling the way I did 3 years ago--i.e.

pre-CLL.

I am also watching my partner and wife, Deborah, as she slides downhill in her own health. She was diagnosed with Parkinson's disease seven years ago (at age 54, rather younger than usual for that disease). She now walks with very slow, short steps with a cane (the “Parkinson's shuffle”) and has constant generalized pain and progressing numbness in some extremities. She also tires quickly.

My grief is therefore primarily for my lost vigor, and loss of the things that I have most enjoyed in my life, and for the loss of much of what I have enjoyed sharing with Deborah. There is also a prospective grief, as Deborah and I both realistically anticipate the end of this physical life for both of us, probably in the nearer rather than more remote future, and prepare for it by getting our advance directives and testamentary wills in order, getting rid of many of our possessions and other things.

Deborah and I both know (don't just “believe in,” but know) that consciousness is the basic reality of the universe and that our existence will continue in another realm after these physical bodies (designed to cease functioning after some time, after all) have served their purpose and have been sloughed off. So there is no fear of physical death, nor even trepidation or anxiety. Indeed, we have already visited these realms during this physical lifetime as part of some shamanic training that we both received, as well as other experiences.

The feeling is perhaps comparable to that of college seniors as graduation time approaches, knowing that they will never again see most of their friends and lovers even as they excitedly look forward to their adult lives out in the general world following graduation. Their knowledge and anticipation of what is to come does little to lessen the poignancy of the

impending loss of their life as students.

Grief Story #4 contributed by Jade Sawyer

Fourth installment of the community grief story project.

Grief Journey

By Jade Sawyer

Thank you all for bearing

witness to this journey…

concentric, or is it a spiral? I know

it wasn’t linear.

The first huge bolder of

pain was coming home from school

to find no one home but my

brother, who was acting really

weird. It was obvious that he was

clueless as to how to explain what

was going on.

In pieces, like a torn sheet

of tissue paper, things were sorted

out to me. The state police had

come and taken Mom to the State

Hospital, not for what she did

wrong but for what she wasn’t

doing: a catatonic state where she

had just broken down and was no

longer functioning.

Back then a police person

had to transport and sign in a

patient. I would have told you she

was gone for about three weeks

but it was more like two and a half

months. I was numb, I can’t tell

you who cooked or shopped or did

laundry. The central hub of our

lives was absent and none of us

were very functional.

Three years later, my

father, the light of my life, had his

first heart attack. I heard

pedestals crashing. First Mom and

then Dad. I knew I couldn’t count

on either any more as main

supports. Dad rehabbed, even

played tennis but three years later

died from a massive heart attack.

The first time I was taken

to the daughter of the doctor, a

family that were strangers. I

WANTED TO BE WITH MY

FAMILY. The 2nd was the longest

40 minutes of my life.

Ironically, I was in the living

room of the house where my best

friend’s family used to live before

they moved. Gone were the easy

chairs and the memories of making

forts & having popcorn watching

Disney. No, this had formal and

cold décor, and I suffered a very

long wait. Once again I had been

dropped off for protection but

felt more like abandonment to me!

Finally my mom came in. Her

face matched the white drapes (I

knew what she was going to say and

how hard it was for her.) “Your

dad’s gone. The last thing he said

was, ‘give my love to Janie’.”

She became horizontal after

that. When I describe her that

way in a 12 step meeting, someone

will inevitably come up to me after

& say, “Thank your for putting it

that way. My mom was horizontal,

too.” Mom never really recovered

from Dad’s death. Friends & family

were there for us for a while but

support eventually falls off. I don’t

know who shopped, cooked or

cleaned. I do know that at some

point each day mom would cook

herself a steak and then not long

after eating, she lay back down on

the couch.

My two oldest brothers had

gone on to college and I eventually

had my license. My 3rd brother and

I would just check in as to who

most wanted/needed the car and

head out. “Jet” I used to call it.

Sometimes I still do that. Rather

than stick around until my

responsibilities are met as a

householder, I jet out!

I stayed numb for a really

long time. When I was in my first

summer school towards a master’s

in teaching, two of my three

brothers showed up at a dance

where I was celebrating my 21st

birthday. Gary, my favorite, came

in and I was totally exuberant and

just a little bit drunk. He asked me

to come outside and there was

Alan, #2 brother in the car. It was

a quiet, beautiful summer’s night

but it soon darkened with Gary’s

explanation as to the purpose of

their trip. They had driven all that

way to tell me in person that Mom

had died from her drinking,

complicated with the heavy

medications she was taking. My

oldest brother found her at home,

having passed a few days back.

Before Mom died, loving

adults had counseled me to “Go on

with my life, pursue educational

dreams.” I had stayed close by

home, turning down some schools

with more status but also more

distance.

My undergraduate school

was a blast. Fabulous teachers, a

full scholarship, and spoiled rich

kids who knew how to party !! I

would go home on weekends, check

on mom, and often borrow the car

for the weekend. Super stressful,

difficult classes gave way to

fraternity “mixers.” Lots of alcohol

and my sorority mixed with one of

the fraternities. Trust me I’m not

the sorority type but that was how

people found their niche, status,

and alcohol!

Now, I was to be careful

because sometimes my dad would

drink too much and at the end Mom

became a late stage alcoholic.

When I found cannabis, there was

a match made in heaven: stuff all

my feelings, enjoy music, dancing

and change from “a 3 to at least an

8”. The major stressors of my

senior year fell away and I was

able to maintain the grades I

needed as a scholarship student.

FAST Forward to 1984! I

decided (or God did) that it was

time to get clean. And in 9/14/2014 

I celebrated 30 years.

This is a big deal but I tell

newcomers just don’t drink or use

and don’t die!

In the 12-step community,

one both sponsors newer people

and has a sponsor. I’ve lost several

…first a wonderful woman with a

brain tumor that was cancerous,

MY ACOA sponsor. When I woke

up and started working AA, my

sponsor in that program died after

just a few years of our working

together. I just lost Mary TW,

who had over 40 years of sobriety.

As I age and grow in sobriety, my

own mortality becomes more and

more apparent. I try to simply

wear it on my shoulder, like a great

teacher.

My best AA friend just died

three years ago and we were both

good teachers for each other. I

miss her very much. She thought

she had beat bladder cancer having

had a brilliant doctor construct a

new bladder for her but the

cancer reoccurred. A small circle

of us would meet at her magical

home in Cheshire and have

gratitude meetings!

The greatest privilege was

to sponsor a newly returned

woman, a “retread” as she called

herself. She found she had a brain

tumor after falling, and losing her

speech. She completed her 4th

step, one that can be a long and

arduous process, in 48 hours. She’d

always say, “love and light, that’s

all there is !” I got to sit with her

on a nearly daily basis post

surgery. I’ve never been clearer

that I was exactly where I was

supposed to be doing exactly what

I was supposed to be doing. The

tumor was in that area of her brain

where speech function occurs. She

became embarrassed and only

wanted her mom, myself and her

housemate, who was working full

time, to be with her, so I carried

mornings, daily.

Her surgeon got as much as

she could and then shared only half

truths with her post op. I let her

know closer to the truth, as we had

a pact that I wouldn’t dress

anything up. I didn’t share exact

things but did let her know that it

was likely that the tumor would reoccur

at some point.

The surgeon told my friend’s

mother, and a few of us, that

Marilyn would seem normal and

then after 6 months, go down hill

really fast. It was much shorter

than that- more like a month. I

was able to literally orchestrate

people from her church to come in

pairs, only five minutes each, or

less, to say goodbye and/or

express their love.

HIGH LEVEL

SERVICE.

She passed the morning of

my expected return from a

conference at the coast. Her

mother, too didn’t arrive in time,

which her mom described as “just

like her.“ So many teachers have

agreed to come into my life to

bring their lessons and when it’s

time, they cast off their bodies.

I still miss fishing with my

dad, rowing the huge boat for him

as he said (it scared the fish

away), gardening with my mom,

reading the big book with Marilyn

and cracking up as we identified

with some of the descriptions and

characters - probably the most, my

spiritual connection with Susan.

What I know now is that

when I am missing someone, that’s

his or her presence. That they are

with me. Spirit has brought me to

here to CSL and the wonderful

teachings, treatments, and classes.

As Holly Near says in one of

her songs, “My past has brought

me brilliantly to here” !!!

Grief Story #3: My Grief Story by Jill Scheidell

Third installment of the Community Grief Story project.

My Grief Story

By Jill Scheidell

I have been very fortunate in my life to have my parents until I was 50 years old. 

My mother passed 4 years ago this July. She had a series of heart attacks and strokes starting 4 years prior to that. The heart attacks were first. Then she had a stroke while my dad was in the hospital for a knee replacement. 

She was so worried about that surgery. She knew a number of people that had bad experiences with knee replacements and my dad was in his early 80s. He had a heart attack after the surgery and was still in the hospital. He was out of the woods, so to speak, so she went to an evening meeting of a club she belonged to. She needed a break from the hospital and knew seeing her woman friends would be just the ticket. 

While at the meeting, she had her first stroke. Thank goodness she was with them and not at home alone. They got her an ambulance right away and she was taken to the same hospital that my dad was at, Sacred Heart downtown. I think this was the beginning of my grieving. 

I remember going from the 4^th floor where dad was to the 6^th floor where mom was for a week. Having to tell dad who was recovering from a heart attack that mom couldn’t come visit because she was admitted for a stroke was a very hard moment. I remember asking the doctor to be there in case something happened after he heard the news, we were all just speechless. My dad kept asking when he could see her. They finally wheeled her to his floor 4 days later and it was the sweetest reunion. She looked so disheveled and out of it, and my dad just held her hand and smiled, so happy to have his sweetheart near!

My mom’s personality changed dramatically from then on. She didn’t seem to have the ability to listen but she talked nonstop. We all knew it was from the stroke and the doctor told us to be grateful that this was the only change, as many people become paralyzed and bed ridden. She could walk and talk and function normally. But I missed the talks we had before, the ones with give and take. The mom I knew was gone and I was angry and frustrated. 

It got to where when the phone would ring my family would see it was her on the caller ID and not answer because she would keep whoever answered the phone for at least an hour. That broke my heart to see my family react in this way. The grandma they knew was so different. I tried to tell them that this was just a result of the stroke, and they understood but they felt like she was a stranger. I longed for the days before the stroke. I felt it was my duty to listen and give her as much time as she wanted from me. She had been such an attentive and caring mom, I owed her that. But it was very hard. No more heart to heart talks, just endless listening. 

I felt guilty, she was here but I wasn’t enjoying our time together. There were moments here and there where she would ask a question and actually listen to the answer, but it was as if her brain just couldn’t slow down to listen, she just wanted to verbalize every thought she had right when she had it.

She had a few more strokes until she had a final big one, and we were told there was nothing they could do but keep her comfortable. We agreed to have her stay in the hospital and pass away there. We never thought she would go first, my dad was eight years older than her. She lived for a week, they said she was gone and couldn’t respond or hear us. 

We witnessed a miracle when, one evening, my dad bent down to kiss her and she puckered up and kissed back. From that, my dad wondered if there was something more we could do. They assured us the damage was too severe. We made sure a family member was there round the clock. She passed away and left my dad alone.

From that moment on my focus was on my dad and his needs and helping him to deal with his pain and sorrow. He was a loner and didn’t keep in tough with friends. I was the daughter in town; my brother lives here but had many family issues going on. Among them a daughter on drugs who stole from family, she had stolen my mom’s wedding ring before she passed and pawned it, which really broke my mom’s heart. So I didn’t want to ask them for help unless I really needed it. All other sibs were out of town. My sister and brother-in-law in Medford were a big help when they came to town, and we talked a lot on the phone about issues. Other sibs were out of the state.

My mom had been the social one and planned everything they did with her woman friends and their husbands. I wanted to be strong for him. There were so many things she handled that he didn’t know about so we started to figure them out and I took over a lot of the tasks. He was so down it was easier for me to just do it. 

I kept telling myself that I had already grieved her loss because it felt like she had been gone for a while. I was kidding myself. I think I didn’t want to feel the pain so I just stuffed it down using the excuse of being strong for my dad. I also remember one evening around Christmas when my kids and husband were asleep, I thought, and I sat near the tree remembering the good times when I was a kid with my mom there and I just bawled my heart out. I was finally letting it out, and my youngest son who was about 12, came out from his room and gave me a big hug and said, “Mommy, please don’t cry.” I immediately felt I needed to pull it together for him. I wish I would have done it differently and explained to him that this is a natural part of grieving and it’s okay to cry and mommy would be okay.

My dad lived 3 years past my mom. He had hospice at home and it was a totally different experience, really beautiful. I’m so glad we were able to grant him his wish to stay at home as long as possible and not die in the hospital. I feel really good about the last years I spent with him, no regrets at all. We became very close, and I became comfortable with just being present for him and not necessarily having conversation. He wasn’t much of a talker. 

In the beginning I was always trying to fill in the space but I came to see he enjoyed just having the company. He was my step dad but they were married for 40 years and I considered him my dad and called him that. What a wonderful man he was to marry my mom with 5 kids. I am so glad I could give back to him at the end of his life. He used to apologize all the time that he needed help and I would say I’m glad I finally had the opportunity to do it for him. He really changed our lives in the best way when they married. He gave us stability, taught us about the simple joys of nature through gardening and camping, and was always there when we needed him.

I really believe that they are nearby and are angels for us now. I talk to them often and ask for help sometimes when I have an issue to turn over to the universe. Sometimes when I feel the need to cry but it won’t come, I watch the DVD we made for my mom’s service and that always helps me to let it out.

I have really appreciated this class; it feels totally safe to share everything here. So nice to have places like that. Thanks to everyone that was here and for sharing your feelings, comments and stories. I feel this is a great help, and I now realize that this will be ongoing. It’s like a wound that slowly scars, and the scar may get fainter but it’s always there. I want to apply what I have learned from Science and Mind and live in appreciation, but acknowledge the pain and offer myself compassion. I think it is a life’s work, and I will continue to work on it.