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Posts tagged ‘Karen’


Michael, I already miss you. I last saw you on July 10th, and somehow the time went by, and I didn’t come to see you again. Even though I knew you were in stage four lung cancer, I always believed you were going to recover.  Oh how I wished and prayed, as all wish and pray for their loved ones who have terminal illnesses.

I started writing this the day you died, Michael, but then I couldn’t continue. The grief of losing you and the life we live continuing on, merging, converging to create confusion.  You died on Saturday, July 21st, and one week later your 12 1/2 year old dog Kobe was diagnosed with diabetes.

Your wife, my sister Karen, stayed home for two weeks, but then returned to work. It’s so hard for her, but it’s a good thing that she did.  I am working from home now, so I volunteered to spend time with Kobe a couple of days a week, and my other brother-in-law Doug did, too.

I have been so glad to be there for Karen, for Kobe, for you, Michael. I like to think that you would be proud of me, or happy at least, that I stepped up and helped your family out. You and Karen were there for me in so many magnanimous ways.  Even when you didn’t think I deserved your help, you still helped me.  I can never repay the kindness, so I don’t try.  I just do what I think is right, now.

It’s now been over seven months since you have passed. We have not forgotten you, but think of you each day. It feels like you were just here, and it’s so weird that you are not.

I haven’t written anything since Mike died. It seems I have just been drifting day to day…just trying to get through it. Get through what? Winter? Sadness? Life?

My cat Cherie died in January. Doug came to help me take her to the vet. She had not left the apartment since I took her to be spayed when she was six months old. Five years later, I picked Doug up at lunchtime, so he could catch her to put her in the carrier and we could take her to Dr. Levine’s. She wasn’t eating. She was losing weight, and appeared to be panting and thirsty. She had to go, but I knew she would be difficult to catch. Doug cornered her in the hallway, wrapped her in a towel, and she was dead before she reached the carrier…I think so. I think she was dead even before he put her in there. The carrier door fell off, and we were fighting with it, trying to get it back on. I worried she would try to scratch her way out, but she didn’t move.

I knew then she was dead.  I started freaking out, but Doug, in his constant pragmatic way, said, “I think you’re right, but let’s not panic. She may be in shock. Let’s just get her to the vet, and see what they say.” We got in the car and started driving the few blocks to the vet. I called Karen to tell her, and I was thinking,  “Oh my god, I’m in the car with Doug and my dead cat, pretending that there’s a chance she’s just in shock.” We got to the vet, and I knew she was dead, but I was still upset that someone was not coming NOW to help us. That was about a three-minute wait that felt like forever.

We went into the examination room, and the vet, she was amazing. She was yelling for tubes and sticking a tube down the cat’s throat and blowing in it. It was shocking and there was a minute there when I thought, “She just may bring this cat back to life”, though even while I was thinking it I knew it was a silly thought. I knew the cat was dead and she was just being valiant, because it was her job.

Sharon was diagnosed with Non-small cell lung cancer just about the same time as Mike. Sharon, my best high school friend, the Lucy to my Ethel. The love I had for Sharon was incomparable. We used to dream we would be rich wives and lunch and shop together everyday, but as usual, life had other plans and we drifted apart, but always apart and back together, until one day we didn’t drift back together.

Sharon died on March 1, 2013. I found out because Ricky posted a message on Facebook saying that he was so sad that she had passed. What? She passed? I don’t know why, but I always thought I would be one of the first to know. It just felt that my love for her was so strong, so lasting that everyone would know that I needed to know. Another silly thought, because honestly, I wasn’t a part of her world when she finally left it.  When she left it though, I lost it.

It was so hard to deal with because she was so young, and Mike was so young. It was so hard to deal with because 2012 had been a year of loss, and I had such high hopes for 2013, then we lost a bunch of loved ones again. It was so hard because I had these really awesome memories of Sharon and I, and I could never tell her again, “Do you remember…?” I think that is what is so hard for so many of us when dealing with loss.

Sharon’s wake was hard, it was so hard. I couldn’t believe it was her in the coffin, and I said, “She doesn’t look like herself”, but her cousin Marie said, “Meg, they did such a good job. She was so sick, she looked so sick. She looks pretty now. She’s wearing her favorite suit and necklace.” So, I looked at her again, and she did look so pretty, and so at rest. My poor little Sharon. God, I loved that girl.

The funeral was even tougher, because I knew that this is it. It’s over. You will never see her again. But, it was funny, too. It was held at Our Lady of Sorrows, the church Sharon and I used to go to for Midnight Mass, and yes, we were stoned. One time we got the giggles in church, because we were amazed that the ceiling didn’t fall down on us heathens. It was times like that, and there were a lot of them, that I would really miss. So I was standing there next to Harry, Sharon’s high school boyfriend and lifelong friend, while the priest was talking about Sharon, and I was thinking about the ceiling falling in on us, and I was laughing to myself. And I was thinking about how Sharon would feel about me laughing, and I laughed again.

It’s like that with loss. Laughter does ease the pain, and as we are further removed from the immediacy of the loss, the laughter becomes even more important. Now, when I think of Sharon, I think of the fun times, and I smile. I smile when I think of my brother-in-law, my best friend, my mother, my father, and all of our loved ones~so many~that have gone before. Loss is life; the end of it. It’s inevitable. Laughter is a device life gives us to face the loss. I miss each of them so much. I just hope to be of such character to be missed as much when it’s my time to leave you, and you will laugh; oh god, how you’ll laugh.

Note: since I began this post, I have been laid off…yes, an unemployed bum, again.  It has taken me ten months to finish this story. A tumultuous and sad year, but summer is almost here, and the promise of a new life. Another new start for this old life.  And I remain forever grateful, to those who have passed on, and those of you still here on this orb, offering love and encouragement. I love. I love. I love you all. Thank you.



Mommy and ALS

I wrote this in 2011, but I guess I never posted it on this blog! I wanted to publish it now, so that you all could get a feel of what it’s like to live with ALS, as a patient, and as a loved one of a patient.

My mother Elaine was born on October 2, 1924 in Rockford, Illinois. She was a fabulous beauty with many suitors, and a few fiancés, but of course, life intervened and she made it through college to move to New York City, where she met my father, married, and had eleven children, one of whom died of SIDS at three months old.  She was an actress, lecturer in her church, politically active, and a Children’s Librarian for many years at local library.

One day in 1980, she started feeling a sore throat.  It bothered her, but she was not one to run to the doctor’s office.  She kept saying that she would go if she didn’t start to feel better soon.  She said that for a month.  Finally, she realized the sore throat was not going away, and she went to the doctor, who sent her for tests, and she found out she had Amyotrophic Lateral Sclerosis or ALS for short, or as it is commonly known, Lou Gehrig’s disease:

“Henry LouisLouGehrig (June 19, 1903 – June 2, 1941).  Gehrig is chiefly remembered for his prowess as a hitter, his consecutive games-played record and its subsequent longevity, and the pathos of his farewell from baseball at age 36, when he was stricken with a fatal neurological disease.”~Wikipedia

I must admit, when I found out, I moved within months to California.  I was twenty-one years old and subconsciously but selfishly knew that I could not watch the events unfold.  I could not lose my mother.

During the next year, Mommy struggled to live each day, but she continued to work in the South Orange Public Library as a Children’s Librarian.  She lost her voice completely, lost use of her legs and had difficulty using her arms and hands.  She was confined to a wheelchair, and had no real form of communication except her eyes and guttural sounds.  This was causing intense depression for her, as she was a Communications Major, Actress, Writer, Librarian.  Before she could no longer write, she was keeping a journal of her feelings about the onset of this disease.  One day I read in her journal how hard it was to lose one’s voice, of all things, when your life is built around communicating.  It was heartbreaking.

The children of the library to the rescue!  They held a benefit to raise money to buy a newly designed computer for my mother to use at the library.  She could type into the computer, and it would speak for her!  This was quite a miracle in 1981, and it meant she could continue working with the kids, whom she loved so well, and who loved her as much or more.elainek_library_als_1980selainek_solibrary_atthecomputer_1980s

I moved back to South Orange, as my big sister Tina had written me to advise that Karen could not bear the brunt of the caretaking alone.  My father was eleven years older than my mother, and crippled by intense love and a pre-sense of loss.  My brother Kevin helped of course, but Karen really was the primary caregiver for my mother.  The other brothers and sisters were older, with young families of their own, and limited time to offer assistance.  So, I returned.

The disease continued to take its toll rapidly, and my mother continued to fight back. She just would not give up on the quality of life.  She wanted to wear what she thought were her finest dresses (she would be so mad if I tried to choose what she should wear, she was sick, not daft!), all the food she always ate such as steak and pizza, albeit pulverized, and of course, her Five-O’clock Cocktails.  We would make blender drinks, and she would have her cocktails through a straw.  She was happiest when her fragmenting world showed signs of normalcy.

She insisted on going places.  The shopping outlets, plays, out to dinner.  She didn’t want to be a shut-in.  There were many people back then who had a problem with a dying woman in a wheelchair enjoying life.  I don’t know how much that has changed, but I pray our world is wiser, and we realize that we may very well wheel that chair one day!  Also, wheelchair accessibility in the early eighties was so limited.  We would show up somewhere, and find we could not continue with our plans due to narrow aisles or no elevators.  There were days we were so happy to have just a little more time together.  There were days we ended up so disheartened by an unmoving world in our wildly changing lives.

A woman wrote to Mommy and said, “I don’t know how you do it.  I saw you at church, and you are so brave.  I have just found out I have ALS, and I am really scared.”  This woman was embarrassed, as the world wanted the dying to be.  She locked herself away and ate baby food, and was gone in six months.  I have finally learned, from this experience and others like it, that no matter what the world throws at you, you have to fight.  Even if you don’t win the war, the battles won make you a champion!

As the disease progressed, and the caretaking became more difficult, my mother’s and my depression worsened.  I am highly ashamed to admit that I felt the need to confess all my life’s sins to my mother.  Why?  I cannot explain it.  Somehow I felt she needed to know.  I wished the moment after, and forever since that I did not do that.  The hurt on her face was clearly readable.  There was complete communication coming from her eyes.  I had cut her deeply.  I could not take it back, but I wish I could have said, “Only kidding.”

After that, I left for California again.  I was selfishly immature for a twenty-three year old.  I went back to Cambria, California, and worked as a prep-cook in a local restaurant, and cocktail-waitressed, and sometimes bartended in the big Saloon.  I lived in an apartment above the saloon without a phone.  On the morning of June 25, 1983, my boss from the restaurant came knocking on my apartment door, and calling my name, waking me up.  Did I think, “What is she doing here?  She never comes here.”  No, I knew.  I started crying immediately.  I went outside and placed a collect call to my sister Karen, who confirmed it.  Mommy was gone.

I tried to work and act like it was no big deal.  I made it through the first night, but the next day I broke down on the restaurant’s kitchen floor.  I had no money to return for the wake or funeral, and so I remained in my little apartment above the bar, getting drunk and crying over the pictures of and letters from my Mom.  I stayed there for a week.  Part of my heart stayed there forever.  It was the first time I experienced such true life-altering loss, and I had removed myself from the epicenter of support.  You would have thought that would have been a lesson learned.  Of course, it wasn’t.  The lessons I should have learned from this eluded me for many years.

I heard the Funeral was big. There were police escorts.  Everyone loved my mother so.  I still hear from so many people how much she meant to them, to their parents, to their children.   I am so proud to say that Elaine Marie Kall Marlowe was my mother.  I just wish she could see I am finally learning the lessons she tried to teach through her words, and when there were no words, through her actions.