This is my Grandma. Her name is Penny. She has ALS.

This post is deeply personal.  Because I am talking about a woman whom I love deeply.  Who is very sick.  And there’s nothing I can do about it.

My grandma was diagnosed with ALS in December of 2012. ALS (also known as Lou Gehrig’s disease) is a neurodegenerative disease where the nerves in your body begin to die, no longer allowing the brain to communicate to the different parts of the body. People with ALS lose their ability to walk, sit up, talk and eventually breath.  There is no cure for ALS and those diagnosed with the disease on average have a life expectancy of about 2 years.

I am writing this not only because my grandma is sick but because she is a beautiful woman.  Although she always looks stunning– she is gorgeous, and all of my memories of her always include perfectly manicured nails and a keen fashion sense– that is not the kind of beauty I am referring to.  My grandmother’s beauty radiates from within.  The kind of beauty you have to tell people about.

In these four short stories, little glimpses into the ways my grandmother has shined light into the world, I hope to declare from the rooftops the beauty that exists with this woman.  Stories that show her kindness, hospitality, generosity, fantastic sense of humor and loving personality.

Under Appreciated Art
I was maybe 5 or 6 years old and my brother and I were visiting my grandma.  She had my siblings and I over for long weekends all the time [my youngest brother, Danny, wasn’t yet born].  She always does the best job at being a grandma, like always having dessert, taking us to the park, buying us new clothes and giving us lots of presents.  I can’t remember where we were going, but we were driving home from a super awesome thing that amazing grandmas always do.  My brother and I were in the back seat when I struck gold.  I found  a blue, ink pen lodged in the seat beside me.  What is a 5 or 6 year old to do with said pen when there is no paper around?  What a crime!  I needed to express myself with this pen and I had neither coloring book nor Bible to scribble in.  But I was a creative child and soon my canvass had become the siding of the door I was sitting beside.  What luck to have found a clean surface to create a masterpiece upon.  In my deep, beyond my age humility, I drew no attention to the treasure I had made on the side of my grandma’s car door, and quietly exited when we arrived back to my grandma’s house.A few days after arriving back at my parent’s, my mother received a phone call.  It was grandma, and she was wondering about my masterpiece.  Only, my mom had it wrong.  She thought my grandma said my masterpiece was all over the couch.  I racked my brain.  I didn’t do anything to the couch, did I?  No, I am positive I did not express myself artistically on grandma’s couch.  “Mom, I promise!  I swear, I didn’t!”  Rightfully so, the incident was blamed on my younger, less wise brother, Ryan.  But nevertheless, my grandma was kind and forgiving.  She must have known it was me.  A 3-year-old could not possibly be as skilled as I was at the art of scribbling.  But she didn’t get mad.  In fact, I never heard about it again.  It wasn’t until I was a young adult that I had a flashback of scribbling in my grandma’s car and put 2 and 2 together.  My grandma is always this loving, so forgiving, extending grace when it is not deserved. I’m sorry grandma.

Tattoos and Eggplant Parm
Not only is my grandma extremely kind and loving she is inconspicuously generous.  As mentioned previously, she has always been good at spoiling me.  But her giving goes beyond ice cream and new toys. My grandma and her husband, “papa Al”, live in the Chicagoland suburbs.  Whenever my friends and I wanted to take a trip into the city, one of those being my bachelorette party, they were never hesitant about picking us up at the train station, letting us park our cars at their house or taking us out for lunch.  The first things out of my grandma’s mouth when we arrived after “hi, how are you”, was, “can I get you something to eat or drink”.  She is always having people over for dinner, radiating hospitality, and offers her home freely.

Early in our dating relationship, Jazz and I took a trip out to Chicago.  Anyone who knew Jazz when we started dating knew that his appearances, with dreadlocks, tattoos, infrequent showers and patched jeans, didn’t quite fit the mold of a stereotypical “good catch”; although I very strongly disagree with that.

Though I think these things may have made my grandma feel uncomfortable, she never wrote Jazz off.  She welcomed him to her home and made us a vegan, eggplant parmesan.  She asked him about his tattoos and what they meant.  She asked why he wore his hair the way he did.  She asked about his passions and interests.  She showed genuine interest in who he was as a person and was able to look past his appearances.  We spent a lovely day at the botanical gardens with my grandparents and I remember on our way home feeling so loved and respected that my grandma would open herself to someone she normally wouldn’t, simply because I loved him. This spoke volumes to both Jazz and I and is a blessing we will always hold close for the duration of our marriage.


Florida and Faith
My grandmother’s generosity goes beyond her family and extends to her faith community.  Grandma and papa Al are devout members at their parish, Our Lady of Perpetual Help, and have a deep and vibrant faith.  They actually both sent their children to the school there at some point or another [if you’re confused, grandma and Al didn’t marry until all of their kids were grown and out of the house].  Grandma and papa Al serve their community in numerous ways.  My grandma was appointed as a lay leader and served the eucharist during Mass on Sundays.  This act is symbolic of how I view her.  Always giving, extending love and kindness to those around her.

Over one of my college spring breaks, Grandma and Papa Al invited me to come stay with them for a week in their condo in Florida.  Of course, what broke college student, in the final stretch of a Michigan winter, who loves her grandparents would say no to that?  We went to the beach, went shopping, ate a lot of food and watched American Idol.  It was a very lovely week.

Towards the end of my stay, my grandma and I had a conversation about religion.  You see, I was raised a protestant Christian as my mom married a protestant man [hi dad!] and converted to his church, while my grandparents are Roman Catholic.   You might be surprised to hear this but protestants have not always thought highly of the catholic faith and vice versa (i.e. the reformation, the French wars of religion, the thirty years war, and the “troubles” in Ireland, just to name a few).  It is a tension that has torn apart nations not to mention families and friendships, even to this day.  During this conversation my grandma wanted to be clear about one thing, she wanted me to know that it didn’t matter what church tradition a person was raised in, that God’s love and grace surpasses those kinds of formalities.  And I whole heartedly agreed with her.  And even though the conversation we were having was theological, underneath it was personal. Deep down what we were telling each other was I love and accept you the way you are.  An all-loving, perfect God loving me as I am is one thing, but hearing an imperfect human being who has biases and baggage and misconceptions and expectations say she loves me the way I am is a love I find to be truly profound.  The entire world can learn from the love my grandma has for me.

Last Wishes and Last Laughs

This Christmas our family crammed our casseroles and roast ham onto a small table in the pool house of my grandparent’s condo.  This was the first holiday we celebrated after my grandparents moved out of their old house– a lovely tri level built by Papa Al himself, which boasted large windows, a beautiful garden and enough rooms to fit us all.  Grandma and Papa Al moved into their condo this summer as a way to avoid stairs as much as possible and eventually make it easy for a wheel chair and hospice to move in.  It was strange getting together for the holidays anywhere but their old house, not to mention in a pool house in the winter, but this Christmas felt oddly special none-the-less.

We stuffed ourselves full of all of our favorite foods, sitting in large wicker chairs with a snowy, poolside view.  We went around the table giving toasts and saying how much we loved (great) grandma/mom/wife/Penny.  We piled our plates high with pie and caramels and our glasses with wine and beer.  We opened a huge pile of presents and thanked one another for their thoughtfulness and generosity.  But unlike most Christmases, my grandma wanted to say something to all of us.  She used an app on her iPad to speak for her, as at the time she could barely talk.  We sat in silent anticipation, pondering what a woman with a terminal illness would say to her family after all she had lived through, all she had done for us and all her body had gone through in such a short period of time.  The voice from her iPad began to talk.  “I have an announcement”, it said, and my heart began to pound.  “My three children are going to be performing a song for us for our entertainment this evening.”  The smirk on her face helped me realize that this woman, my dear grandmother, is the most amazing person on the planet.  Because what may have been our last family gathering together of her life, rather than having us dwell on her sickness and the imminence of her death, she chose to live.  To make everyone laugh. And we did.  Because neither my mom nor my uncles are singers.  And saying that is a compliment.  They are REALLY bad!  My grandma keeps a recording of the performance as leverage for blackmail.  And she made almost every one of her children and grandchildren perform for everyone.  And we laughed the night away.  And my grandma smiled and played peek-a-boo with the babies.  I want to be like my grandma.  Grandma Penny, you are my hero.

How many people in your life can you say about them that they are unreservedly forgiving, exceedingly generous, lovingly open-minded, deeply spiritual and hilarious all at the same time? Really, how many? These kind of people are rarities, true gems, and I am very lucky to have one as my grandmother. To be her own flesh and blood is a true gift. It would be the joy of my life for her legacy to live on through me. I love you Grandma! You may feel weak right now but you are the strongest person I know.


Creative Commons License
Keeping Willow by Stacy Feyer-Salo is licensed under a Creative Commons Attribution 4.0 International License.


5 thoughts on “This is my Grandma. Her name is Penny. She has ALS.

  1. Mary Dodge says:

    Your grandmother, Penny, was an inspiration and best friend to my mom and grandmother of ten, Ann Arens. My mom had a lot of wonderful friends and taught me the meaning of friendship and how to be a true friend. Even though they met later in life, Penny was the kind of friend to my mom that my mom boasted about, that she was so grateful for, that she found when she least expected it, when she thought she had experienced all the joys and laughter that friendship could bring. Penny convinced my mom to go to Ireland with her, play golf with her, bowl with her, join the football club with her, and they had special memories together with their husbands Al and Paul who were also great friends. Penny has blessed more lives than she could ever imagine and, just like her, your tribute makes me smile. Please tell her that Ann’s daughter Mary Beth is sending her tons of love and laughter from Minnesota. I will never be able to thank her enough for her friendship and all the happiness she brought to my mom’s life.

  2. Michael Evans says:

    and best friend to my mom, Kathleen Brown! You see the thread here, it’s Penny. Everytime she’d see me, and it could be years in-between visits, she could remember the last conversation and ask for an update since then. She may have not always been the life of the party, she was the best audience! Love you Penny!

  3. Barbara freund says:

    Stacy, what a beautiful tribute to your sweet Grandmother, Penny. You see, Penny is my Mother, Sue Endre’s very best friend (adding to the thread) since grade school. I have witnessed first-hand the attributes that you so eloquently described for as long as I can remember. I can’t tell you how many times my brothers and I heard laughing and giggling and we knew immediately that mom was on the phone with Penny ( by the hour!). Penny is a huge part of our lives, and for that we are grateful. It has been wonderful to watch such a lovely friendship last 60+ years. They sure have set the bar high! Love to you all from the Endres.
    Barbara Endre Freund

  4. Stacey…Michael Evans shared your very loving and soulful letter about a truly Christian women of grace who embodies the virtue of Faith, Hope and Charity…she loves you deeply and thank you for sharing yourself. I now view my creative grandchildren in a different light and hope to celebrate their lives as your truly remarkable grandmother has…thank you, Stacey. I will never walk CBGarden without thoughts of Penny.
    Maureen Collins

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