Parkinson’s: As Is

 Snarky Parky & me 

A Journey Into Parkinson's with Nancy Mellon 

Blog Coordinated by Corrine Bayraktaroglu

As Is

“The Five Invitations” by Frank Ostaseski. “Discovering What Death Can Teach Us About Living Fully.” 

Mr. Leo, my parent's friend and my dear friend, from my childhood, died last night. 

Leo never married or lived with a friend. The closest he came to living with anyone else, was when he and my parents bought a small cottage on Wonder Lake together. 

We shared many, wonderful Lake adventures and Holidays together. 

Leo was a very happy bachelor and a lovely, unofficial Uncle.

After my dad died, at the painfully young age of 43, Leo remained a good friend to my mom and to me and my brother. After he retired, he traveled to exotic places, sometimes with friends, and sometimes he traveled alone and made friends along the way. He kept himself healthy and enjoyed spending time with his many friends.

During the time we lived in NYC, Steven and I got to know Leo as adults, when his work moved him to New Jersey. Where ever we roamed, he would visit us. When we moved to California, Steven and I and the boys visited him, in his favorite and last home in Phoenix. 

After we moved to Yellow Springs in Ohio, we started the habit of calling once a month to check in and to talk about anything and everything. He always seemed to be doing fine. 

By 94, many of his friends had died. 

In the last 5 months, his life had changed.

We could tell that Leo was having trouble with his memory. We lived across the country and couldn't drop in to visit. We did not know any phone numbers of the few friends he still mentioned. We didn't know who his Dr.s were or if he had given anyone a power of attorney, and if so, who was it? 

Basically, we didn't know squat. 

We did know, Leo did not want to leave his home. He was a very independent man and planned on staying that way.

We knew that life was getting hard for him. We didn't know what to do to help. 

Finally, JoAnne, a friend of his, found our number and called us. She was worried too. We were very thankful to hear that she had been given his power of attorney many years ago. She told us that Leo hadn't been going out, he was not eating well anymore and he was losing weight. He wasn't letting anyone in either. 

He was living in his bedroom, dying by himself. He told us, on one of our last calls, that he might go to the hospital. 

JoAnne knew where he had an emergency outdoor key.

JoAnne and a neighbor were able to get him out of his bedroom and into a hospital. He went from the hospital into a place where he would get care. But he didn't want to be there. It felt like it only took a couple of weeks, it might have been a couple of months. His mind shut down. He didn't remember us or any of his friends or his life as it was. 

My friend has died. I don't think it is a bad thing for him. On the night he died, he had 2 other friends that sat with him and told him it was OK to let go. Five minutes later, he died.

Years ago, when I thought, my mom was dying, I called my brother Tim and Mr. Leo. My brother came for a week. He sat with her by himself, while I took care of my boys and made our dinners. But mom kept going and Tim had to go back to his job. He couldn't come again. 

Leo asked if I would like him to come and sit with my mom. 

I said “Yes, please come!” I was frightened and wasn't sure how to comfort my mom or how I would react to her dying. I had never been with anyone when they died. But I didn't want her to die alone.

Leo drove to California that day. He sat with me beside her bed. 

It was a very quiet time. Mom was not talking anymore and her eyes were closed. I don't remember what Leo and I talked about. I'm sure, I asked Leo about how he met my dad and mom. We most likely, talked of Wonder Lake, and my dad electrifying the lawn by mistake, and shucking corn and eating ripe tomatoes and maybe about eating sweet-onion sandwiches (Leo had a preference for a sweet, vandalia-onion sandwich!). 

In the Spring, they'd have to put in the dock, while mom and I would sweep out the dried up spiders and the icky, still-alive spiders (I'm sorry Zyn, it was icky! to me) that had creeped into the bedrooms, during the long winter months. 

I would roll the almost-soft inner tubes, one at a time, over to the garage to get them blown up firm again. My mom liked to float, in a truck-size inner tube, while it was tethered to the dock. She would wave at the water skiers as they gracefully or not-so-gracefully, let go of the rope and water skied on to the shore. 

I reminded my mom, as she lay still in her bed, of how every weekend, that we drove to Wonder Lake, she always wanted to stop and get a soft-serve cone at the drive-in restaurant. (Which was one stop on the way, that my brother and I didn't mind at all!)

It made me think of another story: when mom was a girl; out for their family's weekly site-seeing drive; her dad would buy my mom and each of her 3 brothers an ice cream cone. She was the only one, who could make it last until they got home. How mad that made her brothers! - as she slowly licked her delicious ice cream cone, the whole way home. It was an impish side of her, that I hadn't seen very often in my mom. 

But Imp could have been my dad's middle name... I'm sure I told Leo, how my Dad met my mom. It was during WWll, most of the young men in their area of Pennsylvania, had already enlisted. My dad was too young. Mom, who I think, had just graduated from College, was nervously teaching her first class. My very impish dad was a student in the class. He was 16 or 17, between 3-4 years younger than my mom. He liked her and to get her attention he put itching powder on her. 

Leo and I talked softly on, as I watched my mom breathe and then not breathe and then breathe again. I held her hand. Leo and I probably talked of hot Summer days, of pulling water skiers with our little speed boat. Leo skied, My dad skied, my brother skied. Our friends all skied. I did not. (Well, I did once and then told them they could now leave me alone to go back to reading my book, I'd tried it.) 

There were beautiful Fall days, Leo helped me learn to drive on the way home from Wonder Lake. Then came icy Winter evenings, and the Holidays with the music, food and laughter, we all shared together. 

I have never forgotten the blessing that it was to have Leo with me as my mother was dying. He sat with her, and me, as her hands grew cold. I noticed the coolness and focused completely on my mom. I whispered to her “it's OK mom, head toward the light. Daddy's waiting for you.” Her mouth popped open in surprise, she took in one last breath and let herself go home to my dad. 

Mom was loved and she loved us,

Leo was loved, and he loved us.

So what has this all to do with the book “The Five Invitations.”

I truly don't know. 

Maybe it is about how we all change. And about welcoming all the changes.

I will leave you with the gift Ara gave me when we were texting last night about Mr. Leo's death and the book. 

I asked her “what does it mean to welcome everything?

Ara sent me Rumi's poem as her answer: 

“The Guest House”

by Rumi

This being human is a guest house

Every morning a new arrival.

 

A joy, a depression, a meanness-

some momentary awareness come 

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably,

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice

meet them at the door laughing

and invite them in.

Be grateful for whatever comes,

because each has been sent 

as a guide from beyond.

I think Rumi's poem tells us to welcome all of life and how to welcome it;

1. be grateful for whatever comes; you never know what will be a blessing; 

2. dark thoughts, may arrive but learn to laugh at them; 

3. talk to yourself gently; 

4. expect the unexpected; 

5. everything that comes, (including PD) goes: 

6. everything is a gift and a guide from life.

You might want to read the book “The Five Invitations” and find your own answers.

As for the title of this post “As Is” In the book “The Five Invitations” Frank talks about how he thinks we should all wear a tag that says “As Is”. I love that idea. For me, I think it means, that we can be loved no matter what, ( including loving ourselves and laughing at ourselves.). 

I told Steven yesterday that I wanted a dog tag that I could wear on a ball chain necklace that has etched in it- “As Is.” 

He told me today that it is on its way. 

Thank you Steven for loving me As Is.

Thank you everyone for reading this post and helping me to grieve.

Thank you Leo, for everything,

Love,

Nancy and the Snark

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Footnotes From Corrine

Rabbit Rabbit 

Happy New Year 

Such a poignant and beautiful post Nancy and yes even though I have a bone to pick with snark I love you as is, snark and all. 

Thankyou Leo for being such a special part of Nancy's life. You were a dear man and I enjoyed meeting you a few times for lunches and soft serve ice cream.