Wednesday, November 25, 2020

The Sweater: A Christmas Story

 

I have decided to put up a post on a subject other than Parkinson’s Disease…


A Long Introduction

 

Christmas is and has always been very special in my family. On Saturday, December 4, 2010, my wife Kate, who had been in early labor for quite some time, mentioned that she wanted a Christmas tree in our home for the birth of our child. I went out to get a tree immediately and put it up. The next day, Sunday December 5, at 8:23am our son Ocean was born in our home in Brooklyn. The holidays were even more special that year. We spent time at home with each other as several snowstorms hit our area.

 

Christmas was special in my family for as long as I could remember. Early Christmas morning, my brothers, sister and I woke up to a tree surrounded by gifts. Along with the socks and underwear, that we quickly threw aside, there were GI Joes, Barbies, chemistry and magic sets and every other toy imaginable.

 

Christmas was just one sign of my parents’ generosity. If my dad had two dollars in his pocket, you could have one. Both, if you needed them. My mom literally saved pennies to pay for our vacations. My father was an art director and my mom worked at the unemployment office in Irvington, NJ while she cared for the four of us kids. No matter how little we had, friends were always welcome at dinner and the table in our kitchen was frequently very crowded.

 

For months before Christmas my father worked after his regular job, painting signs for local businesses to pay for our Christmas gifts. At times, we were ‘broke’, but wanted to go out to dinner during the holidays. When this happened, my dad rushed home after work and painted gifts for the restaurants that he did business with. He got us all in the station wagon along with the signs, which read something to the effect of, “Happy Holidays from Joe’s Pizzeria.” I have one special memory when we pulled up in front of Joe’s Pizzeria and my dad grabbed one of the signs and said,

 

“Everyone else stay in the car, John come in with me.”

 

As we walked up to the restaurant, my dad said to me,

 

“Watch what I am going to do.”

 

We walked in the restaurant and the owner was behind the counter. My father said,

 

“Joe, you have been such a good customer, I brought you a gift”

 

Then he held up the sign and said,

 

“Can I put it up on your door?”

 

The answer, of course, was yes. My dad smiled, pulled a few suction cups a from his pocket and put up the sign.

 

Joe said,

 

“Maybe, you and your family could have dinner on me sometime?”

 

My dad responded:

 

“We were just about to go home and cook dinner, would it be okay if we came in now?”

 

The next thing I knew, we were all eating dinner. The lesson that my dad was trying to teach me was about multiple income streams. If you have a skill that you can sell, your family will never go hungry. My brothers and I took this lesson to heart and we have always had side gigs.

 

Back To The Main Story:

 

One year, I believe it was 1982, my sister was dropping hints for months about the gifts she wanted for Christmas.

 

“Please mom,” she said, “nothing Sears-y.”

 

By “Sears-y” she meant, nothing boring, nothing that looked like it came from Sears.

 

At around 10 pm, the Christmas eve scene was all set in our home. I was making the Christmas Margaritas. Why Margaritas? I am not certain, maybe because they were green? If you are doing the math, yes, I was not 21 in 1982. My parents generally had 1 to 1.5 drinks. Based on the fact that they never drank, this was more than enough. My older brother and I would disappear from time to time, only to reappear from the basement in a cloud of suspicious smoke.

 

At midnight, we began emptying our stockings and opening gifts. Soon, the floor was covered in sparkling wrapping paper, bows and ribbons. At one point, my mother handed my sister an expertly wrapped present. She was smiling and beaming with pride. The entire family watched with anticipation as my sister opened her special gift. My sister glanced into the box and immediately, a look of shock appeared on her face. She held up the gift. It was horrible! It was one of those black cotton 80’s sweaters with arms that were more like webbing than sleeves. From the right shoulder to bottom left of the sweater there were crooked diagonal lines of white yarn. To top it all off, on the bottom left of the sweater there was one large white pom-pom ball. To give you some idea of how bad it was, remember the ugliest sweater that you have ever seen. Then, imagine one twice as bad.

 

My mother said,

 

“Now that’s something different. That is not Sears-y!”

 

We were all stunned into silence for about a minute. Then, my older brother Rich exclaimed,

 

“That is the ugliest fucking thing that I have ever seen!”

 

We all broke into laughter and soon my older brother and I were literally rolling around the floor of amongst the tattered wrapping paper, gift boxes and ribbons.

 

A Holiday Tradition Was Born

 

For many years after that memorable event, the Andrejacks had a new holiday tradition. Each year on Christmas Eve, around 1 am, guests began to arrive. The house was filled with friends and sometimes friends of friends. Most guests had already had a few drinks before arriving. After everyone had a few more drinks, my younger brother Paul disappeared into the next room and returned, announcing:

 

“Ladies and gentlemen, I give you The Sweater!”

 

He then held It up. Eyes widened and Jaws dropped. Many people had heard the tale, but the first time that anyone saw “The Sweater” it was always an exciting and unforgettable experience. Now, I am aware that my family and I are story tellers and that we are also prone to exaggeration, but let me share some of the quotes from over the years:

 

“It is worse than I ever could have imagined”

 

“That’s a joke, right? That wasn’t a real gift, right?”

 

“I thought it would be bad, but this…”

 

“I guess they weren’t exaggerating…”

 

The story always ended the same way. The laughter would eventually die down and my mother would say,

 

“I didn’t think it was that bad...”

 

And then the laughter began all over again.

 

This went on every year for about a decade and then suddenly, “The Sweater” vanished. My mother just could not take it anymore. The first year we were really upset. Someone actually accused my mother of ruining Christmas, but in the end, we understood. The tradition that we all loved so much had hurt her feelings.

 

 

The Takeaway

 

Does there really need to be one? Probably not, but there is.

 

Holiday traditions do not need to be elaborate.  They are about fun, laughter, family and the little things. Many times, they begin with a mistake. Traditions do seem to make the holidays more memorable. The sight of presents under a Christmas Tree, for example, will always make me think of my parents’ generosity. The fact that I can never go into a Pizza place without remembering that dinner at Joe’s Pizzeria in Irvington, NJ brings me great joy. I cannot look at a sweater without smiling.

 

Most importantly, the smell of a Christmas tree will always remind me of the birth my son.

 

A few of you may remember “the sweater” tradition. If so, please post your memories.

 

Happy Holidays and thanks for reading.

 

 

 

 

Monday, November 16, 2020

I Have Been Doing Some Writing & Not All Rainbows & T-Shirt Slogans

Introduction

I really have not been doing much blog posting since COVID. One reason is that 2 of the pieces that I have written for this blog were published elsewhere. In addition, I managed to co-author an article for the Journal of Parkinson' Disease with Soania Mathur who is a physician, patient and advocate. 

Dr. Mathur is a member of The Brian Grant Foundation Advisory Board, on the medical advisory board for Parkinson's Canada and serves on the editorial board of the Journal of Parkinson's Disease. Many patients, family members, care givers, doctors and researchers have read and were inspired by, her piece: "To My Newly Diagnosed Self." If you are reading this blog, you should read this piece as well. I am honored that Soania agreed to write a journal article with me.

Inspiration

I joined a few Parkinson's Disease support groups on Facebook during COVID.  Posts from these support groups inspired me to do some writing. I will paraphrase one of the quotes below:

"Parkinson's Disease is horrible. I am tired of being called a warrior and constantly being bombarded by catchy t-shirt slogans. Somebody please do something!"

The next day, I read several posts about how doctors offered patients medication and treatment options for some of their symptoms but not others. What I learned from reading these posts was some physicians were not asking patients: "What do you really want?"

Timing is everything. The next day, I received an invitation from the Journal of Parkinson's Disease to write an article entitled "What People With Parkinson's Disease Want." A few days later, I asked Dr. Mathur to co-author the piece and was honored when she agreed. 

The article explores the differences between symptoms that are most measured, treated, are the most bothersome and those that patients want treated. Please read it if you can.

My experience of working on this article has taught me a few things that I think doctors and PWP should say and ask.

Doctors:

"I have noticed your symptoms are...."

"Do you have any others?"

"Which of these symptoms would you want to explore treatment options for?"

 

PWP:

"The symptoms I have noticed are..."

"What are the treatment options for this symptom?"

"I have noticed that I can no longer sleep through the night (fill in any other symptom as this was just an example). Could this be caused by Parkinson's Disease?"

"__________ is really bothering me. What can be done to treat it?"


Am I disabled enough?

I was inspired to be a guest blogger for the Journal of Parkinson's Disease by the post below from an online support group that began:

"I know that I am not as impaired as other here but..."

This made me concerned that in our efforts to make people feel better, we may be minimizing their suffering and grief. I warn you that this piece is not a walk on the bright side. It is entitled: "Something to Cry About: Grief, Depression and Parkinson's Disease." If you have 5 minutes please read it.  


Conclusions and some thank you notes

Recently, I read that Michael J. Fox is losing his short term memory and ability to memorize lines. This made me sad because he is only 59, but he also said that he is happy that he can write:

"I'm down to this," Fox confessed. "My guitar playing is no good. My sketching is no good anymore, my dancing never was good, and acting is getting tougher to do. So it's down to writing. Luckily, I really enjoy it."

 
This seems like a good place to conclude because this is also why I write.  I never turn down an opportunity to contribute to a research article or to publish something in a blog. I write because I can and because I hope it might help others, but mostly, I write because it helps me.
 
Thank you
I often receive thoughtful texts, email messages and phone calls about my blog and other writing. I do not always respond for several reasons. Mostly due to fatigue and depression. You may or may not be able to relate, but sometimes, it seems like I have an insurmountable amount of work to do and I just shut down and do nothing. I also want to make it clear that sometimes, I do not respond because what you wrote means too much to me. It strikes a chord. Depending on the day, I just may not be able to go there. Sometimes, I just have to decided that it will be a "no crying day."

PLEASE FEEL FREE TO SHARE ANYTHING THAT I PUBLISH. 
I DO NOT NEED TO BE ANONYMOUS.