Thursday, March 20, 2014

Cross Link Radio: The Sjogren's Experience



I've been invited to be part of a podcast entitled The Sjogren's Experience. It is hosted by Cross Link Radio's Shirley Gutkowski and will air March 30th, 2014 at 1:00 pm Central time. You can listen in live here. Shirley will interview me and three other women also dealing with Sjogren's syndrome. This should be an interesting experience and I'm looking forward to participating and hearing the other guests.

I was asked to discuss something that I thought was of importance in our disease, and I told Shirley that I would have to mull that one over for awhile since there's so MANY "somethings" that are vitally important relative to Sjogren's syndrome.

I was thinking about that and as I did, I thought about my friend Marilyn. I think about her often when I am dealing with chronic illness. I'm only realizing now, many years since her death, that she was not only a dear friend, but was also modeling behaviors that can only be described as How To Be Sick And Still Have A Life. Behaviors that I would attempt to use in my yet-to-occur walk with chronic illness.

Marilyn and I met when our sons went to high school together. We would chat as we sat in the school stadium watching the kids' football games, and one day she invited me to join her and a few friends for coffee. We all met on a Monday morning at a local coffee shop and over steaming mugs of freshly brewed coffee we found ourselves laughing and sharing easily with each other. And that's how the Mocha Monday coffee group was born seventeen years ago. Although several of us have come and gone, and we no longer meet every Monday, the Mocha Girls live on for which I am so grateful. Good friends are such good medicine.

I quickly learned that Marilyn was fighting a decade long battle with vicious metastatic breast cancer diagnosed when her son was just starting school. She told me that her goal was to live a quality life as long as she could in the hopes that she could see him graduate from high school twelve years later -- and she did -- plus several years to spare. With grace, and a wicked sense of humor, and above all: style. At the time we met, I had no idea that Marilyn was teaching me a vitally important lesson as she discussed her disease frankly and without self-pity. And remained active in our lives even though sometimes her body wasn't cooperating. When she was able to join us for mochas, she answered all of our questions without hesitation but then moved on to actively engage herself in those things that were happening with us and to sincerely let us know how much each of us meant to her.

Somehow through all of her recurrent tumors, chemo, radiation, and surgeries, she kept an amazing balance in her focus of attention: she was educated and engaged in her health issues, but didn't let cancer impede her relationships with her family and her friends. Even when it was clear that her life was quickly approaching it's end, Marilyn thought of us. After she had been told that chemo and radiation were not achieving their goals, she planned a special Mocha Girls coffee party. We met at her home near Valentine's day, and Marilyn surprised us with a Valentine's day party. Each of us were given lovely fluffy slippers to put on, we were invited to sit down at a fabulously decorated table, she poured each of us coffee or tea, and offered us lovely little cakes and treats that she had made herself. We were served on beautiful glass dessert plates that were hand painted by Marilyn and were told that they were our gifts.

Without dramatics, she told us that this was her Valentine gift to each of us so that we would remember her and realize that each of us were a precious gift to her. She was telling us good bye with unbelievable composure and sincerity.

How do you do that? How do you handle such a horrible set of circumstances as yours and still smile, and love, and live?, I thought.

It became clear to me over the years as I was diagnosed with Sjogren's syndrome and my life began to change dramatically, that I had been given a precious gift in Marilyn. Not only was she a friend, but she was a powerful mentor.

Yes, a mentor. A how-to-be-sick-without-driving-myself-and-others-bonkers mentor. A yes-I-have-a-crummy-disease-but-life-goes-on mentor.

So after thinking about my upcoming interview and topic, and thinking about my dear friend, I have decided that my brief time on-air will be spent discussing the importance of mentoring in a chronic illness. It was and continues to be so important for me to learn and adopt attitudes and behaviors that put my disease into perspective, and by doing so to increase the quality of my life.

I realize that my health challenges don't begin to approach the severity of Marilyn's, and that my disease most likely will not be the cause of my death, but it still stinks. And since I plan on living my life for a great many more years, it's important to me that I preserve all those things that make my life.....well, my life. Mine. Marilyn set the bar high but she also gave me valuable tools.

Have you ever wondered, "How do I do this? How do I be sick and still have a life?" Do you mentor others dealing with chronic illness? Have you benefitted from the mentoring of others?

Share. Tune in on Sunday March 30th 1:00 pm Central, call in and share your experiences and stories.

Edited 3/23/14 ** Time of broadcast is 1:00 pm Central **

6 comments:

Shara Bingham Mills said...

Go be our Sjogrens Star Julia. I'll set it in my calendar.

Amy Junod said...

What a beautiful post. What a beautiful woman she must have been.

I am looking forward to the radio program.

I agree with Shara- you're kinda our fearless, funny leader. Will be awesome to listen in.

Anonymous said...

What great words of advice. I never thought of "mentoring" and you have very poignantly helped me see that this #$%@ disease is not anyone else's fault and from this day forward I will look at this journey differently. Your friend Marilyn was a very wise and gracious woman.
I am looking forward to hearing your interview and have written it on my calendar.

rosebud said...

What great words of advice. I never thought of "mentoring" and you have very poignantly helped me see that this #$%@ disease is not anyone else's fault and from this day forward I will look at this journey differently. Your friend Marilyn was a very wise and gracious woman.
I am looking forward to hearing your interview and have written it on my calendar.

ShEiLa said...

I seriously think about this everyday... How can I be Sjogren's sick and have a life? I try to enjoy the little moments... In spite of my limitations and pain. I too had an awesome example... Two actually. My friend Robin who passed away at 36 after surviving double breast cancer in her late 20's she ended up with Pancreatic cancer... My Mother passed away from Pancreatic cancer as well. Both of these women were shining smiling examples of making the best out of a bad situation.

Miss Julia... You too set a fabulous example for me by being honest... Telling it like it is... Without sugar coating the reality. I love your sense of humor and writing style. You are a ray of sunshine on a cloudy day. ((hugs))

Heda said...

Great post. Thanks.

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