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Blog Title: What I Learn About Living From My Chronic Illness by Shelley Peterman Schwarz
Chronic illness changes every aspect of your life. In my blog, I reflect on my 30+ year journey living with primary progressive multiple sclerosis (MS). I share thoughts, insights, and lessons learned that hopefully will help you or someone you know. - Shelley
By Shelley Peterman Schwarz on Monday, January 28, 2013

Wisconsin State Journal newspaper logoI got it!  I am so excited!  Last month, I learned that I was awarded one of the 4 Ethel Allen Adaptive Ski Program Scholarships offered by the Madison West Kiwanis. The scholarship gives people with disabilities the opportunity to take part in the winter sports program offered by the Adaptive Sports Association (ASA), an organization that has been providing skiing, snowboarding and a variety of "sit-ski" instruction to people with disabilities for 25 years.

Shelley sit-skiing
 

To apply for the scholarship, I had to fill out an application and be available for an in-person interview with the Madison West Kiwanis selection committee.

 

 

During the interview, we talked about the realities of this opportunity – the stress of air travel, the intense ski program instruction, and the risks/challenges of being a person with a disability. Yes, there would be experienced ski professionals to help and instruct me, but what about the “unexpected” and my ability to handle the ups and downs inherent in an adventure of this kind?  Could I give them an example that might address these concerns?  YOU BET I COULD!  And, this is one of the stories I told them.

By Shelley Peterman Schwarz on Monday, January 21, 2013
Wisconsin State Journal newspaper logoA couple of weeks ago, I received an email from my friend, Jodi. She wrote that she had slipped on the ice, taken a bad fall, and broken her leg. When I called to find out what happened, one of the first things she said was, “This has been a very humbling experience. I thought I understood what people with mobility issues go through because of my friendship with you, but I see now that I really had NO IDEA.” 

 

My mother who has been with me on every step of my 30+ year journey living with multiple sclerosis, expressed the same sentiment when she broke her ankle a few years ago. Often friends and family members say the same thing to me after they’ve had an illness, surgery, injury, or accident, especially if the situation required a period of recuperation or rehabilitation. They are surprised at how difficult and exhausting it can be to complete simple everyday activities, like making a cup of tea, getting out of bed, or fixing themselves something to eat.

 

It’s true. Only someone who

By Shelley Peterman Schwarz on Wednesday, January 16, 2013

When I was diagnosed with multiple sclerosis (MS) in August of 1979, my world as I knew it changed forever.  When it came time to send out holiday cards a couple of months later, I couldn't face writing the news of my diagnosis over and over again on each card. 

 

So, I took a chance and wrote my first, "Schwarz Family Winter Letter." (I didn't want to write a depressing letter, nor did I want to gloss over the seriousness of the diagnosis.)  I sent the letter to family and friends who had moved or lived out-of-town. Sending out that letter meant that I didn't have to call or write "the same story" dozens and dozens of time.  In addition, everyone heard the same message at the same time.

 

The response to the letter was so positive and caring that, for the past 33 years, I've continued to write the "Schwarz Family Winter Letter."

 

Below is this year's letter:

 

Dear Family and Friends,                 Winter 2012                                       

It seems like only days since I last wrote the “32nd Winter Letter.”  Yes, this is the 33rd year for the annual epistle, the Schwarz Family Winter Letter.  It marks the beginning of our 34th year as a family living with multiple sclerosis.  Thankfully, it’s been a wonderful year for all of us, with only one exception. First, all the good stuff…

 

Home Accessibility book coverAs I mentioned in last year’s letter, my 7th book, Home Accessibility: 300 Tips for Making Life Easier was published in January, 2012 and it won the Books for a Better Life Award – MS Awareness Award, sponsored by the National MS Society-New York Chapter.  The awards ceremony was in New York City in early March. Unfortunately, Dave was not able to get away for the trip.

 

So, I asked Mom (Ruthie is now 89) to join me as a representative from our family, and my dear friend and world traveler, Joan Gillman, agreed to accompany me as my traveling companion.

 

By Shelley Peterman Schwarz on Monday, December 24, 2012

Wisconsin State Journal newspaper logoAt this time of year, we reflect on the many blessings we have and consider how we can share our bounty with others who are not so fortunate. I'm very grateful for the many blessings that fill my life. My husband has been employed with the state of Wisconsin for more than 40 years; we live in a beautiful house; our children are college graduates who have good jobs. (What more could parents ask for?)  And, I realize there are people in this country and around the world who have far less, which brings me to today's column: "A Time for Sharing." 

 

I was born and raised in Wisconsin and have lived here all my life. My husband Dave was born in the Philippines during World War II. He came to this country at the age of three when his father was hired as a rabbi in Benton Harbor, Michigan. His parents lost everything twice: once when they left Germany, and a second time, when the Japanese bombed the Philippines. Coming to this country was a miracle of sorts for them, and Dave and his family has always been grateful to be naturalized American citizens.

 

Seventeen years ago, I was looking for a seamstress to make some clothes for me because my multiple sclerosis (MS) had weakened me to the point where shopping for clothes was impossible.  Through a series of serendipity events, ...

By Shelley Peterman Schwarz on Thursday, December 20, 2012

Shelley speaking

I could feel her eyes rivet on me as I spoke. When I ended my keynote address, she raised her hand to ask a question; "Do you think of your MS as a blessing?" Not the typical question from a "Business Women's Expo" audience.

 

Pausing a minute she added, "Because I think of my having MS as a blessing." It wasn't the first time I had been asked that question. Nor was it the first time I had answered it.

 

Years ago I asked myself that same question. Now the three hundred women were silently awaiting my answer. And my answer was and still is ...

By Shelley Peterman Schwarz on Thursday, December 06, 2012

Shelley putting on earrings

I did it all by myself!!! I put on my pierced earrings without any help!!! I can't believe it. Considering my right hand used to be contracted in a fist and I couldn't lift my arm/hand up to my face, the ability to put on a front and back independently is a HUGE ACCOMPLISHMENT! After 25 years of disability, how can this happen?

 

By Shelley Peterman Schwarz on Monday, November 26, 2012

Wisconsin State Journal logoWell, I did it!  I turned in my application for the Madison West Kiwanis Club, Adaptive Ski Association’s (ASA) Scholarship, in hopes that I will be one of four Madison area residents with disabilities selected to participate in the program. This unique opportunity has been provided since 2Sit-ski photo006, when  Ethel Allen, a well-known scientist, University of Wisconsin alumna, and former faculty member, passed away at 98.  A provision in her estate called for a distribution of funds to the Madison West Kiwanis Club to be used exclusively for ASA scholarships.  The scholarship includes round-trip airfare from Madison to Durango, Colorado, five nights lodging in the Durango hotel, meals, four days of ski instruction, lift tickets, local transportation, and all necessary ski equipment.  For people like me who use wheelchairs and are unable to walk, we will learn to "sit ski." 

 

I don't know if I will be lucky enough to receive one of the scholarships, but I can tell you that it has gotten me to dream again. It's easy when you have a disability to focus on what you can't do and what things you are missing out on in life. But...

By Shelley Peterman Schwarz on Thursday, November 15, 2012

UW Foundation building-site of interviewToday at 3:00 pm I have my interview with the committee reviewing the applications for the Madison West Kiwanis Adaptive Ski Association’s (ASA) Scholarship.  I applied two years ago, in 2010, but was not selected to receive one of the four scholarships.  However, I was encouraged to apply for the scholarship again.  (Last year our family vacation conflicted with the ski program dates.)  So this year, here I am - again!

 

In the information about the scholarship, it explains that their "ideal candidates" are adults:  Shelley in standing frame

  • With an acquired physical disability.  I have an acquired disability (multiple sclerosis.)
  • Regularly participate in athletic activities.  I do this 3-4 times a week.
  • Are able to travel by air to Durango. (See the video-traveling by air)
  • Are new to disabled skiing or snowboarding.  The last time I went skiing was when I was 5 months pregnant with my daughter; she's now 38 years old.
  • Can help "spread the word' about the program within their communities and support organizations."...
By Shelley Peterman Schwarz on Monday, November 12, 2012

Wisconsin State Journal logoI try hard to learn new things, especially computer technology, because it gives me an easy outlet to the world, a world beyond my disability. However, I have cognitive (thinking) problems as a result of MS so learning new material is not easy. Yet, I'm willing to do what it takes to master new computer skills because of the freedom and creative outlet it gives me. 

 

In fact, I recently learned a new strategy that has helped me. I bought an Apple computer last year and signed up to take the workshop and classes. The “geniuses” at the store are darling and endlessly patient. (Thank goodness!)  However, if you’ve ever been in the Apple store at the mall, you know that it’s always an active, noisy place, so going there to learn new things can be a challenge for someone like me. 

 

When I started editing my little family videos, I couldn’t

By Shelley Peterman Schwarz on Tuesday, November 06, 2012

Shelley "sit skiing"Well, I did it!  Last Friday, I turned in my application for the Madison West Kiwanis Adaptive Ski Association’s (ASA) Scholarship, in hopes that I will be one of four Madison area residents with disabilities selected to participate in the program. This unique opportunity has been provided since 2006, when  Ethel Allen, a well-known scientist, University of Wisconsin alumna, and former faculty member, passed away at 98.  A provision in her estate called for a distribution of funds to the Madison West Kiwanis Club to be used exclusively for ASA scholarships. 

 

The scholarship includes round-trip airfare from Madison to Durango, Colorado, five nights lodging in the Durango hotel, meals, four days of ski instruction, lift tickets, local transportation, and all necessary ski equipment.  For people like me who use wheelchairs and are unable to walk, we will learn to "sit ski."

 "Sit ski" photo

I don't know if I will be lucky enough to receive one of the scholarships, but I can tell you that it has gotten me to dream again...

By Shelley Peterman Schwarz on Wednesday, September 12, 2012

Wisconsin Woman article with family pictureI was going through some files in my office this past weekend and found the following article that was written about me nearly 10 years ago by Teresa Peneguy Paprock for Wisconsin Woman magazine.  Not much has changed since that article was written, except my age. And, surprising as it may seem, it was comforting to read that I’m still “hanging in there” until a treatment/cure is found for people with primary progressive MS.  By taking it a day at a time, the future with MS doesn’t feel quite so scary.  My goal is still to help people look with hope to the future.  Here's the article:

 

Imagine, for a moment, that someone told you that you would lose the ability to use your hands.  Or, maybe your legs.  Maybe you would go blind, or have problems swallowing, or lose control of your bowels.  You wouldn’t know when it would happen—it could be months from now, or it could be tomorrow.  You wouldn’t know if the problem would be permanent, or would come and go.  If you can imagine this, you have an idea of what it’s like to receive a diagnosis of multiple sclerosis (MS).

 

By Shelley Peterman Schwarz on Tuesday, August 07, 2012

Sometimes things happen that make me wonder if there are such things as angels. I don't know how else to explain certain coincidences that I have experienced in my life.

 

Like the time my traveling companion, Patti, and I had gone down to Chicago to the Merchandise Mart to look at a universal workstation for my office. We found a convenient parking spot on the street and were walking the two blocks to our destination when I hit a bump in the sidewalk and my trusty little Amigo® scooter stopped working. It was completely dead and no matter what I tried, it would not come back to life.

 

Patti and I looked at each other in disbelief...

By Shelley Peterman Schwarz on Monday, July 09, 2012

Recently, a reader recommended the following book to me. Here are her words: 

 

"I am wondering if you might have already read the book, The Art of the Possible, copyright 1995, by Alexandra Stoddard, and if not I recommend it.  She is a decorator/designer but much more than that as a writer with quite an interesting philosophy of living expressed in several of her books.  I happened upon her books in a resale shop and now have several of them which I reread from time to time.  This book has several chapters on such topics as balancing expectations, remaining centered which deals with health and healing and death, and joy, love and freedom. When I read the chapter on health and healing I thought of you over and over because I read your story about coming to terms with your health, accepting help from others and your writing a column that shares your outlook and wisdom to help others."



 

I want to thank this reader for writing to me about the book, The Art of the Possible, a book about "decorating/designing" your environment to help you find with balance and acceptance in your life. I was familiar with the book and now realize that I have been incorporating many of the Alexandra Stoddard's ideas and suggestions to creating my home environment.  I'll share with just one example of something I did.


In 1985, my husband and I put on an addition to our house. Our bedroom doubled in size to accommodate equipment I needed because of my increasing disability.  I needed...

By Shelley Peterman Schwarz on Tuesday, May 08, 2012

   Christopher Tin, Composer

Every now and then a beautiful piece of music touches my heart and I have to listen to it over and over again.  Beautiful music has the power to transport me away from the everyday realities of living with my  chronic illness, multiple sclerosis. Today, while I was "horizontal," (i.e. in bed and off my bottom), I busied myself on the computer and stumbled on the Baba Yetu music video...

By Shelley Peterman Schwarz on Monday, January 23, 2012
I have to tell you that I went a little out of my comfort zone when I called Barnes & Noble and told the Community Relations Manager that I had a new book, Home Accessibility: 300 Tips for Making Life Easier, and wanted to do a book signing in the store. The hesitation in the manager's voice was so telling; she had no idea who I was (which isn't all that surprising) and was struggling with how she should/could respond...

 

By Shelley Peterman Schwarz on Friday, July 01, 2011
I just submitted my book manuscript for Home Accessibility: 300 Tips for Making Life Easier, affordable solutions for making your home safer and more accessible, and I'm ECSTATIC! Deborah, my assistant, did an amazing job the project and her laser beam focus and planning made it possible for us to meet our deadline. Thank you Deborah!...
By Shelley Peterman Schwarz on Saturday, June 18, 2011

I’m still thinking about the feedback that I received from my keynote presentation to the vocational services professionals. I know that I'm very lucky to have had all the opportunities that I’ve had over the 30+ years living with my diagnosis of primary progressive multiple sclerosis. Had it not been for the Division of Vocational Rehabilitation (DVR) in Wisconsin, I would never have been able to...

By Shelley Peterman Schwarz on Tuesday, June 07, 2011

My new Home Accessibility: 300 Tips for Making Life Easier, affordable solutions for making your home safer and more accessible is almost finished! I can already envision books flying off the shelves.  

 

By Shelley Peterman Schwarz on Monday, March 21, 2011
Rollin' Around the World with Zach AnnerZack Anner is the first person with a significant disability to get his OWN show. (No surprise that Oprah was the person to make it happen!)
By Shelley Peterman Schwarz on Saturday, January 22, 2011

So much of who we are is tied up in what we do. When I became disabled due to the efffects of multiple sclerosis, I had to retire as a teacher of the Deaf. It was one of the saddest days of my life for two reasons. 1) I loved my job and, 2) along with losing my job, I lost a part of me. After all, who was I now that I wasn't employed?

 

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