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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 Sunday, November 03, 2013

Wisconsin State Journal LogoIn my previous columns, (to read, go to www.Madison.com and search Shelley P Schwarz), I explained that last March, I applied for and received one of the Adaptive Sports Association (ASA) - ski scholarships administered by the Madison West Kiwanis Club.  As I mentioned, I’m a Baby Boomer (66), living with a severe disability (I’ve had multiple sclerosis for 30+ years.) I don't have use of my legs, and my arms and hands have limited strength and dexterity. I am definitely not what you would consider a prime candidate for a ski adventure!  

 

Today I want to share with you the grand finale of my fantastic experience.

After 3 runs down the “Bunny Hill,” my instructors felt I was ready to go up 2 chair lifts to a height of 11,000 feet.  As I prepared to have my sit-ski (with me in it) lifted onto the chairlift, I watched my son Andrew, a very able skier, get on the chair lift ahead of me.

 

What a perfect day in my life this was! Having my 37 year- old son, Andrew, with me was enough to make my heart burst with joy.  The previous day, Andrew called to tell me that he was flying to Durango to meet me.  He had airline reservations, a hotel room, and a rental car.  I was speechless!  It seems he was thinking about my adventure and thought, “My mom is doing this amazing thing and no one from our family will be there to see it.”  Ronit, my wonderful daughter-in-law, encouraged Andrew to follow his heart and join me.

 

Riding the ski lift to the top, breathing the cold, crisp air, and seeing snow-capped mountains in the background filled me with awe.  Who would have thought that someone like me would ever be able to have an experience like this?

 

As I stood with my son and 3 ASA volunteers at the top of Durango Mountain, I cried tears of joy, overcome by the enormity of this moment.  It was very spiritual and "otherworldly."  A stillness and peace overcame me. I felt surrounded by white light. I felt like I was no longer disabled. I felt "whole" again--empowered, and stronger than ever before.

 

I skied for 4 days before it was time to go home. I had the energy and stamina to keep up the pace all day and to go to dinner with the ASA gang and participants in the evening. That’s highly unusual for someone with MS, because fatigue is a MAJOR problem.

 

How has this experience changed me?  I proved to myself, that I was strong, determined, and resilient enough to leave the comforts of home to literally “climb a mountain.”  I know now that when you open yourself to life's “possibilities,” something magical happens. 

 

Months later, I see that I am thinking less and less about my "disabilities"--they have faded into the background. But the personal power, that feeling of "CAN DO" that I had lost along the way, has come back to full strength.  I am ME again! It is a wonderful, wonderful feeling.

 

If you or someone you know would be interested in “Skiing with Shelley,” join me March 6-10, 2014 on a return trip to Durango, CO. For details visit www.middletontravel.com.  Email Shelley@MakingLifeEasier.com

By Shelley Peterman Schwarz on Sunday, October 06, 2013

Wisconsin State Journal LogoSome people walk into our lives and change us forever. But sometimes our lives our touched by someone we will never meet. Ethel Allen, who passed away at the age of 98 is a woman I never knew, but this wonderful woman gave me back a piece of ME that I thought was gone forever. 

 

As you may recall, last March I was awarded an Adaptive Sports Association (ASA) - Adaptive Skier scholarship by the Madison West Kiwanis Club.  The scholarship was an all-inclusive, expense paid trip to Durango, Colorado to attend the ASA winter ski program. Since 2007, Ethel Allen’s estate has provided the Madison West Kiwanis Club, with 4 scholarships each year for people with acquired disabilities in the Madison area. (See below and learn how you can apply.)

 

When I returned from the trip, I promised you that I would write about my experiences.  I'll devote this column and the next two columns to those experiences and how skiing changed my life.

 

As an aging Baby Boomer living with a severe disability, I don't have use of my legs and my arms and hands have limited strength and dexterity, I'm not what you would consider a prime candidate for a ski adventure.  So, you can only imagine my family's reaction when I told them that I applied for and received one of the scholarships. How could someone with my level of disability go downhill skiing? A trip like this with all the challenges seemed impossible to them. 

 

All I know is that from the moment I heard about this opportunity, I knew I wanted to apply.  (Actually, I applied for the scholarship in 2010, but was not awarded one of the scholarships. I was, however, encouraged to submit my application again.)

 

Because of my severe disability, I'm not able to travel independently, I need a companion to go with me; someone who knows and understands my limitations. The scholarship covered only my costs; I would be responsible for the cost of my traveling companion. I was extremely happy that personal trainer (Is my “personal trainer” too boastful? Should I say “exercise buddy”?) for the last three years, Hannah Carimi, would be joining me.  

 

Shortly before the trip, the Madison West Kiwanis Club held an informational get-together for past and present scholarship recipients.  I learned that I would not need any of my own equipment. All I needed to bring was long underwear; EVERYTHING else was provided.

 

We would fly from Madison to Denver then to Durango, (a distance of about 350 miles.) In Durango, an ASA volunteer would pick us up in their wheelchair accessible van and drive us to our hotel. 

 

In my next two columns, I will share what happened on the slopes, how the experience changed me in ways I never could have imagined, and a huge surprise I never ever expected.

 

Until then, if you’d like to know more or hopefully apply for the ASA - Adaptive Skier scholarship, go to the Madison West Kiwanis Club Website: http://madisonwestkiwanis.com/ and click on Our Scholarships.

 

 

By Shelley Peterman Schwarz on Monday, December 03, 2012

Wisconsin State Journal logoRecently a friend had a fire in her kitchen that caused damage to her entire home.  The cause of the fire surprised me and is the reason I share the story with you, especially at a time of year when cooking and entertaining increases.

 

The cause of the fire was ...

By Shelley Peterman Schwarz on Wednesday, November 28, 2012

Shelley in scooter leading the parade 

I know that when people see me out in public, they probably see my Amigo® scooter wheelchair first, before they actually “see me." I think it’s human nature. I accept that and do my best to put them at ease. In fact, you may be surprised to learn that even with all my limitations, I still don’t think of myself as “disabled.”  I don’t wake up every morning and bemoan the fact that I have to use a wheelchair because my legs don’t work. Actually, I’m very happy that I have this device that, for the past 25 years, has allowed me to go where I want when I want, without the assistance of someone else.  It’s my independence. 

 

I still see myself as Shelley, who just happens to have a disability (caused by the effects of multiple sclerosis-MS.)  I also wear glasses and have naturally curly hair.  Every day, I work hard to keep my identity where it belongs--on the type of person I am.  And then something happened this weekend that proved to me that I have been successful beyond my wildest dreams.

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 Monday, September 24, 2012

Wisconsin State Journal logoOn the second and fourth Saturday's of every month, my Tips for Making Life Easier™ column appears in the Wisconsin State Journal newspaper.  The columns are combination of tips, strategies, products and AHA moments/discoveries that make life easier for people living with chronic illness and disabilities. I've been writing the column for 26 years and I've never posted them online before.  So, starting with Saturday's column, (September 22, 2012), I'll be posting each column on the Monday after it is in the newspaper.  As always, I'd love your feedback...

 

Dear Readers,

 

I get letters and emails all the time asking, “How do I…?” Where do I find…?”

By Shelley Peterman Schwarz on Friday, June 29, 2012

When traveling, whether to the next state or around the world, be sure to alert your bank and credit card company of where you will be traveling. If you are driving and use a special gas card, be sure to notify them as well. If you forget to do so you might find your credit cards blocked due to “unusual activity.”

 

Also be sure that the credit card company has your ...

By Shelley Peterman Schwarz on Friday, June 22, 2012
To send postcards easily while on vacation, write the addresses of families and friends on plain adhesive mailing labels before you leave on your trip. Then all you need to do is write your note and affix the address label. Also be sure to bring along stamps because often times when purchased from a machine you pay twice as much for the stamp.
By Shelley Peterman Schwarz on Tuesday, June 05, 2012

I wanted to join my friends on a horse drawn carriage ride through the streets of historic Charleston, South Carolina.

 

    

 

However, getting into a carriage is difficult because I can't walk or transfer independently. So, the only way for me to go on the ride, was to have someone lift me.  Watch how the staff of Palmetto Carriage Tours helped me onto the carriage...

By Shelley Peterman Schwarz on Monday, June 04, 2012

When Dave and I went to South Carolina, we had to take a “regional” jet, which generally means it’s a smaller plane.  I usually don’t mind because those planes still are able to use a jet bridge or jetway to get passengers on and off the airplane.  Because I can't walk, I need to be carried onto the plane using an aisle chair or "straight back."  



However, some planes may be too small to use a jetway. Or, a jetway may not be available, especially at peak travel times.  If a jetway is not available, passengers must embark and disembark on ...

By Shelley Peterman Schwarz on Friday, June 01, 2012

 

If you have asthma, allergies, or chemical sensitivities, clean air in your hotel room is a must. When you make hotel reservations, ask if they have hypo-allergenic rooms or if they can treat your room with an ozone machine to knock out scents and pollen before you arrive. If the answer to both is “No” and you have no option to change hotels, consider taking along a portable air cleaner or other devices you may need to breathe and sleep better while you're away.

 

What travel tips would you like to share?

By Shelley Peterman Schwarz on Wednesday, May 30, 2012

You know when friends care.  They do and/or say things that include you in a way that seems so natural.  Let me tell you about the Benton Harbor gang.

  

 

When we arrived at the beach house that we were to share for a week, I got my first inkling of how the week would go. I was really touched by the fact that the first 3 couples to arrive waited for Dave and me to arrive to...

By Shelley Peterman Schwarz on Thursday, March 15, 2012

I just returned from New York City where I received the MS Awareness Award at the Books for a Better Life Awards for my new book, Home Accessibility: 300 Tips for Making Life Easier. The event was a fundraiser for the New York City & Southern New York Chapter of the National Multiple Sclerosis Society.  

My wonderful husband of 42 years, "Saint" David, was unable to get away from work to go with me. So,...

By Shelley Peterman Schwarz on Saturday, March 10, 2012

People always ask me how I am able to fly on an airplane because I am unable to walk and use a wheelchair, (a three-wheeled Amigo TravelMate.)  I decided to do a short video showing how I board a an airplane using an aisle chair or "straight back." Follow me down the jetway, see how airline personnel lift and transfer me to the aisle chair and... 

By Shelley Peterman Schwarz on Saturday, February 11, 2012

Our Celebrity Caribbean Cruise leaves on Monday and we're on our way to Milwaukee, 90 miles from our home in Madison, Wisconsin. We'll pick-up Mom and the 3 of us will stay in a motel tonight across from the airport. On Sunday, we fly to Fort Lauderdale, Florida. (Living in Wisconsin, we decided to go to Florida a day early.  We don't want any snowstorm to disrupt our vacation plans.)


Sitting quietly, as Dave drives, I barely notice the ballgame on the radio.  I'm trying to settle myself down and recharge my batteries after a busy morning getting ready to walk out the door for nearly 2 weeks.
As I mentally go through my list of necessary items, I suddenly get a sinking feeling in my stomach. I know I have the battery charger for the camera, the cord to download the pictures to my laptop computer, and an SD card with extra memory. But OMG! I didn't bring the camera. I CAN NOT BELIEVE I FORGOT IT!!!...
By Shelley Peterman Schwarz on Sunday, February 05, 2012
Last December, we went to visit my brother in Las Vegas and before we left Madison we had our first travel-related "issue." Here's what happened...

Dave dropped me off at the door to the airport and went and parked the car. While I was waiting for him, I decided to get out my photo ID, but I couldn't find it. I PANICKED! Dave would kill me if I forgot my ID.

I searched every pocket and section of my purse but it wasn't there. I must have looked stressed because a police officer stationed in the airport came over and asked me if everything was all right. I told him I didn't have my photo ID. Would I be able to go through security without it?  We did not have enough time to drive back home to get it.myself.
By Shelley Peterman Schwarz on Thursday, June 09, 2011

I continue to marvel at how my children (Jamie and Andrew) are parenting their children. A lot has changed in the parenting world since Dave and I were parents. I must admit, what a joy it is to be grandparents! And, to know that we're not in charge any more is a big relief - at least it is for Dave and me. 

 

Jamie and Andrew and their spouses have their own (strong) opinions about how they want to do things. And you know what?

By Shelley Peterman Schwarz on Wednesday, June 08, 2011
Carol, Barbara, Mary, and I have been friends for more than 40 years. We met when we were working at the same school. We started having dinner together every month and have continued to do so all these years. I love them like Shelley's girlfriendsthey are my sisters. They are wise, compassionate, empathetic, supportive, and caring. We have gone through so much together...
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Making Life Easier Contact Us at Making Life Easier
9042 Aspen Grove Lane | Madison, WI 53717-2700
Phone: (608) 824-0401 |
Shelley@MakingLifeEasier.com


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