Finding the Strength to Fight MS for the Holidays

Posted on December 16, 2015 by MSAA

By: Matt Cavallo

In September of 2010, I was faced with a devastating decision. I was experiencing severe spinal stenosis and a fractured C6 vertebra, which my doctors believed was a result of complications due to my initial onset of transverse myelitis five years earlier. My decision was to have an emergency cervical fusion to address the problem before it became more complicated. At the time, my kids were only three and one years old and I was worried that if I didn’t have the surgery I wouldn’t be able to participate in their lives the way that I wanted too.

Fast forward to December of 2010, I was out of the neck brace and going through physical therapy. I was weak, tired and had lost a lot of weight. The surgery was another in a long string of MS events that rendered me in a depressed state. I didn’t want to see friends or family and had become a shell of my former self at the house. The blinking of Christmas lights and singing of carolers was not enough to get me in the Christmas spirit.

I was working at the hospital at the time and my practice manager was throwing a holiday party. She insisted that I be there. I was feeling like Ebenezer Scrooge and issued a, “Bah Humbug” at the thought of kibitzing with my coworkers (even though they were doctors, nurses and therapists). My wife convinced me to go to the holiday party and I parked myself in a chair by the fire pit in the back yard for a couple of hours. My coworkers brought me food, drink and merriment, but I still could not find the spirit.

Was this going to be the year I gave up on Christmas? Was this the year that MS had finally won the battle?

My parents flew into town just before Christmas. My dad is a great Italian chef and the familiar aromas of my grandmother’s recipes were not enough to snap me out of my funk. His food smelled and tasted like memories of Christmas past. Now, here I am, Tiny Tim wondering how long I could feign a smile despite the depression and ill feelings MS had saddled me with this holiday season. I went to bed believing that maybe I did deserve a lump of coal in my stocking.

Then it happened.

Christmas morning 2010, two wild-eyed and blonde-haired boys rounded the steps to see the gifts that Santa had left for them. Their spirit and enthusiasm sparked a flame inside me. I knew that no matter how bad I was feeling or wanting to give up that these two boys needed me to be there in the moment with them. So I donned my Santa hat and let them sit on my lap on the floor as they ripped open the wrapped Christmas presents with delight. It was then that I realized the true meaning of Christmas was to find joy and be thankful for my many blessings despite difficult times. Regardless of what holiday you celebrate, I hope your season is filled with hope, joy and love.

Happy holidays everyone and a happy New Year, from my family to yours!

Figure 1: Matt and Colby putting together a Christmas toy 2010

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Embracing New Traditions When You Have MS

Posted on December 23, 2013 by MSAA

By: Matt Cavallo

Some of my favorite childhood memories stem from the holidays. On Christmas Eve, my Grandmother prepared a wonderful homemade Italian feast followed by a bonfire in the front yard where the whole neighborhood would gather to sing Christmas carols. Although the weather was never above freezing, we were warmed with a sense of unity in song accompanied by the melodic sound of my cousin’s saxophone.

When my wife and I decided that we were going to move away from my hometown in Massachusetts for a new life in Arizona, I knew that I was leaving behind those traditions that I cherished. I also knew that my boys wouldn’t have the same experience that I did growing up. I was worried that I would be depriving my children of those memories that I held so dear.

I had more pertinent factors to consider in my decision, however. My MS was progressing and I no longer wanted to fight the elements that go hand in hand with living in the Northeast. I love the colors of fall, but I no longer wanted to rake the leaves. There is something so peaceful about looking out the window and seeing the first snow falling, however, the strain of shoveling the driveway and front steps after the snowfall was no longer worth the pain. Life seemed to be becoming too physically draining to really enjoy it. I knew I was ready for a change but wasn’t sure how to start over. Would a change mean robbing my kids of childhood memories? Was I being selfish by putting my health before my family?

The first winter in Arizona was sunny, warm and free of snow. Despite the health improvements and ease of my new lifestyle, I was still missing the Christmas ritual and traditions that I grew up with. I decided that I had two choices: revel in the sadness of what I was “missing” or create new traditions to enjoy. I chose the latter.

Maybe this isn’t the case for you. Maybe you have lived in the same place your entire life, but are experiencing limitations due to your disability. Although you didn’t move, you may no longer feel that you can participate in the holiday season the way you used to. Don’t let these limitations take the joy out of the season you once loved. If this rings true for you, here are some steps to help you embrace new traditions:

Set new expectations – If your disability is affecting your ability to participate in events, try not to relive how you used to participate. Instead, create new expectations for how to enjoy the same events. For example, if you used to stand up and lead the band, pass the baton. You can still enjoy the music if you sit and listen.
Focus on the positive – It is easy to get down on yourself during this time of year remembering days before your disability. There is an old saying that I love, “Whether you think you can or you can’t, you are right!” Be positive, believe in yourself, and you will enjoy the holidays even if it is different than it used to be.
Take advantage of new technology – If you can’t be there in person, take advantage of new technology to bring you as close as possible to friends and loved ones. Skype or Google+ Hangouts are a great way to participate in an event without physically being there.
Keep your memories alive but update the tradition to fit into your current life – There are certain foods that take me right back to those old days at my Grandma’s house. Learning those recipes and recreating those dinners have been a way for me to remember the past while living in the present.
Tell your story – People around you view you as a fighter for battling your illness. Use this time of togetherness as a way to share your story, allowing the people you are closest to a better understanding of who you are today.

Four years later, our new family traditions are every bit as meaningful as my childhood memories. We have made great friends in Arizona, and we get together to form our own lasting memories for our children. Whether it is taking the kids up to Santa’s Village in Flagstaff or watching a parade of boats decorated in Christmas lights at the lake, these new traditions are every bit as meaningful as singing in my Grandma’s front yard, minus the frostbite.

In many ways, these new traditions make the holidays more meaningful to me. I have experienced a lot of loss with my MS. With that loss, I realize how precious each moment in life can be and have begun to live in the moment and enjoy it. Embracing these new traditions has taught me that this season is still the most wonderful time of the year despite having MS.

Happy Holidays everyone!

Please note, MSAA offices will be closed December 25th through December 30th. We apologize for any inconvenience this may cause, and will respond to all comments and inquiries upon our return.

Why I No Longer Fear the Holidays and Why You Don’t Have to Either (Even When You Have MS)

Posted on November 22, 2013 by MSAA

By Jerri Burtchell

When I was a kid I loved this time of year. Snow on the ground, great food (except for that weird Jell-O salad Aunt Mary always made), and presents at Christmas. Things have changed since I was diagnosed with multiple sclerosis (MS) in 1999. Now a sense of foreboding overcomes me each year, right after Halloween.

I’m not the “bah-humbug!” type, but I do hail from a long line of worriers. Maybe we were meant to be “warriors”, but some genetic mutation caused a typo. Now we fear things our imaginations dream up. The “what if” syndrome. My MS diagnosis has elevated my worrying to a whole new level.

Holiday time is prime “what if?” time for me. What if I can’t navigate the busy malls and grocery stores? What if the handicapped parking is all taken up? What if I don’t have enough money to give everyone gifts? What if this fatigue keeps me from enjoying the family I rarely get to see? And the biggest one: What if all this worrying stresses me out and I end up relapsing?

One Christmas, that changed when our family shared what other families keep secret. We all admitted that gift buying was stressing us out. Not only the act of shopping, but the dent it was putting in our pocketbooks. Our name isn’t Trump or even Kardashian. We don’t have money or personal shoppers. What a relief to know we all felt the same way!

So we started something new. When we gather at Thanksgiving now, part of our tradition is drawing names for Christmas gift exchange. We’ve instantly gone from buying gifts for ten to buying for one. Stress diminished. To take it a step further, we can only spend $20. Now the stress was melting like snow in the spring.

Christmas morning is no longer spent in a flurry of mindless paper shredding as we tear through one present after another. But the only ones disappointed are the cats with less cardboard boxes to explore. We still have the experience of gifts under the tree, but now it’s a single, more thoughtful, often handmade gift.

And we quit competing with Martha Stewart for the most elaborate side dishes and desserts. Not everything has to be perfect. We’re enjoying things on our terms, not those set forth in Better Homes and Gardens.

One Christmas I got a late start putting up the decorations. It seems MS fatigue brings out the natural procrastinator in me. So imagine my panic when I went to get the fake tree from the garage only to find it was now home to a family of mice.

I took a few deep breaths and channeled MacGyver. Before you know it, a big vase was the base for my silver, spray-painted Christmas “stick” – a dead branch I’d dragged in from the yard. With a string of lights and a few baubles here and there, the problem was solved. The best part is, it was cheap, handy, and I finally made use of an idea I’d pinned on Pinterest.com.

So in freeing myself from the stress that comes with striving for perfection, the reward I got was more quality time to spend with those I love–the only gift that counts.

Life passes too quickly and before you can say, “Black Friday,” it’s all over. I can safely say I won’t be lying on my deathbed lamenting over all the bargain basement prices I missed out on. It’s the people in my life and the connections we made that will be my fondest memories.

I won’t be stressing over the perfect gift for someone this Christmas, or if I forgot to put the marshmallows on top of the sweet potato casserole…again. I’m going to be counting my blessings in each smiling face that comes through the door.

So forget what the commercials all tell you to do. When you give yourself permission to lower your expectations of perfection, miracles happen. You have lots of laughs, give lots of hugs, and take lots of pictures. Aren’t those the memories you’ll treasure most in the end?

And that gem of wisdom is my holiday gift to you. (It was handmade and cost me less than twenty bucks – Enjoy!)

References: http://www.healthline.com/health-slideshow/pictures-multiple-sclerosis-psychological-changes

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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