Scleroderma Stole My Christmas To-do List, and I’m Thrilled

Lisa Weber avatar

by Lisa Weber |

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When we became parents, my husband and I started our own holiday traditions. One of our favorites was taking our two daughters to snag the plumpest pine tree, and then going home to enjoy everyone’s favorite meal of homemade breaded chicken cutlets, mashed potatoes, and gravy. Bellies full, we’d hang our precious ornaments on the tree and enjoy hot-fudge sundaes while admiring our masterpiece.

While all of this may sound absolutely magical, in reality, it was exhausting. From the chaos of pine needles scattered across the floor to the unimaginable mess in the kitchen, I was entirely overworked and stressed out.

That all changed on the first Christmas after my scleroderma diagnosis in 2014. By the time December rolled around, the resulting joint pain and lung damage had taken over my life. I could barely get out of bed. And I was still learning how to battle through life with this disease. 

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We still managed to pick out a Christmas tree that year, but cooking dinner simply wasn’t going to happen. On the way home from getting the tree, I remember sitting in the passenger seat of the car and looking back at my two little girls strapped snugly in their car seats. In that moment, I decided to throw out the to-do list I had created for the day. Instead, I thought about one thing on the list that would make the night enjoyable for the tiny believers looking back at me: ice cream sundaes for dinner!

We ate loads of junk food that night, and my girls thought it was spectacular. Honestly, so did I. The giggles were loud, and the excitement was powerful.

That evening, time slowed to match my body’s pace, and I truly enjoyed the moment. It’s curious to note that a new tradition was born at the lowest point of my life, all from such a simple idea. 

Carefully choosing how to spend my time

I used to believe the holiday season could only be successful if I created long to-do lists and dutifully checked off each task. For weeks, I would labor on decorations, ruffle yards of fabric for dresses, battle my way through crowded stores, and create handmade gifts to show my love. But I didn’t realize how miserable all of it made me.

Of course, it felt wonderful to see the joy on my loved ones’ faces, but those moments were short-lived. And if I added them up, they wouldn’t even be noticeable when compared with all of the time I had spent being stressed out and overworked.

After scleroderma began attacking my body, I was forced to change my habits. My body could no longer tolerate being overworked. Insane fatigue, lack of oxygen, and finger ulcers limited how much I could do.

To compensate, I began prioritizing my daily lists according to what was most important. That way, if I couldn’t do everything, at least the critical tasks would be finished. Things like perfectly wrapped gifts adorned with ribbons and fresh pine sprigs got pushed to the bottom of the list. Those types of activities were rarely done anymore, and over time, I stopped adding them to my daily agenda entirely.

Reflecting on what’s important

Scleroderma has taken so much from me, but it has also prompted me to make positive changes. Because I can only do a little each day, I’ve been forced to reevaluate what is important. Instead of spending hours making homemade marshmallows and being too tired to enjoy them, my family now sits together longer and catches up over hot cocoa topped off with store-bought impostors. It’s fantastic for the soul.

I wish I could say the transition has been easy, but it certainly wasn’t. For years, I’d often find myself hiding in the closet, sobbing, and feeling like a failure because I couldn’t do everything I wanted to. I spent a lot of time being angry at scleroderma for taking away my ability to accomplish the things I had set out to do. I felt like my disabilities were ruining Christmas.

But over the years, I couldn’t ignore the fact that the holidays continued on despite my limitations. And I certainly couldn’t ignore how much more joy I found by simply spending more time with family and friends. I discovered that scleroderma wasn’t ruining Christmas — my ridiculous to-do lists were.

Thank you, scleroderma (just this once)

I must thank my disease for stealing my long checklists.

When the holiday is over, it doesn’t matter how much we accomplish or how fancy everything is. What matters is how we spend our time. Even if the only thing we can do is snuggle with our kids while watching a holiday movie, it is time well spent.

To all of the scleroderma warriors out there, I wish you a happy holiday season. My wish for you is that you’ll realize that your presence is enough, and your smile is the best gift you can give to yourself and everyone else.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Tobey Schwartz avatar

Tobey Schwartz

I too have realized that this year I need to cut my expectations in half. When I am wrapping presents and become upset because I can't make bows or have trouble using the tape dispenser I just think "no one will be upset or notice if your wrapping is a little rough". As my sister said "that's why they make gift bags". My sister has written my gift tags for me. For the first time in my life I have an artificial tree but it is a beautiful one. I do a little each day and I will still enjoy the holidays and have some empathetic friends and family over for scaled down Christmas activities.
Thank you for your article

Reply
Ranjan Ahuja avatar

Ranjan Ahuja

Thank you Lisa. What an important and warming reminder of what really matters, and how we (all) can get out of our own way! I have been grateful for your articles this past year, they help me to face and get through the realities of this condition. May you and your loved ones have a wonderful holiday season.

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sira perez avatar

sira perez

Thank you Lisa. The most important thing is to spend quality time with your family. You are a true warrior. Blessings

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