Nothing I Write is Right

Hello Readers! Long time no see.

You may or may not have noticed that I haven’t posted a piece since Mother’s Day.  I could tell you it’s because I’ve experienced severe writer’s block. I could tell you it’s because I’ve contemplated pulling the plug on my blog. I could tell you it’s because between gum surgery, tooth extractions, and having my floors redone, the summer ran away from me. None of these would be lies, but they wouldn’t be the whole truth either.

The whole truth is that I started writing multiple pieces this summer that all felt wrong. I wrote a funny bit about my iPhone breaking, a silly piece on constantly nagging my children to pick up after themselves,  and an ode to Carol Brady.  When it came time to hit the “publish” button, I just couldn’t do it.

How could I have the audacity to write such frivolous content when the NAACP was issuing a travel advisory, warning African-Americans to use extreme caution when traveling to Missouri? Who cares about my funny antics at the Apple Store when North Korea is threatening life as we know it? Why on earth would anyone want to read my goofy homage to the fictional Carol Brady while Nazis  marched on the streets of Charlottesville?

Okay, so maybe this past summer was not the time to publish fluffy stories.  I shifted my focus and tried writing something smart and meaningful. I wanted to contribute to the national conversation on Confederate statues, or freedom of religion, or the three branches of government and how it relates to the checks and balance system. Each attempt abruptly ended after the second or third sentence.  Nothing I had to say was any smarter, braver, or more honest than what I was already reading. In fact, most of it was just plain bad. So, I wrote nothing. I participated in conversations/debates with friends and family, but my blog remained inactive.

With Labor Day drawing near, and summer almost over, I’ve decided to reignite my blog. I may not write about current events, but that doesn’t mean they’re not weighing heavily on my heart. I may not publish earth shattering pieces that change anyone’s opinion or perspective. Instead, I’ll try writing about the things I know best; gratitude, love, family, friends, kindness, resilience, and laughter. I know my blog won’t change the world, but maybe it can momentarily shift your mood.

Here’s a piece I originally wrote for my column on Sclerodermanews.com 

Family Fun and Scleroderma Don’t Play Nice

It’s hard to find an enjoyable outdoor activity that my entire family of four can do together. First, there’s the eye-rolling protests about having to spend time with parents compared to the far preferable option of hanging with friends. This universal issue comes with the territory of raising a teen and tween.

Not so universal are the constraints my scleroderma puts on me. My inability to ride a bicycle, participate in swimming activities, or walk far distances shrink our “quality family fun” options.

So on July 4th, when we announced to our kids that we were going to spend the day as a family doing something fun, we knew the odds were stacked against us. The plan was to rent a paddle pontoon boat so I could sit comfortably on a cushioned boat seat while my husband and kids paddled me around. My children were going to have fun with their parents — whether they liked it or not!

The boat rental line twisted around, full of anxious adults and whiny kids, all hoping to get the boat they desired before they were all taken. It became increasingly apparent that we were not going to get a coveted paddle pontoon boat. My husband has many wonderful qualities, but patience is not one of them. I became intensely irritated by the silent adult tantrum he was throwing with his pouting facial expressions.

As the family in front of us secured the very last paddle pontoon boat, we tried to figure out an alternative. We could turn around and go home, or we could rent two tandem kayaks — one for my son and daughter and one for my husband, Dave,  and me. Dave repeatedly asked me if I would be OK to sit in a tandem kayak.

I thought to myself, “No, I won’t be OK. You might as well be asking the Tin Man to join the Olympics gymnastics team. My legs will be unable to fold or extend, my back won’t support me, and my neck will cramp.”

“I’ll be fine! This will be fun!” Why did I lie to my husband when he was expressing sincere concern for my well-being?

Maybe I was tired of being the person who has to limit what our family can and can’t do. Perhaps I didn’t feel like letting scleroderma win. I thought about how my husband has to do so much more than his fair share and I couldn’t bear to disappoint him. Plus, the thought of getting in the car and listening to both my kids complain seemed far more undesirable than the physical discomfort I was about to face.

So I did it. I suffered the public humiliation of clumsily folding my stiff limbs into the kayak while the teenage boat staff stared. As predicted, my neck cramped and my back ached. Thankfully, Dave not only did all the oar work, but repeatedly tried adjusting himself so that I could lean on him for support.

Floating along the calm water, I watched my kids’ vigorous arms move their kayak forward as glistening drops of water lapped from the oars. What an amazing miracle that from my broken body came these two remarkable people.

A bizarre uneasiness washed over me. I couldn’t put my finger on it immediately, but then I remembered where I was on July 4th, 2006. Eleven years ago I was lying in the ICU. My crimson red blood drenched the white bed sheets as my family prayed over my half-dead gray body. The constant din of my ventilator reminded everyone how desperately I was fighting for each breath.

Eleven years ago, I had suffered grave complications after my daughter’s birth. My deteriorating health led to another surgery, just before the Fourth of July, where my spleen was hit and I hemorrhaged on the operating room table. In the months that followed, I de-conditioned to the point of temporary paralysis from the neck down, was unable to speak due to a tracheotomy, couldn’t eat or drink, and suffered from a myriad of other critical health traumas.

Every Fourth of July since, I recalled how close I came to missing out on raising my kids. Each year, I had thought about my friends and family who relentlessly fought to help me reclaim my life. I had always taken time to be grateful, reflect on how far I had come, and appreciate all the joys in my life.

How could I have forgotten the significance of this day? My physical discomfort faded and I focused on Dave’s legs supporting my slumping back and his arm muscles propelling our kayak forward. I looked at my two strong, healthy children in the distance. I couldn’t stop smiling.

18 Comments »

  1. Please, don’t ever think we, your readers, expect you to write about current events. All our hearts break in unison as we follow the ugliness on the news. We read your blog because we like you. We like your writing, your sense of humor, your stories of your every day life that is certainly not really just the every day of every person. We are inspired by you and happy that you take us on your journey. Thanks for what you bring to the table. 😘

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  2. Thank you for getting back on the horse (or kayak) and writing again. I love your blog and it always lightens my mood and makes me smile. It doesn’t have to be earth shattering or thought provoking. Just sharing your daily or monthly scleroderma struggle with humor and wit is enough for me and I am sure a lot of other people. You make me appreciate what I can still do with stupid disease. Please keep writing.

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  3. Thank G-d you wee able to push away those horrible memories of that time and enjoy yourself and most of all enjoy your wonderful and amazing children!

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  4. What a blessing your are to your family and friends….and to allll of us who get the privilege of reading your blog posts. Your wonderful observations keep me smiling and chuckling ….especially the tin man joining the Olympics….OY VEY….that had me falling off my chair! Please don’t stop posting….everyone loves to hear from you…and, I for one, would miss you dearly!

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  5. I LOVE the fluff!!! Keep it coming! If I want to know what’s going on in the “real” world…I will read a newspaper or watch the news. I loved this one! And…I am so glad you went for the physical discomfort in exchange for the memory = priceless! This is what biking is about for me… It sure the hell does not always “feel” good and I pay for it, but the memories… They last forever! Love you sister!

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  6. Exceptionally well done! This blog epitomizes the struggle scleroderma patients struggle with every day. We want to be part of life, living in the moment, but often can’t get past whatever physical discomfort or issue prevailing this day. Picking our battles, especially if we have small children is difficult and often means changing plans by the hour or minute. Thank you for your great insight and willingness to share your struggles!

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