Scleroderma Doesn’t Play Nice with Family Fun

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 just his pouty 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 and me. My husband 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.”

Here’s what I said: “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 then 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, my husband 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 my husband’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.

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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 Services, and are intended to spark discussion about issues pertaining to scleroderma.