Defining Disability

The work in my Mastermind program continues. 

Part of our tasks has been to think about what we write and why. (I wrote a bit about this in a May blog post. Click here if you missed it.)

This week, however, I am sharing two photos with you as another example of what I write and why.

The photo shows my seventeen-year-old son and me parasailing, a week-and-a-half-ago during our family trip to Oahu. We calmly dangled 1000 feet above the Pacific Ocean. We talked and marveled at the incredible view below us and around us, noticing the quiet and the sense of peace we felt being that high up.

On that day, in those moments, my body was physically strong enough to climb aboard the boat, maneuver into the harnesses, and smile and wave at those down on the boat looking up at us. 

Yet back at the hotel, my backpack held my blue disabled parking placard. And when I left Los Angeles and arrived in Honolulu I received wheelchair assistance at both airports. (I also had wheelchair assistance at both airports for our return flight.)

Both situations are true. 

I may fit the more narrow, stereotypical idea of a disabled woman when someone sees me sitting in a wheelchair at the airport. 

But, I’m still a disabled woman, even when I’m gliding through the air, with a multi-colored parachute open behind us. 

And that is why I write — to demonstrate there is no definitive, one-and-done definition of disability.

Friends, I’m curious. Have any of you gone parasailing? Where? What was your experience like? Please feel free to share in the comments!

Books, Boys, and Bodies

The view from our balcony. I admit – I didn’t get a whole lot of writing done.

For this weekly blog of mine, I generally write about one of three B’s in my life:

–  Books (because a writer must also be a reader)

–  Boys (mainly my fourteen-year-old son)

–  Bodies (living with my autoimmune disease, an invisible disability).

Last week, it occurred to me just how much those three are often connected and inter-related.

Let me explain.

Last week at this time, my family and I were in Maui. 

This was a big trip for us. The last time my husband and I were in Maui was for our honeymoon, twenty-three years ago. Our son had never flown before, and I hadn’t flown since before my son was born. Which means I hadn’t flown since my UCTD (undifferentiated connective tissue disease) diagnosis. Add in my worries about COVID, and you can understand why I went into this trip with a great deal of anxiety. At the same time, I was determined to experience the trip as fully as I could. 

Which is where the B’s come into play.

In terms of books, I brought one book and one magazine with me. I didn’t read nearly as much as I thought I would. There were no days spent lounging by the pool. There was too much to see and do — including a visit to the Barnes and Noble in Maui.

When it comes to boys, my son was much more adventurous than my husband. During the planning stage of this trip, my son had told us he hoped we could go parasailing and ziplining in Maui. I had been parasailing once before, many years ago, on Catalina Island. That time, my husband was an observer, not a participant. And he opted for the same role this time around.

It was because of my son that I pushed my body as much as I did. 

Parasailing? Me? Yes, definitely. The parasailing itself didn’t cause additional pain in my leg. The only pain and discomfort came from getting in and out of the boat. But, it was a small price to pay for the incredible experience, as my son and I rode tandem and admired Maui’s beauty from such a unique perspective.

Ziplining? Me? Yes, I think so. Neither one of us had ever gone ziplining before. We signed up for an eight-line zipline adventure that promised to be something neither one of us would forget. I worried that I wouldn’t pass the knee and ankle check that takes place before we’re loaded into the van and driven into the hills. (On my waiver, I did disclose the information about my illness, and I did pass the knee and ankle check. The woman who observed me and gave me the final clearance reminded me to just go slow and hold your son’s hand to help you.) The actual ziplining wasn’t nearly as hard on my body as the hiking and walking from one spot to another. And I admit, I did slip and fall during one of our walks — thankfully, no injuries or scrapes. 

What an awe-inspiring experience we had. Views of the Pacific Ocean if we looked one way, views of the West Maui Mountains when we looked the other way. 

I felt strong, something I don’t always feel. 

Because on this same trip, I did something I had never done before. I used a wheelchair. A very good friend of mine had encouraged me to take advantage of the wheelchairs available at airports. Don’t waste your legs standing in line and walking through an airport, she said. And she was right. But it still didn’t make it any easier for me to ask for that accommodation. In fact, I waited for the day before our trip to submit the request.

We did a lot of walking during our trip. (Sand is so hard to walk on!) We did some hiking, too. There was so much to see (chickens and roosters in parking lots, waterfalls, flowers), so much to admire (sunsets, rainbows, puffy clouds), and so much to be grateful for (our trip, our safety, all that my body can still do).

And we each came home with one more book than we left with.