Sunday, June 23, 2013

Things I miss...

Disclaimer: the following litany of activities is in no order of priority, they are, as they fall haphazardly into my mind and onto the screen before me. It is, in fact, incomplete, as I'm certain that once posted, I'm apt to recall something I have neglected to include. It also excludes those things that are private, and should remain so...

I would also like to point out that I do not intend to present this as a list of complaints, it is simply one individuals perspective of living with restrictions, in the spirit of Julie Andrews, let's try to think of it as a list of some of My Favorite Things.

Hugging, don't underestimate the power of human touch.
I come from an Italian family, and we're huggers; we hug our friends, their friends, relatives, co-workers, acquaintances, and pretty much anyone who evokes the natural urge in us.

While I still receive hugs, my arms are not strong enough to wrap around anyone and hug back, so while I still enjoy them, I feel like something is missing. I've also noticed, the hugs I receive are much more gentle. I know I'm not looking very strong, but I assure you, I won't break from a more robust hug if you are so inclined. My daughter is proof of that as she often embraces me with the approach of a wrestler attacking his opponent, and I have managed to survive.

Driving, after more than a decade of commuting in bumper to bumper traffic to get to work, I can hardly believe I'm saying this but I miss driving. There is just something about the freedom that I felt when I was driving alone on a sunny day, with the sunroof open blasting my favorite music. Yes, of course I was singing along, and there were times, my hands may have left the steering wheel as I made a joyful noise...

Shopping, I know what you're thinking, what woman doesn't like to shop and well... I can still shop online or go to the store in my power wheelchair. It's just not the same. Shopping was therapeutic, relaxing, and though I avoided malls, I enjoyed taking a leisurely stroll through Target on Sunday with my husband, Chris. Although, he insisted on having a list, and imposed a maximum number of impulse purchases, sometimes putting a damper on the excursion. It was all in good fun, as I rarely got reigned in for exceeding the limit.

Movies, yes I can still go to the movies, but the experience is not quite the same... Handicapped seating is safely located at floor level, you know this area as the place you have to sit if you arrive late to a popular movie on Saturday night. It can be hard on the neck, unless of course you have a Permobile C-300 with tilt controls! While I can see the logic, I really miss the view I might otherwise enjoy in the upper rows of stadium seating! Refreshment options are also limited, as I want to be considerate of my fellow patrons, and spare them the delight of spontaneous aspiration on a rogue kernel of popcorn. Luckily, the popcorn at our local theater smells better than it actually tastes.

Rollerblading, one of my greatest passions! There were times when I thought my feet could literally leave the pavement as I experienced the joy of skating! I could circle the neighborhood repeatedly in the early hours of a summer day listening to Casting Crowns, Chris Tomlin, Third Day and a variety of other christian rock groups. I can clearly remember raising my arms in sheer joy and gratitude for the pleasure it gave me, acknowledging it as a gift. Who knows what the neighbors thought, as the crazy middle aged woman raced by, while they sipped their morning coffee from their decks overlooking the lake... I am still grateful that I have those memories to meditate on as I sit here.

Singing, I enjoyed singing from an early age and later with my daughter, Maddie. We would have show tunes pouring from the iPod dock most mornings, and sing and dance as we got moving, a trick I learned that often helped get a sleepy toddler up and ready to embrace the day! We still enjoy music together but I'm leaving the singing to Maddie, and it still brings me joy knowing it's a passion we share.

Cycling, I logged many miles along the Prairie Path and the Great Western Trail over the past decade and a half, and I really miss that too. The smell of the woods always reminded me of camping with my dad and siblings, I could hardly get enough of it as I breathed in deeply, filling my lungs to push my legs as fast as they could go. Racing past the trees, ducking from the lower branches, and drinking in the colors of the prairie grass and goldenrod against the deep blue sky. I was experiencing heaven on earth.

Cross country skiing with my husband Chris, a sport we took up together the winter after we met. Chris had been teaching it for years at school with the kids, but really wasn't doing it for fun outside of school. First, we started out in the open spaces behind our home with the girls; it was a fun family activity, and then we branched out to actually buying gear, and finding trails to explore. It was peaceful in the woods, gliding along together, enjoying the wildlife as we spotted deer, bunnies, and field mice... Actually, I recall several dead field mice along the prairie path, still scratching my head over that...?

My favorite memory of this was our trip to Hickory Hideaway for Valentine's Day weekend! Chris rented a log cabin and we ski'd at Lake Carol Country Club! It was pretty hilly out that way, and we had a few scary moments as it challenged us a bit beyond our skill level, but I enjoyed every bit of it!

Physical activities with my husband and our girls, I miss skating and cross country skiing with them, riding the waves in the ocean, playing in the pool and snow tubing, the list goes on... While I have never been much of a spectator, I can still enjoy watching them! My favorite is watching all three of them compete in Dance Party on the Wii. I'm certain Chris will deny it, but I have video proof!

Work, I loved my job, and the people I had the pleasure of working with! I had the opportunity to challenge myself, and my team to continually look for ways to improve the process. I had the best team of people; they often taught me more than I taught them. I'm grateful that I had the kind of job that I was excited to be at every day!

Dressing up, at the risk of sounding vain, I must admit I miss the dresses, the heels, the feeling of being comfortable in my own skin! We attended a very special wedding this weekend, and while I got to wear a dress, pretty patent leather flats, and some jewelry, my body just barely held the dress up. I just don't look like myself anymore... Yes, it's vanity, but its also a feeling of confidence. I was completely stressed, out worrying about how I looked, whether I could keep it together through the ceremony, and not become a spectacle as I often cry at weddings. I didn't want to be the woman sobbing in her wheelchair disrupting the ceremony.

It was also awkward to have my speech device attached to my chair outside of my home to attend this kind of event, but I needed it to communicate. Turns out everything went smoothly, Chris took super good care of me, everyone made me feel comfortable; I even enjoyed a few sips of wine, totally relaxing me, and had a wonderful time!

So to sum it up, life is different but it's still good, and I'm thankful for the memories, they are vivid in my mind and this disease cannot take them from me...


  1. I am loving that you are able to share so many beautiful memories w/ us DD , once again I am awed by who you are , how grateful you have been, & are!!! I know I have more to share , .....this is a beginning ,
    I am so glad that you enjoyed the wedding!!!! Love You

  2. Dear Sis, I wrote something earlier but for some reason it didnt register. You are very strong and brave. There isnt a day that goes by that I am not thinking of you. May God bless you every day. We look forward to seeing you soon.
    Love you

  3. You are an inspiration!
    Debbie Booket Ketcham


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