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...

Friday, June 14, 2013

Impact... Community In Action

They say that victims of earthquakes experience them in slow motion; as the walls come crashing down around them in minutes, time seems to stand still. Sitting with my husband, in the doctor's office, after months of searching for answers, I had a similar experience when the neurologist delivered my diagnosis of amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease. The words hung in the air, as if I had the option to dismiss them, or accept them. I remained calm, almost frozen, as I noticed the tears begin to stream down my husband's face. “Two to five years,” the doctor said, “That's the prognosis for this disease. There's no cure, no effective treatment for what you have, I'm sorry.”

I had heard of Lou Gehrig's disease, but frankly, I knew nothing about it. I was always concerned about Multiple Sclerosis, as it runs in my family, so when my symptoms began to progress, I was almost certain MS would be the conclusive diagnosis. I was prepared for that, not for ALS, not for something worse, not for something fatal. In the days to follow, I remember thinking, why isn't there a cure or at the very least an effective treatment?

Unfortunately, like an earthquake, when we hear about ALS, it only lasts a news cycle and then we lose focus, but the devastation remains.

And then come the aftershocks, as you tell your family and close friends, your boss, co-workers, and eventually the person who cleans your home, cuts your hair, and paints your nails, because you can no longer hide the fact that you're sick.

Each time it becomes more real, more terrifying, and more overwhelming, until you decide to accept it and live your life despite it! Today I am living with – not dying with – ALS.

I don't say this flippantly, like someone in denial and I didn't get here easily, but I did get to a place of hope and optimism because of the people that surround me.

In my twenties, I read a book about family systems; the author used a mobile to illustrate how an event in the life of just one member of the family, will impact every other member of that family system. Try it, watch a mobile moving effortlessly in synchronized harmony, now touch just one of those dangling pieces; and the next thing you see is utter chaos, each piece flying through the air in a different direction. You see, the expectation is that there is always a negative impact; that has not been my experience; that is not my story.

As I sit here in my power wheelchair, feeling the warmth of the afternoon sunlight on my face, I am reminded that spring is coming. Each year, when I think that I just can't take another day of winter's biting cold, spring pops and a daffodil breaks the earth's crust and pushes through. This is one of my favorite things. It's the way I've come to think about living with my disease... Just when I think I can't endure another day, something happens to remind me there are good days still ahead.

Days when I get to share lunch with friends, see musicals at the theater, receive a note of encouragement from a dear friend I haven't seen in 20 years, and recently, I was able to see my beautiful, ten year old daughter sing "You Make My Dreams Come True" on stage, while she literally was making my dreams for her come true. Her joy was my joy!

Since early 2010, I have experienced what it's like to move from an active working mom who exercised daily, enjoyed rollerblading, cycling, cross country skiing and running with her husband and children, to a mom that has learned to use assistive technology in order to help her daughter do her 4th grade math homework because I could no longer speak. That said, if not for my illness, I would not have been home after school with her to spend those precious moments.

What I have learned in the past few years as my body gradually deteriorated is that being sick is not for those weak in spirit. It takes determination, strong faith, and the ability to see the blessings that come along with the pain, to get through it one day, one hour, and sometimes one minute at a time.

Most importantly, I've seen how my illness has impacted those around me. Over the last three years, I have seen co-workers, friends, and neighbors become my hands and feet when mine would no longer serve me. They provided child care, transportation, and meals when we needed them. They packed up our things, and unpacked them again, to move us into a new home when I could no longer climb the stairs of our family’s home. They participated in walkathons, and ran alongside us, as my husband pushed me in a specially designed jogger, to honor a commitment he made to run my first marathon. A special group of neighbors even went door to door to tell our story, and raise awareness and funding for research and patient care.

Just when we thought we had seen blessing after blessing, two former students of my husband's, now in junior high school, organized an annual dodgeball tournament. Recruiting support from local businesses, parents, fellow students, and teachers to help, these young ladies engaged the entire community in our efforts to fight!

They've organized the dodgeball tournament for two years now, and each time I roll into the high school field house, I am overwhelmed by the number of people who participate and attend. There were teams of teachers, parents, high school students, and junior high students, each team dressed to show their unique spirit, each more amusing than the next! Bubble wrapped teachers, moms in tiaras, and students in their brightly colored t-shirts and wild socks, they made me smile and laugh.

Many of them greeted me, or stopped by to ask how I was doing, and reminded me that they keep us in their prayers. One adorable group of tiny elementary school girls, who attend the school my husband works in, walked by the bleachers back and forth, selling wristbands, and stopped by to ask about my new puppy, Sally. Apparently, word got out about my furry Valentine's Day gift! I did not have my Dynavox (communication device) yet, so it was difficult to respond, but I smiled and nodded my head to acknowledge them, and mouthed the words, thank you.

I also had the pleasure of meeting the lovely young ladies who inspired us with their vision for the event, along with their parents, grandparents, and siblings.

One family who participated had recently lost their high school aged son, Michael to brain cancer. Yet mom was at the front table welcoming people as they entered the event, collecting admission, and dad led a team, "The Heavy Hitters". Both greeted me individually, and although there was little spoken dialogue, I sensed a connection of deep understanding in their eyes, a moment of mutual compassion, that won't be erased from my heart. My husband had been one of Michael's teachers, and even in their time of grief, they were present to support us, nothing short of amazing.

This was impact we never saw coming! This was community at it's best, and I am humbled, and filled with gratitude, because no matter how bad it seems, I know we are not alone.