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...

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.

dd

Puppies In Heaven...

Sometimes it seems like a three ring circus around here, but I wouldn't trade it for anything! If you've been reading my blog, then you already know about Blue, our 50 pound Border Collie mix, who thinks he's a lap dog. Given the chance, Blue would gladly sit on my lap, if he could just figure out how to get up here without hurting either of us. Luckily, he has not found a way.

Then there's Crabby, our cat. She has earned her name with her "Don't call us, we'll call you!" attitude. Don't misunderstand, she wants attention, it's just going to be on her terms, and not yours. You cannot pick her up, you cannot brush her, or move her, unless she approves. Weighing in at about ten pounds, I am often amazed at the effort it takes to get her to budge.

She is a beautiful long haired, grey and white kitty, with bright, hazel green eyes. Unfortunately, if she won't let you brush her coat, it becomes matted, and since that was my job, well... you get the picture. Recently, we had her groomed into a lion cut. It's exactly what you would imagine, she was shaved with the exception of her head in the shape of a lion's mane, and what appears to be a duster at the tip of her tail, simply hilarious! I'd imagine she's feeling a bit naked, having lost much of her body mass in the process!

She has taken to new behaviors as a result of the whole traumatic event: sleeping on the heating vents, my right shoulder during naps or overnight, and walking the length of the edge of the whirlpool tub, as if it were a balance beam, to jump on my lap during my therapies in the morning. Not that I mind so much, but she's disconnected my feeding tube a couple of times now, and that's a big mess!

Overall, I'd have to say, she has been a lot more cuddly.  She was living in the basement for about six months after we moved, and she has finally moved up to the main floor to live with the rest of the family. I still don't think that she's forgiven us, but it's nice to see her back.

Then after years of pleading, my wish came true on Valentine's Day, and my dear husband placed a ball of fur on my lap, later known as Sally or officially, Mustang Sally Brown, on her pedigree papers. She is the cutest thing on four feet! Golden and white, the most adorable menace you've ever met. Living up to her breeding, she's a little Shih... Tzu much of the time!

Nothing is safe anymore, Sally drags around whatever she can get to: slippers, shoes, towels, and unmentionables of all kinds. She loves to play in the backyard, hops through the grass like a bunny, and enjoys trudging through the flower beds to find a stick to chew on in the mulch. Sally doesn't subscribe to the idea of being a little lady, and returns looking like a scruffy mutt, enveloped in dirt! The only thing to do at that point, is to drop her into the laundry room tub. My husband seems to enjoy it and so does she, especially the blow dry to follow.

Blue and Sally are great together, rolling around on the floor, chasing each other, sharing their toys in a tug of war, and terrorizing the cat; they were fast friends. They have brought me so much joy and endless amusement, the very best medicine.

I feel a strong connection to our pets; I'm certain Blue knew I was sick well before we did. He is on the job 24 hours a day, even when I make the slightest noise in the still of the night, he is up on the bed investigating. There was even a time, I recall him waking my husband, in the middle of the night when I attempted to get up on my own, as if to say "Hold on, you're not going anywhere alone.", my protector.

Pets are God's little bundles of healing energy, and I sure hope there are puppies in heaven...

Smiling through the pain...

It was a brisk, sun filled morning on the Jersey shore. We were fortunate to have intimate knowledge of the back roads in the local towns, and made it to the start in record time. We advanced through the parking lot to the entrance of Monmouth Park, as if we had backstage passes to a rock concert. Shortly after we arrived, we spotted Eric, with his distinct mohawk hair cut, new to the team this year, he added his own flash of excitement. This was going to be fun!

Huddled in the van to stay warm, waiting for the rest of our teammates to get through the long line of vehicles pouring into the lot, you could feel the nervous energy. Chris called out to Nancy and Dani, two of our half marathoners, racing to the starting line as it was beginning. We exchanged quick hugs, and they were off!

Soon after, Laura, Meredith, and Kyle came trotting over, and it was time to open the door, and roll down the ramp. The controls had recently been changed on my power wheelchair, and admittedly, I was still trying to get the hang of it. Chris eased me down carefully, and in a snap they transferred me from the chair into the jogger. Harnessed in, we headed for the last corral at the start. We were not looking to set any records that day; it was about the journey, not the finish time.

This was the third year we were returning to the New Jersey Marathon. Although Chris ran it in 2011, he ran it alone, while my sister Angie, and cousin MJ, pushed me in a wheelchair to catch a glimpse of him at as many check points as possible. It was a sight to behold, two middle aged women pushing a third, as fast as possible, uphill then downhill, laughing hysterically! I cannot imagine what the people we passed were thinking, but we had a blast cheering Chris on at every opportunity. Having been diagnosed five months earlier Amyotrophic Lateral Sclerosis (ALS), I could still walk short distances, but my running days were over.

In 2012, Chris ran while pushing me in the jogger, Meredith and Kyle joined us for the full marathon, while a group of nine other friends and family members ran the half. Kyle, also taught Physical Education, like my husband Chris, and Meredith, a former third grade student of his, was all grown up and teaching too. I love to tease him about it, because it makes Chris feel old. They had plenty to talk about during the race, and well... I was as snug as a bug in a rug, and managed to fall asleep for a bit after mile ten. Something Chris will never let me forget!

This year, 2013, was very different, Super Storm Sandy had ravaged the coastline at the end of 2012, and my disease had progressed leaving it's crippling affect on my body. Neither of us would ever be the same physically, but our spirits were not broken!

We started out slowly, at the back of the crowd of runners lining the start. A place, I'm certain, my veteran, marathon husband, has never before seen, and I promised myself, to stay awake the entire 26.2 miles. It was the first chance I had to see the shore since the storm, and I didn't want to miss a mile. As we traversed the course, vivid images of my childhood ran through my mind, followed by my first car, first apartment, and many memories of my adult life. I found myself once again, questioning why I had ever left.

I enjoyed listening to the banter flying back and forth between the runners. Meredith and Kyle were weeks away from their wedding, Laura was running her first full marathon, and Eric had a witty sense of humor. Given that they were all good friends, there was plenty of material with which to do a stand up routine as they razzed each other, and kept me entertained through the whole event.

Having been awake for every mile this year, I learned that marathon runners go through phases as the miles tick away. They start out pumped up, filled with adrenaline, calling out the mile markers as they approach. "That's three!", "That's six!", "That's ten...", "Looking good!", they cheered, while passing Shot Blocks and Goo for energy, and stopping briefly for port-a-pottys, Gatorade, water, or to thank a random citizen with a shout-out as we passed.

Another big difference this year was that Chris allowed the team to participate in the hardest part of the race, pushing me! I know that was a tough decision for him, but I'm glad he relented; I think it gave each runner a deeper sense of sharing the experience, than running along side us could provide.

By mile eighteen, I think it's safe to say we were all hitting the wall. This was close to the course turn around point, and it could not come soon enough, as all of us had reached some level of physical discomfort. This is when, for a brief stretch, we jokingly verbalized our discontent. We hated the sun, we hated the wind charging toward us, we even hated Eric, who pushed us faster, keeping up the pace!

Luckily, this is also nearing the point in the course where we turn toward the ocean on the last leg of the journey. The grandeur and vast majesty of that view, at least for me, seemed to quell the pain to a tolerable level.

The runners say, a marathon is really two races, a twenty miler and a 10k, and I can see why. At mile twenty, the game changes, and it really becomes a mental challenge; the only way through it, is to break it down, into bite size pieces.

The 10k melts into a 5k, and eventually all that stands between you and the finish line, is the final two tenths of a mile. Although I was not running, it seemed that every muscle in my body ached from the inability to move, as badly as it did when I could run, and on some level, I shared the pain of my teammates.

At mile twenty-six, all of them yelled out, "Let's bring this home!", and we lined up across the promenade from side to side, as we crossed the finish line together! This year I intended to earn my medal, and by the end of the race, I felt that I had!

I dedicate this blog to my husband Chris, our friends: Meredith, Kyle, Laura and Eric, Nancy, Dani, and Frank, who signed up and smiled through the pain, to help those of us who struggle with ALS every day!

We thank you for your friendship, commitment and generous support; we could not do this without you!

Thank you my friend Loni, it was an honor to have you and Nathan at the finish line to place my medal around my neck.

Special thanks to Joe Gigas, the Executive Race Director of the New Jersey Marathon, who welcomed us back another year, our friends and family members who's behind the scenes help made this trip possible, and Rob Spahr of the Star-Ledger for picking up our story during ALS awareness month!

Dear Friends and Family

As many of you know, I have been living with ALS, Lou Gehrig's disease since my symptoms began in early 2010. It's now been three years since this all began, and I have learned a lot about myself, and the incredible people who have been right beside me.

When it began my fingers were twitching and losing strength, and you helped me open my water bottles. When my right leg started to drag, you laughed with me, and told me it was time to give up wearing heels. When I fell and broke my wrist, you started driving me to work, bought me a cane, and eventually a scooter to get around safely. When my speech began to slur, and it strained me to talk, you spoke for me. When I received my diagnosis, you held me in your arms and cried with me.

When I could not come to work, you visited me, and when I could not climb down the stairs of my home you helped move me to a handicap accessible home. You walked alongside my husband and I in walkathons, and many of you cheered, walked, and ran with us in my first marathon!

Together, with your help we raised over 50,000 dollars for research and patient care in the last two years! An unbelievable accomplishment, that our patient community recognizes with immeasurable gratitude. I see first hand the benefits of your fund raising efforts right in our local support group, and in the services provided to my family from the Les Turner ALS Foundation.

In a few short weeks we will head back to New Jersey for our second marathon and we are not nearly as close to our goal as last year, yet every month there are more families coming to the support groups for help! Please share our story with your Facebook friends and family members. I'm typing this blog because I am fortunate enough to have technology that allows me to communicate with you even though I have lost my speech and the use of my arms and hands. Help us provide this and other needed equipment and services to others living with ALS!  Click the link above to connect to our website and help or share my blog through Facebook. Please don't let this opportunity pass, someone is diagnosed with this disease every ninety minutes, help us stop it!
Thank you,
dd