My Roll on Capitol Hill



From Kara Aiello
 
Flash Mob near Capitol Hill Kara is 3rd from right)

About two weeks ago, I participated for the second time in an amazing event known as the Roll on Capitol Hill or ROCH in Washington D.C.  Sponsored by United Spinal Association, ROCH in an annual legislative advocacy event that addresses issues that impact the health, independence and quality of life for individuals living with spinal cord injuries and disorders.So every summer, people with and without disabilities come together in D.C. for four days to learn, advocate and educate to our Congressional leaders' policies affecting the everyday lives of people with SCI and related disorders. Although I do not live with a SCI, having a disability from birth (Osteogenesis Imperfecta-Brittle Bones) makes this event as important for me as all involved, since the policies on the table affect us similarly.  What these policies give to us as individuals, helps us to give back and be contributing members in our communities, which makes a better world for everyone.      
   
The event isn’t all work, as important as that piece is; it’s also loads of fun and a great way to meet people around the country who, regardless of disability, share a common experience.  It’s not to say that our disability experiences aren’t different, be it we are newly injured or face a disability from birth, but it’s nice to meet other wheelchair users or people who have shared experiences and can relate.  Examples of shared experiences include being stared at (not that we don’t check each other out too, ha ha), or being around persons who are standing and tower over us (although I met some chair users who towered over me as well). And it was nice to talk to people eye to eye, joking and laughing about shared events and experiences in our lives that aren’t always understood out in the world.  But it’s also important to add that people who are there and don’t live with disabilities bring their own understanding, compassion and experience to ROCH, United Spinal and our own personal lives.  We have board members who have loved ones who live with SCI or related disabilities, rehab staff who spend their lives helping people regain a quality of life out in the world, and countless family members and friends who want to be a part of their loved ones’ journey, and that makes for a great community of which to be a part. It’s also the only event I have attended where I have met more than two people with the last name of Aiello and are not blood relatives, and all we can say is,“I never meet anyone with my last name.”   

Crazy to Most, Normal to Us

By Emily Ann Hupe


When I walked into the hospital for my scheduled c-section on November 17, 2004, I had no idea that those would be the last steps that I would ever take, as an able bodied mom. A rare complication during my procedure, caused a bruise on my spinal cord at T 11-12. I had no feeling from the hips down on my right side, some feeling on the left and no bowel or bladder control. I was now a full-time wheelchair user. Waiting at home for me, were my 6 other children ages: 11, 9, 7, 5, 4 and 2. I had no idea that cold November morning, as I stared down at the perfect face of my youngest child that the next 12 years would nearly destroy our beautiful little family.

I would have over 10 surgeries numerous complications and procedures over the next 12 years. The first 2 years, I lived in constant and excruciating pain. There were countless doctor appointments and procedures. I was in a constant state of "preparing for" or "healing from" something. During this time, I was desperately trying to "mom" from what I came to refer to as "the worst seat in the house". Life for me was measured in hours between pain medication and how many good days that I had in between surgeries or complications. We have home schooled all of our children, so that further complicated my situation. We spent most days in my room and bed, during those first 2 years.
Dinner time!
Slowly we settled into a new normal. My husband is self employed so he was home most days. He would get up at 4:00 AM, work until 8:00 AM in his office and then help get the kids and me up for the day. He would then be Mr. Mom for the day and return to his office after dinner until the bedtime routines began. Often times, he would work late into the night as well. We did not have family close by and we lived 45 minutes from most of our friends in town. People pitched in, at times, and were amazing. However, the reality was that everyone was busy with their own lives and we were on our own most of the time.

The Impossible Dream Becomes a Reality


Deborah, at the helm of The Impossible Dream

Over two years ago, we featured mobileWOMAN Deborah Mellen, an avid sailor & a philanthropist who is now sailing the world and educating others about the possibilities for people with disabilities.
Deborah’s story began tragically as many do, when she became paralyzed in her mid-thirties, in Tuscany Italy. Originally from New York, Deborah and her Italian photographer husband, moved to his hometown in Tuscany to experience adventure and hopefully raise their future children there. Unfortunately, this dream was shattered due to a motor vehicle accident. 

Needless to say it was a long journey to recovery for Deborah, requiring many surgeries, support and emotional strength. One activity she found therapeutic and life-saving was being on the water.
“Most of my rehabilitation was done in Miami, Florida and it was there that my surgeon put me in touch with Shake-a-Leg, an organization devoted to bringing the experience of sailing to people of all abilities. I fell in love with the beauty of sailing, the wind, the water, the silence and peace. Water was an element that offered me the physical freedom that I no longer found elsewhere.”
 
Deborah & her dog, Winter enjoying peace & tranquility