The Gift of Hope

It was late at night. The hospital room was dark and quiet. I looked at my husband, and for the 40^th day in a row, and for what felt like the 100^th time that day, I said “I don’t know… I don’t know...” He held my hand and said, “I don’t know either...” We didn’t even know how to finish the sentence. It was as if we were trapped in a deep black cave. It was our darkest hour.

When my spinal cord was injured, I became paralyzed from the chest down. I had no feeling and no movement in most of my torso, my legs or my feet. I was a brick. And no one could offer me answers or hope. The doctors and physical therapists were teaching me to exist in a wheelchair, but when I asked about what my future might hold, all they could say was “every case is different,” an answer that both infuriated and depressed me.

Friends and family tried to give me encouragement, but for the first time in my life, I found no reason to be optimistic. As far as I could see, my future was grim. As we reached out to friends and medical providers for answers, they said, “Just keep going. Trust your doctors.” Yeah, right.

Then my husband called a friend who had done consulting work with the Christopher & Dana Reeve Foundation. Our friend told us about the Paralysis Resource Center (PRC), and suggested we call them. One phone call from my husband to the PRC, and our world changed. Within 24 hours, my hospital room was full of books and pamphlets explaining the causes, effects, and possible recovery therapies for spinal cord injury. Suddenly, there was more information than I could absorb. The person he spoke to followed up with us and within days I had an appointment at the  Kennedy Krieger Institute (KKI) in Baltimore for an assessment. There were no guarantees, but there were things we could do.

A few weeks later, the doctor at KKI saw me in her office. After a thorough 2-hour exam, I heard the words I thought I would ever hear: “I want you here. I know we can help you.”

My world opened up. I had a path forward. I had hope.

That was almost 11 years ago. I am standing and walking short distances. I receive physical therapy several weeks a year at Kennedy Krieger, improving my gait and my balance each time. I go to dinner and the theater with my husband often, we take road trips, and I work out twice a week with a personal trainer. I live a rich life, full of friends and family. I continue to have hope. None of this would have happened without the PRC. They helped me ask the right questions, educate my primary care doctor, and understand the possible futures I might face. Their referral to one of the best spinal cord doctors in the country saved my life. And they have continued to be a valuable resource for me through all these years.

11 years ago, as I lay in a hospital bed, I had no future. Now I can see great things ahead. I’m not young, and I may never walk again as easily as I once did, but I still have a lot of life to live. I can never repay the Paralysis Resource Center for what they have given me, but I do what I can to “pay it forward” just a little bit.

As the doctors told me: “every case is different.” Our injuries and our recoveries are not all the same. But one thing I know as assuredly as anything in my life: The Paralysis Resource Center is a lifeline and a road to a brighter future for all of us.