Posts tagged disability
I originally wrote this blog for SPINALpedia but wanted to share it as a piece of my story!
My only concern when my dad was first injured was whether or not he would live. I was told pretty early that he had broken his neck, but I had no idea what that really meant. In my 12 year old mind, my interpretation was that one day I would help my dad walk again. I envisioned him taking slow, unsteady steps as he supported himself on parallel bars. I’m pretty sure I had seen something like that on TV once, but once I learned what paralysis really meant that image was shattered.
Never walk again. The words took a while to sink in, but my pre-teen mind was already extrapolating. How are we going to play? What about the stairs in our house? How would we dance? He and I both love to dance. During those days I often thought back to us swing dancing at his wedding, him swinging me up until my feet kicked in the air. As fear started to take hold, I thought even further. If my dad couldn’t walk, how would he ever walk me down the aisle? Like so many little girls, I often envisioned that special occasion. Needless to say, I became more aware of the adaptations I was going to have to make as his daughter, the alterations in the routine and activities that directly affected my life, and my fear of the unknown.
Having lost my only brother in the accident, I was left to figure a lot of it out on my own, but I did recognize how much my dad and stepmom benefitted from the mentoring of others in the hospital. Despite the fact that there were no immediate mentors available for me, the 5th floor became almost a second home. I found comfort in being around others who understood what we were going through. Despite the challenges, life rolled on and I understood better the reality of my new life. I took responsibility for cleaning the screws bolted into my dad’s skull to stabilize his neck. I learned how to use a hoyer lift to help him get into bed. I even took shifts waking up at 2am to help turn him at night to avoid pressure sores. Transfers, cervical vertebrae, catheters and spasms became a part of my normal vocabulary. The things that had seemed scary at first became more normal. As my dad transitioned home, we discovered new activities we could share and adapted the old ones we used to enjoy. Family soccer games and “roll and strolls” through the neighborhood are some of our pastimes. I also know now that my dad will roll me down the aisle, and we will certainly dance at my wedding.
What my family overcame and embraced came in a large part from those we met in similar situations who helped give us hope. However, I quickly came to realize how many people are left without that feeling of connection, of belonging. Something needed to exist to bring the entire community together. This dream became SPINALpedia.
SPINALpedia is not just for those injured—they are not the only ones who endure an absolutely life-altering change. We carry an understanding, a connection to the disability world. We are a bridge between the able-bodied and disabled, understanding both sides of the coin, and standing in a perfect position to help bridge the gap and paint a more inclusive picture of our community. It’s imperative that those of us who have adapted our lives, who have found these connections, are available for others to also find empathy and compassion, guidance and strength to give all of us the ability to live life to the fullest.
Re-posting a blog I wrote for SPINALpedia, the website Josh and I started that we’re (finally) in the process of launching! Check us out at SPINALpedia.com and see what we’re about. Let me know what you think!
The injuries my dad sustained in his car accident were severe enough to put off any initial plans for adapting to life with disability—he had to survive first. Once he cleared the first major health hurdles, we were all then faced with the question, “what now?!”
My dad’s accident left him with a broken neck at the 6th and 7th cervical vertebrae, paralyzing him from the chest down and robbing him of the use of his fingers. All of us wanted to return to a “normal” life as soon as possible, but adding wheels, mobility limitations and new terminology made that a bit challenging. We barely knew what the word quadriplegic meant, let alone had any concept of what it meant to live with a disability.
At the time, we felt completely isolated, but the longer I’ve worked within this community the more I realize how many people have actually found themselves in similar situations—lost, confused, scared, and unfortunately, oftentimes hopeless. With the way the world works now and the prevalence and efficiency of technology, there is no reason anyone experiencing these life altering situations needs to figure out how to do it on their own. Adaptation is born out of collaboration of people in a similar situation overcoming similar problems.
This is the idea behind SPINALpedia, our new video sharing resource that harnesses technology to ensure that our community can establish a new paradigm, a new standard for life with paralysis. People living productive, healthy lives with paralysis need not be an anomaly, nor should people feel their life is over. There is a way to make things work in new ways, to overcome the challenges, and together, we will create a living manual for life with altered mobility. The time is now, it comes down to us!