This is a guest post from Brittany Martin. Brittany is a co-founder of SPINALpedia.
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, but once I learned what paralysis
really meant that image was shattered.
Having lost my only brother in the accident, I was left to
figure a lot of it out on my own. I remember cleaning the screws from the halo
bolted into my dad’s skull. 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.
My dad and step-mom were transitioning too—learning the ins and
outs of life with paralysis. My step-mom connected with other spouses of
quadriplegics, and my dad toiled daily in all kinds of therapy. One day he was
struggling with a Velcro sleeve to hold an eating utensil, when another
quadriplegic rolled up and said simply, “try this.” My dad watched him weave
the fork through his immobile fingers, and it is how my dad has eaten ever
since.
I watched these things happen and saw how the power of
connection and mentoring made such a difference in our lives and how much it
expedited the adaptation process. However, I began to wonder, what would have
happened if we lived far away from a big city? What if there were no mentoring
programs or no one with similar mobility for my dad? I quickly came to realize how
many people weren’t as lucky as we were, and I couldn’t accept that. Something
needed to bring the entire community together—that something is now SPINALpedia!
SPINALpedia is a growing online community of people affected by
paralysis—those paralyzed as well as the able-bodied supporters--- who share
their experiences to help others learn to adapt their lives more quickly and
realize their potential. Searches are efficient—members specify details of
their mobility and situation to filter relevant videos and members. Whether
you’re a paraplegic aiming to transfer in and out of your car or a ventilator
dependent quadriplegic hoping to use a computer again, you can filter content
and find exactly what you are looking for. No more sorting through millions of
YouTube videos and no more reading pages of text-based information which may or
may not be useful. You can even search by your relation to paralysis, helping
spouses find other spouses, parents find other parents, and friends find other
friends. We have created a living, breathing, dynamic manual of life affected
by paralysis, completely customizable to your needs.
Our mission is to give people the tools they need to redefine
their lives and to free up precious time. As we help more people cut the number
of years it takes to learn certain tasks and reduce the number of people
unaware of their potential, we will slowly change the negative, condescending
perceptions of paralysis, as more and more people are out, active and happy in
society.
We don’t have a say in the challenges we face in our lives, but
we do have a say in how we move forward. Join SPINALpedia, learn from others,
share your own triumphs and together we will redefine life in a wheelchair.
3 comments:
What a blessing to have a resource like this! You guys should promote this at abilitiesexpo! Abilitiesexpo.com
Great blog! We are one of those people who live far away from a big city. We live in rural NW Oklahoma and we felt alone for many yrs. Oklahoma is not known for it's work in the disability field. Thanks for all you do.
it's definitely a goal of ours! :) still trying to get our feet under us and grow our community, so feel free to share far and wide!
thanks for your comment, i'm glad you like what we're doing.
take care, britt
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