When people have asked me how long I have had my disability I often find myself feeling bewildered and sort of in shock. What I have I was born with. Just like I was born with black hair and fair skin. It's just a part of me and who I am. Its simple to understand, right?
Unfortunately not all the time. We live in a world where everyone wants to be enlightened and yet we still have our eyes and ears closed to so many subjects. When it comes to disability many assume you have to be in a wheelchair in order to be considered disabled. Sadly we still struggle in our society with even accepting mental illness, depression, and anxiety as legitimately debilliating.
I was born into a family that did not have anyone that ever had a physical disability. But my mother noticed something was off with my walking because I ran instead of walked as a child. My mother began a crusade to finding out how she could help me until she had to pass that crusade to my father. Multiple testings and doctors later and I was eventually diagnosed with CMT, Charot-Marie-Tooth Disease. I ended up in the care of an amazing doctor named Dr. Alfred Spiro who was the head of Neurology at Albert Einstein Hospital for 34 years until his retirement.
CMT is a peripheral nerve disease that affects my limbs. Its creates extreme weakness and fatigue and depending on the type you have can lead you into a wheelchair permanently. I have been lucky. My struggle has been an incredible one and when I say incredible, I mean "worthy of being in a book" incredible. Its been tough, I won't lie. I have had three major surgeries on my feet and I wear plastic leg braces on a daily basis. As I age my disease ages with me so the days of clubbing and dancing until 4 in the morning are long gone. So is running and skipping but thats okay because I am still walking and standing on my two little crooked feet and I can't tell you how grateful I am to be able to do so.
When I starting blogging in 2011 and delved full time into the world of everything vintage, I struggled with my style and I struggled with my disability. I already had my three babies and I found myself lost in so many ways. Who was I now that I was a mother and how can I nurture myself in the midst of all this mommying? Which by the way, I love. I love being a wife and mother and its my biggest dream come true. But I knew I didn't want to lose myself and that I had more to give not only to myself but to others.
Blogging has lead me to that. My love of Old Hollywood and all things old and dusty has lead me to really embracing my creativity and doing things I never thought I would get to do. Blogging has given me endearing friendships and connections, it has lead me to try things I would be otherwise scared to do, and it has helped me become more confident. And I know that this is just the beginning.
Which leads me to sharing this special news segment filmed by CUNY-TV with all of you. They approached me in the Fall 2018 about interviewing me for a segment about Disability & Fashion. At first I was really hesitant about talking about my disability so openly but then I realized that if I don't take risks I won't grow. And when it comes to myself personally and my blog, growth is something that is very important to me. So I went for it with the support of my family and it was such a positive and uplifting experience. Something I will never forget and something that I now get to share with all of you.
I hope you enjoy seeing and hearing me share my thoughts about disability and fashion.
Amazing! You are such a inspiration, i i miss shoes too i just let go of my heels i have been looking at daily unable to wear for 10yrs.. well done you for sharing your story. X
ReplyDeleteThank you so much hun!! xox
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