This month’s Texas Strong Woman of the Month is my very brave second cousin–meningitis survivor and multiple limb amputee Amy Aiken.
Meet Amy Aiken
Amy Aiken grew up in San Marcos and is now my neighbor near Austin. She works as a communications specialist for a major department store but spends her spare time pursuing her love of art, music, and the central Texas outdoors and passionately advocating to protect public health.
Texas Strong Woman of the Month
Favorite title(s) for yourself
It’s a little hard to describe myself, but what I hear most from friends and others are “inspiring” and titles such as “fighter,” “miracle,” “warrior” and, above all, “survivor.”
Your toughest lesson or challenge
I overcame death against all odds by beating the most severe form of bacterial meningitis/meningococcal disease at the age of 29. I spent over five months in an ICU burn unit and almost eight months in the hospital, total. Because of bacterial meningitis, I lost both of my legs below the knees, had parts of all ten of my fingers amputated, and suffered complete kidney failure.
Learning how to walk again on two prosthetic legs was the hardest thing I’ve ever had to do.
I was in a wheelchair for the first year and a half after becoming sick, because my legs were still healing. Then it was a slow-going process beginning with just balancing. Next, I walked in the parallel bars, then moved to a walker, then used a cane, and finally walked independently without an assisting device. Because I now have ‘digits’ instead of fingers, I also had to re-learn how to do everything all over again like a child–from brushing my teeth to feeding myself to driving.
Lastly, what was just as hard was learning to live with, accept, and like my new physical appearance. Most women simply struggle with their weight.
My struggle was learning to love myself again but with a body of scars and missing limbs.
However, today I can say that I am working, driving, frequenting the gym, kayaking, going to concerts and festivals, doing volunteer work, and even dating! I’m back to my normal life!
Your proudest accomplishment
My proudest accomplishment is giving my testimony about what I and my family went through during my illness. I spoke to a top panel/round table of doctors, scientists, and researchers about meningococcal disease of the ‘B strain’ form. They used my testimony to create and produce an ‘impact report’ published by the National Meningitis Association.
This publication was passed on to the Advisory Committee on Immunization Practices, who then passed it on to the Centers for Disease Control. Now, just this year, there are new recommendations for vaccination against the ‘B strain’ form of bacterial meningitis. The current vaccination that most states already require or recommend only covers strains A,C,W, and Y. However, families can now go to their pediatricians and ask for the new FDA-approved ‘B strain’ vaccines. Americans can now be vaccinated against all strains of bacterial meningitis.
I was proud to be a part of this process. My new goal is to have this vaccine become state-mandated instead of just recommended.
Your role models or mentors
My role model is Amy Purdy, best known for being the runner-up on Season 18 of Dancing with the Stars. She is also a survivor of bacterial meningitis, a snowboarding bronze medal-winning paralympian, a best-selling author, a motivational speaker, an actress and model and an inspiration to amputees everywhere.
My mentor has definitely been Jamie Schanbaum, a local Austinite and bacterial meningitis survivor, a paralympian in cycling (she won gold!), and a strong, active advocate against the disease.
Jamie came to see me in the hospital many times and helped me in countless ways. She told me what to expect and how to do things differently as an amputee. I would have been so lost without Jamie. She helped coach me through the worst experience of my life. Even though Jamie is younger than me, she is definitely wise beyond her years. Google her! She is awesome!
Your best advice for newbies
How about just some general advice!?
Find a mentor: Find someone who has experience and has been in your shoes before.
Find your inspiration(s): Find what drives you. Live each day to the fullest, because you never know what life is gonna throw at you. Set goals and do everything in your power to accomplish them. Right now, I’m working on getting running legs!
Plan and prepare for your future: It’s great to “live in the now,” but you also need to be thinking about the road ahead. And you will never get there, if you never begin.
How you’re building community
Currently, I am an advocate for the National Meningitis Association.
I give media interviews, and I tell my story to anyone who inquires. Or sometimes I just tell strangers my story! I encourage so many people to get vaccinated against all strains of bacterial meningitis and to keep current with all of their vaccinations. It’s important!
Health is always on my mind.
I also gave a lecture on meningoccocal disease to a large group of pre-med students at Texas State University last year. I try to do volunteer work and participate or even help organize fundraisers whenever possible. And I love helping causes that relate to children, health, and of course, meningitis prevention.
I also regularly attend the St. David’s Medical Center Amputee Support Group. It is a great social group where we are able to share advice with each other and offer guidance to brand new amputees. St. David’s has all kinds of support groups, and I would recommend any of them to those in need!
Quote or verse you live by
My motto is literally tattooed on my arm:
And we can find new ways of living.
It is a song lyric. That is exactly what happened to me. I, in all ways, had to find a new way of life. Your life can change forever in one moment; I’m proof of it.
Favorite nonprofits you support
My favorite organizations to support are the National Meningitis Association, United Way for Greater Austin, 50 Legs, the Amputee Coalition and the Challenged Athletes Foundation.
P.S. April 24 is World Meningitis Awareness Day!