by Amy Aiken
Today is World Meningitis Day, but in my world, every day is World Meningitis Day. When I wake up every morning, I am reminded at first thought by the pills that I have to take in order to manage my kidney transplant. When I get out of bed, I am reminded by the wheelchair that I have to hop into and use to roll myself from my bedroom to my restroom. I use the palms of my hands to perform the entire function of brushing my teeth. And when it is time, I have to put on two prosthetic legs in order to get on with my day. Amy Aiken has over 20 years of experience working in retail management, sales, and customer service. She holds a B.F.A. in Digital Photographic Imaging from Texas State University. As a survivor of Bacterial Meningitis, Amy now works in the customer service department at Abilitee Adaptive Wear where she helps to bridge the gap between the needs of the disabled community and our talented team of designers. Outside of work, you can find her speaking in support of life-saving vaccines in government and media settings, rocking out in the Austin music scene, or cuddling up with her dog Stella.
On October 25th, 2011, I came down with symptoms that were consistent with the flu: a terrible headache, fever, chills, and an overall sense of feeling ill and incredibly fatigued. I called out from work, called my primary care doctor, and went in to visit him the same day. He agreed with me, diagnosed me with the flu, sent me home, and told me to “sleep it off.” Well, that’s exactly what I did until my symptoms worsened. I woke up somewhere around 2 am needing to use the restroom, but I became extremely alarmed when I saw spots everywhere as I looked around my apartment. My eyesight was starting to become affected, and it was at that point that I called 911.
My life changed forever on that day. I was later diagnosed with Meningococcal Disease, or Bacterial Meningitis. I spent almost 9 months in the hospital, and over 2 years in outpatient Physical and Occupational Rehab because of it. In addition, I lost my kidneys, both of my legs below the knees, and the majority of all of my fingers to this deadly infectious disease. I also ended up with extensive damage to my lungs, eyes, and hearing that have been correlated back to the original meningitis illness. Later I found out that it could have all been prevented with the simple act of having a needle inserted into my arm to deliver me the life-saving vaccine that I needed.
With all of this being said, I am considered one of the lucky because a lot of people lose their lives to this devastating disease. It more often strikes teens and college kids, those in the prime of their lives, but it can also strike anyone at any age.
Does that last sentence sound familiar? It could be because of the fact that at the moment we are facing a global pandemic claiming lives worldwide. To me personally, it’s been odd, at times lonely, at times scary, but most of all, shocking to watch. At first I didn’t know what advice or hope I could give, and then I had to reflect. What did I do after contracting meningitis? What should anyone do after contracting and then surviving an infectious disease? So, here are a few tips I came up with.
- Fight the physical fight, and give it everything you’ve got.
- Fight the mental fight and the recovery, which can sometimes be harder than the physical fight. (When I contracted Bacterial meningitis, it was months later before I was actually out of a coma and able to wrap my head around what illness I was even fighting.)
- Find a new normal. What perspective on life you held before will not be the same perspective that you will have after fighting a life-threatening infectious disease.
- Find survivors, a community that can relate to your experiences and what you have been through.
- Get vaccinated (if possible, when or if one is available)
The fourth step for me was what helped and healed the most. Finding other women who had survived and who even ended up with the same chronic ailments as I became my lifeline to knowing that I wasn’t alone. My ‘meningitis twins’ I call them who also have lost their legs, have affected hands, and have had kidney failure turned to kidney transplants.
What I know most of all is that, we will not be the same nation, or even the same planet after this is all over. And we, the meningitis survivors who have suffered through the almost insufferable, will be there on the other side with you because our patience is unyielding.