Unsurprisingly, this post has been the hardest one to write out of my series reflecting on 20 years since bacterial meningitis so far.
Meningitis has taken everything from me, at one point or another. To try to put a frame of reference on the devastation this disease has brought to my life over 20 years feels nearly impossible.
I face challenges resulting from surviving bacterial meningitis every minute of every day. They are the hardest things to deal with on this journey, but also my most motivating reasons to continue to advocate for meningitis prevention. It’s become the fuel for my fire to help protect others.
What I have gone through, no one deserves. It has always felt better for me to work towards helping to protect others than to dwell on how hard things have become. It heals me to know someone won’t endure what I’ve gone through as a result of hearing my story. It brings me great hope, and shows me that there can be an end to this suffering someday.
I’ve had more than 20 surgeries. I have three spinal cord stimulators, eight screws and two titanium rods implanted in my spine. I’ve had organs shut down and removed. I’ve had to cut my hair, have gained weight, lost weight, and experienced many involuntary changes to my outward appearance over the years. What’s not always visible – the trauma, heartbreak, and loss are indescribable and are something I’m forced to reflect upon each day.
The pain is always present. This is why I’ve learned to live with it, to use it to my advantage as a way to help make this world a little bit brighter. It’s led me to work on myself through therapy, writing, and creativity. As a whole I feel healthier because of meningitis and the impact it has had on me, maybe not physically, but mentally, emotionally, and spiritually I do.
There are days when things become too difficult and you have to let some of your grief out. Sometimes it quietly sneaks up on you and other times it feels like it’s screaming in your face. You take each day by day, moment by moment, sometimes breath by breath.
One of the biggest challenges for me as an advocate that truly anyone can help with is to get this message to as many parents and young people as possible, and that message is the importance of prevention and protection from meningitis. The American Society for Meningitis Prevention has great information and resources you can print or even request to have mailed to you to share with your community. You can even simply share their website or this blog.
Meningitis may be rare but the potential consequences are too high. My life’s challenge is to help eliminate meningitis and protect others. Even one life lost is one too many.
I’m sharing posts reflecting on the impacts bacterial meningitis has made on my life for the next few weeks leading up to March 2, 2025, the 20th anniversary of my journey. For more information about bacterial meningitis talk to you or your child’s doctor, visit https://www.cdc.gov/meningitis/about/bacterial-meningitis.html and meningitisprevention.org.
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