Hello, my name is Aaron Rooks, and I am a U.S. Marine Corps veteran and a survivor of bacterial meningitis.
I was hospitalized for about three weeks between April and May 2024 at the Joseph Maxwell Cleland Atlanta VA Medical Center and Emory University Hospital Midtown in Atlanta with a complicated case of bacterial meningitis, in addition to cerebritis, empyema, pneumocephalus, edema, extra-axial collection/abscess, right acute otitis media, right mastoiditis, osteomyelitis, sepsis, and non-occlusive sigmoid and transverse sinus thrombosis. I spent about five days in a neurointensive care unit and received IV antibiotics at home for about nine weeks after leaving the hospital before the infection and abscess resolved. Unfortunately, I have been unable to return to work due to extensive post-meningitis sequelae.
People often ask, “How did you get it?” At first, I had absolutely no idea. One day I was outside doing yard work, and the next thing I knew, I was on my proverbial deathbed. The only concern was that our whole family was sick off and on throughout the fall of 2023 and into the spring of 2024. We had sinus infections, colds, etc., but nothing serious.
According to doctors, a tegmen defect in the right temporal bone of my skull was likely responsible for an increased risk of cerebrospinal fluid spread of what would have otherwise been a trivial middle ear issue. My understanding is that the tegmen defect allowed the infection to spread from my middle ear to my brain and mastoid. I am currently awaiting neurosurgery to repair the defect to reduce the risk of subsequent episodes or the development of an encephalocele.
My experience with bacterial meningitis was swift and severe. I was initially seen at the Atlanta VAMC on April 16, 2024, at approximately 12:51 a.m., for fever, chills, body aches, and cough, which started three days before, and right ear pain, pressure, and discharge, which began two days prior. I was diagnosed with right acute otitis media and right otitis media with effusion before receiving antibiotics and being discharged at approximately 1:48 a.m. Fastest ER visit ever, right?
My condition quickly worsened, though. I began feeling the worst headache ever; I felt nauseous; my hands felt really cold; I felt confused and disoriented, dropping cups of apple sauce repeatedly and putting my coat on inside out. So we returned to the ER at approximately 10:38 p.m., on April 16, 2024, and I was admitted to the hospital the following morning based on a diagnosis of meningitis/cerebritis with pneumocephalus.
I felt some of the worst pain in my life during the first couple of days in the hospital and seriously contemplated my mortality for the first time. I thought there was a good chance I would not see my kids again, so much so that I called my oldest brother, John Miller, and told him what was going on, apologized for not staying in touch more over the years, and thanked him for taking me to see an Atlanta Thrashers hockey game when I was a young. I was unable to speak with him for long due to the pain, but I wanted my last conversation with John to be a positive one because I was counting on him to look after my family after I died that night.
I was fully prepared to die, but I survived. Nonetheless, I have mixed feelings as a survivor of bacterial meningitis.
On one hand, I am thankful to be alive. I am thankful for the team of doctors, nurses, and healthcare professionals who cared for me over three weeks and beyond. I am thankful for my wife, Pamela Rooks, who ensured that I received the care I needed and has taken care of me every step of the way. I am thankful for my mother, Kathy Rooks, who has ensured that my family and I have a roof over our heads. I am thankful for my aunts - Sandra Dunford, Henrietta Rigsby, and Donna Jones - and all my extended family and friends, including my neighbours, Hobbie Eckes, Lori Harriston, and their families, who have pitched in and supported us. Most of all, I am thankful for God giving me more time on this Earth and answering each of my prayers.
On the other hand, I have learned that bacterial meningitis can result in many long-lasting, debilitating consequences for survivors and their families. As of this writing, I feel like some parts of me died that day and may never return. Only time will tell. I would be lying if I said that I am not struggling. I am having a really tough time figuring out how to function as this new person post-meningitis.
Bacterial meningitis, and the plethora of complications that came with it, have left me disabled and a mere shell of my former self. I was once optimistic that life would return to normal after the infection disappeared, and that I would be back to my old self. Alas, that has not been the case.
Since the infection and abscess resolved, I have continued to struggle with chronic headaches (migraine and tension headache), hearing problems, photophobia/photosensitivity, sound sensitivity, communication difficulties, concentration difficulties, chronic fatigue, coordination difficulties, memory loss, depression, and anxiety. My neurologist has suggested that encephalitis may be part of the problem. Regardless of why, one thing is clear: I am not my old self.
In addition to an unresolved CSF leak, I have been diagnosed with hyperacusis of the right ear, conductive hearing loss of the right ear with restricted hearing of the left ear, and sensorineural hearing loss of the left ear with restricted hearing of the right ear. To sum it all up, I have super-sensitive hearing and difficulty understanding what people say, as unusual as that may sound. When my dogs bark, when a lawn mower rides by, and when music plays, the sound hurts, so I have to wear noise-canceling headphones a lot. And when I am talking to someone, if they are not facing me, I struggle to understand what they are saying. However, if they are talking too loud, the sound hurts, and this leads to frustration for both parties.
While minor improvements have come over the past five months since I returned home from the hospital, the difference between pre-and post-meningitis remains night and day. I have repeatedly asked, why did this have to happen to me? What did I do to deserve this? Why does my family deserve this?
Imagine enjoying time with family and friends, only for an infection to leave you constantly in a state of debilitation, prostration, anxiety, and depression, unable to see those family members and friends very often because you are either avoiding light and sound or dealing with its painful consequences.
Imagine investing your heart and soul toward six years of higher education and a career of 17 years, only for an infection to crush your ability to harness the knowledge, skills, and abilities you acquired and prevent you from working and supporting yourself and your family.
Imagine watching your family struggle, emotionally and financially, every day. Meanwhile, you struggle to regain what you have lost: your ability to see and hear correctly; your ability to communicate and concentrate normally; your ability to remember details over minutes and seconds; your ability to perform basic human functions without experiencing overwhelming fatigue; your ability to move without losing your balance or feeling pain and pressure in your head; your ability to feel confidence and self-worth.
I have turned to Facebook to stay connected with family and friends throughout this experience, but it has been a double-edged sword. Seeing everyone living happy lives, doing the things I once enjoyed, things my family is unable to experience due to financial and emotional challenges, often just serves as a reminder of the hand I was dealt and the consequences my family suffers as a result. I have shared some positive posts over the last couple of months, but they were sugar-coated by oxycodone. The truth is, every night I go to sleep feels like another Hail Mary, a prayer to God in hopes that my family and I will make it through another day.
As I continue navigating this new reality, I realize that survival is just the first step in a much longer journey. Every day is a new challenge: some days, I feel like I am fighting to reclaim my life, and on others, I am simply trying to get through the day. But through it all, I am reminded of the importance of awareness. Meningitis does not discriminate, and its effects can be swift and devastating. It is crucial to recognize the symptoms early and seek medical attention quickly.
I also hope that by sharing my story, I can shed light on the realities of life after meningitis: not just for me, but for survivors everywhere. We face a new set of battles that many do not see, and we need the support and understanding of those around us.
So, on this World Meningitis Day, I urge everyone to learn the signs and symptoms of this dangerous disease. Early detection could save a life. And to fellow survivors - whether you are struggling, thriving, or somewhere in between - I want you to know that you are not alone in this fight. Together, we can raise awareness, provide support, and work toward a future where fewer families endure the same challenges.
Thank you for reading my story. Please share.