I Lost My Legs to Meningitis, But You Don't Have To

Meningitis-

Over the past six months, many gay and bisexual men throughout Southern California have heard about “meningococcal disease,” also known as meningitis, for what may be the first time in their lives. They’ve seen billboards urging them to get vaccinated or even heard about some or all of the 22 cases that have occurred since March. Sadly, some of those 22 patients may have found out about this disease the same way I did: when they were diagnosed and fighting for their lives in a hospital bed.

I am an HIV-positive gay man and survivor of bacterial meningitis, so I know firsthand how important it is that other gay and bisexual men take every step to protect themselves and their loved ones from this devastating disease, which can be spread through close contact — coughing or kissing — or lengthy contact, especially among people living in the same household.

On January 25, 2015, I was enjoying a warm Southern California day at the beach with my partner, Sam, and our French bulldog, Charlotte. I remember calling my mom to (lightly) boast about how good it felt to be in shorts in the middle of winter while she was home in our native Washington State, keeping a fire going and a snow shovel handy. When we finished our call, I looked at my feet and wiggled my toes in the sand for what I didn’t know would be the last time.

As I sat up, I began to feel ill. At first, I thought it was the flu or maybe even something I had eaten earlier. My partner and I went home so I could get some rest. Even though I could feel myself getting weaker and weaker, it wasn’t until I noticed a dime-size purplish spot on my leg that I began to think this wasn’t ordinary flu.

Sam rushed me to the hospital, and in the waiting room, I watched as more and more purple rash spots appeared on my skin right before my eyes. I showed the receptionist my new breakouts, and I was taken to see the doctors. They immediately hooked me up to multiple IVs and told me I’d have to stay in the hospital for a while. Soon afterward, I was diagnosed with meningococcal disease.

I spent the next two months in the hospital, with the functions of many major organs, including my kidneys and lungs, supported by machines. Luckily, I always had family or friends by my side, something I will never lose sight of.  It wasn’t until weeks after my diagnosis that I learned just how close I had come to dying — a nurse remarked on how much my condition had improved, especially considering that she didn’t expect me to live after the first night.

As a result of the infection, I had both of my legs amputated and now use prosthetic legs. The first time I tried to walk in them, I felt like a newborn horse; I’ve come a long way since. Not only can I maintain my active lifestyle — going to the gym, going hiking, and more — but also I’m a whole four inches taller.

In some ways I am lucky: While up to 19 percent of survivors end up with permanent disabilities, including hearing loss, brain damage, and limb amputations, 10 percent to 15 percent of those infected will die. In the current SoCal outbreak, two of the 22 infected people have died. As an advocate for the National Meningitis Association, I’ve met both other survivors of this disease and parents who lost their children because they didn’t know it was preventable by vaccine. 

Despite stories like mine and wide availability of vaccines against the four most common strains of meningitis (A, C, W, and Y), awareness of the disease remains low among gay and bisexual men. This outbreak in Southern California is the third recent outbreak of meningococcal disease among gay and bisexual men. In April of this year there were nine cases in Chicago, and in December 2014 there were 22 cases and seven deaths in New York City.

This disease is fast-moving and often initially misdiagnosed as the flu. In less than a day, I went from enjoying the sun on a California beach to fighting for my life in a hospital bed. This is why the California Department of Public Health recommends that all gay and bi men in Los Angeles, Orange, and San Diego counties receive the MenACWY vaccine as soon as possible.

After my experience, I worried that I had contracted meningitis because I am HIV-positive. While there isn’t evidence that this is why I in particular contracted the disease, the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices has voted to recommend that all HIV-positive people routinely receive the MenACWY vaccine because those with HIV have a five- to 24-fold increased risk of contracting the disease.

In addition to the MenACWY vaccine, there are also vaccines available against a fifth strain of meningitis, the strain that I survived: serogroup B. While serogroup B hasn’t been a part of the current outbreak, it is the strain that has caused the most recent outbreaks on college campuses. That’s why I encourage everyone to ask their doctors about the MenB vaccine — especially young adults and adolescents, who are at higher risk.

Other than getting vaccinated, the most important thing you can do to protect yourself against meningitis is to know the symptoms. While some symptoms, like headache, fevers, or vomiting, aren’t specific to meningitis, others, like stiff neck, sensitivity to light, and the pin-size purple rash, are reasons to see a doctor as soon as possible.

My experience, from learning to walk again to witnessing the resilience of other survivors or people with disabilities, has taught me to be adaptive and resilient. But this resilience and adaptability are also very much a part of our LGBT community. This is not the first grave health concern that our community has faced, but it is one that we already have the resources to prevent. 

Click here for more information on the meningitis vaccine.

DELL MILLER is an activist who works with the National Meningitis Association. Follow NMA on Twitter @NMATweets.

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