Feature Article: Q&A with Meningitis Survivor and Author Andy Marso

Andy Marso is a meningitis survivor and author. Recently, we were fortunate to have the opportunity to talk with him about his experience.

In your book, you said that having meningitis changed your life for the better. Can you elaborate on that?

It gave me this mission to prevent other people from going through what I went through. It gave me a great sense of purpose to not have others experience what I had, which was very traumatic and very painful and very real.

What was the most difficult part about your recovery?

The most difficult part was mentally accepting that the life I had previously was gone. I knew that I would get better physically only to some degree. My hands and my feet were not going to be the same. Fingers and toes weren’t going to grow back. My body changed in a very big way and my physical functionality changed as well. But (the hardest part) was accepting that life was never going to be as free and easy as it was before.

I knew I was going to have to work harder than everyone else just to do even the basic daily things in life. I went through the grieving process you would go through if you lost someone — the anger, the bargaining, depression, and getting to the final stage of acceptance. It wasn’t the physical challenges, which were plentiful of course, but it was having the emotional fortitude to accept that if I wanted to live independently and make something of my life, I was going to have to face those challenges head on. There wasn’t going to be a way to get around them. It was going to be hard work the rest of my life to adapt to everything, but I didn’t want to just give up. So accepting that was the most difficult part.

How were you able to accomplish that?

I’ve been to the Centers for Disease Control and Prevention (CDC) twice to testify in favor of a broader recommendation for the meningococcal B vaccine. That’s the kind (of meningococcal disease) I had. I’m personally passionate about getting broader coverage for that. I’ve spoken publicly about the need for college campuses to have their students vaccinated against meningococcal B. I went to the Missouri statehouse to testify there. I’ve been active in the policy realm and active within the community of survivors. I’m in the position where I can reach out and comfort and hopefully inspire a new crop of meningitis survivors who unfortunately contracted the disease, but fortunately lived through it, albeit with serious effects. I feel I can give them some sense of what’s possible for them even with the physical aftereffects.

Do you think the meningococcal B vaccine should be required before college attendance?

I think at this point we need it on college campuses and every student health center. It has to be available. My preference would be that the colleges require the meningococcal B vaccine the same as the quadrivalent meningococcal vaccine (ACYW-135). The B strain of the disease has the same awful effects — brain damage, lung damage, amputations, disabilities — it’s kind of nonsensical to require the quadrivalent vaccine, but leave meningococcal B vaccine unused. It’s in the best interest of universities to make sure students are vaccinated before they get to campus because you don’t want this bug on your campus.

An outbreak affects everyone, not just the victims, but everyone at the university — their families, employees. Once an outbreak occurs, then you have these hastily arranged, ad-hoc vaccine clinics and at that point, you’re in crisis management and not preventative medicine. Right now, my focus is making sure that at-risk university students are:

1. Aware that they are not fully protected with just the quadrivalent vaccine
2. Able to get the meningococcal B vaccine
3. Required to get the vaccine before coming to campus

What about your advocacy efforts has surprised you?

The way this illness seems to hit the best and the brightest. And maybe that’s just the sample size that I have been exposed to. But it just seems like the people and the families affected by this are … so supportive and caring, and it’s very hard for them to understand how they can lose a loved one within 24 hours.

I think what’s been the most impactful is when I started talking to families who have lost someone to this, and they all asked me the same question — how much pain were you in? And so I realized in a lot of cases (meningitis) hits so quickly that parents and loved ones aren’t able to get there to say goodbye. So they want some sort of insight as to what (their loved one) was going through. There is so much pain for those families behind that question and that’s the main reason I do what I do because I don’t ever want to be asked that question again. Of course I am happy to answer it to the best of my abilities because they deserve that. But that question — “How much pain were you in?” — it’s such an emotionally loaded question that I don’t want anyone else to ever have to experience.

Do you have any memorable moments from your time doing advocacy work?

I have moments like a couple of months after getting out of the hospital, we hosted a news conference. I was still bandaged from the surgeries I had. I said unequivocally colleges should make this shot mandatory. I remember feeling this very powerful sense that I was doing exactly what I was intended to be doing at that moment. That was really gratifying and one of the first public things I had done.

And then there are defeats. We had a bill to require the vaccine like the CDC recommendation indicates. I went to testify to the (Nebraska) legislature and the bill got filibustered. So there are moments when you feel like you failed. What more could you have done to make those people understand and change their minds? Every time I read about someone in the news who has come down with this thing, it feels like, in some sense, a personal failure. So that’s that bit of feeling like if I had done more, it wouldn’t have happened.

There are moments when you feel you could be doing more. Or there are moments when a law is passed that you know you’re on the right track. You know you’re doing good work, and eventually we’re going to get this thing wiped out.

What opportunities has your illness provided that you might not have had if you did not have meningococcal meningitis?

Too many to really enumerate. My life before was comfortable, but it didn’t have the same meaning or purpose that I have now because I survived the illness:

• The opportunity to stand in front of the CDC and tell my story
• The opportunity to go to (state legislatures in) Jefferson City, Missouri, and Lincoln, Nebraska
• The opportunity to speak at public health conferences in New York and Colorado
• The opportunity to be a real resource to people who are going through very difficult circumstances of their own — meningitis, burns, amputations

Those are very gratifying and those are all opportunities that I wouldn’t have if I didn’t go through that struggle. The struggle made me a stronger and better person. It made me more empathetic. It also gave me a platform to make sure other people don’t go through this, but also to show people who are going through this that there is a path out to the other side.

Additional resources

• Get Andy’s book Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better
  • Amazon
  • Barnes and Noble
• Follow Andy on Twitter