‘I don’t know why your husband’s in pain, he has no meningitis.’ I’ll never forget when the nurse angrily said this to me when I told her my husband said his head feels like it’s on fire.’

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“‘I don’t know why your husband’s in pain, he has no Lyme’s disease, he has no meningitis.’

I’ll never forget when the nurse angrily said this to me when I told her my husband said the back of his head feels like it’s on fire, and requested something for the pain the night before he was transferred to a higher level hospital. Unfortunately when you are a 24-year-old man, there can be a stigma of someone seeking pain medicine. We had already been through hell, I was on day 3 of living at the hospital, my husband had already been through a spinal tap, multiple catheterizations and I’ve watched him be put in isolation and taken back out twice already. I was mentally exhausted and hungry for answers — little did I know this was just a small footprint in what was about to come. Meningitis was the first diagnosis, but they struggled to determine if it was viral or bacterial (hence the constant isolation changes). I was terrified to go home to our 2-year-old daughter, Ava – worried sick if it were bacterial I would pass it to her.

Husband and wife stand smiling outside log structure holding their daughter
Courtesy of Tara Wustner

His symptoms came out of nowhere. I remember the Saturday before we got a babysitter and went out drinking. We were both slightly hungover on Sunday and when I started to feel better he said to me, ‘wow, my headache just kicked up 3 notches.’ He laid around the rest of the day and I remember feeling irritated as I chased around our toddler. The next day I got Ava and I ready so I could go to work and as I walked out the door I saw his car in the driveway. At this point I was fuming that a) he didn’t go to work because of a hangover b) he already laid around after work the week before because of his allergies and c) he didn’t even ask if I needed help while I was getting Ava and me ready. I remember stomping out of the house saying something along the lines of, ‘if it’s that bad you need to go to an urgent care.’

I dropped Ava off to my parents who watch her while we work. As I drove to work, I relived the conversation in my head – something he told me stuck out to me as a red flag. While I was on my tangent, he had mentioned he felt like someone was kicking him in the base of the skull. At the time I  worked at a primary care office and my good friend who is one of the nurses had once told me that was a symptom of meningitis, and while never in my wildest dreams did I think that’s what he had, I still called him, apologized for going off, and told him I really think he needed to be seen today. At that point he told me his mom was picking him up and taking him to the hospital because he wasn’t able to pee either.

I checked into work and it wasn’t long before my boss gave me the ok to go down to the hospital to see how he was. When I got there they diagnosed him with a sinus infection. He had spiked a 102 fever and his toes were feeling numb too. I can’t remember what it was that led them to do the spinal tap -whether it was his labs, his symptoms or the CT of his head, but for whatever reason they did the spinal tap and thank God they did. That’s when they decided to admit him under the premise of meningitis.

The next couple days were frustrating. One second he’s on isolation and we are told it’s bacterial meningitis, and the next, there is talk of discharging him with a PICC line and teaching him how to catheterize himself because it’s viral meningitis. Thankfully the day I assisted Zach to the bathroom, his stepmom was visiting. I noticed as I walked him back to his bed his left foot sliding and lagging behind instead of him picking it up. I remember the nurses where I worked talking about a drop foot before, so I called my boss and she immediately said we had to get him to a higher-level hospital up the road. My mother in law went into action fast and before we knew it, we had the neurologist doing his assessment and ordering MRIs.

Around 6 p.m. that day I went home to take a quick shower and came back to find a doctor in the room quietly speaking to my in-laws. The results of the MRI came back and there were lesions all over his brain and spine. They transferred him that night to University of Maryland Medical Systems in Baltimore. When the neurologist came in and did his assessment on him the next morning, the numbness that was in his toes had already moved up his knees. Unfortunately the images were not very clear once they were transferred to their system so they wanted to order all new MRI’s. They put him in isolation because of the unclarity of his tests and had to do another spinal tap. I remember it being a long weekend – Labor Day weekend – so the results felt like they took a lifetime to come back. He was in and out of sleep and not comprehending questions. They asked so many questions – any recent travel, any swimming in lakes or any other bodies of water, any sickness, any vaccines – the only thing he had was allergies last week. Otherwise, he was perfectly healthy.

Man lays in hospital bed with wire up his nose and tube around his neck
Courtesy of Tara Wustner

The next day, his doctor came in to do another assessment and he noticed the paralysis Zach was experiencing had crept up to his chest. We stepped into the hall and he explained to me that Zach’s breathing was getting more labored. He warned me they may intubate him if it continues but that it would ultimately help his recovery because his body would be able to rest and not work so hard. He didn’t have a timeframe of when it would happen, but wanted to give me a heads up. That afternoon my boss and coworkers surprised me with a visit and took me to get something to eat. When I got back there were nurses and doctors running in his room, yelling ‘code blue!’ I wasn’t allowed in the room – they were intubating him. I felt like someone kicked me in the stomach. I was sobbing. His doctor had warned me it was a possibility, but I never thought it would happen the second I walked away. In that moment I vowed not to leave his side again until we saw this through.

That day he got transferred to the neuro ICU floor on a ventilator. He couldn’t even lift his thumb. They had the vent settings on high because he was exhausted from fighting the past week. I sat in the chair next to him and held his limp hand the rest of the day. At some point a different doctor asked me and my in-laws to come into a conference room. They told us Zach had a very long road to recovery. They couldn’t promise me a full recovery and they didn’t have a diagnosis yet – they were still ruling things out. He had also come down with pneumonia. I remember that doctor looking at me and telling me there may be some decisions that need to be made, and if I don’t sign off on them now, there may not be time to decide. It was best to get permission now rather than wait. I signed off on a PEG tube for his stomach, a tube to drain his chest and I signed that I DO want any life saving measures for my husband. They warned me that this road was going to be long, that with every step forward there would be 3 back, and boy they didn’t disappoint. The doctors urged me to go home, to get some rest. The last thing they wanted was for me to be at the brink of exhaustion and wind up sick. I wanted to scream at the thought of leaving him. I told them there was no way I was leaving him. What if something happened and I couldn’t say goodbye? What if he woke up and I wasn’t there?

The next 3 weeks Zach remained in ICU. There wasn’t a bed for me but they did have a chair that I slept in. I held his hand, sang songs to him, prayed over him. I would squeeze his hand 3 squeezes at a time: ‘I (one squeeze) love (2nd squeeze) you (3rd squeeze),’ hoping that even in his unconsciousness he could feel I was there. I wanted him to fight for me, to fight for Ava and make his way back to us. I tell you what – there is no way of knowing the true depths of your love for someone until you’re faced with the reality that you may never get a single day with them again.

Prior to this, Zach and I’s marriage wasn’t perfect. In fact, in the months leading up to this it seemed like we either argued about trivial things or barely acknowledged each other at all. We really struggled in the communication department – I took every criticism or suggestion the wrong way and he just wouldn’t communicate at all. But now, none of that mattered. I just wanted him to wake up, I wanted him to talk to me and I wanted to take him home to our daughter. I wanted another chance.

Husband and wife stand outside at night smiling in formal attire
Courtesy of Tara Wustner

I hadn’t taken our daughter to see him. She was only 2, he was in a coma, there were tubes coming out of everywhere on him. While it killed me to not be with her, I knew she was in the best of hands and I knew I needed to be with Zach. In the short moments he was awake I would try to show him pictures of her or videos, but he would just cry and turn away. He missed her so much, it broke my heart.

His 2nd week in ICU they started to get control of his fever, and he started coming to a bit – he gave a thumbs up and he even moved his toes! I was ecstatic. I called his friends and told them to come visit -that I was sure he was up for visitors. By the time they got there, Zach’s eyes were crossing, his gaze was not following anyone and he was no longer responsive. I was devastated – we were back to square one. The nurses and doctors rushed in,  they were screaming his name, pinching him, trying to get him to respond (I’m not sure if you’ve ever seen a neuro exam but they sometimes need to be rough.) They basically wanted to make him mad to see if they got a response – it’s how they could tell if he was tired or if something was wrong. They ordered more MRIs which showed more lesions – his brain and spine were now covered. I felt like this nightmare would never end. I walked down the hall to the chapel that night. I got on my knees and prayed. I begged God to bring him back to us. I couldn’t NOT have him back. We’ve fought for two weeks straight, there HAS to be a happy ending. How could I go back to my daughter without him? What would I say?

They tried multiple different antibiotics, steroids, IV immunoglobulin therapy but nothing helped. And what did help only helped for a short time then he nosedived back into his coma. The doctors decided they were going to try steroids again but this time a higher dose. The last time he had them were at the other hospital so this time they wanted to do 1,000 mg and taper off for 4 months. The doctor said there was a chance he would go into renal failure but that we were otherwise out of options, so I consented.

24 hours later, he woke up. He slowly moved his thumb, then his toes, then his foot. He was still on the ventilator, but he was able to communicate with me by pen and paper after a few days. I asked him if he remembered any of his dreams. He told me he had flashbacks of memories – of Ava, me, his family. Zach was incredibly emotional the next few days – a mix between the high steroids and everything he had been through. He stayed in ICU for the next week, he ended up needing a tracheostomy because he still wasn’t quite strong enough to breathe on his own.

Once they saw improvement with the steroids we were finally given a diagnosis – Acute Disseminated Encephalomyelitis, a rare autoimmune disease. Apparently those allergies he had previously did cause a sinus infection. His body attacked the infection but then went haywire and started attacking his brain and spine, which caused him the fever, headache, urine retention, paralysis and coma. He was more likely to hit the lottery – we always teased he got the wrong end of the deal!

The day before his 25th birthday he was transferred out of the hospital to a rehab center where he would regain his strength. He was in a wheelchair and still was not able to speak but he could write. I decided to surprise him for his birthday and I brought our daughter up to visit him. I prepped her on the way up that daddy had been sick so he has something in his neck but not to be surprised if he can’t talk. I was really worried about how she would react – he had probably lost 50 lbs, was in a wheelchair, had a hole in his neck – it was a lot to take in. However, she walked into his room singing Happy birthday, and came right up to him and hugged him. Do you know what he did?! He spoke his first words in a month. They were, ‘thank you Ava’ – there wasn’t a dry eye in the house.

Man with Acute Disseminated Encephalomyelitis smiles beside his daughter as his wife stands beside him
Courtesy of Tara Wustner

Zach worked hard to get back home to us. He only had to stay in rehab for a week and then continued outpatient therapy for the next 3 months. By January he had gained all the weight back he had lost (and then some, because of the steroids). When he followed up in January his doctor was amazed! They thought it would take him at least 6 months to a year to be back to himself – and he was still unsure about any permanent side effects. He was in complete disbelief – and when they did the repeat MRI, there were no new lesions, only the old healing ones.

This experience, to some may be a living nightmare. And parts of it definitely were.  But rather than taking the negative out of it, and thinking ‘why me?,’ I see it as a blessing. Yes there was pain and suffering, but because of this, Zach and I were both at the brink of losing everything, yet we got to come back. We got to truly feel what it would be like without the other, to know that heartache and know that we didn’t want to live a single day like that. I’m not going to say we never argue but it’s rare these days. We have learned not to sweat the small stuff and we have been able to fully lean on each other in a way that we hadn’t before. Our communication skills have taken a complete 180 – I am able to take constructive criticism and he actually opens up.

Husband with Acute Disseminated Encephalomyelitis smiles holding wife from behind in woods for photoshoot
Costola Photography

We have gone on to have 2 more children, and Zach amazingly has zero lingering symptoms and he doesn’t take that for granted. He never let this set back define him. In fact he used this as a tool to make him better – he’s an amazing employee, one of the hardest working men I know. He’s an engaged father and an incredible husband. There isn’t a day that goes by where we don’t realize how lucky we are. And we thank God for our blessing hidden in a storm. We know how quickly things can change in the blink of an eye and we both have become better people because of this. Love What Matters.”

Father with Acute Disseminated Encephalomyelitis stands beside wife who is holding their youngest and two daughters
Costola Photography

This story was submitted to Love What Matters by Tara Wustner, 31, of Mechanicsville, Maryland. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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