Watching My Type 1 Husband Seize, Hallucinate and Not Recognize Me
One year ago today I was confronted by a side of Type 1 Diabetes I had never seen before and pray to never see again. It took over my husband’s body, forcing out a person that not only couldn’t recognize me but was fearful of me as well. I became an intruder in his eyes, which may hurt more than anything else. Although 365 days have passed, it seems like only one. This is the side of that day he can’t remember and wishes I didn’t have to either.
Two hours after my husband went to sleep, I felt a jostling next to me but assumed it was just him kicking around as usual. Shortly after and still thoroughly asleep, I heard a strange cracking noise which I still haven’t definitely identified. Kev believes it was him eating sugar tabs, but its similarity to the jaw cracking noise I heard a bit later makes us wonder. Either way, I decided to check on him, so I turned on the light on my bedside table and turned to him. He was covered in sweat and unresponsive. I tried to get him to talk and yelled his name, but nothing. I told him to stay there and darted down the stairs to the kitchen, grabbing his tester and bottle of sugar tabs from the counter, juice boxes from the fridge, and the glucagon shot from my purse.
Arms full, I raced back upstairs to see him seizing in bed. I grabbed my cellphone from my charger and called 911. The man on the phone was calm, and I immediately recited my address and told him that my husband was a Type 1 diabetic. I informed him that he was having seizures and was asked my address again. It was around this time that I began to lose my composure. They were asking me my address again?! Ahhhhhhhhhhhhhh, I want them to be on the road already was all that was going through my head. It was then that our lack of knowledge came back to bite us.
He was flailing around so much I couldn’t even begin to piece together a way to test him in my head. Considering he has never had an issue with highs, I was assuming he was low but in the back of my head I still questioned it. I loaded up the glucagon shot and told the 911 operator, who told me they were on their way but I second guessed myself. In my head, if I tried to shoot him during the seizures, the needle would break off in his leg or something, and if I was wrong, this situation could go from bad to worse. No one had informed me that seizures occur in lows, not highs. I was only able to confirm this with his endocrinologist after the fact. Then a small miracle happened or so I thought.
He stopped shaking and looked me dead in the eyes as clear as day and said, “I’m all right.” I thought okay good, no shot needed anyway, he is coming to. (In hindsight, I should have just shot him in the leg at that point anyway.) I told the operator and within a second of the words coming out of my mouth, he was seizing again. I updated the calm man on the phone while I myself was completely losing it at this point. After a few more minutes of his body being tightly contorted in a way that seemed supernatural and a quick run to unlock the front door two stories down for the paramedics who were still on their way, he started to come out of it.
While this was a welcomed change from the seizures, it quickly turned worse in my eyes. He looked at me and screamed at that top of his lungs. In turn, he startled me and I screamed at the top of my lungs. He flew back across the bed to my side, looking petrified. He was screaming things like, “Who are you!?” and “Get out of here!” Suddenly, he came forward and at that point I ran, nearly tripping down the stairs to the front door. I popped his running shoes onto my bare feet and stepped out in the silence of the snowy morning, leaving the door ajar so I could hear if he was coming down the stairs. In my head, he was going to either come down to attack me or come down and lock the door, making it impossible for the emergency responders to get in when they arrived.
The snow was powdery and still coming down as I stood there in multicolored striped sleep shorts and an eggplant purple tank top. I heard some ambulance sirens which let some hope creep in, but that vanished along with the noise. It was silent. I didn’t hear a noise until I got interrupted by the 911 operator. They couldn’t find my home. Great! Don’t the ambulances have GPSs yet or what? I spot them on the hill adjacent to us and I’m hopping around waving my arms at them, telling the man on the phone that they need to come off the hill. They can’t see me and it is another while until they ultimately arrive. In the meantime, I am on the phone crying about how “here I am outside scared of him and he could be up there dying”, “I can’t believe this” and “seriously God, help me.” Then a cop car pulls up. “Thank you God, someone who can help me.”
I told him my husband is diabetic and that I was outside because he didn’t recognize me and I was scared of him. He asked his name and then asked me if Kevin had access to any weapons. I informed him that we had two guns in the bedroom closet, but that we keep them unloaded and I didn’t believe he was capable of loading them at the moment. He opened the garage door for the ambulance that still hadn’t arrived and then he began up the stairs. I followed him to the first floor and he said to stay. He went up the second set of stairs and I really couldn’t tell you what happened. I wasn’t there. I heard a noise that sounded like a slap and the cop calling out Kevin’s name, but beyond that I know nothing. I don’t know what caused the noise, I don’t know what state he was in upon arrival, etc. All I know is that a minute or two later the two paramedics had arrived at my door and were climbing the stairs up to me. I pointed them in the direction of the bedroom above and let them pass me by on the way up.
It wasn’t until a few minutes later that the cop told me I could come up and I peaked in from behind him. Their tester wasn’t registering a sugar and they asked me if he had any seizures. I told them yes. Where exactly that information got lost between the call center and the paramedics I will never know…so they knew he was low. They had him get down the few juice boxes nearby but it wasn’t enough. They asked for crackers and more juice, so I went downstairs to fetch some peanut butter crackers and an abnormally large glass of juice. After a lot of sugar being forced down, his head was still drooping but they were ready to transport him.
They decided he could walk down the stairs with their assistance, rather than attempt to maneuver the curves of our stairs with their portable gurney. They saw some sandals nearby and I offered to put socks on him. After grabbing some from the drawer and kneeling in front of my husband, I saw that his toes were blue. Not a hint of light blue, but blue blue. Soon, they had him on his feet and were trying to navigate their way down the stairs with my husband leaning on them all the way. The cop stayed upstairs with me, reassuring me that I did the right thing by leaving him there, as he has been attacked by a number of low diabetics who just weren’t themselves.
While my husband was apparently taking a quick pit stop on the first floor, I grabbed my phone and called my parents. They were out to breakfast nearby about ten minutes away, and all I said to them was something along the lines of, “I need you, please come now.” They said they would leave right away and later informed me they thought something had gone wrong with my cat because I was teary. The ambulance in the driveway gave them a clue, and the cop met them outside to fill them in before they made their way upstairs to me.
I was scrambling around, tossing on a hoodie, jumping into my jeans and trying to remember anything I may need. My husband’s wallet because it had his insurance card, his phone for his parent’s phone number, a jacket because it was snowing, etc. As soon as my mom saw me (mid jean jumping of course), she started to cry and came in to hug me. My dad kept calm as he always does. They helped me gather my things and soon the three of us were in their SUV on the way to the hospital. Before making it off our home’s street, I called Kev’s parents to let them know what happened and that I would keep them updated after I arrived at the hospital. They took it well and thanked me for calling. Beyond that point, Kevin seems to remember well but images from this day are burned into my brain. They aren’t going away and shake me often. I wouldn’t wish circumstances like these on anyone and hope you never have to experience anything like my snowy morning. Test often and take care!
My name is Kevin Lang and I am a Type 1 Diabetic who was diagnosed in May of 2004 at the age of 27. My last A1C was 6.0 in May 2015. I used to use daily shots of Lantus and Novolog to control my blood sugar until I switched to the MiniMed Paradigm Revel Insulin Pump in February 2011. To learn more about me, follow the about link in the menu bar.
Dear Trisha,
I stumbled upon your post and felt compelled to comment. I was diagnosed with T1D exactly one year + one day after you wrote of your ordeal, and reading about it reminded me of a traumatic experience of my own. When my first born son was 16 months old, he had a febrile seizure in my arms. When it stopped, he wasn’t breathing and turned ‘blue blue,’ as you say. Normally a calm person, I completely lost my mind. It is hard to describe the absolute terror of seeing someone you love in a life-threatening situation. My son was / is fine, but for years (years!) afterward I had terrible guilt about what I saw as my inadequate response, along with several panic attacks whenever he had a fever afterward. Looking back, I wish I had realized then how deeply affected I was by what happened and had sought out help to deal with it. Not doing so is one of my few regrets. I actually didn’t even understand I was having panic attacks or what they were until I saw someone else have one. I hope writing about your experience was cathartic. I am glad you have supportive family. Best of luck to you and your husband.
I saw this and knew I had to post. I’m a T1 diabetic myself and have been since my first birthday. I always worry what my future husband will have to go through with me; growing up, my mother’s been through hell and back with my diabetes. I’ve given her black eyes while screaming at her that I don’t know who she is, and I’ve flat out attacked her. I don’t know how she did it, but she never once fought back and just did her best to pin me down and feed me.
I completely understand what it’s like to have this happen, and be in Kevins role. So many times I’ve thought childhood friends and family were strangers, and I can remember parts of the incidents. I remember swearing on my life that my sister was a stranger, not a girl I grew up sleeping in the same room as. I’ve sworn my father was kidnapping me and my brother was poisoning me when he pinned me down to force some juice down my throat. But really, I don’t see these as the worst part. They’re a close second, but being paralysed is the worst.
I’ve had seizures where, I remembered everything. MY brain was totally there. But I could control my body. I was jerking and screaming and twitching, but I had no control over any of it. I was at my aunts house sleeping over, my dad was two blocks away. He ws there within sixty seconds of my aunt calling him and shot me with glucagon. My aunt was screaming and crying, holding me and begging me to wake up. I was already awake, but I couldn’t assure her I wasn’t dead. Eventually, I stopped moving and screaming. I was sitting there, still as a rock, taking short breaths and not even blinking. I was like that for nearly three minutes, before, after some painfully difficult fighting with my body, I was able to move my thumb. I poked her hard, making sure she felt my nail. She starting asking me things and I was slowly able to do more. I held her hand, then was able to mumble, then hugged her, then sat up on my own within five or six minutes. Come to find out I had had an ‘accident’ in my sleep, which was humiliating for a teenager. Knowing that I couldn’t do anything made the entire thing so much worse.
I’m glad Kevin turned out okay, and I hope that doesn’t happen to you again.