If you have followed my blog for a while, you will know that in September 2018 I suffered from a pretty devastating setback. I was homeschooling our three children, running my blog and real estate and working towards my third half marathon. I started to feel like I had a cold coming on, but as any mom does, I shrugged it off and kept going forwards.
September 1st was the day that turned everything upside down. I went from being a fully capable person to incapacitated. My husband recognized that I was acting abnormally and brought me to the ER. We arrived just in time for me to have three grand mal seizures.
In this picture, I was intubated, with EEG monitors checking my brain waves and mits on my hands so I would’t pull the tubes out of my throat. I don’t remember any of this. I’m very thankful for that I don’t remember this. The nurse that was with my husband actually encouraged him to take a picture, because often patients want to know what they looked like with all of the tubes and medical equipment attached to my body. But, it kept me alive for three days while I was in a medically induced coma, which stopped my seizures and stopped my brain from accruing further damage.
Not every picture worth showing is perfect. So many times we vie for that perfect Instagram photo, with the perfect background. However, that is not real life.
After 15 days in the hospital, I was released, but it was far from the end of my recovery journey.
Many people don’t know this part of the story. When I returned home I faced a lot of struggles.
Sudden movements were incredibly hard to process. My kids would run up to me and it scared me.
The sunlight outside “didn’t look right” for about 4 months. The shadows hitting the ground didn’t seem like they were in the right place, and I couldn’t figure out why.
The right side of my body didn’t want to move correctly for two months. When I walked or tried to run, or even tried to type, my right hand lagged in movement.
Reading out loud to my kids was excruciating. The words made sense to me, but when I tried to speak them, they came out wrong. I would search for words when I was speaking to friends and family, but I couldn’t find the words I was looking for.
When my husband and kids were putting up the Christmas tree and were listening to Christmas music, I forgot what State I was in for a few seconds. We were driving around to the mall listening to Christmas music, and I saw a pine tree, and I didn’t remember if we were in Arizona or Connecticut. My brain triggered memories, and I would have a few seconds that I didn’t know where I was.
Part of my doctors appointments were division and multiple math questions. I would not be able to figure them out. I would drill myself on math questions after that to prepare myself for the next appointment
All of these blips were just seconds and then I was able to reclaim myself and refocus where I was, but it was frustrating.
What happened in my brain
What caused this is still pretty unknown, but my doctors at Mayo believe that it was a brain infection or inflammation that caused the seizures which caused damage. The cause of the infection/inflammation is still unknown. Through all the searching of what caused the seizures, the doctors also found out that I have Sjorgens Syndrome. The doctors I have believe that there may be some connection between the two for me, but aren’t exactly sure.
With the seizures, the damage that was done to my brain caused all of these horrible symptoms. My seizures were located in the Temporal Lobe. The Temporal lobe is where the brain is involved in vision, memory, sensory, language, input, emotion and comprehension.
When I realized what I was experiencing was “normal”, it was oddly comforting. That, given the crap my brain went through, I was doing amazingly well. My doctors said that if had not been in the healthy condition that I had been in, I would have died.
Luckily, by January most of these symptoms subsided and I was able to speak at a conference about everything I went through. Yes, I got up in front of 200 people and spoke about my issues and how my planning had kept my business going while I was in a coma!
I was able to look at many of my brain scans and see where there were lesions in my brain back in September and how they had healed. The brain and body is truly amazing.
My learning lessons
I have always been fiercely independent. So much so that it was my Achille’s heel. No longer could I be as independent as I once was. I couldn’t drive, which was a huge slap in the face to the gal who wrote about all the fun places to go with kids. For the first few months, leaving the house by myself was a no go. I would have memory issues and it would be risky. So, I had to lean on others. And others were there to help me!
I also learned that I didn’t have to do everything myself. While I had always made friends quickly, and helped others, I could accept help. So hard for me to do, but it made me more humble. I took help from my husband, my parents, my inlaws, neighbors and everyone else. People were so excited to hear how far I had come.
I needed to slow down a bit as well. I don’t know how well I learned that lesson once I got my license back in September. But, I am picking things to do that make more sense to my family. I am also making sure that our family does things that is enjoyable and makes great memories. The time goes by so quickly.
I remember sitting down at Joann Fabrics one day with Dimples and my mom while we were waiting for her to get Fabric. I was feeling really woozy, and there were many elderly people staring at me because I was taking up a chair. On the outside, I looked like an absolutely healthy individual. On the inside, my head felt like it was shattering and I couldn’t explain what was going on. I learned about judging people’s appearances.
One other thing I learned was that memories can drive you batty! My memories from May 2018-October 2018 are very fuzzy. Some things I remember, and other things I cannot. I know I met some people, but I don’t remember how I know them. This is very unusual for me.
This journey has been quite a struggle, and I can tell you there have been times I have been angry at myself for not adapting and healing quicker. There may be lessons that I have not even encountered yet.
I know that having a great support team around me has been one of the reasons I have made it so far. I also am completely stubborn and when my first doctors in the hospital didn’t seem to understand my symptoms, I kept pressing on for answers. My husband, parents and inlaws all were very supportive with my pressing on for more answers. I kept doing research, even though my understanding sometimes felt blocked by my brain’s struggle to regain normalcy.
This past week was momentous for me, which is why I am writing this post. I got to drive a sports car and I ran six miles. Last year I couldn’t drive at all and I often wondered if I would ever get in the drivers’ seat again. And, as for running, adrenaline seemed to make my brain chemistry go out of whack. I would get nervous, and so I avoided running for quite some time, and it made me so sad.
But running 6 miles this weekend felt so amazing. It was not a fast six miles, but it was six amazing miles.
I’ve told my story to many people throughout the year. So many people have shared their stories of overcoming hard times too, and it has given me great strength. Every day that I wake up is another victory. My doctor believes that there is a good chance I can be medicine free in a few years. That would be a huge win. This whole experience may be just a crazy bump on the road. Another life lesson on resiliency.
But, until then, I will share my imperfect life. My imperfect, untouched photos with messy kids. And, I will encourage others to do the same. We are all on this road together. Every once in a while, we might get a photo together that is a little bit posed 🙂