December 21, 2015 was a horrible early morning. One of the worst I can remember. I was startled awake from the dreaded sound of Brian starting a seizure. I quickly switched the lamp on and turned to him. I did my best to turn him on his side and keep him on the bed as his body aggressively jerked and convulsed. There is a sickening feeling experiencing this with him, but also, not with him. Alone. He was not aware or in any sense of the word “there” with me. His body finally settled down. I waited watching him, checking him, and making sure he was ok. There was blood covering his pillow and throw up. He had peed himself. He could not be woken. After about an hour I turned the lights out and tried to settle back to sleep. It wasn’t long, maybe a few minutes, and it started again. “Oh NO!” I cried as I turned the lamp back on in turbo speed and tended to him again. My heart ached watching him again. He had never had two in a row. Worry FILLED me. Should I take him in? I told myself if there was a third, then we would go. Well, the third one came, but it was a mild seizure. It was a THIRD one, though, and I was a mess. I got dressed and when I was able to wake him told him we were going to the hospital. Long story short, he would not go. He hadn’t seen what I had. I felt so helpless, alone, and worried beyond belief. Soon it was time for the kids to get up and the day rolled on normally for everyone else. I went throughout the day doing my best.
I had no idea that this was just the beginning of a long, hard, challenging, time. Brian usually had a seizure every year and a half to two years. He had never had more than one at a time. The months that followed were new as far as his seizure activity. Seizures became more frequent and he would have several seizures or “clusters” of them. The episodes came closer and closer, to be at about 3 week intervals. When he had one it was usually in the early, early morning hours then they would continue coming. Sometimes up to seven or eight seizures in an eight to twelve hour span.
Seizures are terrifying. Honestly, whatever you have envisioned in your mind from what you have seen on t.v. is nothing like the real thing. I hate them. I more than hate them. I despise them. They are horrible, like an evil monster has possessed the body of the kindest, gentlest man. The arms that I used to feel safer in than any other place in the world, were not. Laying down to go to sleep at night became a dreaded task. I put it off. I hated going to bed. I can’t really put into words the feelings or real physical pains that came with just going to bed. My heart raced at night. SO much anxiety. Painful anxiety. BUT I must keep on carrying on! Kids to be tended to. Husband had work to get to. School, work, and church callings. Life continued, whether I slept or not. Life continued, whether I was up several times a night with Brian. Life continued, no matter how emotionally frail I felt. Life continued even when I nervously anticipated seizures through the day. Life continued, even when I didn’t feel I could handle it. I had no idea how to deal besides to keep on going through the motions. There were many very difficult days. MANY. This was hard. Sooooo hard. It was hard in ways I wouldn’t have ever thought. Hard emotionally. Hard physically. Hard spiritually. Hard on our relationship. Hard on the kids. Hard, hard, hard.
Seizures are terrifying. Honestly, whatever you have envisioned in your mind from what you have seen on t.v. is nothing like the real thing. I hate them. I more than hate them. I despise them. They are horrible, like an evil monster has possessed the body of the kindest, gentlest man. The arms that I used to feel safer in than any other place in the world, were not. Laying down to go to sleep at night became a dreaded task. I put it off. I hated going to bed. I can’t really put into words the feelings or real physical pains that came with just going to bed. My heart raced at night. SO much anxiety. Painful anxiety. BUT I must keep on carrying on! Kids to be tended to. Husband had work to get to. School, work, and church callings. Life continued, whether I slept or not. Life continued, whether I was up several times a night with Brian. Life continued, no matter how emotionally frail I felt. Life continued even when I nervously anticipated seizures through the day. Life continued, even when I didn’t feel I could handle it. I had no idea how to deal besides to keep on going through the motions. There were many very difficult days. MANY. This was hard. Sooooo hard. It was hard in ways I wouldn’t have ever thought. Hard emotionally. Hard physically. Hard spiritually. Hard on our relationship. Hard on the kids. Hard, hard, hard.
As time continued it seemed there would be no solution. Different medicines were not working. I began to feel hopeless about it all. It had been fifteen long, hard months. Then, I changed my prayers from praying it away, that meds would work and Brian could drive and feel happier, to praying for the strength to handle my part of this. I prayed for peace. I prayed to handle all the needs and added burdens better. I prayed that Brian could feel content and happy. I believed that this was our new normal. I felt this was not going to get better. PEACE came. STRENGTH came. I knew God was aware and cared. We carried on, but the heaviness of all this seemed a little lighter.
Brian had an appointment with his care provider. It wasn’t a special appointment. It was an appointment that we had made several months earlier. He had been taking a very expensive medicine that really wasn’t helping. We went to the appointment and updated her with what was happening. She was surprised that the medicine wasn’t helping. We discussed lots of options. We talked about medical cannibas. We talked about several medicines. After all the talking and thinking the doctor said, “My gut says lamictal.”
Brian said, “I’m feeling keppra.”
“But her gut is saying lamictal.” I said to him. (I really should know better by now.)
“I’m feeling keppra.” he said again happy and confidently.
So, she wrote the script for keppra. This would be Brian’s fourth medicine. She wrote up how to safely transition between the two medications. It takes about five weeks when switching medicines. After we got home and filled the prescription there were several events that happened that really made us hesitant and worried to start the new medicine. (some scary possible side effects) He put it off. The longer he waited, though, the less he had of the old medicine to make a safe transition.
We attended an epilepsy support group. Brian wanted to. That was a big deal to me. We heard and talked with others who were dealing with what we were dealing with! They knew the meds and struggles of trying to find one that worked. They knew the fear. They knew the struggles.
We had a family home evening with our kids and discussed what to do when dad has a seizure.
About a week after the doctor visit, Brian began to take the new med in small doses and slowly build up to the full dose. After he reached the full dose, he began to take less and less of the other medicine. Three weeks came, with no new seizure activity. The weeks continued to pass with no seizures. I tried to not get excited. I didn’t tell anyone. I didn’t want to jinx it. Weeks continued to come and go with NO SEIZURES. Could this medicine be working?
Two days ago, after going three months with no seizures, Brian drove himself to work for the first time in eighteen months!!!!! I can’t even express the gratitude in my heart! I get tears and choked up just typing this. I am emotional and cry easily about this! I am so thrilled for Brian!!! He is so independent and I know this has been a big challenge for him. As the days approached that he would be driving, I was getting very nervous. It’s a lot of faith we put into those tiny pills. I’ve seen him have more seizures than I can count. As soon as he began driving it almost felt like this never happened. I even wondered how I did all the driving for that long. (I’m aware this could be over any moment)
I KNOW we were blessed through this difficult, difficult time. I know there were angels helping. I don’t say that lightly. I have had physical strength that I am not capable of or abilities I needed when I should not have had them. There were tender mercies. One is that I almost always was close by him when he had a seizure. I have caught him, held him on a stool at lunch, held his head as he seized in the shower after hearing him crash with no injury (his head was about an inch from the faucet). He has had them just after walking down the stairs. He has been kept safe through it all. There has been soreness, injured tongue, fatigue, and some confusion related to the seizures, but considering all things, he has been extremely blessed!!
I hate that life has to be so hard, but very thankful for the Lord’s hand in our lives. I consider the difficult times to also be blessings. I know that sounds crazy because I have HATED this. I hated this for Brian and the challenges that surrounded it. I know that we are stronger from it. Our faith, our relationship, our family, all of it. My testimony and reliance on the Lord has grown. I LOVE God and the love and peace I have felt through this. I wonder sometimes what I would be like without any of the trials. I kind of hate to imagine it. I am thankful for this blessing that Brian’s medicine is working, even if it is just a break. I know this will be a life long struggle. I pray for his constant safety. I love Brian! He really has a resilience that I admire. He never loses his faith. He hated this time, I know that, but he really didn’t let it drag him down or define him. He figured out how to get things done. He worked hard at his business. He took kids on bike rides and spent lots of time with them despite not being able to drive. He tried to keep a positive outlook. He lives in faith, not fear.
