The first morning at our home, Dec. 19th, 2012, I awoke and Derek was still sleeping. My mind was racing on all that I had to get done before the Christmas season. I was so incredibly behind.
My phone was ringing, and as I answered it, my good friend Nancy was on the line. She was hosting a Christmas gathering that Christmas Eve and heard about Derek’s complications and was wondering how everything was. I told her, “Everything’s better. By Christmas Eve, Derek will be fine and this will all be behind us.”
But as Derek woke up that morning, it was made very clear to me, that Derek was the furthest thing from fine.
He could barely walk and could only make it from the living room recliner, to the bathroom and back. That small walk, he needed help, walked like a drunken sailor and he quickly found that the only position that gave him some relief was if he laid in the recliner with his head resting and his feet elevated.
His world was spinning and bouncing. If he laid in the recliner, his world would just be spinning. If he attempted to move, his spinning world was now visually bouncing as well. Picture, watching a really bad home video. Where everything is moving crazy and your eyes can’t keep up, and your only option is to look away or turn it off.
Derek didn’t have this choice. He couldn’t turn off the bad video. This was his new world.
This all created a pressure on the left side of his head, same side where surgery was, and this so called pressure is what would build up if he moved at all. When the pressure got really high it was like a balloon blowing up in his head and he just wanted to ‘pop it!’ Of course not being able to at all.
Then came the noise factor. This first day home, we began to realize the incredible sound sensitivity Derek had developed.
It was like any noise, kids talking, blender going off, running water…. Things we would all call ‘normal noises’ where no longer normal for Derek. He had become so sensitive to noise, that even if he was laying in the recliner with his head back, noise would make him feel like he was spinning more, the world was bouncing more, and the balloon like pressure was building up in his head.
Higher pitches, like the blender, laughter, our children’s higher voices, became like finger nails on a chalkboard amplified at a rock concert level.
His reaction would be gritting his teeth, holding both of his hands over his ears and bearing down, till the noise stopped.
It was this morning that he also noticed his right eye, and what he told me had a ‘change in vision’. As he would describe it to me, it felt like his eyes were in slow motion. His right eye was not in focus and all he could do was lay back in the recliner with his head resting and eyes shut.
This became the beginning of his favorite position, or what he later called his ‘sweet spot’.
That first morning home, is when I saw the full out effects of how much Derek had changed.
It was heart breaking.
I, immediately called the doctor only to find out he had left for Colorado, and his nurse assured me he would be in touch.
About 10 minutes later, he called me back, I told him every symptom and he wanted me to give Derek more Valium. He gave me his personal cell phone number and kept telling me that his right eye changing and these symptoms weren’t related to his surgery.
“Really? Why has he never had these symptoms before? He’s only had these after his surgery.”
The Doctor didn’t know how to respond, his only response was, this shouldn’t be happening from his surgery and just give him more Valium.
The next several days, continued this horror movie of Derek’s new life. He literally lived out of the recliner, I could hardly get him to eat, we had to help him get to the bathroom, and his life, all of our lives were on hold.
The Dr. kept telling me every day, he will get better. So of course, I held onto that.
But every morning I woke up, praying that Derek would be back, however as soon as he woke up, it was like the movie “Ground Hog Day!”
Derek was the same. He was miserable and unable to do anything but lay in the recliner.
Dec. 23rd, I realized, I had not one present wrapped. This is so trivial and well, I’m embarrassed to say this gave me a meltdown, but it did. Derek and I had a tradition. Every Christmas, we would pick a night, drink wine and lay out everyone’s gift, watch old sappy Christmas movies like: ‘It’s a wonderful life’, ‘Little house in the prairie Christmas’, or ‘Chevy Chase in Christmas vacation’, and enjoy wrapping all the gifts imaging the joy the person receiving the gift would have. Derek loved to give gifts to others. He WAS Santa Clause.
This was the first Christmas in twenty years, that I had to wrap presents by myself. I cried that night. But felt so silly, thinking, how ridiculous I was being. My mind would drift back to what those poor families were going through with the Sandy Brook Elementary school shooting. I kept telling myself…. “SARAH, GET A GRIP!”
Dec. 24th, Christmas Eve day, Derek was the same. Miserable.
I had to make the call, to our friends and family that we wouldn’t make Christmas Eve service. The kids and I had decided that we couldn’t leave Dad behind. We had always raised our kids, “Leave no man behind!”
So, I made the kids still get dressed up, and we took pictures around Derek in the recliner and we missed Church on Christmas Eve, which was the first time ever in our entire marriage. We crowded around Derek and watched the movie, “THE NATIVITY!”
The next morning, we were supposed to host Derek’s family Christmas. I had thought about canceling that too, but Derek LOVED Christmas and the only way he could be around it was if people came to him. So, we still hosted Christmas. We tried to keep the noise and everything out in the garage. But Derek could barely handle it. He lived in the recliner or when he couldn’t take the noise anymore, we moved him back to our bed.
I honestly, didn’t even know what to say to people. Because I didn’t understand any of this myself. No one really knew what was going on, because honestly, I didn’t know what was going on.
By January 2nd after the holiday season was over, I was pounding on the Doctor’s door. I drove Derek back to Milwaukee, which was awful. Derek was staying the same. There was absolutely no improvement. He was so bad, that when I got him there, we couldn’t even wait in the lobby. They had to take him back immediately and lay him down. By now, I had become Derek’s voice. From all these miserable symptoms it led Derek unable to really focus and concentrate. So when he would be asked questions, he would just look at me with this blank look like, “Help me Sarah.” I realized, that I was now his ‘voice!’
The Doctor seemed shocked that Derek was still like this. So, he wanted to get him into something called Vestibular therapy.
I did whatever he said, because, I had no choice. I didn’t know how to help Derek.
There was one nurse at this doctor’s office, that gave me very valuable advice. She said, “Every description, just one word, can make a huge difference.”
From then on, I started taking notes. Writing. Being very descriptive. I became Derek’s voice.
I started researching on the internet, at the library. Anything for balance disorders, vestibular and nystagmus disorders.
I wanted a second opinion. So I started the journey of getting him into another hospital. In the Midwest, Mayo Clinic seemed the place to go. But of course, it was ‘out of network’ for our insurance. I had no idea, what I was up against, just started the process of paper work trails with our insurance company to get an ‘over ride’ to get Derek re-evaluated by some of the top physicians in the Midwest. At that point, I assumed, there was a system in place and that once I started sending in paper work, that it would get processed.
For the next 6 weeks, I drove Derek 2-3 times per week, to Milwaukee for therapy. It was like watching my strong, superman of a husband have to learn how to walk all over again. Therapy became my new job. I had to rearrange my whole work schedule. I had to cut back big time. Even when Derek was in therapy, I had to be there, to learn with him so I could help him at home. Derek was dropping a lot of weight. He was so dizzy I could hardly get him to eat. He was down about 20 pounds. Which he was in amazing shape before this had all happened, and now he was starting to look like a skeleton.
Our lives stopped. Everything stopped. My every waking moment, was taking care of him and playing catch up from our new arranged lives, and trying to bring a bit of normalcy to our kid’s lives. The irony of this, is lives stopped, but Derek’s life was spinning out of controll, literally.
The whole time, I still had no answers. No one could REALLY tell me…. What really happened in that surgery.
The days were now turning to weeks, weeks into months. Every week, I realized more and more how there was no process, no system for insurance. Paper work just got lost.
When we received the first denial for acceptance to Mayo Clinic, I was devastated for Derek. Cried for a couple of days. Felt defeated. But then, I just got back up, by the grace of God and knew I had to fight back. I had no choice but to figure this out on my own. Even the doctor overseeing Derek, was scratching his head and didn’t know how to help him.
These were days where the shock wore off…. And a mixture of denial, splashed with pure anger grew in me. Why Derek? Why us? Derek was such a hard working, great, young guy. We were both self- employed and ran two business. I had to now take over Derek’s business and call everything off. There was no way he could work.
When I wasn’t working, I was becoming my own attorney to deal with insurance companies. Let’s just say, they learned my name real quick, and by month 3, when I called, I was transferred to the supervisor immediately.
By May of 2013, 5 months later, Derek was still not driving or working, and though he could walk a little bit better, he was no way near back to a normal life. When he did walk, he had to ‘fight’ to walk straight. It’s like there was a magnet on his right side pulling him towards it. He wanted to constantly walk towards the right side, and walked like a penguin to balance himself out.
A physical therapist once had explained this to me: Imagine standing on a balance beam all day, one foot in front of the other, and you not trying to fall off. After a while your body would become very fatigued to the point of exhaustion. This is exactly how Derek feels all the time every day. He fights all day long, to try to compensate for not falling.
On top of pure exhaustion, he had this horrible ‘metallic’ or ‘raw’ feeling in head, the horrific pressure and sound sensitivity. Never had a moment gone by where this poor man didn’t have these symptoms. They were 24/7. Our whole family had become numb to this new way of life. On days when we felt so incredibly lost, denial became our best friend.
Mid May, I had a speaking engagement for our business that I had committed to way before Derek’s previous surgery. I was to speak in Tokyo. Derek was supposed to come with me. The big question was, should I take him like this?
Through a connection of someone I knew, I consulted with a physician at Stanford University about Derek’s condition.
This Doctor assured me that Derek would eventually find balance again, and recover. We just needed to give this more time. This is NOT what I wanted to hear, because it had already been 5 months, yet at the same time, I felt relieved. This doctor assured me that Derek traveling, wouldn’t make him worse in his condition, but his choice would be simply this: he could be miserable here at home or miserable in Japan. So let Derek decide.
Naturally, Derek, wanted to go. He loved to travel as we had done so much traveling before this.
Mid May, I took our two younger kids, ‘Dizzy Derek’ as we had now nicknamed him or the kids called him “DOUBLE D” ( you have to find humor right?) and I traveled to Japan.
Interestingly enough, I thought the airplane ride would be really hard on him with the pressure in his head. But it was the airport, walking in the terminal, the ramp onto the plane, and the commotion and noise of the airport that made him go crazy.
We had been assigned an interpreter for us. A wonderful Japanese woman named Miko. She was awesome. We fell in love with her. But she became more than an interpreter, she became Derek’s babysitter. Derek simply couldn’t handle the schedule that was laid out for us. I honestly don’t know how I would have handled that trip without that woman. She was an angel from heaven.
We had a day of sightseeing planned, and we were supposed to hike Mt. Fugi. But when we got there, I knew there was no way, Derek could handle this. Our son Gavin was so excited to hike as we had taken him hiking in the Rocky’s back home so many times.
Derek somehow, for the sake of his kids, managed to do a small hike, but that was it. He was shot. It was on this trip, that I couldn’t deny anymore, what had happened to Derek. WHAT had HAPPENED…. I really didn’t know. But what I did know was SOMETHING happened to him in that surgery.
He wasn’t the same person anymore… at all. He needed help. Real help.
Flying home from that trip, I knew that enough was enough.
That trip, changed everything for me. It was a turning point, from anger, denial, shock, to pure determination to help my husband…..I literally rolled up my sleeves, boxing gloves came on, and I wasn’t going to have any more doors shut on me. I was going to put my foot in every door I could so Derek could get answers.
I was done taking a back seat to watching my husband’s life ripped completely away from him, and our lives turned upside down.
Inside me, I knew I was personally fighting every single day, to not be bitter and angry.
Instead I prayed.
I had absolutely no understanding in any of this.
I Decided to work like it depended on me, but prayed like it depended on God.
Because I knew…. That this was out of my control.
I had to just trust in the plan that was laid out before me, even though I didn’t understand it….. have faith in whatever was yet to come……
Welcome to…. BLIND FAITH!
To be continued.