Mindi and I at her graduation Brian mere hours before our first hospital encounter.
Brian and I needed to get to bed early for our early flight and in the interest of time, or to make time interesting, as Brian says, we showered together. Out of nowhere, Brian says, “Woah, what is that?”
Me “What is what?”
B: “My hand feels totally weird. It is tingling, like it is falling asleep, now it is up my arm. Woah, my foot. My tonnn….. Maaa…. Tuuuu….… Gaaa……... Ou……” He gets out of the shower. He grabs a towel. He sits on the toilet.
I get out of the shower. I grab a towel and ask, “Are you alright?” He shakes his head no. “What’s the matter?” I ask.
He shrugs his shoulders and tries to talk more… “Caaaa…. ya…. geee gaaaass?” He makes a gesture as though he is putting on his glasses.
Me: “You want me to get your glasses?”
He nods yes.
Me: “Brian, what is going on? Are you okay? Do you need to go to the hospital?”
He tries to speak again: “Yaaaaa,” he nods. “I…caa….taaa…..”
We don’t have a car. My parents are not home. I grab the phone and call my aunt Deb and Uncle Paul. They live a few blocks away. Paul was going to take us to the airport the next day on his way to work. I explain what I can of the situation and ask for a ride to the hospital. Paul says he is on his way. He is at the house in minutes.
In the meantime, Brian’s episode subsides. He is now completely fine as though nothing happened. He can talk. His hand feels fine. His body feels normal. He considers what just happened. He had experienced a series of strange sensations all on the right side of his body. He lost his ability to speak for a few minutes. Then he was fine. I am trembling. Paul comes in the house. I am still half-way wrapped in a towel. Brian explains to Paul what just happened and we try to decide if we actually need to go to the hospital since Brian is currently fine. Paul tells me before he can talk about it I have got to put some clothes on. We laugh. I put some clothes on and we head to the hospital just to be safe.
Since everything seems to be fine, Paul drops us off at the ER and we decide we will call him when we are finished. Who knows how long this may take? We have never had a fast ER experience. While I am filling out admission papers, the triage team decides to put Brian on an EEG machine since all his symptoms were right side specific. I don’t know any of this information on these forms. We have been married for 4 weeks. I take the clipboards back and find my man laying on a gurney hooked up to EEG smiling lovingly at me. We laugh about how we will get mere minutes of sleep before we have to catch our flight. We speak to the extremely young ER doctor resident. We joke with him. He asks what our activities were that day – a few beers, riding 4 wheelers, hanging in the hot sun. He leaves. My Aunt JoAnn – an O.R. surgical tech – arrives. I think nothing of it except how nice it was for her to come so late. It is around 10:00 by now. I tell her we will just call her when we are done. She says she will just stick around. To this day, I have never asked her why she came to the hospital that night. I am sure when Aunt Deb called her to tell her what was going on, she must have known it could be something VERY serious. Is that what happened, Aunt JoAnn? The ER doctor comes back in and says they are going to do a CT scan, JUST IN CASE to rule out everything. Okay. I watch my husband get wheeled away on a gurney for the first of what will soon be countless times.
When Brian is wheeled back, it is getting quite late by now. We laugh that we probably should just stay up because it will be harder to wake for our flight if we sleep now. It is approaching midnight, I think. The ER doctor returns. Here is what I remember from there: “I don’t really know how to tell you this. What you probably experienced today……. seizure……… Your CT scan was abnormal……… lesion………….left side of your brain…..I’m very sorry.” This meant almost nothing to me. Lesion? What the heck is a lesion? What does this mean???? Aunt JoAnn starts to cry and says, “Darnit. I was hoping this wasn’t the case. I was afraid of this.” She rubs my back. I stare blankly at the ER doctor, then at Brian who looked as lost and confused as I was. Brian said, “What does that mean?”
Too-young-to-bear-bad-news-to-someone-his-own-age ER doctor replies, “We are not really sure…..talk to specialist….. any number of things….more tests….admit you right away….neurological ward…..I’m very sorry.”
So there it was - the elephant in the room we didn’t even know we were ignoring for the last two hours.
Brian looks at me and I at him. JoAnn leaves us alone for a minute. Brian says I need to call his parents and have them come to St. Louis. They live in Peoria – about a 3 hour drive from St. Louis with Brian’s youngest brother, Michael, who is 16 at the time. As he is telling me this, he has another episode. It scares us and I notify the staff. We don’t understand these episodes yet – the tingling sensations, the sudden inability to speak, the randomness, the sudden onset. (We would learn throughout the course of that night he was having focal sensory seizures. They were triggered from the abnormality in the scan – on the left side of his brain – controlling the right side of his body.) I am crying, shaking, trembling from my quivering lip to my icy cold sandaled toes. Not understanding the seizures yet and what they mean, Brian tells me to make sure his family knows he loves them – his parents, his brothers and Brennen, his nephew, too. When the episode is over, he tells me to “make sure you live your life – move on – be strong. You are beautiful and you need to know I expect you to marry again and I love you all the same. It is okay.” I kiss him. I lay on the bed with him for a minute and he tells me I have to go call his parents.
I leave the room. I still don’t understand what this means. Lesion? More tests? I have to ask JoAnn. I have to find JoAnn. She is in the lobby with more of my aunts now. Aunt Vicki, Aunt JoAnn, Aunt Deb. I think anyway. I don’t remember. I just know that it must be even more serious than I understand at this point in time. JoAnn helps me find a nurse to use their phone to call long distance. This was 1997 before everyone carried a cell phone and when pay phones were plentiful. I don’t remember what I said to Jan and Ed, Brian’s parents. I know I am trembling. I know I am nervous and I know I call them around 1:00 in the morning to tell them to come to St. Louis right now because Brian was having all kinds of problems on the right side of his body and they were admitting him to the neurological ward right away. I hand the phone to either the nurse or Aunt JoAnn and they tell her more and give her directions. As a mother today, I can’t imagine what she went through. I can’t imagine what happened next at their house. I have never talked to her about it. I know that less than 6 hours later (3 hour drive), Ed, Jan, Michael, Sean and Cheryl (Brian’s older brother and wife) showed up in the neurological unit in Brian’s room.
After the phone call, on the way back to Brian’s room, I can’t breathe or think. I must have heard the word cancer somewhere in the last hour because I am now consumed with thoughts of Brian’s death. I am consumed with fear, uncertainty, sorrow and fatigue. I collapse in the hall to my knees – and not metaphorically. I should take it as a chance to pray to my God humbled on my knees, but I don’t. I pick myself back up, brush away my tears, and walk into Brian’s holding room. We hold each other in that little single hospital bed, kiss and cry ourselves back to reality.
Brian’s family arrives at the neurologist unit in Brian’s room by early morning – around 6:30 am. Brian is still having episodes every 45 minutes or less. Each one more frightening to us than the last…what do these mean? Will he lose consciousness with the next? He asks me to leave the room and has words expressing his love to each of them privately.
By mid morning, after meeting with the neurologist, we understand Brian’s episodes better and she easily controls them with the correct medication. Brian needs a large first dose to get therapeutic levels in his blood. Once that happens, he doesn’t have another episode for weeks. At this point time, though, we have to determine exactly what the abnormal spot on the CT scan is. We have only been at the hospital for around 12 hours at this time.
This was one of the worst evenings/nights of my life. This was also the beginning of a new journey for Brian and me. This was the first day we were struck down to the point of such despair and confusion that we found ourselves desperately searching for logic, hope, reason, ANYTHING. This was the first day Brian and I would begin our journey to the relationship we have with Christ today. That is the biggest miracle of all that particular night. Another miracle was this: my Aunt JoAnn was nudged by God to be at that hospital with us that night. Aunt JoAnn stayed with us all that first night. Aunt Vicki, Aunt Deb and Aunt Jane – were you there all night? I just don’t remember. The only phone call I had to make was to Brian’s mom. The remainder of our very large families were notified all thanks to JoAnn’s first phone call. I didn’t even have to call my mom, who at the time, did not handle news like that with as much grace as she does today. We would have been a mess together. Also, JoAnn, having some surgical connections, immediately asked if we wanted the name of some neuro-surgeons as that was the recommended next specialist. Where would we have begun with this if not for her? She called a neuro-surgeon for us and he was coming to meet us in the morning. Aunt JoAnn was the person we needed at that exact moment in time. She listened to and obeyed God’s promptings for her to be there. We are so thankful she did.
Next week… The rest of diagnosis week: Discovering many more truths.