6 Years Ago an Aneurysm Changed our Lives

Six Years

A Saturday morning six years ago, I was sitting on the waiting room of the ICU of a hospital. I was feeling bomb- shelled. A handful of my closest relatives had spent the night with me waiting to hear from the surgeons who began operating on my wife's brain, trying to stop a bleeding that happened the night before.

One of the surgeons had come around 3:30am to tell us that they had completed the surgery. The aneurysm causing the bleeding had been clipped. Now it was a matter of waiting to see how her brain reacted to this traumatic invasion. They had brought her to the ICU. She was hooked to a respirator, which kept her alive. Her brain was too weak and traumatized to do this alone.

The surgical team had taken a couple of bone plates from the left side of her head to allow more room for the brain to swell. She had a white bandage covering her head. She laid there, unconscious, oblivious to all the commotion of the ICU and to the angst that had flooded hearts and minds of family and friends that slowly had been informed of the tragic event.

We could visit her in groups of two for only a few minutes. She needed rest. I remember her sister, holding Jan's limp hand with a look filled with sadness and the weight of a thousand tons on her shoulders. I don't know how I looked, but she reflected my feelings. I did not really know how to feel when something like this happened to my wife!

During the day a couple of surgeons came to explain to us what was going on. They said her brain was "angry" and was reacting by seizing up. If this continued, the brain would swell, seize up, and potentially die. We had to wait for 72 hours to see whether her brain would stabilize. If her brain died, Jan's body could continue to live thanks to the respirator, but she would be like a vegetal.

Friends continued to arrive in a steady stream during the day as well as relatives from other towns. The word had spread like a wildfire. I remember the mountains of love and support I received that day, while at the same time, I was going in a free fall inside of me.

Initially I had gone through the motions of calling the ambulance and going through ER on just adrenaline. Now, the initial shock and fear was turning into a tension. One part of me was willing to accept the comfort received from loved ones.

At the same time, another part of me was falling into a dark vortex in which I had to face dire prognosis from the surgeons; the implications of the paperwork I had to sign with the order of “do not resuscitate”, if her brain would die; the multitude of questions about this tragic event. I could not reconcile what I knew about a loving God with this incredible pain that was swelling somewhere in my core. I needed to find an explanation that would tell me why this was happening to my wife. Why her? Why now? Why didn't this God stop this from happening?

Our life together was collapsing in front of me and I could not do anything. I was having the equivalent to an emotional aneurysm. Many people told me many things. I am sure many of those words were very wise. However, blinded by pain I was unable to remember most of them. I can only remember their faces full of concern and compassion. I needed them desperately, but they seemed to be standing on the other side of thick glass wall. The only comment I remember is what Jan's dad told me "keep things in perspective". I didn't know then what he meant. Years later, his wise advice sank in.

My spiritual mentor arrived during the night. She didn't say much, rather, she walked alongside in silence while I paced in that ICU corridor. We walked shoulder to shoulder for hours. She did her work without words. Occasionally she touched my shoulder gently to let me know that she was still there. I cried bitterly in silence. Eventually, I was able to get a sense of comfort and companionship. In my darkness and desperation, I needed a light, a rock to regain my footing. Deep inside, I heard a soft but convincing voice, assuring me that I was not alone

Six years ago, my life changed forever. It had changed several times before, but not as dramatically and painfully as this time.

In hindsight, I can see that six years ago I began my graduate work in relationships. That day I began to clarify who I was and what was my purpose in life. I knew I was starting a long and difficult road in which I had to trade logic and strategy as essential tools in life for compassion, patience and totally new understanding of integrity: being one with my words and commitments.

After all, five months earlier I had told this unconscious woman in the ICU that I would love her in health and sickness... and now the opportunity to prove it to her was in front of me.

Six years ago, I began a path that has taught me how far human love can go.

I am grateful.

FC

Aphasia - a poem

Aphasia.

Her words come down the corridor
undecided, bouncing off the walls
like snowflakes awaiting the avalanche's
inevitable, deafening roar
she wants to share her heart's desire
she sees the perfect sentence in her mind
but her lips are rebellious and unkind,
Instead,
a calcified noun hits me in the chest.
She wanted to ask me for a date,
disconcerted by unfriendly words
I chose to walk away


FC

From the Man Cave

I am in the Man Cave today. This is the attic of our house. It is the place where I go when I want to draw, paint, write, read or just sleep. I am in this cave because I don't seem to understand Jan. I'm sure I am the only man who can't understand his wife (any hands up?)



I've noticed something that is becoming more noticeable since the last seizure, but maybe it was there before and I had not noticed it. Several occasions my wife has gotten upset with me because I did not hear what she said. I know that as I get older, my hearing is beginning to fade. I know that when I am concentrated doing something and Jan comes to talk to me, I exercise my very powerful power of selective hearing, and as a result I only hear a part of what she said. I know I have problems with listening to her, really listening to her, putting all my attention to what she says, and making eye contact -yes! this is indispensable if I want to let her know that I heard what she said. No eye contact in a conversation is an automatic trip to the dog house. You see?, this is a challenge, because even though she had the aneurysm, she has a photographic memory about events and details in the medium and long term memory. On the contrary, I am beginning to experience a good share of senior moments not remembering what or where I am supposed to go. So, without an excuse, every time I ask her about something, I go prepared to end in the dog house. Actually, I spend so much time there, that I should make it more comfortable...



Having said that, on several occasions when I have asked her where is she going or what is happening at a particular time, she replies: "I've told you just five minutes ago". And this is where the issue becomes more intriguing, because I review my communications for the past five minutes and often they don't include talking to her. What am I saying? That I am getting totally deaf? Not likely. What I am beginning to suspect is that she has conversations with herself, some of which include my person, but they do not necessarily come out of her mouth. These are conversations in her head. Have you talked to yourself lately? I do it all the time, and sometimes a part of these self-talk comes out of my mouth when Jan is around, so she asks, What did you said? What are you talking about? because she has only heard a fragment of the whole thing. Most times I just reply: Nothing. Which is not true, because I said something, and this takes me straight to the dog house with a sermon about telling the truth...



So, she does a lot of self-talk. The problem is that she thinks she has told me things that I have not heard. Is this a part of aphasia ( /əˈfeɪziə/) or apraxia? What system or program got knocked down with the last seizure? Every seizure kills thousands of neurons. Just like that: Puff! they are gone. The good thing is that she has a few trillions of neurons more, so she can spare some. But why the ones that allow a person to know that the words are actually being spoken rather than just thought? This is my question right now as I ponder and pace around my man cave (which serves also as a physical dog-house).



I think I need a dog because my not even my cats come up here...



FC

Seizure Five Years Later

Three days ago, Jan went to an interview with a special education program to explore volunteering. She had been excited about this opportunity for quite a while. She arrived at the school office exactly at the time when the students change classrooms. The hallways suddenly filled with loud voices and young people moving fast from one room to another. Later she told me that she felt nervous by all this commotion, unsure about being surrounded by so many youngsters all of a sudden. For over twenty years she stood in the middle of the students feeling their energy, and thriving in the knowledge that she had not only authority over them, but also a deep caring for their learning. This time, however, the feeling was different: uncertainty, insecurity because she is unable to express her mind on command, overwhelmed with the noise and unable to cope with so much input (voices, people, movement) all at once. She went into the office where she had her appointment -about 20 meters from the entrance door-, she talked for a short while with the person she was meeting and then a seizure set in. She has am aura of 5 to 10 seconds when she has a seizure. This gives her enough time to find a safe place on the floor where she can lay down. then the Grand Mal (tonic-clonic) seizure starts. She will have convulsions for about 40 seconds. After the convulsions are over, she lays unconscious for 15 to 30 minutes and starts coming back to over the next hour or so. We had an appointment at 1PM that day. We were going to drive to a nearby city to see a neurologist. Her previous neurologist retired three years back and since then, she had been treated only by her family doctor, to whom she had only access three or four times a year. All of her other medical needs have been treated in walk-in clinics or hospital emergency departments who don;t have the in-depth knowledge of her case or her aneurysm. She was ready for this appointment. She had great expectations to re-start a relationship with a specialist that could help her find new paths to improve her condition. When I got home, I found several messages, one from the office where she had the seizure, another from the emergency receptionist, and a third from a friend whom Jan had named as a primary contact in case of emergency. All of them informing me that she had a seizure and was sent by ambulance to the hospital. What a sucker punch!, I thought. A very familiar feeling of dread filled my nostrils, I let the anger bubble and come out. I found myself saying in aloud voice: When is are we going to have a break? Isn't it enough to struggle day to day with all of Jan's limitations? I was very aware of the consequences for me of every seizure event, the extra time and care required, the struggle with the feelings of impotence and incompetence, the search for an extra dosage of patience to become Jan's hands and feet and words when she does not have access to them. I don't know the border line between disappointment and depression, but I found myself questioning whether I had enough faith to ask and receive the miracle of Jan's health, of wondering where were all the friends and family when we needed them most, of wondering why this happened to us? why, why why? I had to do something about all these feelings. I knew better not to bring them boiling with me to the hospital. Jan was the one in need more than me. So, I let them come out for a few minutes in shouts and tears. When I felt calmer, I drank a glass of cold water and set off to find Jan. I arrived at the hospital about three hours after she had the seizure. I found her sleeping in a hospital gown in one of those little bays with a curtain. All her neighbors looked in bad shape as well as their visitors. Most of them seniors. Jan woke up when I pulled a chair next to her bed. A expression of disappointment mixed with fatigue covered her face. Slowly, she told me sketchy information about how she was feeling. I tried to be reassuring, although I always feel inadequate to soothe either her disappointment or her pain. At first, she could not remember where she was when the seizure happened. She complained of a headache. Eventually, a nurse showed up with equipment to take an ECG and some samples of blood. I gathered through the grimace on Jan's face, that the blood sampling was painful, this on top of the headache she already had. We asked the nurse for some painkillers, but she said that only her nurse could give her some pills to block the pain. To Jan's relief, he pills came a short time later. The nurse at the hospital had told her that her seizure lasted three to four minutes. She thought this was unusual since most other events lasted less than a minute.This upset her because she was feeling also extremely fatigued. About an hour later, her memory started functioning and she could remember where she was and what she was doing when the seizure took place. She even remember that she had parked her bike in front of the school, among the student's bikes. I went on a hunt for her bike, without success, luckily a friend had taken her bike in her van and dropped it later at the house. A few hours later, the emergency doctor came to see Jan. The results from the ECG were negative, so he suggested to keep Jan under observation for a few more hours. Jan, of course objected, arguing that she would be better at home. I told the doctor that we had to reschedule an appointment with the specialist because of the seizure, and that we hoped he would have more answers. He agreed with us and promised to send the info to the family doctor. We went home and Jan went to sleep early. This was a familiar scene from many other events. I could not sleep for a while, thinking about the meaning of this seizure and all of its implications. I was ready to quit my role of a caregiver. At the same time I was reminded of my pledge to love my friend and wife, especially when she needed me the most. Yeah, if God abandoned me when I needed his presence the most, probably I would not be around. I told God that I really did not know how this suffering business worked, but that I trusted that he knew why and would be gracious to us. I honestly could not feel thankful, my grief was painted with disappointment. Slowly, my eyes closed and I fell into an uneasy sleep full of strange dreams. Jan and I had have a seizure and the road was going to be uphill in the next few days... FC