Saturday, November 14, 2015

Bicuspid Aortic Valve Disease - Facing Our Fears, Living with Love and Hope

Fall on Palomar Mountain, November 2005
The Days . . . .

Fall is in the air on this November day in 2015, the sky clear, the sun shining. On a sunny mid November day just like this one, ten years ago, we visited the Palomar Observatory. There were four of us in the car that day; we had family visiting from out of state. My husband drove those winding mountain roads to the Observatory, enjoying the handling of his car. It was a golden fall day, a beautiful memory to treasure always.

"And each day was filled with silver
For you gilded each moment . . .
And dazzled I joined your journey

Days like sand flow from our hands
If you doubt, then feel
One like the other goes with the wind
And the time we have goes there

Promise that you'll stay with me all your days
Yes, we made that promise together . . . . "
                                                                from the song "Dagane" (The Days)*
And now, come with me to a day about two weeks later, November 30th. It began like any other week day for us, with busy work schedules. We had plans to meet after work at a church service, as we had done many times before. He was not there when I arrived. I waited, then finally went in, saving a seat beside me. Still, he did not come. Finally, someone sat beside me as the seats all filled. To this day, I cannot remember who I sat beside that night. The memory is obliterated by the shock that followed.

"And outside sneaks the ugly 
and separates you from me"

                                 from the song "Dagane" (The Days)*

I drove home afterwards, thinking (hoping?) that he had just been delayed too long by work or traffic, not an unusual thing, and had just gone directly home.

Please, let me be wrong . . . .

I try not to live in fear of this BAV condition, about which far too little is known. It is always there, from the day of birth. When your husband has already had two surgeries for valve and aneurysm, when you know that the valve he has may need replacing again, icy fingers of fear come easily. I felt them grip me as I neared home. I reminded myself of how many times I had feared the worst, only to find I was wrong, that he was fine. 

Please, let me be wrong once again. 

His car was in the driveway, but there were clues something was wrong. The house was mostly dark and silent, with just a faint glow coming from the back. Without the welcoming lights we always put on for each other, I hurried to the door, fumbling in the dark with the key in the lock. Fear had turned my heart into an icy rock now. 

I walked down the hall, turned on the kitchen light, and found him. 

This time, the fear had not been wrong.

He was down on the floor in a most pitiable condition. Only the paramedics and I need ever know just how terrible it was. I am so thankful that those images have never once visited me in my dreams. 

It seemed to me I screamed those words, "you have had a stroke", as I grabbed the phone, calling 911. I had thought he was dead, until he moved his head. As I spoke to the dispatcher, this pitiful apparition of my husband, helpless on the floor, asked me "Why are you calling them?"

The fire station and paramedics are less than a mile away. I believe they arrived quickly, although I was in a shocked world where time has little meaning. Our beloved African Grey parrot must have been screaming as they came in to help us. I have no memory of hearing our sweet parrot's cries, but I do remember one of them asking me about him. I have no idea what I answered.

The paramedics did some things to assess him, including having him repeat some words, "the sky is blue in Cincinnati", which he remembers to this day. (He thinks it should have been "the sky is blue in Montana", Big Sky Country!) Yes, it was apparent he had had a stroke. He was helpless, with no control of his left side at all. He was soon on his way to the waiting ambulance on a stretcher. 

I made one other quick call, to his surgeon, who has courageously followed him through thick and thin, since we first came to him in 2001 with an aneurysm. Then I drove behind the ambulance to the hospital. In the car, I called two dear friends. I asked one to remember us with prayers. The other joined me at the hospital.

If only we had known . . . .

"And if we had known,
we would have taken off

And I'd have carried you on my arm
through forest and over mountain

And you'd have held my hand
through gorge and dark ravine

And I'd have reached out for you
And you'd have reached out for me."
                                  from the song "Dagane" (The Days)*

I  have tried not to spend time dwelling on what cannot be changed. I do believe we can learn from the past and in learning, help others also. We would have done anything to get that valve out before it could hurt his brain the way it did, if we had known.  "We would have taken off" indeed, where ever we needed to go, to find help. 

My husband had received a mechanical valve in the spring of 1990. We had been made aware then that stroke is a risk, due to blood clots forming on the valve. I assumed this was the reason for his stroke that night. It would be many weeks before we would find out the true underlying cause. It was not as simple as blood clotting on that valve. 

It comforts me today that what has been learned from my husband's injury (due to strands and panus on his mechanical valve) has helped others. Most of them had already had at least a small stroke before the problem was found. In one of them, Father Prodromos, who shares his two recent surgery experiences on the Foundation website, the valve was removed before it could injure him.

Some are called to be pioneers, out on the frontier, before knowledge arrives to help.  We understand that my husband has been one of them. May good continue to come from this, through preventive help for others.

Facing Our Fears, Living with Hope and Love

I did not know very much about strokes. I did know that brain injury was the one thing I dreaded above all else. I had seen it in others. It was the one thing I thought I could never face in someone I love. Today, I am so glad I was wrong about that!

Sometimes we are spared our greatest fears. When we are not, we ask for the grace to live through them, to prove a Power much greater than ourselves, to find blessing in adversity, in experiencing things we would never choose. 

We have been doing that now, for ten years.  Always with hope, finding God's best for us each day, in each experience. 

And so it has been, one day at a time. Hope, love, and healing.
  •  Do not let a stroke intimidate you. The brain loves to heal! 
  •  Do not despair. Your loved one is still there, no matter how impaired.
  •  Do not let medical professionals limit you, by telling you that after 6 months, improvement stops. Remember, the brain loves to heal, and it will, for months and years!
The Days . . . Finding Them Again . . . .

For anyone reading this who is dealing with brain injury in your loved one, may you live each day with hope and love. Ten years later, I can tell you there is hope. There is recovery. And a depth of love that is so precious, so rare, because it comes only at a great price. 

Who we are is much more than the function of our brain.

 Just follow your hearts together, your eyes on a future day, where you will find your dreams fulfilled once again  . . . . You may need to change those dreams a little, but who doesn't? Never give up on your hopes, your dreams. May you be blessed together, as you find them again . . . .

"So far away
So far away
So far as the sun can follow the blue waves
There will I follow you, my friend
There will we find them again"
                                        from the song "Dagane" (The Days)*
                               *Dagane by Odd Nordstoga
Translation from Norwegian courtesy of Kaare K. Johnsen on YouTube
Music player version from Kaare K. Johnsen's YouTube Channel,
of a live performance of Dagane by Sissel Kyrkjebo and Odd Nordstoga