Another Memory,,,the turning point

I read about a new procedure.
Simply put, Multiple Sclerosis afflicted people had clogged jugular arteries.
It was named Chronic Cerebrospinal Venous Insufficiency.
or CCSVI for short.  A woman , Joan Beal, had researched this new procedure initiated by a doctor in Italy.  He had a venoplasty performed on his wife who had MS, and her symptoms were unbelievable improved.  Joan convinced a doctor to perform this procedure for her husband who has MS, and his improvements were amazing.

So, I called George, greatly excited.  “George, I think we have a solution”.
We were so excited.  Fast forward, after much hard work, arm twisting, research, planning, pleading with local doctors, finally, finally, a doctor in New York, was discovered who was willing to  perform the venoplasty.  It was uncharted territory.  George would be one of the first that Dr. Sal would work on.

George's procedure was scheduled.  We flew to New York.  At this point,
George was experiencing many symptoms and his walking was becoming very difficult.  But, he was not in a scooter or wheelchair or using a walker.
He would not believe that his mobility would become seriously impaired.

In Dr. Sal's office were two other young men.  One was in a wheelchair, a well known blogger, Wheelchair Kamikazi.  The other, in a scooter, Jason DaSilva.
All had Primary Progressive MS.  I watched George's face as he avoided looking at the other men.  His eyes were frightened and his mind was reeling as he noted their visible symptoms.  I could tell that he was petrified that he ,too, would suffer the same slide into paralysis, immobility, loss of independence.  Coincidentally, Kaz and George became really good friends.


The morning of the procedure came.  George's blood pressure had risen to such
a high number, that the nurses would not allow him to go into the operating room.  He was anxious, hopeful, worried, stressed.  I sat by his side, not knowing what to expect.  Just praying and hoping he would be helped.  The procedure took over five hours.  Remember, he was one of the first, and no one quite knew what they were looking for or what the venoplasty would achieve.  When it was over, George could feel his feet for the first time in a long while.  They were warm, not numb.  He was exhausted, but excited.One of the doctors who assisted in the procedure said to me, "You have a really sweet son". Unsolicited...but how true.

The next day, after checking in with Dr. Sal, we decided to go to eat.
We sat in one of those typical but surprisingly wonderful, Italian hole in the wall restaurants, peppering Brooklyn neighborhoods.  We had a great meal, talked and laughed, all the time not talking about the elephant in the room.  Did it work?
Would George be cured or at least helped?

Our answer came sooner that we had dreamed.  It became one of the most terrifying and horrendous vignettes in the journey of George's MS.
We decided to walk the short distance to the hotel.  George was always a walker.
Those long legs could eat up the blocks with no effort.  I usually had to take four steps, fast ones, just to keep up with him.  Not this time.

As we passed the first block, George began to lurch, left then right.  He had to hold on to store fronts, and finally I had him put his arm around my shoulders to help him stay upright.  He was six foot two, and I was five five.  I was of little help as support.  Finally, as an excuse to let him rest, I told him that I wanted a coffee. I was in a panic, terrified as he was.  “Please, let's stop and get a latte”.  We went into a little shop.

I ordered.  George sat for a moment.  Then, he got up and shot out of the store.  I grabbed my drink and followed him.  By now, he could barely stand and dragged his legs.  He looked drunk.  Again, I put his arm around my shoulder, bracing him on his back with my other arm.  He was 200 pounds and in no way was I going to be able to hold him up if he fell.

As always, he persevered, walking through sheer will.  His legs were not cooperating, but he pushed on with all the inner strength that he always had.  We finally got to the hotel, in the elevator and into the room.

He lay on his bed, exhausted.  I was afraid to look at him, not wanting to make him feel shame or fear.  I sat quietly.

When I finally peeked at him, I wanted to just die.
His face was immobile. Tears were seeping out of his open eyes, rolling down his cheeks, into the pillow.  He said nothing, made no noise.  He knew then that his destiny was already determined.  He had fought so hard, suffered physical pain with the procedure, and now, in a day, had become unable to control his legs.

How does one man watch himself decay and hold on to his sanity?
Hope was high that day, and MS laughed in his face.
I will never forget that exact moment.  And, how then, can anyone truly understand  or judge the living hell that George went through in just two short days?

That image has embedded itself in my mind's eye.
The silent tears........forever.

I, his Mother, will never forget.

BIRTHDAY BLUES


Dear Son,

You would have been 49 years old today.
Still in the prime of life.
This morning, as I prepared the incense holder in the Greek tradition, the tears rolled, unbidden, copiously down my face. I sat on the bed where you died, and talked to your picture.  By now, you should be tired of me saying the same words, over and over again.


I miss you.  I love you. Did you understand how much I loved you? If only you had needed a kidney, a heart, some organ that I could have given to you to make you healthy.  All so unfair!!!! Such a waste.


I wonder who else might be thinking about you today? Your Dad and I just looked at each other sharing our sadness and pain.  No one to call him and be silly on a morning phone call.

I really miss your voice, George.  You had a melodic and soothing voice.  Every time I heard, "Hi, Mom, whatcha doing?", I was happy.

The same words, the same thoughts over and over again.  And, identifying with all the parents who have lost a child.  Knowing how many of us are hurting, suffering, broken in a special way that only we know.  

I wrote in blue today, your favorite color. I didn't bake a cake.
For what reason?  On this day, St. George's day, as you knew, my dessert is deep, never ending grief.

Be at peace, my wonderful son.  Be at peace. 

Four years tomorrow.
That is how long you have been gone from us.
You chose to die on a beautiful Sunday morning at 6:37 a.m. on March 3, 2013.  You always were an early bird from the time you were born.

I never know how I am going to react on the day, days or weeks of the month that you died.  Just as I didn't really know how I was going to be after you died.  I was so caught up in your struggle as well as being in shock, so when a hospice worker asked how I would be when you died, I said, "I don't really know".

Well, after four sometimes blurred, sometimes too clear years, I know.

Being a mother, for me, was the prime mission that I have had in life.  Once you children were born, I was only in this world to make it good and loving for all of you.  I think you all got this
message.

Life doesn't care what our goals are.  It just is.  And so, when my daughter Alexia was born, after I had been ill for the nine months that I was pregnant, I mourned for years every March 18. Until finally, I woke up one day, and realized that I had not even noticed that the day had passed.  Not so with March 3.

We all mourn alone.  I write this blog through my tears, and my husband turns inward and cannot even look at me as I cry.  It is too painful for him.  I get it. No one, even the most understanding, can get into my head to really know how sad I am.
I have strange thoughts and rituals since you have died.  I still have a uterine "memory" that pulls at me when I think of giving birth to you. It's like cell memory, a place that is personal and not explainable.  I sleep every night with that awful pillow that you loved and wouldn't let me replace for you.  I greet you every morning and every night with a song that we used to sing. And, I go to sleep hoping you will visit me.

Next to my bed, is a tiny glass container with a lock of your hair.  It was starting to get some gray strands.  You would have been a really distinguished looking man as you matured because you had a stately stature and a very handsome face.  Not just my opinion.

None of these rituals bring you any closer to me.  Today, the last day you lay dying, I remember the constant groaning that were the only sounds you made for thirteen days.  A hospice chaplain, not your typical religious image, said that you were sorting out your life as you lay dying.  He told me that he could see you already walking in a field, with your dog by your side and that you were ok. He believed that he had a gift that allowed him to go into your mind, and that you had allowed it. Since you loved being in the outdoors, I wanted to believe him.

Once the morphine had been pumped into you, you never opened your eyes again.  When the hospice doctor woke you and asked if you wanted to stop the dying process, you adamently shook your head and said "NO"! Dying wasn't easy for you, George, but neither was watching your life fall apart from MS.  Aside from the fast progression of your disease and your physical disability and pain, you had to deal with emotional pain.  For a man with a huge heart, you learned that people can be weak and unthinkingly cruel. So many never called or visited you.  You needed to feel the love and friendship, and many just didn't take the time.  Your world got so small, and I cringed at the injustice of all that was inflicted upon you.

So, as I wait for tomorrow, the "day", I try and decide where I am in this valley of grief.  I have not accepted your death, a word you abhorred and said it was giving in to MS.  I am no longer in shock and certainly not in denial.  I am a different person and do not cling to this life and earthly existence since you have died.  My perspective has tilted.  I still feel love and pain for your children, and yes even your wife who did the unimaginable and was divorcing you.  I think of all the wonderful events you will miss and have already missed.  Graduations, football games, achievements of your beautiful children and eventually walking Stacia, your clone, down the aisle.  I am thankful for your two beautiful sisters and worry for my husband who has had many health issues since you died.  So, where am I in this life?

RESIGNED...a word that means I've had my core being hollowed out. What is left is a moving, talking woman who partakes of daily existence with half a heart.  Resigned...and not looking forward to seeing this anniversay come for years and years.  Missing you and always, always LOVING you.

Love,
Mom