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.
