David Ben-Gurion said:
“Anyone who doesn't believe in miracles is not a realist.”
I am a realist.
In 1999, I was too young, too busy, and I felt too good to have Multiple Sclerosis.
A realist would know that a couple of bladder infections didn’t mean anything. They were cured with antibiotics.
Hitting the wall, as I tried to turn a corner, wasn’t a sign of MS.
I was just clumsy.
I had been a nurse, so I knew that people with M.S. are in wheelchairs.
I had been a trial attorney. When I did closing arguments I stood before the jury without assistance.
The truth is that I did have Multiple Sclerosis.
There was no cure. There was no explanation about how or why I had M.S.
My M.S. doctor said I should take a medicine that required an injection every week.
As a nurse, I’d given many patients injections, but jabbing myself with a 2 ½ inch needle took courage that I wasn’t sure I had.
The visiting nurse encouraged me to show my kids the syringe and needle. Katie, my youngest, who was 5 at the time. She was the only one who wanted to use the syringe to give an orange a shot.
Anna was 7 ½ years old. Zach was 10.
They were old enough to be scared of their mother stabbing anyone with a needle.
For almost 10 years most people didn’t even notice that I had a disability.
When I became heat intolerant I adapted. I brought an ice chest to Katie’s softball games filled with wet, cold hand towels. The other mothers thought that I was a great mother because I was worried about the kids overheating.
I was really worried about me.
If I appeared a little wobbly when I walked, my only real concern was being stopped by police and being asked to pass a field sobriety test.
As time passed my symptoms got worse. My right foot began to drag on the ground. Taking a shower was so exhausting, that I had to take a nap afterwards. David, my husband, would be gone to work before I even got out of bed.
I had to limit myself to one errand per day. I cooked dinner less often. Instead of a five course meal, David was happy to get two.
David was sorry to get fewer home cooked meals, but he was glad I wasn’t shopping any more.
In 2008 I sat in a special room, once a month, with fellow M.S. patients for an IV infusion of the latest medicine. I was the lucky one. One patient was going blind. One was so afflicted that he couldn’t lift the medicine cup to his mouth. Another arrived in a wheelchair that had a head support because the patient was too weak to even hold her head up.
In 2010, I began using a walker.
It wasn’t that I was embarrassed. I simply felt that I should fight to remain independent as long as possible.
The turning point came as a result of falling in gravel after a board meeting at Katie’s school. It was dark. Nobody saw the tear in my pants. My tears weren’t the result of the pain in my knee, but the sheer frustration of realizing that I could no longer pretend that I could walk without assistance.
I had fallen before, but this fall was the result of not only balance issues, but sheer weakness and fatigue.
Katie was a Junior in High School at the time. It wasn’t a problem to go to her basketball games, on the second floor of the gym. They had an elevator. I still got to see my friends at the games because they would come down to sit by me on the floor level bleacher.
When Zach graduated from Yale in 2012, I was so proud. Yale had special seating for the disabled, so I got a seat right at the front of the ceremony.
The next year I returned to Yale for Anna’s graduation.
Now, my MS was bad enough that I couldn’t walk the long distance to the courtyard. The good news is they had a wheelchair we could borrow. I got a great seat with the grandparents who also needed to use wheelchairs.
In 2013 I fell in the middle of the night after walking a few feet towards the bathroom without my walker.
Until that time I thought I could simply hold onto a counter. The reality is that even adults do stupid things.
I fell and broke my leg.
For the next 6 weeks I had to live in a wheel chair. We installed handicapped railings in the bathroom. When my leg healed and the wheelchair was no longer required, I gained a new appreciation for urgency of never becoming dependent on a wheelchair if I could avoid it.
Muscles that I had previously used for walking had atrophied.
I knew it was time to get more aggressive with my MS treatment.
The combination of my research skills and nursing background enabled me to locate and process a vast amount of information from around the world on new therapies for M.S.
Stem cell therapy seemed the most promising. Of all the physicians in the world, Dr. Karussis’ research at Hadassah Hospital in Jerusalem seemed the most promising. His scientific method was sound. His results were exciting, and verifiable.
Side effects seemed unlikely since he used the patient’s own stem cells taken through bone marrow extraction.
All of the medications for M.S. are prescribed HOPING to simply arrest the progression of the disease.
Some of Dr Karussis’ patients had actually improved!
Dr. Karussis is the Rock Star of Stem Cell Therapies.
On my first visit with Dr. Karussis, I met him in his in his very modest office which is in the older part of the hospital. It was obvious that the money raised to support his research was being used for the research, and not renovation of his 1950’s office.
When I arrived at the new hospital for my first stem cell infusion I was greeted by the incredible Chagall windows, the sparkling new hospital, and the attentive nurses. Both the facility and the medical care were state of the art.
After my first stem cell infusion I realized immediate benefits…in less than 24 hours!..
My speech improved. I had enhanced strength in my weakest leg, and improvement in fine motor skills. However the greatest change was a profound difference in fatigue.
Upon returning from Israel, instead of being jet-lagged I was energized. The first day back I took a shower, unpacked, worked on my blog, arranged flowers, and cooked a big dinner. I stayed up till midnight watching television as I started to crochet a new blanket. Poor David was asleep. … He had a bad case of jet lag.
When people see me walk with a walker, they realize I have some type of disability. They feel sorry for me. They open doors, bring me food, and strangers help me up when I’ve fallen.
The truth is that I am lucky. I’m not dying. There are so many diseases so much worse than M.S. There are so many M.S. patients that are so much worse than me. I have the blessing of great family.
My children are still embarrassed by the disco music I love, but they are never embarrassed that their mother walks with a walker.
My first husband and I have shared a sense of humor for 31 years. If I ever feel down about what I can’t do, he reminds of what I can. When we were young, he reached for my hand to take me out onto the dance floor. Now he extends his hand to lift me up when I have fallen. When David promised to love me in “sickness and health,” I failed to appreciate the importance of that commitment. I do now.
The stem cell research of Dr. Karussis is not a miracle, but the reward for years of HIS devotion and dedication to scientific research. The miracle is that he agreed to allow me to participate in his study.
Imagine my elation when Dr. Karussis determined that eye movement studies I had done for years in Dallas, migh help his research in Israel, by providing objective measurements of improvement. After each stem cell infusion, my Dr. in Dallas repeated eye movement studies on me. Each time the tests showed improvement. I am still advancing medical knowledge about Multiple Sclerosis. The miracle is that it is helping me!
I may never walk without assistance, but I am a realist who believes in miracles. After I returned from Israel, following my second stem cell infusion, I actually had a dream that I was walking on the beach with David and the kids. The fact that I was walking in the dream, without a walker, didn’t seem remarkable. It didn’t occur to me that I had ever walked with a walker,,, or that I hadn’t walked on a beach for over 6 years. It was something that I did, just like everyone else in the dream.
Hadassah Hospital, and Dr. Karussis, have given me the miracle of hope that my dreams will become a reality.
Jonas Salk said:
“Hope lies in dreams,
and in the courage of those who dare to make dreams into reality.”
The women of Hadassah, …the women who do,…and Dr. Karussis have made my dreams become a reality. They were creating miracles before I knew I needed one!