David Ben-Gurion said:
“Anyone who doesn’t believe in miracles is not a realist.”
I am a realist. In 1999 I was 41 years old. I knew I was too young, too busy, and I felt too good to have M.S. A realist would know that a couple of bladder infections didn’t mean anything. They were cured with antibiotics. I’d always been clumsy, so hitting my shoulder as I turned the corner to walk into another room wasn’t surprising. Gracefulness was not a requirement to be a good mother to three children. When my internist sent me to have an MRI, I thought she was just trying to help the hospital generate income. 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 of a cane, a walker, and certainly not a wheelchair.
I did have Multiple Sclerosis. There was no cure. There was no explanation about how or why I had M.S. Dr. Frohman, my M.S. doctor, said that my best chance to stay functional was to take Avonex. Avonex required an injection every week. 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 the kids the syringe and needle. Katie, the 5 year old, was the only one who wanted to try 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, refreshing hand towels. The other mothers thought I was worried about the kids overheating. I was really worried about myself. When I always arrived early to the kids’ events at school, other parents thought I was punctual. Instead I knew I needed additional time to stop and rest on the bench in the hallway.
As time passed my symptoms got worse. My right foot dragged on the ground. Taking a shower was so exhausting, that I had to take a nap afterwards. David would be gone to work before I got out of bed. I had to limit myself to one errand per day. Instead of fixing my husband dinner five nights a week, it was often only two or three nights. Instead of a five course meal, he was happy to get two. The good news was that we saved a lot of money as it was too difficult to go shopping. The kids had to open jars for me. David and the kids called to check on me every day when they were on vacation.
I tried different medicines. For two years 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 patient walked in with a walker. One was so afflicted that he couldn’t lift the medicine cup to his mouth. One patient arrived in a wheelchair that supported her head.
It wasn’t until 2010 that I had to use a walker. It wasn’t that I was embarrassed to use a walker, 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 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. When my car died, I had to get a car with an automatic hatch back since I was no longer strong enough to lift my walker into a trunk.
Katie was a Junior in High School. It wasn’t a problem to go to her games even though the gym was on the second floor. They had an elevator. I still got to see the other mothers at the games, because they would always 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 near the front. The next year I returned to Yale for Anna’s graduation. Now instead of walking the long distance to the courtyard with my walker, I had to use one of their wheelchairs. I got a great seat with the other grandparents in wheelchairs right in front of the graduation stage.
It was Spring Break for Katie in 2013. It was such a treat to have her home. Two days before she left to go back to school, I fell in the middle of the night after walking a few feet towards the bathroom without the 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 not becoming dependent on a wheelchair. Muscles that I had previously used for walking had atrophied and were quite week.
Having experienced the debilitating effects of being dependant on a wheelchair, I decided that there was an urgency in exploring any treatment that might prevent me from becoming wheel-chair bound. The combination of my research skills and nursing background enabled me to locate and process a vast amount of information from around the globe on new therapies for M.S. Stem cell therapies seemed the most promising. Of all physicians in the world, Dr. Karussis’ research seemed the most impressive. His scientific method was sound. Not only were his results exciting, but they were also verifiable. Because he used the patient’s own adult stem cells, it seemed that there was minimal risk with his approach. Dr. Karussis is the Rock Star of Stem Cell Therapies. All of the medications given to M.S. patients are prescribed with the hope of simply arresting the progression of the disease. For many patients, Dr Karussis’ stem cell therapy had been shown to actually reverse some of the devastating effects of M.S.
After my first stem cell infusion I realized immediate benefits, including improvement in speech, 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 full day back I took a shower, 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. 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 or disease. They feel sorry for me. They open doors. People at parties offer to bring me food. When I park in a handicapped spot, they aren’t so resentful that they have to park further away. I have learned to be gracious and simply thank everyone who has tried to help. 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 have much worse disabilities than I do. I have the blessing of great family. My extended family comes at least twice a year for a bridge weekend. They are glad to lend a hand when I need physical help, but they cut me no slack if I make a mistake when playing a hand. 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 me how to laugh about 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. David has accompanied me on every trip to Israel, to make the trip as easy as possible. When he 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 represents 20 years of hard work and persistence. His revolutionary new treatment for MS and ALS is not a miracle, but the reward for years of devotion and dedication to scientific research. The miracle was that he agreed to allow me to participate in his study when thousands of patients were begging to participate. When I spent hours volunteering to be a subject in Dr. Frohman’s eye-movement research, I didn’t expect any benefit to me personally. I simply wanted to do my part in to assist in the advancement of medical knowledge about Multiple Sclerosis. Imagine my elation when Dr. Karussis identified the potential that my baseline eye movement studies presented a unique opportunity to verify the benefits of his research. After the stem cell infusions Dr. Frohman repeated the eye movement studies. They had improved. I am still advancing medical knowledge about Multiple Sclerosis. The miracle is that it is helping me!
Katie is graduating this year from college and hopes to go to medical school. She can’t remember a time that her mother didn’t have M.S. Zach is working on a PhD in organic chemistry at Berkley. He has always approached M.S. in a very scientific way. Anna is a natural gas trader in Houston. She came to Dallas to visit for Mother’s Day. She wasn’t embarrassed to push me in a wheelchair around the Dallas Arboretum because she knew it was too far for me to walk, even with a walker. The miracle is that I had the energy and desire to go to the Arboretum.
Jonas Salk said:
“Hope lies in dreams, in imagination, and in the courage
of those who dare to make dreams into reality.”
I may never walk without assistance, but I am a realist who believes in miracles. Since I returned from Israel after the last stem cell infusion, I dreamed that I was walking on the beach with David and the kids. The fact that I was walking in the dream 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 since I started having to use a walker 6 years ago. It was something that I did just like everyone else in the dream. Hadassah Hospital, Dr. Karussis, and the Women of Hadassah,…the women who do,…have made my dreams become a reality. You were creating miracles before I knew I needed one!
This is Dr. Karussis of Hadassah Medical Organization
These are two recent articles on his amazing stem cell treatment for MS and ALS: