I didn't know anything about multiple sclerosis (MS) 6.5 months ago. On Dec. 8, 2011 I got a crash course when my 18-year-old daughter had a severe sudden onset that paralyzed her on her left side, and left her blind in her left eye and unable to speak or swallow.
In hindsight, the headaches she was experiencing two days leading up to the catastrophic onset we thought were due to all the studying she was doing for her ACT test were MS-related. The tingling in her fingers that we thought was over-texting syndrome was most likely the first sign of her MS, and happened two weeks before she collapsed.
She dragged herself into my work and I knew instantly something was terribly wrong. She had been tired that day. She went home from school to nap. She missed her cheerleading training that was so important for her upcoming college tryouts. Her left leg was limp, her eyes pleading for help before she even spoke a word. "Mom, I am so scared. I can't feel my leg or my arm. It feels like it isn't attached to my body." She couldn't make it back to the car. Lifting my 18-year-old high school senior into the front seat of my SUV, my head was saying maybe it was just a pinched nerve. But my heart was aching with a knowing that it was far more serious than that.
We rushed to the emergency room. Her inability to move any part of her left side was becoming worse by the minute. By 9 p.m., she couldn't move a finger or a toe, the left side of her face was sagging, and her words were becoming muted. The stroke test was negative. The CT scan warranted an MRI. I was pacing and told the nurse I had a really bad gut feeling. At 10:36 p.m., the ER doctor came into the room that was only separated from the person next to us by a thin cotton curtain. He sat down across from me as I sat bumped right up against the gurney holding Breea's hand. She was medicated by that time and not conscious. "We have found some abnormalities on her brain. She won't be leaving the hospital, Ms. Renee. The neurologist is on his way."
The word "abnormalities" just kept echoing -- his mouth was moving but I felt like I was in an episode of Grey's Anatomy, playing the devastated parent that just got horrific news. But it wasn't a script. It was really happening. The nurse looked at with the "I am so sorry" look and I wanted to throw up, scream, grab my daughter and squeeze so tight that whatever was in her brain making her this way would somehow be gone. I grabbed my phone and called my best friend, my family, and my boss. Life as we knew it faded away in front of my eyes on a gurney in the ER.
After a battery of tests, including a brutal spinal tap, Dr. Jay Rosenberg delivered the diagnosis while we were in ICU. She had lost her ability to feel her bladder or bowels, she could not swallow or talk, and any sudden movement made her heart rate skyrocket. They had to keep her sedated and given any sort of nutrients via an IV. The diagnosis: Severe sudden onset of tumefactive multiple sclerosis, the rarest form of this mystery disease.
Over the next six months, there would be insurance issues that made getting physical therapy impossible. I became her physical therapist and occupational therapist. We used toys and gadgets, cheap supplies from Target, and anything we could find out in nature. Carving her name in the sand with a stick became a great way to learn how to hold something in her left hand again. A child's bubble wand became a very handy tool for all sorts of arm exercises, and tiny cones set up as an obstacle course so she could learn to crawl first made therapy everyday more fun than work. We never went home because there were stairs. The MS Society helped us get into a one-story apartment that was perfect for our new lifestyle, and our friends and Breea's school threw us fundraisers to help us stay afloat since we were getting nowhere with disability or in home support services.
Through it all, Breea kept not only her sense of humor but her drive to succeed, walk again, graduate and go to college just as she had planned before MS. "Feeling sorry for myself won't heal my lesions. Focusing on my dreams and having a positive attitude will give me the strength I need to live a normal life again." I love this kid.
On Friday, June 1, 2012, in her purple leg brace with butterflies on it, she walked with the class of 2012 and graduated with a 3.8 GPA. She is attending NAU in the fall, and has chosen nursing as her major. We know more than we ever thought possible about a disease that is such a mystery not only to us but to the medical community as well. We know there is no cure. We know that they are making advances in developing medications and treatments to slow the progression of this autoimmune disease that attacks the myelin in the brain and spinal cord. We know that 2.5 million people around the world have MS and that 200 more cases are reported each week. One of those new cases is Jack Osbourne.
I hope he chooses to use his celebrity to educate others about this disease. Even though his onset seems to be what is more typical in terms of symptoms and severity, probably relapsing-remitting or primary progressive in nature, it doesn't really matter. Suddenly the world became smaller in a way. Suddenly my daughter, and now Jack Osbourne, is part of the family of people battling MS, the disease that someone told me recently feels like an axe over your head that you never know if or when it will fall.
It is a family of individuals who know that life can change so suddenly. Like all those battling diseases of all kinds, it is a family of those who have been chosen to carry a torch of strength, hope, and extreme resiliency into the lives of others as they glow so brightly with inspiration.
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