After three days of cell phone malfunctions, misunderstood messages, and aborted communications, I spent today with my daughter Katherine at her home and learned more about her unexpected trip to St. Louis University Hospital.
Suddenly I understood more. Today For the first time I heard the work "attack" or what in multiple sclerosis circles used to be called "an exacerbation."
I felt better also that although her own MS doctor was out of the country, she was seen by several excellent doctors. She came home with a sheath of prescriptions, some suggestions/equipment, and a follow-up appointment in a couple of weeks. The problems are still there and will continue to be there unless there is a remission of the attack, a remission of the disease,or a miracle.
Living a life filled with pain is very difficult. Pain is invisible. And immeasurable. People don't understand what cannot be seen. Those without imagination or empathy are quick to accuse a pain-filled person of maligngering. One of my favorite MS stories, is about the neurologist, who many years ago was invited to speak to a group of people with the disease, and he told them MS did not cause pain. He was almost hooted out of the room, and all I could hope was that he learned how wrong he was. Needless to say, people in that group did not want him for a doctor. Nor do I.
It is easy to sympathize with a broken limb; it is much harder to understand pain. A frequent lament in MS periodicals is the common reaction that those with the disease have when they are constantly told, "But you look so good." They want to look good and they work at it. I have asked, "So why aren't people with MS happy when someone says they look good?" I think it is the locked-in loneliness of knowing that no one can understand how bone tired and exhausted they are and how much they hurt.
(When I had the sciatica problem in December and was asked to label the intensity of the pain from l to l0, I wanted to hit someone. The question struck me as ridiculous. If someone needed to know the answer to that question, I wanted them to give me a test to tell me if the pain was from l to l0--not me deciding what it should be called. However, as the month progressed, I learned I could do it: somedays it was 9 and l0 and somedays 5 and 6. When I wake in the mornings now, somedays it is 1 and somedays it is 2. Usually it goes back to 0 during the day, but sometimes continues or comes back later in the day as 2 or 3. If you want to disagree with the number I have chosen, I challenge you to prove me wrong. Ha.)
I remember when I first realized a few years ago that Katherine lived with almost constant pain. She did not tell me. I saw it on her face as it changed to secretly record what she was good at acting was not there. Interestingly, as time passed, that subtle change in her face went away. Maybe she became more skilled at smiling to prevent the facial skin from recording the pain. Maybe she just became more skilled at accepting and handling the pain--because I knew that pain was worsening all the time as spasms increased and muscles stiffened and the myelin deteriorated.
I have long prayed for medical researchers. I also pray for my daughter's recovery and I pray for her personal miracle. I know miracles happen. However, the miracle produced by medical researchers is one that will aid multitudes with a particular disease. My heroes are those who submit to the agony and hard labor of intense study and to the discipline of continuing after failures to find the treatment for and the cure of and, best of all, the prevention of diseases. So many medical advances have already been achieved, and I long for the day when the smartest among us can lessen and eliminate MS, cancer, chorea, epilepsy,lupus, autism, fibromyalgia, neurofibromatosis, diabetes, depression, Schizophrenia, bipolar, and all diseases including those called orphan diseases, which lack research dollars because so few humans have those rare diseases. Even eczema can be life changing and devastating I am learning from a friend handicapped by it. How grateful she is for finally finding a doctor who offers a diagnosis and a solution.
While we tried to catch up on laundry accumulated during the travel and other needed tasks at Katherine's house, Sam's cousins whom he had stayed with while his mother was in the hospital were brought by the house after lunch. Although nothing can take away the pain he has because of his mother's illness, we hope distraction takes his mind off of it and softens his awareness and adds happiness during sad times. Those three kids played their hearts out, and I did not hear a cross word between the three. Sometimes they were in the house and sometimes out in the heat and we would occasionally check on them, but they were too busy having fun to pay much attention to us. There were almost too busy for even a bite of supper. Then I took them all three out to the camper at Wayside Farm, where Brian was mowing the lawn but was prepared to let them make s'mores over the campfire. David had Samuel carry along some of the left-over s'more fixings from their recent vacation trek out West. What wonderful memories of camping at the farm these cousins are going to have! We are grateful to Brian.
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