Nancy Havernick-Baron, MD
I should never get Alzheimer’s disease. Challenging your brain with new activities and problems is supposed to be partially protective. Living with someone with an evolving chronic illness presents a constant array of new mental exercises. There is never a dull moment. There is an enormous difference between dealing with patients and their problems, and living with someone you love and adapting to his ever-changing needs. Multiple sclerosis is not unique, but is one of the better examples of a disease, which never fails to surprise. It can change overnight and require abrupt adjustments to plans, schedules, and expectations.
Stephen and I have spent over 26 years together due to a fantastic collection of circumstances. Had he chosen to get sick in a different month, we would not have met. Had I been a traditional neurology resident, instead of a child neurologist in-the-making, passing through the adult wards, I would have been prepared for the scenario of dating a patient, and turned down any social overtures. Despite what one sees on hospital shows on television, I am sure that there is an item in internal medicine orientation strongly recommending against fraternizing with patients. I am ever grateful for my lack of that orientation. Had Stephen received the final diagnosis on his first admission, he would likely have been too depressed to fraternize with anyone. So, we are both grateful for the circumstances that allowed us to learn together and build a life together with our two lovely daughters.
When families are confronted with extraordinary medical challenges, they either pull closer together or turn on each other. I see this with my patients, and was determined that we would be a family that pulls together. Stephen has made this option as easy as possible, as he has maintained a positive attitude through most of the ups and downs. As you will see, he almost makes it look like fun to have multiple sclerosis. That has allowed us to see the better side of many people. When given the opportunity, friends and strangers alike have stepped up to offer assistance. Had we not needed the help, we would not have seen that aspect of our friends (and some strangers) so clearly. We would like to think that we would have raised kind and caring daughters under any circumstances, but living with a parent with evolving challenges has contributed to the degree to which they are sensitive to the needs of others.
Medically, multiple sclerosis and its potential for treatment has evolved over the years. Immune modifying drugs started early in the disease have increased the number of people living longer and made them affected less by disability. Many of these advances arrived too late to keep Stephen out of his wheelchair. Stephen has been inspirational to friends, family, and complete strangers. He is a wonderful listener and always tries to find something positive about everyone he meets, and circumstance he is in. Given his physical limitations, he should have lost most of his cherished intellect long ago, but the MS lesions have been cooperative in leaving his intelligence and sense of humor intact, even if they slowly stole his ability to run, then walk, and finally even hold a pen. Had he been a manual laborer, it would have been a devastating array of deficits. Since the essence of his self-image was primarily dependent on his ability to think and analyze, we are grateful that these have been preserved. He will frequently amaze health professionals by his ability to tell them what needs to be done. Typically, most patients who have lost so many physical skills have also lost the ability to communicate, analyze, and think. Just as I have borrowed the knowledge needed to care for my young patients to enhance Stephen’s care, he has provided me with insight, which helps me care for patients. For instance, whereas they can’t tell me what spasticity feels like, he has spelled it out in detail.
The Earliest Chapters Of This Book Were Typed On A Computer Using A Pencil Tip, Then With a pencil Stephen held between his teeth. Finally, the later chapters and revisions were dictated into a computer using voice recognition technology. We are grateful for our amazing daughters, Alexis and Miriam, and all our friends and family who have accompanied us on this journey. We particularly appreciate Dr. Jeff Carmen who grew from a professional colleague into a friend. He was our lifeline to computer technology, the appropriate voice input software, and adapting it our computer. Further, he keeps up with changes needed to adapt to Stephen’s changing capabilities. Without him, this book would have been nothing more than a half completed source of frustration. Further still, he has remained a good colleague and a cherished friend. Other friends have appeared to help at just the right time. Life is good. We have been blessed with interesting challenges, which have allowed us to grow and so many exceptionally wonderful people to help us along the way.