Many years ago my older brother gave me that nickname – after a dog. Our Dad had a shop where he made awnings and other canvas items. Mutley was a dog that belonged to one of Dad’s employees. He was a mutt [a very mixed breed], but sweet and so faithful. You could tell time by that dog. Every afternoon at four o’clock he’d show up at Dad’s store just when his owner was getting off, and escorted her home. He’d even show up on her days off. It didn’t matter that we told him, “Mutley she’s not here.” He would still go around to her sewing machine and check before trotting out the back door.
Did my brother think I had an odd mixture of characteristics? He knew I had a silly side, since we shared an appreciation for whimsical things [unusual; imaginative]. Often we would laugh until we cried over some little thing. He also knew I was curious and highly imaginative, but also serious about becoming a good nurse. So, why the name? I’m not sure and can’t ask him. He died in 1993. His name was Sam and I miss him, but will always cherish his ‘whimsical’ gift. Only Sam, his best friend, and Dad ever called me by that name.
I was born in Queens, NY and spent most of my years on Long Island [NY] – where a beach was never too far away. Presently my husband and I live in Central Florida – land of sunshine, critters, and friendly folks who say y’all. For years I thought the words ‘needs beach’ must be printed in my DNA, but lately things are changing. My husband and I are looking for a country home with awesome mountain views. Of course I’ll probably have to decorate this home like a beach cottage.
For a few years my life was moving along according to plans and goals, but over a two-year period I was slammed by two totally unexpected diagnoses. In 1982, almost one year before I finished college, I was told I had Essential Thrombocythemia [ET – an elevated platelet count]. That shocked and scared me and my family, but I was able to have a normal life by taking oral chemotherapy everyday.
Then in 1984, about one year after graduating, I suddenly became terribly dizzy; started dropping things and bumping into walls; and was numb head-to-toe on my right side. I thought I was dying and even made out a Will. When I finally saw the neurologist he told me,”You have Multiple Sclerosis [MS]; you’re a textbook case.” That struck terror into me for many reasons, but here are the two that stand out: 1st – He said that aside from steroids there was nothing more he could do for me. And 2nd – Shortly before my diagnosis I was training in the Intensive Care Unit [of the hospital]. One of my last patients had MS, was bedbound, and wasn’t able to do anything for herself. I wondered if that’s where I was headed.
Back then, if there was any information on how to live with MS, I did not know about it. And there weren’t many treatment options. I settled on taking Prednisone [a steroid] for a few weeks. I also took the neurologist literally when he said he couldn’t do any more for me. That forced me to research material and find ways to not only feel better, but try to put the pieces of my life back together. My family helped tremendously by giving me acceptance, a fighting attitude, and tough love [limit those pity parties]! Over the years I’ve experienced and learned many things. In this Blog I want to share some of them.
I’m actually thankful for MS. Never would I have chosen to have it, but it has made me a better person by: making me pay attention to and learn about what makes and ruins good health; shaving off unpleasant parts of my personality and attitude; making me notice and care about others who are struggling; and strengthening my relationship with God.
In those early dark days I wondered if my hopes and dreams were over. Would I ever be able to work and support myself again, or would I have to move back home and be dependant on my parents. It was then that I told God: “I don’t know what all of this means, but I’m going to hold Your hand through it.” There were times I was so hopeless that I nearly let go – but He never did!
Things did improve and I was able to return to my life and career. And for over ten years, as symptoms allowed, I worked as a Registered Nurse in hospitals, day surgery, teaching, and home care. And during those years I even discovered that I had a gift for noticing things. In a flash, I could recognize subtle changes in smells, sounds, sensations, and appearances. But in 1995, because of increased weakness and too many falls, I finally had to stop working.
Being at home allowed me to do more reading and researching on MS and health in general. I was better able to understand materials because of my Nursing background, plus my fascination with pathophysiology, microbiology, epidemiology*, and all the other sciences I enjoyed so much during college. I love learning. It’s a true adventure. But what’s even cooler is sharing discoveries with others. That gives me incredible joy!
So, for many years I’ve been researching topics, writing short papers, and sending them to family and friends who might need them, and even to a few strangers who asked me for material. Now, in response to my cousin’s suggestion, I’m taking sharing to a totally new level – the Internet. Blogging is new for me, but I will do my best. I truly hope that you will find something helpful in these posts. Please feel free to send your comments. But please, no profanity or vulgarity. I will try to respond as quickly as possible.
Some of Regina’s Favorite Things
Helping others, eating delicious vegetarian food, desserts, smiling at adults and kids, bike- riding, swimming, the beach, collecting shells, lighthouses, the colors turquoise and fuchsia, writing and telling children’s stories, orchids and other tropical plants, singing Broadway show-tunes, my cow hats, and Hello Kitty.
*Pathophysiology – studies the obvious or hidden changes that gradually take place in the body as disease develops.
* Microbiology – studies living plants or animals that are too tiny to be seen without a microscope [EX: bacteria, viruses, etc.].
*Epidemiology – studies the spread, control, and the prevention of diseases in a group of people, as well as other health-related problems like accidents and air pollution.
© 2011 Regina Spence