Today's post is about A Thief In the Night. We all have at least one. The most familiar one is aging. It comes on so quietly, stealthily, and changes your life when you least expect it. All of a sudden the strength of muscle that has just always been there gets stolen. And, you have to work really hard to steal it back. The Thief may steal some reliable reflexes that you never knew were there, but only learn about because now they are gone.
For humans of all ages, one can get thrown a disease that rides piggy back on the other Thief of the Night. My Thief in the Night riding piggy back on the Thief of Age is the one called Multiple Sclerosis.
The Boston docs who tend to me believe I have had MS since I was 19 or so, and I am 61 now. At 17 I had a case of mono that my pediatrician described as the worst case he'd ever seen. After that, nothing was the same for me. Through my college years, my Mom took me to doctor after doctor, saying "she's just not been the same since that case of mono." Eventually my Mom gave up.
In my late 20's when I started having episodes of being really far off, I went to doctors, who each sent me on my way. Two years before I was diagnosed (in 2004) I had a long-time Primary Care Physician hold my hand, look me directly in the eyes and tell me "I assure you, dear, there is nothing wrong with you. Perhaps you need an antidepressant." And, perhaps I should have stabbed him in the eye, but I missed that opportunity.
In spite of "never being the same," I carried on, leading a fabulous life. Raising our children, traveling, caring for my parents, gathering with friends, enjoying a life in the outdoors. All of it done fully and with great joy. Except for those times when something was just not right. During those times I continued to carry on with great joy, I just had to push really hard. Today, there are times when I am glad I did not know that those difficult times were relapses of Relapsing Remitting Multiple Sclerosis. If I had known, perhaps I would have given up and missed out on the joy of raising Paul and Anna with hiking, skiing, weeks at the beach and on lakes, travel, and especially with family dinners served every night, 6:00 p.m. sharp. What a gift those times were and still are, as memories which sustain.
In 2004, when I started to have cognitive loss I got really serious with the doctors and the diagnosis came. Multiple Sclerosis. And, that's not all. It had become the untreatable Thief called Secondary Progressive Multiple Sclerosis, which occurs when Relapsing/Remitting is around and untreated for too long of a time. Secondary Progressive MS never goes into remission and rarely takes a break.
Once the specialists established care and understanding, they took vials and more vials of my blood, sending them off to studies linking the Epstein-Barre virus as one of the causes of MS. Epstein-Barre causes Mono. This does not mean that if you had mono that you will acquire MS someday. There are many other factors that must be present with that virus to form the perfect Thief in the Night.
So, here I am, and the Thief in the Night, who has been pretty quiet for the last few years, must have overdosed on caffeine, because it is up all night, stealing things from me and leaving pain as a gift in the empty places. I am not grateful. I am sad.
I don't think you will any longer see me dive off a boat on the lake or see me hauling onto the lake all of the gear with which we protect the loons' nesting sanctuaries. I've got others that will take my orders and haul. I think I will enjoy that. When you see me walk the path from our house to the lake, I might have a walker, I might have braces on my legs. You might see me just plain walking. I know you will hear me laughing, I think you will hear me sing, and I know that you will see me try. (Stolen and paraphrased from Losing My Religion, R.E.M.)
You will always see me living as well as I can, laughing often, enjoying the outdoors, and loving my family and friends. Dave, Anna and Paul, along with our family critters, are my reason for being.
You will see me continue and expand my "Loons of Northwood Lake" speaker series which I started last year at the Boy Scout camp on our lake. Come hell or high water you will see me in my red mahogany boat, on the lake alone, sun-kissed and happy. I have no idea how I will get out of that boat, but I will. Bailing myself over the side at our waterfront is a real option. I will use my boat to visit friends' docks on the lake and to carry on with my mission of speaking at some point to every resident on Northwood Lake. About Loons.
When I am in Beverly for the winters, my life will look the same to those on the outside. My hobbies and volunteer work will continue. And I'll continue to go out an average of one evening a month. I've never been a night owl. You will not see me in my grey Ford Escape, as I no longer drive. You will see me in a Pearl White Escape, with Dave as my driver. Occasionally I'll go all modern and get a Uber ride.
My knitting and quilting days will go on forever and I will share those hobbies here. Those insanely difficult HUGE quilts that I'm known for will get a bit smaller, and a lot easier. Thank goodness for that. And those totally insane intricate knitting patterns? Check those off the bucket list as done. I prefer the easier patterns now... I love them.
As I carry on with the things I intend to do, I must remember that it is I who named this blog Indomitable Angela. And that is something to live up to. One thing you will not see me do is fill a blog with stories of MS. This post is it, folks. So, read it and move on, as I've written it and moved on.
A phrase that my kids often have often hollered to me, I shall say to those whom I reach with this Blog..... "Watch This." Every time I've heard or hear that phrase from Paul or Anna, I have always Watched This, because I know it means something amazing, hysterical, brilliant, totally insane, and at least just plain fun is about to happen.
So, to spite the Thieves in the Night, I say .... Watch This.