I did not intend for this blog to become an outlet for my MS musings. I started my blog with hopes of forming a Line of communication with my children and my nieces. I wanted to share stories about growing up with my sister. I wanted to tell stories about my Mom and Dad. In turn, I'd hoped they would tell stories about their lives.
But alas, young adults do not wish to write and share in the way I envisioned .
But, still, I blogged. I intended on keeping it upbeat and light. I am, after all, basically a happy person. But looking back I see mostly the shadows of MS that slipped into my blogs. And now I realize I need to write about my life with MS.
There is a line from Star Trek movies that has always intrigued me:
"Resistance is futile. You will be assimilated."
I mused over this line when I used to work. It was a good job and I was a good worker. But through the almost 13 years of dedicating my life to a place that was simply where I worked, not who I was, i came to realize the job was not about me. It was about a group of other people who owned the company that employed me. I was merely a cog in the machine that they created to make them money. If I wanted to be who I was, I would have to do it elsewhere. And so I succumbed to this notion of resistance is futile. I worked at that place and collected my paycheck.
I did not at first know what the mysterious ailments were that started to afflict me.When MS slowly crept in and started to steal my life, it took two years for the doctors to diagnose what was wrong with me. Feeling relief that I was not crazy overshadowed everything. But gradually my ability to work became more difficult. If it had been a place where I felt nurtured and encouraged, I would have fought for my job. But working there meant I had to be part of a collective. I had to acknowledge the fact that I could not be what they wanted me to be. I had to acknowledge that I was not one of them anymore. To fight it would be worthless. Resistance was futile.
So I stopped working.
At first I thought wow now I am free! I have the days to myself to do as I please! But MS continued to creep into my life. I thought I would resist. But it took me 3 hours to get dressed. I thought I would resist,but couldn't go out by myself anymore. I thought I would resist, but it is not safe for me to cook alone anymore. I thought I would resist, but my sewing machine lays unused as my hands become less functional.
The Borg:
We are the Borg. Lower your shields and surrender your ships. We will add your biological and technological distinctiveness to our own. Your culture will adapt to service us. Resistance is futile.
The Borg Queen: Small words from a small being, trying to attack what it doesn't understand.
"We are the Borg. Resistance is futile. You will be assimilated."
And so I turn myself inward. I turn to other people who have MS. Their words give me permission to tell the world that I have MS and my life is different from regular people. They compare MS to being caught in a riptide. The force of it takes over your body. The more you fight it, the more it takes hold, carries you off and pulls you under. You must give in. You must release yourself to the tide of MS. Only in that way will you gain anything back to call your own.
Resistance is futile.
Oooh another Trekker!!! The siggie on my emails and forum posts ends with this (as another caffeine addict you will appreciate this lol lol!):
ReplyDeleteSleep is irrelevant.
Decaf is futile.
Caffeine will be assimilated.
Like you, I know the agonies of Limboland, that awful place you enter before diagnosis of a neurological disease - it takes them so long to name it, and in the meantime you either feel you are going crazy (why haven't they found a cause yet) or they tell you you are. Why is it that doctors are so ready to tell you it's all in your head when they don't have all the answers? It would be much more preferable if they were honest and said, "I don't know what's wrong with you."
I had a bout of M.E. many years ago (which then went into remission and only reappeared, much worse, with a flu-like illness over Christmas 2006). At that time, I experienced one of the most humiliating episodes of my life with a patronising neurologist who was clearly testing me for M.S. When nothing showed up, I was told I needed counselling... I KNEW there was something physically wrong, and the frustration of not being believed was truly horrible. Also, the family of course believed the "expert" and didn't believe me either.
My first thought, on becoming ill again, was not "Oh no, I'm ill again," but "Oh no, I've got to go through the humiliation of not being believed again." This time it was better, though, and nobody suggested it was all in my head, but the first neurologist I saw treated me so rudely, not making eye contact, being extremely brusque, not explaining what he was doing, ordering me about, etc. I waited months for that appointment and felt I'd got very short shrift. He put me in for an MRI and Evoked Potentials tests and when these came back clear, he wrote to me and said "You haven't got MS. I don't want to see you again." Not "You haven't got MS. I don't know what it is, but let's try and find out." I got a second opinion (with a totally different attitude) and was diagnosed at once.
It's adding insult to injury, to have an existing physical problem, and have the fear of craziness heaped on top of you as well.
M.E. is similar in that the more you fight it, the more it attacks. It is hard to explain this to people, who think you are giving up. I have learnt the difference between giving up and acceptance. With acceptance has come peace, and the learning of coping strategies and management, to keep me as well as I can be. It is part of my life, but not the most important part - it doesn't define me.
Shoshi