It just breaks my heart that the title of this article is the number one search phrase that landed visitors to Sunshine and Moonlight within the last 30 days. In a way though, I’m happy that these searchers landed here – a place that promises to be positive without mindless optimism. But none-the-less, while checking my blog stats this weekend, I was saddened to be reminded of how those newly diagnosed with this terrible disease feel.
I remember those days in the hospital, those three, long days while waiting for an official diagnosis. I remember going through every test imaginable and breathing a sigh of relief when hearing the negative diagnosis that followed each (no brain tumor, no pituitary tumor, no heart problems, no clots or blockages, no stroke and on and on). Since everything else had been ruled out, I knew in my heart of hearts, by the end of day two, that I was going to hear those words: “You definitely have M.S.” by morning. And, that’s exactly how it all played out.
As I’ve told the story numerous times before, my laptop was with me at the hospital, so by the evening of day two, I began a little bit of research. I, too, wondered (if it really was M.S.) if I would die. I wondered if I’d end up in a wheelchair. I wondered about my future. I was scared beyond a level fathomable to my mind or my body. At least when I had cancer, I knew my prognosis and what I needed to do to beat the thing. Everything I read about M.S. shouted “UNCERTAIN FUTURE” to me.
While checking up on my recently neglected blog, I then read a comment from “Lani” on the article about the Spoon Theory. She wrote: “I live with permanent brain damage (brain stem) and although to many people I look and sound ‘normal’ and ‘undamaged’ spoon theory absolutely describes what each day is like for me as well. So often other people’s attitudes toward those of us with disabilities are the hardest things to deal with. Referring them to spoon theory is extremely helpful in their gaining some insight into what each day is like for so many of us.”
Lani speaks for so many of us, doesn’t she? I only hope for a day when those who suffer from permanent brain damage from M.S. can go through life without the challenges facing them. The only day I hope for more is one where no one, ever again, visits the internet to ask: “Will M.S. Kill Me?”
This is sad. In general people know very littleabout MS. When I was diagnosed I knew nothing. I was thinking “Jerry’s Kids.” Shows what I knew.
Now I say, “what doesn’t kill us makes us stronger.”
Eventually something kills us all. (For me, it’ll probably be an abscessed tooth, but I mean to do all I can to cope with really bad teeth.) I know you are doing your best to live with your disease as well. Meanwhile, you are performing a wonderful service in your blog for others , both those with MS and whose who may not have MS, but have someone close to them who does.
Kim-
Thank you, thank you, thank you!
I know that keeping up this blog takes time and for that, I just wanted to say Thank You! I was recently diagnosed (March of this year) and of course, immediately hit the internet. Perhaps not the brightest idea. You’re quite right…there’s a lot of negativity and a reader can scare herself silly pretty easily. As I figure out what my personal “new normal” is (and realizing that may change on a daily basis), it’s been helpful to come visit Sunshine and Moonlight. Going back through the archives has been wonderful…I’ve enjoyed not only your writings but the comments from others as well.
Thank you for all of the medical info, your personal insight and your honesty. As much as I wish none of us had MS, it’s comforting to know that there are other people out there that can commiserate.
What ever it may be: a tooth, a car, a stray or aimed bullet, we all will get safe harbor some day and some way. However, some of us will not have had the opportunity to touch as many people and in so many ways as you have. If you should be called today, your work here can be said to be complete and well. Live, love and be happy for you deserve it all.
Love ya,
Dad
Amen!
Live, Love and be Happy, thats what I am trying to do.
I’ve had to find my new normal, sometimes it’s not easy thats for sure. But life goes on, with or without MS.
Kim,I appreciate what you do here, thank you!
In Trevis’ Everyday Health Blog on MS some time back, he wrote a topic about MS and statistics of “it” being the cause ofdeath on a death certificate – it was something like 47% (I think).
Death is not talked about as a matter-of-fact thing in western society. As a result, we shy from discussing it as if it were taboo or as though talking about it might make it happen. Well, they say the only thing we know for sure is that we’ll pay taxes and die, but actually, the only thing we really, really know is that we’re going to die. So, I say, discuss it and be with it and it might not be so scary; but a part of life that is natural and known.
Hugz, Rusty
My name is Tanya, I’ve had the monster [MS] for 15 yrs. I just read “The Spoon Theory” WOW! It is so true, I made copies for my whole family. I’ve never been able to explain how I feel, that said it all. Thank you for this site I love it! God Bless