The Changes and Chances of this Fleeting World

I seem to tell people with a cup of coffee in my hand. It’s not my intent, but I guess it is a thing to hold on to.

There isn’t much these days.

I phone people, I try and get to them in person when I can. And sometimes I can’t.

So, it’s been my home office, a hotel room, the other morning from the Starbucks in the Edmonton Airport. A few times in person.

I was diagnosed with relapsing-remitting MS last Friday.

It was a done deal. I had already pulled a copy of the MRI, reading the last line of the radiologists report that said “findings suggest clinical diagnosis of Multiple Sclerosis”. I stared at that line in my living room and then went and packed my suitcase for a work trip. The diagnosis last Friday was a foregone conclusion anyway.

I tell people and God bless each and every one of them, they ask what they can do.

And I don’t know.

And they tell me that I am smart and brave and I can beat this and they tell me that I am so strong.

And then I know what they can do, what I need. I know what they expect – my usual optimism and pragmatism and ‘can do’ attitude. Perhaps they expect me to be devastated, lost, confused and frightened. I have been all of those things at turns.

What I am – mostly – is angry.

Filled with white hot rage.

Is it not enough, I wonder, that I had two miserable and dysfunctional parents and learned to find my way to normal from that? Is it not enough that my son died in my arms? Is it not enough that I couldn’t have another child?

Why is it always me? Why do I always seem to have these things happen to me? What the hell did I ever do to deserve this anyway?

I try to look on the bright side, to reconcile this against the good marriage and great partner that is Mr. Spit, against the wonderful home, the great job, the great friends  . . . .

And I just can’t.

I’m still so angry. And what I most want is to understand why the universe can’t go and pick on someone else. I want to understand why someone else can’t take their turn as the universe’s punching ball.

***Please – I’m sure that you know someone who is living and doing fine with MS. Maybe it’s you. And yes, I’ve read about the liberation therapy, about vitamin D, about yoga. I really don’t need a cheer leader today and I really don’t need suggestions on how to manage this disease. Right now I’m working at a job I love, in a home I love, contemplating the real possibility that I will have to leave my job and I will have to sell my home because it’s not accessible. There is nothing about this disease that doesn’t suck. I don’t need to hear that I’m strong or tough.

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26 Responses to The Changes and Chances of this Fleeting World

  1. Sharon says:

    I have no words. If I were there to give you a hug I would, and you could feel how sorry I am.

  2. Maureen says:

    Be angry. Don’t try to hide it from everyone (the anger). Most importantly, don’t try to hide it from yourself. More generally, don’t try to ‘hide’ whatever your current feelings are about having MS. They will change, and change again, and change again.

    This fall I was talking to a Jesuit priest. What has stayed with me the most was that it is okay to be angry, question, or however you want to phrase it at God when you are upset about your life circumstances. It is not a sign of weakness of you or your faith (necessarily). Until you acknowledge you feel that way, about God and the circumstance in general, it will always be laying beneath the surface.

    Maybe your cup of coffee in your hand is a little bit like Linus’ blanket. While you don’t want to hear about your strength, I see it in how you are talking about it. You are saying you are angry.

    I’m sorry. It sucks. It really sucks.

  3. Mel says:

    No words. Just abiding with you.

  4. Jen says:

    So, so, so sorry. Very best wishes.

  5. Peg says:

    I’m sorry. That sucks.

  6. a says:

    That sucks. I am angry on your behalf.

  7. Betty M says:

    I am very sorry to hear this. Being angry seems to me entirely reasonable in these really shitty circumstances.

  8. Betty M says:

    I am very sorry to hear this. Being angry seems to me entirely reasonable in these really shitty circumstances.

  9. Stacey says:

    De-lurking to say I’m so sorry. The anger seems pretty understandable to me. I hope you are able to find an outlet and a way to feel it and cry and scream however much you need to. :(

  10. Catherine W says:

    Oh Mrs. S. It sucks. It really, really does. I have no words. I am very, very sorry that this has happened. Angry with you and for you.

  11. Aunt Deb says:

    You already know my views on this. Go kick a wall and vent big time. Promise yourself next time you are coming back as a princess and getting the very best of everything. You deserve it. Somebody else got it this life, you get it next time for sure.

  12. Naomi says:

    I am so sorry to hear this. It is grossly unfair and you have the right to vent as much as you need to. We are listening.

  13. Needles says:

    Oh, Mrs. Spit. I’m sending you a great big hug and when you need an up close and personal one, I am not that far away. I can pass you kleenex while you cry.

  14. Dspence says:

    I’m so sorry. This diagnosis sucks and I’m sorry.

  15. Scientistmother says:

    Yes the disease sucks. Life is, in so many ways unfair. I understand the anger. No ideas what to say other than let me know how to help

  16. Ren says:

    F**K – I won’t give you a bunch of platitudes. Apparently there is a higher incidence of MS in our province. It’s a crappy diagnosis, and from what I have seen in other friends, the first months are a huge suck fest.

    Go ahead, get angry, and vent. This is a truly shitty deal.

  17. Linds says:

    Not going to sugar coat anything or say things could be worse or everything happens for a reason or god can’t give you more than you can handle or any of that other stupid shit that people say that makes no sense and isn’t true, especially in such a shitty, shitty situation. Because all of the other shit wasn’t enough?! I’m upset for you and feel this is unjust and unfair. :( Wanted to say I’m thinking of you!

  18. Reese says:

    Thinking about you. Waiting patiently for the next steps. Sending love from Ohio. ♥♥

  19. loribeth says:

    Oh, Mrs. Spit. This is so truly, frickin’ unfair. :p Like Ren, I’ve heard there is a higher incidence of MS on the Prairies for whatever reason, & I certainly have encountered a few people who have it. Some have done very well, some not so well, & it seems to be crapshoot as to how things go. Sending much love & virtual (((hugs))).

  20. Andie says:

    Mrs Spit – I am so sorry to read this and angry for you / with you. I hope that having it diagnosed etc. will help with planning a way forward, and that you have good medical people in your corner to advise. But it isn’t something anyone should have to go through … especially someone who has already had so much to endure.

    Hugs from Ontario ….

    Andie

  21. Brown Owl says:

    When you are ready to talk, call me.
    Till then, throw a few things around and be angry, and yell and scream at the universe….. and when you are done and it doesn’t help… call me

  22. Dipitie says:

    I’m just going to offer you hugs and support

  23. Ms. Fab says:

    I am one of those people you picked up the phone to call with coffee in hand. I have been thinking of you daily since our call. I looked up the purpose of anger and came across a book called, The Surprising Purpose of Anger by Marshall B. Rosenberg, Ph.D. I have no idea if the book is any good but this sentence in the description for the book jumped out at me, “…anger serves a specific, life-enriching purpose. It tells you that you’re disconnected from what you value and that your needs are not being met.” I’m not convinced about the “life-enriching purpose” part but being diagnosed with any life-changing disease would disconnect me from what I value (that is, a disease free life) and my needs certainly would not be met. There is a place for anger in life. Right now there is a place for anger in your life. Go ahead and be angry; let it roll over you and through you. Linger in your anger. That is your entitlement. And just know you are loved.

  24. March is for daffodils says:

    Oh shit. I’m angry, too. It’s not fair. It’s really freaking unfair. I agree with Ms. Fab above, that anger has a real purpose in our lives, is essential and undeniable. All I can really think of to say is the F-word – I say it too much, but it is really bloody warranted in this case.

  25. Jacquie says:

    As your commenter Ren said. Alberta does have one of the highest MS rates in Canada. Along with Saskatchewan and Manitoba. When I was told that by a worked at AB Blue Cross I went “well I guess I was screwed any which way- born in Manitoba and then moved to Alberta” Daammn! What were those odds?
    If you are going to have an MS diagnosis Alberta is the province you want to live in though, only one in Canada that covers those freakishly expensive drugs.

  26. Dana says:

    Oh Mrs. Spit, I just saw your post and I am so angry and devastated for you. My first thought was that you have been through so much already and this is totally unfair. I’m still thinking that. I just can’t believe it. Why you?

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