Sunday, March 18, 2018

Sometimes

Sometimes, it doesn't matter that you've made such great progress on a sweater that you think you might get to wear it before it's too warm to do so. Because the universe had other plans.


Sometimes, it doesn't matter that you bought a fabric bundle for the first time in ages because you saw a picture of a quilt using it and got a bad case of the must-haves. Because the universe had other plans.


Sometimes it doesn't matter that you're not very good at something; it can still be therapeutic and fill the hours. Because the universe had other plans.


And sometimes it doesn't matter who gave you flowers on Valentine's Day (a right loony-toon, if you're curious, haha). When the universe has other plans, it matters who gives you flowers after your world turns upside down.


Because sometimes, vertigo isn't vertigo. At all.

I've written and rewritten this post in my head a zillion or so times. I've struggled with putting this out there in the world. But we've been pals for a while, so I thought I'd share.

About three weeks ago I was rushed to the emergency room in the middle of the night with tingling and numbness down the left side of my body, and eyes that wouldn't sit still. It was a struggle to open my eyes to do anything; if something can move in fifty directions at once that's what EVERYthing was doing. I was fairly calm, yet terrified at the same time (can that happen?).

I was poked, prodded, scanned, scanned with contrast, scanned again, and asked for a sequence of events enough times that if they asked me again I might have said "Just read what the other person *%@#$^ wrote!!!" I had a lumbar puncture with one cranky guy ("Sit still! You're moving!"---OK, guy with a needle in my spine while I can't even sit without someone holding me up. Calm yourself). I had a very hasty neurologist fire questions at me like a drill sergeant ("What's in your left hand? What's in your right? Is this sharp? Is this soft? Come on, come on, is it soft?"). Not to mention the usual hospital antics (gowns with slits in the back, assisted bathroom breaks, being woken up every two hours for vitals, injections, and what have you). And phrases I never thought I'd say to my mother ("Mom, this is Tom. Tom gave me a bath and I didn't make him buy me dinner first").

So, after being told I don't have Lyme disease, or lupus, or meningitis, I learned that I DO have multiple sclerosis (MS). If I wasn't already on my back in a hospital bed (for almost a week), this would have knocked me over for sure.

All of the things they said can contribute to this are not present in my life (smoking, family history, harmful environmental factors like working with chemicals, etc). And there's nothing you do to cause it. You just go to bed one night like you usually do. Then you wake up feeling weird, and a week later you're sent home with a walker, and instructions on how to inject yourself.

It took almost two weeks for this to fully hit me. Each day was a struggle and a triumph. I'd feel myself getting better, and then I'd have a wee setback. But for the past few days, I've been moving along unassisted (a bit slower, and sometimes unsteady), but making good progress. After putting on no makeup and having my hair pulled back, I'm back to my normal look (including contact lenses and mascara). My vision is back to normal. And the skull-crushing headache I had for ten days has finally gone.

I'm still bewildered. I'm still not OK with this. I'm still angry. And I'm still scared.

But I'm still me. My hands still know what to do. And yarn and making things still calm me and feed my soul.


A pile of granny squares has proven a triumph. The first few felt foreign, as though my hands didn't know what that hook was for. But that wee pile there has grown even more. As I stitch, my brain ponders what it wants this blanket to look like on the flip side. A riot of color? Color muted with a neutral? Anything's possible. Because the universe might have plans, but I have other ideas.

13 comments:

  1. F*ck. Oh hon, I am so sorry. I have been taking this in now for 20 mins and rereading your post to see if there isn't a punchline, or a 'nah, I am just allergic to bananas' in the end. Having said this (I did some creative Dutch cursing on your behalf) I don't believe in much, but I do believe that the medical world comes up with new treatments for serious diseases everyday. And they are much better at monitoring this than they were 10 yrs ago. So who knows what will happen in the next few years to help you!! But for now, it's alright to be completely gobsmacked and to take time to get your head around all this. Half the world away and thinking of you!! X

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    1. Thanks, Esther! Feel free to teach me some of those Dutch curses!

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  2. I've been following your blog for a couple of years now; I started because I live near Philadelphia, and noticed that you do, too. I'm so sorry to read about your illness. Like the previous writer, I have a lot of faith in medical science, and hope that something will be discovered soon to make this better. Stay strong, and know that your followers, and lots of others, are wishing you the best

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  3. OMG Bethany, I couldnt believe what I was reading. You poor girl, fancy having that put on you. I dont know much about MS, but I'll look it up. Thank goodness for patchwork and crochet. I totally understand the calmness when you are doing one of these great past times. I'm sure your blogging friends will be of comfort, when you are feeling down. Take care X from NZ

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  4. That's such a sucky thing to have happen to you. I'm sorry. I'm glad you are feeling a little bit more normal this week, and that you have crafting to help a little. <3

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  5. Bethany,
    You have helped me so much over the years I have followed your blog! I can only offer you my love and best wishes, you are an inspiration and even though we have never met I consider you my friend!
    Look after yourself my dear, you are very special to a lot of people!
    Linda

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    1. Aw, thank you so much!!!! That is so sweet!!!

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  6. Hi Bethany, this morning I woke up very late (around noon) because I went to bed very late due to you know all the chronic nonsense pain. I saw in my feedly you have a new post titled "Sometimes" and immediately my heart sank. But I had no time to read because I had to go to the dentist to get my teeth cleaned. Anyway, I finally got to reading your post and I'm glad I'm not around people because I cried my eyes out while googling MS. Screw the Universe. This is so sad and unfair. I believe in medical science. I read that there's been a breakthrough in MS research. So you hang in there. And you keep getting better, like you have. xo

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  7. Dear Bethany,
    Doctors have limitations.....Jesus knows NO limitations !!!!

    MS has made great strides in the last 15 years and it doesn't affect no two people the same way. Many people go on with their lives symptom free for long periods of time.
    I will be praying for you....promise!!!
    Addie
    Matthew 19:26.....Jeremiah 29:11

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    1. Thanks, Addie! The docs think they caught this early, and that I have a good chance of keeping its progression in check. But, like you said, no two people get it the same, so we shall see (or not. Hopefully not).

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  8. Hi Bethany, I'm so sorry, a million times I'm sorry. I want to just scream, "NOOOO!!!!" If wishes could fix things I promise you'd be better right NOW! Listen to your doctors, focus on what you can do to feel better, and I hope try to stay positive. I don't know if you've ever read Courtney Carver's blog. She writes about simplicity. I know she has MS. Maybe reading her story might be of some comfort. Take care of yourself, Lisa

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    1. I've never read that one, but I'll be sure to check it out. Thanks!!

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  9. Oh Bethany, I'm so sorry to hear this. A colleague of mine has MS and I know that it's tough (without actually knowing if you get my drift). I wish I could do something to help, but I know I can't. I am here for you though xx

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