Spoons

Work usually ends the last week of September and for me it's a bitter-sweet time. I look forward to catching up on the canning, housework, and free-time I've missed the six months working.  But, I also miss the laughter, jokes, lunch dates, gossip, and friends from the office.  It's a long six months wait to head back.  But this was an Indian Summer so, work kept on through to the end of the October.

I  just barely finished up with my classes in the Master Preserver Course in mid-September when I started up with the Horticulture Diagnostic Classes.  I had my work days switched from Wednesday to Friday so I could attend. To add to my bulging schedule were my duties as the  President of the Utah County Master Gardener's Association. The Fall Social was around the corner, and I had to make sure everything was running smoothly.  Even though it was in November, there were several meetings I was in charge of, emails to send, phone calls to make, and volunteer hours to count.   

One Wednesday, I arrived late to Diagnostic Class looking like death warmed over. Lecture had been going for 15 minutes.  To give you a quick picture here, class is held in the basement of a building by massively beautiful gardens located in Northern Utah County.  It is a good, brisk, ten-minute walk for me on a good day.

This was not a good day, and the parking lot seemed to be out in the back 40. For those who aren't familiar with the farming term, that means the back 40 acres of the property or in other words, a long, long way.  I silently cursed myself for even coming to class and contemplated just crawling back into the van and driving home. But, the drive home would've taken twenty minutes, several gallons of gas, and I really wanted to go to this specific class.  Scooter it was. 

I sat through class thankful I'd stayed, but all the while dreading the poweride back out to the car.  [At least it was a ride and not a walk, or crawl].  My co-worker and friend, Meredith, must have been watching me because when class was finished, she leaned over to me, "So, you finished all your spoons for the day."

Blank stare.

"Your spoons.  You know-the spoon story."

"I've no idea what you are talking about."  Meredith was always the sane, older one.  Maybe she was talking about something for the fall social I had forgotten about.   

"You know my daughter has Lupus, right?"  I nodded and she continued, "While I was visiting her this past week, she share the spoon story with me.  You and her are a lot alike."

She then proceeded to share the spoon story with me.  I wish I had been smart enough to come up with this analogy.  But I wasn't.  I do thank Christine Miserandino for her insight though.  I have shared this with everyone I can-whether or not they can benefit from it.  It hit the nail on the head.

There are a few items I'd like to point out to non-MS people out there (well, anyone with a full day with 12 spoons).  Please read the story first.  It is really hard to explain that just taking a shower (not getting dressed or fixing  hair or all the good stuff that comes with it) can use up 3 spoons if I'm not careful.  Or how on other days, I feel so fantastic I'm buzzing around 50 mph and use up all 12 spoons + 4 of tomorrows and regret it the next day.  Christine did a great job trying to write a visual for others to see it.

One time, while I was sitting in my psychologist's office and crying to him about the loss of feeling in my fingertips, he nodded his head.  He was scribbling something on his pad, and I got angry.  I took his nodding for him knowing how I felt.  I stopped my boo-hooing and started yelling at him.

"You do not know how it feels to not feel anything-not to be able to tell if your kids are running a fever; or stroke their cheeks and feel baby soft skin!  You can't tell when you're burning your fingers on the stove until you smell burning flesh!  I couldn't even change the heater knobs in the car on the way over here.  And it wasn't because they were cold.  It was because I. CAN'T. FEEL. THEM!"

He looked at me, and, in the stupid, soft voice of a shrink, he asked, "Then, explain it to me."

I thought of someway to tell him what it felt like. I looked at my thumb, where a large bandage covered a wound from slicing tomatoes.  "It's like having a bandage on every single one of your fingers.  Try living life every single day dealing with that.  Try typing, writing, cooking, driving, whatever! Bandages on all ten fingers."

I finished the session and didn't think anything more of it, until the following week, when my doctor informed me he had tried it.  Tried what?  The bandages on his fingers.  Not intentionally, but he had cut three of his fingers chopping wood so instead of taping up just the three, he did all ten.

"And?"

"I don't know how you do it.  Everything took twice as long, and somethings, I just gave up.  I have to say, I admire you for not giving up."

To be honest with you, I have given up in frustration. But I've also have picked 'it' up again, knowing if I don't keep trying to do 'it,' I will fail. There are times I don't give up, even when sometimes I probably should--like maybe when I am out of spoons for the day.  But if I had given up way back when I couldn't do anything with my fingers (1998), I wouldn't be writing, typing, sewing, tying my shoes, and the list goes on.  I will say it was extremely frustrating.  I taught myself to do all of that on my own again.  I was in between neurologists and had nobody but my family to encourage me.  It was the thought of my family, my little children,  and all the things people told me I couldn't or shouldn't do, that spurred me on.

There are things I've accepted I can't do anymore, so I don't throw away my spoons away needlessly. But, there will always be other times when I can't help myself by saying, "Maybe just one more spoon."

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