#dSavannahDefects – S is for…

My theme this year for the #AtoZchallenge is #dSavannahDefects, aka “What’s it’s like dealing with #InvisibleIllnesses”. Or, in short, {some of} what’s wrong with me.

S… spoon theory

The spoon theory was created by Christine Miserandino, who suffers from lupus (an autoimmune disorder), and she writes about it on her site butyoudontlooksick.com. (Please go read how she came up with the theory.)

A lot of people with chronic illnesses have connected with and embraced this theory, so much so that we call ourselves “spoonies”.

As she said, “I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

In essence, the healthy person has an unlimited number of spoons, which they can use freely, while the sick person has a limited number. Every. single. thing. they do costs a spoon.

So, imagine that I started this day with only 10 spoons (which feels about right, actually). It cost one for me to get up and brush my hair. Then another one to eat something. I lost a spoon when I fed the animals. Then another to check my email and social media accounts.

That leaves me with only *six* spoons to make it through the rest of the day – and writing this post and doing all the posting to promote it costs me at least three, if not five spoons.

That leaves me with only *one to three* spoons. Note that I have NOT:

  • gotten dressed: that costs a spoon
  • showered: that costs two
  • shaved my legs: that costs another two (I’ve pretty much given that up)
  • cooked a meal: three to five spoons
  • cleaned up after meal: two to four
  • dealt with mail or paperwork: two to three, but could be more
  • done laundry: one to three spoons for each step, so sorting is three spoons, putting washer is three, putting in dryer is three, folding is one, etc.
  • made the bed: two spoons (I never do)
  • scooped the kitty litter: two to three
  • filled the dishwasher: two to three
  • spent time with hubs: varies based on activity, from just sitting there (one) to actively talking (three) to going somewhere (again, varies)
  • etc.

And that doesn’t even count “extra” stuff, like going shopping for food or taking the dog for a walk or doing any sort of exercise, which is important for my overall mental and physical health.

And it’s not easy to get more spoons. Sometimes sleep helps, sometimes it doesn’t. Sometimes eating helps, sometimes it doesn’t. You just never know.

That’s why I recommend some of the things I do in my “rays of sunshine” post. If you have unlimited spoons (and I hope you do), share some of your spoons with a friend.

… spinal issues

Yeah, so it should come as no surprise to anyone that I have numerous issues with my spine.

In case you aren’t aware, your spine is SUPER important. Practically everything connects to it, and all the big nerves and what-not run through it.

This here is my spine. And its scoliosis jig-jag. Purty, huh?

This here is my spine. And its scoliosis jig-jag. Purty, huh?

So, the first issue my spine has is scoliosis, also known as a curvature of the spine. My case is considered “moderate”, but it does add to the pain I feel.

I got first diagnosed with scoliosis when I was 11 or 12. I was about to enter a real school (after homeschooling for years), and the school system required a physical. The doctor who examined me said I was going to have scoliosis, that he already saw signs of it. I never had any treatment for it (other than chiropractic, which I started in 1993 after a car wreck), and my mother doesn’t even remember that I’d been diagnosed.

And there isn’t really any treatment for it when you’re old. If it is caught when you are younger, they can give you a brace to help straighten your spine or do surgery.

My writer friend Andrew Butters (who I wrote about in another post) now has a daughter full of metal – she had scoliosis surgery about a year ago. Read about it on their site: Idiopathic Scoliosis – One Family’s Journey. And be sure to check out those crazy x-ray photos!

I also have the following spinal issues, which were diagnosed this past year via all those imaging studies I mentioned in my “I is for (pt 2)” post:

  • cervical spondylosis with myelopathy
  • disc degenerations
  • schmorl’s nodes
  • disc bulging
  • radiculophathy in C4 & C5 vertebra (left side)

Sounds, fun, huh? (Try saying them five times fast. Or once.)

Essentially, all of that means I have “age-related wear and tear of the spinal disks” and “compression of the spinal cord in the neck”. Them nodes “are protrusions of the cartilage of the intervertebral disc through the vertebral body endplate and into the adjacent vertebra.” And radiculophathy means I have nerve damage in my neck. Which is not surprising when you consider that I was rear-ended when I was about 18 years old.

I may or may not need surgery for all this, but we just don’t know. I saw a spine surgeon last year, and they were going to send me for a CT scan of that part of my neck, and I never heard back from them. At. All.

In a couple weeks, I am going to start seeing a new doctor for my pain issues, one who specializes in spinal problems, so we’ll see what she says.

… suicide

I debated whether or not I should include this topic, but I’ve decided I should. Suicide affects so many of us, especially people with #InvisibleIllnesses or mental health challenges, and the Light needs to be shone, full on, to this Dark, Dark Place. So here is what I wrote:

I just learned that a college classmate committed suicide. I don’t know the details, but my good friend who is good friends with her is “gutted”. And as I write this, I am crying. I am crying at my friend’s loss, and the loss felt by the classmate’s actions, and the fact that my classmate felt she had no choice but it to end it.

And then, two days later, I learned that a writer, Logan Masterson, who I didn’t know, committed suicide. (Some of his friends set up a now fully-funded gofundme to help his widow with funeral costs.) His last Facebook post on March 29 reads “No matter how I try to do the right thing, no matter how I fight and struggle, No Matter what angle I try or determination I make I will always destroy whatever is good in my life.”

As we all know, the brilliant comedian Robin Williams committed suicide almost two years ago after suffering from severe depression.

The high-school aged son of one of my students committed suicide 10 years ago. Even in the midst of her horrifying, indescribable pain, she started a foundation in his honor to help prevent suicide.

Recently, honestly wrote the reason for her sister’s death in a heart-breaking, unflinching obituary: “Aletha Meyer Pinnow, 31, of Duluth, formerly of Oswego and Chicago, Ill., died from depression and suicide on Feb. 20, 2016.” Eleni wrote a column called “I told the truth in my sister’s obituary, so that others might choose to live” in the Washington Post. She wrote: “… her depression created an impenetrable fortress that blocked the light, preventing the love of her friends, her family, and any sense of comfort and confidence from reaching her.”

And, to be fully honest and speak my truth, no matter how difficult it is, yes, I have contemplated suicide. I have never attempted it, but I have thought about ending it. Ending the pain. Ending the darkness. Because the struggle against the darkness and depression is sometimes too much.

I don’t know when I wrote this (a few years ago?). I wrote it for a friend going through a terrible time, and in reading it now, I realize I wrote it for me, too. It’s hard to share these words, but I am doing so because I think it’s important. It’s important for you to know that people who commit suicide are not cowards; in fact, they are terribly brave for letting go.

I just want you to know, that should you choose to leave this mortal coil, I understand.

I don’t wish you to do so; in fact, I wish you to find your center and your happiness and your way out of the dark with its demons and regrets and pain and numbness and fucked-up-ness.

But I’ve been there. I’ve been in the dark. I’ve been where all I want is to stay in the dark forever and never come out. I know how it feels to be helpless and hopeless and pointless.

Somehow, thus far, I’ve found the strength to crawl out. I don’t know how, or why, or even if there is a why.

I pray you find that strength.

If you don’t, and if you do cut the thread and let go, there will be people who vilify you. People who ask “why?” People who call you selfish, self-absorbed, tragic. Weak. Who won’t forgive you.

It takes an incredible amount of courage to hang onto that thread. To try to see the light when surrounded by nothing but shit and sadness.

Those who have never been there, those how have never truly been there, will never understand how daunting life is, how difficult it is to do even the simplest things.

And, I want you to know that I understand.

I want you to know you’re not alone. And I’m glad you’re in my life.

Please don’t; I truly hope you don’t, but if you take that step, slice the thread, allow yourself to fall into the abyss, know that I understand, and love you just the same.

More ramblings / other posts you might want to read...


About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #AtoZchallenge2016, #dSavannahDefects, depression, hell, shining a light, the dark places. Bookmark the permalink.

9 Responses to #dSavannahDefects – S is for…

  1. Now I know what the whole “spoons” thing is all about. There’s a woman I know who will write “I’m all out of spoons!” and I never knew exactly what that meant.

    @mirymom1 from
    Balancing Act

  2. Elaine LeDoux says:

    Wow this was a little too hard to read! As you know Debbie, my beloved daughter suffers from Systemic Lupus and it’s so hard for me to watch how hard she works with what spoons she has

  3. Betsy says:

    Never heard of the spoons theory. Thanks for informing me.

  4. jlgentry says:

    I always knew you were a twisted person, but I thought it was just your mind. Since the mind rests on the spine, I guess I am not surprised. Another great post.

  5. Pamela says:

    Thanks for this post and I hope you keep finding the strength to crawl out of the dark whenever it threatens to overwhelm.

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