A personal update


December 8, 2014 by rebelwithalabelmaker

This is not a real blog post.  It’s an, er… well, kind of like a thank you note.  And also like an… illness announcement, I guess.

For ten years now, Gary and I have had this ritual.  Every once in a while, I’ll say to him “the side of my right foot has been numb for a couple of days—time yet?” or “my vision’s gone blurry, and it stayed that way on and off for a day—is it time yet?”.  We’ve had an understanding—that something is wrong with me neurologically (he guesses MS—but there are a variety of autoimmune problems that fit this pattern).  You don’t treat those kinds of disorders in the early stages, and I travel to the US regularly.  It’s best not to have a pre-existing diagnosis when you’re seeking health insurance, so we’ve done nothing.

This fall, I started experiencing a lot more numbness and dizziness, as well as significant confusion.  It was hard to notice at first, because I often experience confusion—I’m not joking here, I have an ADHD diagnosis (although I tend to subscribe to the “if 10% of people are like that, maybe it’s not exactly a disorder” school of thinking).  Then, I realized one weekend that I’d been standing in the kitchen not sure what I was doing for fifteen minutes (I happened to notice the time as I walked in)… at the same time as I realized I’d messed up a lot of details in a few projects.  Way more than is normal for me—I work really hard to be reliable.  So hard.  You have no idea.

I realized I couldn’t muscle through any more.  And Gary said “uh, it’s time”.  I started booking medical stuff.  And cancelling other stuff.  Which was, I’ve got to tell you, not a very fun trade off.

I got rid of aerial hoop lessons—for now.  And guitar lessons—for now.  I ditched as many volunteer commitments and I could.  I called my prof and explained that I couldn’t do the reading, and she was insanely understanding and accommodating.  Gary and I began delaying booking things like flights.  He started prefacing plans with “if you’re well enough…”.  I hated him for it.  Remember it was his idea for me to be ill in the first place…

“Of course I’ll be well enough to ski by February!” I spat out, even as I hadn’t been able to sit up long enough to eat a full meal without resting.

I began using caffeine, and timing my Ritalin for when people would see me.  Because the thing that was most overwhelming was the desire to hide this.  To be managing it.  To be not sick.  To remain useful.  I had a whole life planned out, a list of things I was going to contribute.  And now, some days I spend hours laying on the couch, occasionally mustering up the energy to check Facebook on my phone.

Every day is not like this.  There are lots of evenings I spend hours goofing around with the kids, or talking to Gary.  There are a lot of good days, and those days with a little caffeine and some Ritalin I can be very productive for several hours.

And I noticed something disturbing on my good days.  Rather than attend to several desperate commitments, I would write.  I would blog, I would post rants on Facebook… I would read others’ writing…  I would… procrastinate?  Except it wasn’t… it was more than that.  I needed to do those things.

And then it hit me.  This is pastoral self care.  I am a full blooded extrovert, in a situation where I can’t exactly hang out with people because if it’s a good day I can’t spare the healthy-time, and if it’s a bad day I can only socialize in ten minute chunks before I have to rest for a bit.  Enter Facebook.  Where you can socialize in ten minute chunks.  Where you can be there with no notice, and leave with no notice.  Where you can fill that need to know you are still useful to somebody by posting a note of encouragement or an inspiring article.  So, for all of us thinking about how pastoral care can be done in congregations, I have to say…  when I was suddenly hospitalized several years ago for (unrelated) liver problems, I used Facebook to find people to pick up my kids, bring me my phone charger, etc.  When I got sick this time… Facebook.  It is not as good as face to face contact.  But when you don’t have that option, it is a heck of a lot better than nothing.

So that’s the thank you piece.

Now for the announcement, which is:  We don’t know.  No clue.  Informal survey of Gary’s colleagues is unanimous that something is wrong in the neurological autoimmune area, and that it’s not cancer or anything life threatening like that.  Have normal (almost) blood tests, referral to neurologist, and MRI on the way.

Me:  Once we have a diagnosis, we…

Gary: Um…

Me:  You keep saying “Um” whenever I say that.

Gary (in a rush):  It doesn’t work like that.  The diagnosis is going to be MS, or Lupus, or some other neurological autoimmune thing.  It might even be “heck if we know”.  And it might take years for that to happen.  And it won’t… well… it won’t mean anything.  Or at least, it won’t mean the things you are hoping for.  It won’t come with a cure, or even with a prediction of how things will unfold.  There is no prediction.  All of these diagnoses share the same course—which is not so much a course as an educated guess.  Maybe you’ll suddenly get better and never have a problem again.  Maybe you’ll degrade steadily and have significant physical disabilities and energy problems on a permanent basis.  Most likely, you’ll continue the progression that’s been unfolding for a decade.  You’ve been managing your energy intentionally for five years already—it’s just gotten more intense now.  You’re still the same person that you were last year.  Symptoms have progressed, sure, but they’ll still come and go, and you’ll adjust.  No doctor is going to be able to tell you how to do that, because nobody will know what you are capable of the way you are going to know.  The diagnosis won’t really be information.  It will be “You have blah-blah, so, uh…  this is who you are now.  Adjust.”  It doesn’t matter what the blah-blah is.  This is who you are now.  Adjust. 

Me:  But I want to know.

Gary:  Health isn’t like that.  We know some things, but mostly we don’t.  I treat so many people with cancer who think that we diagnose, we battle, we win or lose, and they move on.  But it’s not like that.  We treat, we try, we wait.  They have to get back to living, knowing that they might get sick at any moment.  Because here is the thing.  We all might get sick at any moment.  Lots of us—way more than people realize—actually are sick in a given moment.  Sometimes, you deal with the sick and then get back to living.  But usually you deal with the sick and live at the same time.

Me:  So I just need a better attitude.  Is this fancy talk for “get off the couch”?

Gary:  No.  It’s the opposite of that.  Today at least, getting off of the couch is not an option.  It’s okay to hate that.  It’s okay to be sad about that.  But at some point, you’re also going to have to accept that.  You need to learn how to live a life that is—at least partially—lived from the couch.  The world doesn’t divide into sick and not sick.  Life isn’t just for well people.  For people who aren’t dying.  I say this to patients all the time.  You are dying.  Dying is one type of “still alive”.

Me:  At least I’m not dying.positive_attitude

Gary:  Everybody is dying.

Me:  Is that why you weren’t afraid in Paris, when you almost died?  Because you see the world as “everyone is dying”?

Gary:  No.  I don’t see the world as everyone is dying.  Life is not a countdown to “dead”.  It’s a count up from “born”.  There’s only one real diagnosis, and we’ve all got it.  And it’s not license to wait.  It’s the reason to stop waiting.

I may have paraphrased some of that a little, but you get the idea.

Illness announcement:  I’m human.  We’re still working out what that’s gonna mean at the moment.

P.S. I love you, internet.

12 thoughts on “A personal update

  1. Kirstin says:

    Hey, Liz. I feel you. Life from the couch can be frustrating at times, but you aren’t alone. I have a thyroid issue, and because something has to get bad enough for me to notice before I get an unscheduled test (and for me, confusion and exhaustion are the first signs, so it is really hard to notice), then I have to wait for results, change doses, wait for it to kick in, test again and see if I need to change more, when I’m out of whack I sometimes spend a few months at a shot *managing* as carefully as I can, then retreating to the couch and managing that while hoping I don’t need to retreat to bed before everything straightens out again. I also have a baby daughter, so everything takes second to that, and facebook is my social lifeline at those times–ten minutes, when I have ten minutes, or simply reading when that is all I can do.

    Even thought Gary is quite right about knowing and not knowing, I deal better when I have a name, a nice neat label for whatever it is. Labels somehow make it more manageable for me. I hope, whatever blah-blah might be, that you find the “adjust” part as easy as possible (knowing that it isn’t easy), but I also hope you get your name.

    And I’m going to hit post before I start babbling too much.

    • Thanks, Kirstin… I was feeling like I didn’t want to mention it because I was the only one and then I realized of COURSE I’m not the only one… 🙂 Gary treats thyroid stuff. He says it’s an absolute pain (for the patients. Not for him. He likes it fine because he always feels helpful because he can explain what to expect and people feel better. Unlike with cancer, where they do not feel better after the explanation).

  2. Tina Porter says:

    Thank you so much for this. I will be sharing it with people I love who might need to hear it. You are so beautiful, even on the couch, and I’m glad that Gary is who Gary is and is right there with you. All love to you.

  3. Medbhlet says:

    Hugs to you on the couch, Liz. I’ve seen what an undefined illness can do to someone, and it is indeed difficult to manage. You do admirably well in so many areas of life, and I think it’s wonderful that you have a writing life that can be maintained from a couch, or wherever you happen to find yourself. You’re a master of self-reflection.

  4. Oh, Liz… that sucks, and you are awesome, and you are brave to share this, and it will help others to know they are not alone. Entrepreneurial couch ministry at its finest. I love you!

  5. Debby says:

    Facebook as ministry–great concept. I was thinking of disengaging from FB but you put a whole different slant on it. I’m so grateful to be able to read your work, even (or especially) sad ones like this.

  6. Denise Brownlie says:

    “For ten years now …”. For me, it was 45 years of symptoms so similar to yours that my heart hurt, reading your words. Finally, disabled and in despair, I flew to Vancouver for an MRI (no machine in my small city). Diagnosis: MS. “No doubt at all,” said the neurologist. “Judging from the number of plaques, you’ve had MS since you were about 20.”
    A request: I’d like to be a Facebook friend, but I don’t know how to find you there without a full name.
    My e-mail is owls-nest@shaw.ca
    P.S. I completely understand if life is too overwhelming to bring another Unitarian, another word-smith into your circle. It’s a privilege just to read your blog postings. (Back to the sofa now, Liz. Rest, rest.)

    • I’d love to be Facebook friends, Denise–I’ll see if I can find you. If I can’t, just search for me (Liz James) in your search bar… I’m sure we’ll have mutual friends and it’ll help us reach each other!

  7. Guys, thank you so much for all your encouragement. I appreciate it so much. You have no idea!

  8. Mike D says:

    Liz without energy to be Liz just doesn’t feel right. If you need any extra bounciness, let me know.

    Good post. Thinky things happening in my brain.

  9. Wendy James says:

    Touching post, B. You might want to some thinking about the relationship between sick Mom, sick wife and other past stuff to this. Likely you already are. Let us know when we can help, or we are likely to start “helping”. Family can be bad that way. Love Wen

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