A while back, I had to have an IV treatment. I’ve only had one every one or two years for a while now and it’s not for AE, so I consider myself lucky.
As I went through all the standard motions: Get to your IV chair (the recliners I talked about in the book); chat up your nice nurse; get settled a little; wait; nice nurse applies a heat pack because your veins are hard to find; wait; sit while nice nurse starts and flushes your IV; wait; play on your phone, put your headphones in, do whatever it is you plan to do to get through your allotted drip time; wait while you do your thing until it buzzes; wait; get your IV out; be told to drink a lot and call with concerns, and go home with your arm or hand wrapped in gauze.
Been there done that now a few times in my life.
My last treatment was at Sanford. I’ve never received another infusion at the downtown Mid Dakota Clinic after the first six I got when I was in the throes of AE. I think walking through the waiting room to even get to the infusion center would send me spiraling, not to mention what I know would be a distinct hospital-type smell and the sight of the chairs with the accompanying IV poles. (How do you spell panic attack?)
It was actually five years ago today, on June 6, 2018, that I received my second IV treatment and when I recall waking up. The day I voted, after having limited cognitive skills. The day Ashley and Sean talked in my office and I realized that everything in my life was destroyed.
Saying it again for everyone in the back: I know how lucky I am that I’m not still receiving AE treatment of any kind, much less second line treatments or third line that lead to–chemotherapy drugs. Awful. And I’m so thankful for that.
This treatment was for my bad bones. Undiagnosed Celiac disease and eating steroids the way I’d eat Swedish Fish minis (my favorites) destroyed my bones. I don’t look 90, but my bones do.
Given all the circumstances, I went in with a good attitude and had a week blocked out for recovery. Introducing anything into my already fatigued and finicky system is hard. I’ve learned to plan.
As I arrived, I noticed the wall with the bell. I thought of how big of a deal that is when someone finishes cancer treatments and gets to let it rip on that chain to let the world know what they and their family have just accomplished! How many photos I’d seen of someone I care about ceremoniously, with staff and cheers, ringing the bell.
I can’t lie. I got a little sad. I wished that at any time in this journey I’m on, I would have gotten to ring a bell. To have someone tell me Your scan is clear. I don’t see it. I don’t see the gremlins that led you to the state you were in in May 2018, when you were nearly catatonic, couldn’t be left alone, couldn’t draw a clock, and had seizures.
Those days are officially behind you.
You’re in remission.
You’ve conquered that invisible traitor.
As I went through my process outlined above (mostly the waiting), I thought about the black holes of AE and its differences from cancer. There are no comprehensive or micro scans to see AE. AE still doesn’t have an FDA approved and standardized treatment.
I heard my Mayo neurologist on a podcast and when he mentioned seronegative AE (mine), he said (not flippantly of course, in all context) We’ll treat you with steroids and see what happens.
I’ve heard autoimmune neurologists say dartboard.
I’ve been to so many cancer beautiful cancer benefits in Bismarck alone. By our own good fortune, Sean and I were able to fly to North Carolina for a run benefiting the AE Alliance.
One run, in one state, with one group. And it was the last one.
As I waited for my little veins, waited on the flush, and waited on the drugs, I remembered one quiet exchange between Sean and I, at some point, probably later in 2018, when I looked and acted completely destroyed and lost.
He quietly said Sometimes I wish you had cancer. At least we’d understand and have others around in the same situation.
I answered even quieter I know. I’ve thought that too. But didn’t want to say it.
(We lost Sean’s Dad to cancer when we were pregnant with our first child. We’ve lost a lot of friends to cancer, too. Those statements were not intended to diminish the horrors and fear that cancer brings. Neither is repeating them now. They were our honest thoughts, spoken just once, when we were terrified of what our lives looked like. And we felt so alone.)
Just a month ago, when I was one of two survivors at the (literal) table, the other survivor said at least twice When I had encephalitis, I wished I had MS. Even MS had a support group.
I understood and felt deeply what she was saying. I have a lot of friends with MS and I don’t wish that on anyone. What she was saying and what I have said in my quiet times too, is I hate AE. It’s devastating, isolating, and rare.
And in my worst days, I wished for anything but a rare disease. I wished to feel included with others near me.
As I got out my funny notebook and went about the work I had set for my hour (have I ever mentioned how cool I am? I was listening to a two-part podcast and being the dutiful student, taking notes, about giving “freenote” speeches), I let a lot of the thoughts pass.
It is what it is.
And the fact is, I have a rare and fairly unknown disease. I have a lot of serious collateral consequences to blame on either the illness itself; my immune system; or steroids. There’s a lot we’ll never know with me. But,
and a huge emphasis on but
I feel like I’m as happy and healthy as I can be. I’m as lucky as anyone. My return from AE is nothing short of a miracle. I’m proud of all the work I’ve done to make others with my condition feel less alone. I love all the AE connections I’ve forged to find meaning. I've created my own worldwide group. My people.
Maybe there’s no official bell to ring. But today, I celebrate five years since I woke up by only
grateful emphasis on only
needing steroids.
Bells or not. Big support groups or none. Similarly situated people all around you or one contact across the world. Find your people in whatever shape or situation they come in and ring that bell any damn day you choose.
Rare disease or not, we’re all navigating our two kingdoms. And it’s my wish for you and for me, that we retain citizenship in the land of the well.
jackie
"This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me" ~ Fight Song by Rachel Platten
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/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.
Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. / /