When last we left our intrepid hero (that’s me!), she was being transferred to a long-term respiratory care facility.
It was pretty nice, all things considered. They got me settled in the bed, and Mom even got her own bed for a change. There was a DVD player in the room and a small media library.
The only unpleasant thing of the day was when they told us I needed a transfusion. Apparently, the ICU had taken so much blood that I was actually low.
Otherwise, it was relatively peaceful there. I mean, ignoring the fact that I was paralyzed and in pain. But it was a nice place to suffer in, if that makes any sense.
Eventually, I was off the ventilator, so I could go participate in arts and crafts. My aunt got a very poorly rolled beeswax candle, but she accepted it graciously. And there was a nice garden with a path wide enough for my wheelchair.
And it was at that hospital that I was finally able to eat again. I mean, it was applesauce and pudding. But they tasted glorious!
In fact, I only have one negative memory of the place: my trach tube slipping out.
It came unfastened on one side, so I was staring intently at my dad (no real facial or body movement yet) and desperately sucking oxygen as hard as I could. It wasn’t enough, and I felt once again like I was drowning without any water.
After a very long minute or so, Dad figured it out and ran to get help. They were incredibly apologetic and got it fixed. Then the new fastener slipped too.
Hadn’t happened before, never happened again. So I don’t blame them. Still, it sticks in the memory.
By the time I left, I could move all of my limbs, though not necessarily very well.
Insurance would only pay for 10 days, so the schedule was intense. I alternated between physical and occupational therapy about six hours of the day. They had me use an arm bike, typing and using stretchy bands to rebuild muscle.
Meanwhile, I had to relearn how to walk. Which is terrifying. You’re much higher off the ground the second time round. Falling is a far bigger deal.
They actually wrapped cloth bands around your midsection, then followed close behind you holding the tail. If you started to go down, they’d yank you up. I had a fun panic attack when, years later, a yoga class used the same kind of band was used in a yoga class.
Also, it’s excruciating. My feet hadn’t had to bear any weight in about 10 weeks. Then they had to hold up 170 pounds, while wracked with nerve damage. I spent a lot of time blinking back tears.
Besides that, I remember the food.
You could opt out of the traditional, delivered meals and instead get a voucher for the cafeteria. There was a ton of wonderful, fresh fruit. Heaven for taste buds that had barely tasted anything for months.
Give me drugs!
They switched my pain medication from injections to pills. I didn’t notice them working, so I stopped taking them.
See… the thing about being on a ton of narcotics is that you aren’t clearheaded enough to realize just how bad an idea it is to stop taking that ton of narcotics all at once.
One night, I woke up and there were pictures on my sheets. It was a leftover from a dream I’d had, but I was quite sure they were there. And for some reason, that was terrifying me.
Mom wasn’t allowed to stay there, so I had to call her hotel. Later, she said it sounded like I was on a bad acid trip. I was so freaked out that the nurses made an exception, and let my mom spend the rest of the night in my room.
The next morning, the doctors said I was going through withdrawal. Apparently, I was on what is essentially synthetic heroin.
They put me on a rapid Methadone taper for the rest of the time I was there, which was a whopping six days. Meanwhile Mom had gone back to Anchorage, and Dad was there for the last stretch. If you don’t know what that’s a problem, click here for some insight into our relationship.
By the time I left, I was able to walk on crutches for short distances. Very short. I had to stop every ten or so feet.
They didn’t have time to completely taper me off Methadone. They got me as low as they could, and we hoped it would be enough. It wasn’t.
I woke up the first morning back and felt a little nauseated. I got increasingly anxious as the day went on. That night, my dad watched Volcano, and within 10 minutes, my whole body was tense. After 20 minutes, I was fighting a low-grade panic attack and had to leave the room.
Also, the spaghetti wasn’t sitting well. It sat so poorly, in fact, that I saw it about half an hour later.
Luckily, I’d been keeping a bucket nearby. Mom, with ever a grim sense of humor, she glanced at it, declared I needed to chew more and then set off to rinse it out. God love her.
Unfortunately, that was just the beginning. I spent the next 20ish hours at home puking every 20-30 minutes. It went like this:
- Stomach cramps and sweating, throw off all covers
- Hang head over bed, whimper
- Helped to the bathroom for mouth rinse
- Back in bed, start shivering violently, pile on covers
- Wait 10 minutes and begin again.
I joked that I could now pick my bile out of a lineup. Mom said she now understood why cops in old movies threatened to throw junkies in jail for a couple of days.
Finally, I agreed to go to the ER. But not before putting deodorant on. I guess I thought it was fine to puke my brains out around them, but I didn’t want to be indecorous enough to make them smell by BO.
They gave me Demerol, and I was in a cloud. I didn’t have to open my eyes to see it. I could see it aaaaallll around me. My dad must’ve asked me something because I found myself airily replying, “I feel better now.” And then it was two hours later.
During the night, the symptoms returned, so I was visited by a hamburger floating menacingly over the bed. My crying woke my parents up.
My PCP made time for us in the morning. She gave me a painful hip shot and wrote a prescription for Methadone. Which is when we commenced a highly illegal, at-home detox.
I was exhausted from physical therapy and jumpy the whole time. At one point, a car backfired. I know I wasn’t physically capable of it, but I’d still swear I jumped a foot in the air. A few days later, a high windstorm had me curled up in a ball and crying. I was sure I was going to die.
Within two months of being home, I was walking unassisted. Though I still broke out in a sweat if I tried to stand on my own for more than 10 minutes.
Perhaps the worst thing about coming home is that everything wasn’t magically okay. I was traumatized beyond belief. My parents were exhausted and frayed, and therefore had nothing left to give me. Except attitude when I did act out.
Mom had used up all her leave, so I was at home with Dad. All day. I spent a lot of time in my room. It didn’t help the friction, but it preserved the fragile spark of sanity I had left.
I was also intermittently in pain because I could make myself take my pills. There were so many, and I was so sick of them.
The pain would kick back in, and then I’d go back to taking them. But it’d take two or three days to build back up in my system.
It was ridiculous, if understandable (for everyone other than my father). He just decided that putting signs up around the house “TAKE YOUR PILLS, ABBY!” would somehow work.
I went back to school in the fall. It was kind of a frantic pace, chock full of denial. I kept trying to get in better shape. Thanks to the feeding tube and spotty workout streaks, this mainly resulted in my left upper abs being sore off and on throughout the year.
To make up for the school I missed and, let’s face it, to avoid living with my dad again, I stuck around for the summer quarter. And developed an unhealthy body image even as I got into great shape.
Luckily, I was self-aware enough to go to a therapist. She diagnosed me with body dysmorphia and PTSD. My favorite conversation with her went something like this:
Therapist: So you were on life support?
Me: Uh, no.
T: But you were on a ventilator because you couldn’t breathe on your own.
T: And they had to feed you through a tube because you couldn’t eat.
T: And you had a heart monitor.
T: So you were on life support.
For the record, I did eventually get it. Then I wandered around in a trance for the rest of the day.
She also told me that I needed to grieve for what I’d lost. Which I thought was the stupidest thing I’d ever heard. Then broke down crying.
Guillain-Barre Syndrome was horrible and traumatizing. It changed my whole future — not just the trauma but also the residual fatigue that plagues me to this day.
But over time I learned to stop fighting it. These memories and even my limitations are now just a part of me. My hair is brown, and I had GBS. My eyes are brown, and I have chronic fatigue. These days, they’re facts rather than emotions.
I know it’s weird, but I don’t mind the scars.
I’m sad that my trach scar is going to finally close up in the next few years. I’ve gotten used to my lil neck navel. And I actually like the ones from my stomach tube. They’re unique. I know I’m looking at me when I see them, if that makes any sense. And it may not.
That said, I don’t want to get a tattoo like some people. They get turtles (the joke is that GBS stands for “Getting Better Slowly”) and the letters GBS in the shell.
They’re lovely, but I don’t get it. I may partially define myself by my fatigue — it’s a huge factor in my life — but I don’t want to define myself by the illness that gave it to me.
Come to think of it, maybe that’s why it took me so long to write this post. Or because I knew that it would be this ridiculously long. One of the two.
FYI, Mom told me that my heart rate was actually around 180 into the low 200s. I try not to imagine what it must’ve been when I purposefully set off the heart monitor.
Would you get a tattoo about your illness?