Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.
It has been so long since I’ve written, I had to look back at where I ended…what a nice trip down memory lane! There are so many details I would not have been able to recall if I hadn’t written them down. It makes me a little sad I didn’t finish my story then. I will remember even less now! Here goes anyway…
This part of the story takes place during in inpatient therapy at Mary Free Bed Rehabilitation Hospital. I covered my physical therapy in the last post. This one will focus on my Occupational Therapy.
Occupational Therapy focuses on fine motor skills (hands, arms, fingers) and works to get you functioning in everyday life to your fullest degree.
These sessions were brutal. Not so much a hit to my ego like speech therapy was, but it was just plain hard physically. My left arm/hand/fingers were the last to regain mobility and required the most focus of my therapy (I am still working on improving my left hand/fingers to this day).
It has been too long for me to recount my experiences chronologically, so I’ll just write little stories about what I remember. This will be even more flow-of-consciousness than my usual writing…enjoy!
One of my first sessions, I remember sitting in my wheelchair next to the therapy bed/mat. Dan is right next to me, and my therapist is explaining that he’s going to lift my arm up for me to work on my range of motion.
Side note: my arm is in a straight sling full time when I am out of bed. The shoulder joint is so weakened and the muscles have atrophy so the weight of the arm could easily dislocate my shoulder.
The therapist takes my arm out of the sling and lifts it straight up in front of me, heading towards the ceiling.
I immediately become nauseous. I tell him I’m about to lose it. He quickly lowers my arm and they get me a bucket.
We try a few more times with the same result: me heaving into a bucket. Weird, right?
My therapist isn’t sure exactly what is going on, but he says the brain does crazy things when it has been through trauma. He suggests we use “self talk” to try to re-wire my brain.
Does moving your arm hurt? No.
Should moving your arm make you nauseous? No.
He would have me repeat phrases like this as we moved my arm in the therapy session, and he had me use them as I went about my day in other sessions and in my room. It was like trying to talk my brain out of being nauseous. It seems funny now and odd to explain, but it worked! The nausea stopped eventually. It would creep back at times when I tried to do a new activity with my fingers or wrist, but now I knew how to deal with it. Isn’t the brain crazy/amazing!?
The first activity we focused on was getting the arm, as a whole, to move. We did lots of movements with just arm weight or holding a light rubber ball. It was crazy to me that the range of motion was so limited. I had very little muscle left, so you’d think my arm could move any which ways, but it couldn’t. We set goals for how far my arm should be able to move and Dan and I worked and worked each break in sessions and at night to achieve these goals.
One thing that was new to me, is the focus on diagonal movements. The therapists said we rarely use our arms in a straight up and down motion. Usually there is an angle to our movements. So while we did straight up and down lifts, we did a bunch of cross body exercises.
Also, it is easier for the brain to make pathways if both sides of the body are making the same motion. So as often as I could, I would do any stretch or exercise simultaneously with my left and right arm.
One session I remember vividly was practicing grocery shopping and picking up produce and items off a shelf. MFB had a little grocery store set up complete with produce bins, shelves, grocery baskets, etc. just like a regular grocery store. My first attempts to pick up a piece of fruit (maybe a banana or lemon…not sure) were so disheartening. I remember flopping my arm onto the produce bin (think trying to lift your arm with only your shoulder muscle) then trying with all my might to get my fingers to curl around the fruit and bring it back to my basket.
Ken moved us quickly to another activity. Clearly, I wasn’t ready for this. It was a huge reality check for me though. I had so far to go.
Movement was slowly returning in my arm and wrist, but my fingers were taking a while.
Movement in my fingers was not progressing as my therapists had hoped. So one morning they decided to try an electrotherapy. Basically they put a brace on the affect area that has electrodes that touch certain nerves. The race then sends electronic pulses to activate the nerves and make the fingers move.
This scared the bejeezers out of me.
Looking back I sort of understand the fear. It was something I couldn’t control taking control of my body. I didn’t understand fully how it worked or how it could benefit me. Not to say the therapists didn’t explain it, they did. I just couldn’t see the long term benefit of this therapy.
So as they prepped the machine, wetting the pads, putting the pads on the brace, and fitting my wrist and hand into the brace, my anxiety rose and rose. They knew I was nervous, so they said they’d start the machine on low and go from there.
They slowly ramp it up…
Immediately my fingers twitch and start contracting.
Fear takes over. I think I asked them to stop.
It didn’t hurt. I still didn’t have a lot of sensation in my left hand, so anything I could have felt would have been minimal anyway.
It scared me though. To my core. Maybe it was not having control of my body. I can’t explain it though, but I didn’t like it.
That was the one and only time I had this therapy.
Present day me wishes I had done this therapy more. I do have a lot of functioning now in my left hand, but I have that little bit of regret “What if I had done that therapy more?” I don’t dwell on it. It doesn’t consume me, but I do wonder if I could have progressed more had I been less afraid.
Therapy sessions focused partly on functional tasks/movement and partly on more exercise-like movement. The functional tasks were far more interesting and rewarding.
One day, my task was to bake a batch of brownies from a boxed brownie mix. (Of course we would get to enjoy the fruit of my labors once they were baked too!)
My therapist helped me figure out solutions to every step of the process that would enable me to mix and bake the brownies myself. Remember, independence is the MFB goal for every patient.
First up, opening the package. Seems like a no brainer, right? Rip it open. (These were bags of mix actually with a “tear here” type of opening.)
How to you rip open a package with contents that can spill if your left hand can’t hold the bag still?
Holding the bag in my left arm wan’t an option. I’d spill the mix for sure.
Solution: scissors! Stand the bag up on the counter. Hold it steady with my left hand, to the best of my ability but really it was standing on its own. Then cut the top off with my right hand.
Things like this are so simple, but not easily thought of when you have a disability. The therapists were training me how to think of different solutions to everday problems.
Second: pour mix in bowl and add eggs. Since this was therapy, I had to do everything with my left hand, even cracking the eggs. I guarantee there were egg shells in those brownies! 🙂 My sweet family ate them without comment later that night though. My therapist and I laughed over and over at the difficulty of cracking eggs with a disabled hand. I did it though!
Third: mix the brownie batter, about 50 strokes.
I always wondered why the instructions even bothered to tell you how many strokes to do. Do they really think you can’t tell when everything is mixed through? For this therapy session, it gave me a goal. I had to hold an spoon and stir 50 times.
It was exhausting.
I learned another life functioning tip at this point: weighted utensils are easier to hold/use for someone with my type of weakness/lack of sensation. When the signals to and from the brain are weak, it is just easier to feel the object you are holding if it is heavier and larger.
I used a weighted spoon to stir the brownies. It was just a regular spoon that had a foam piece (and something heavy?) taped around the handle. I remember the therapist showing Dan and I how to alter our utensils at home so that I could be more independent in cooking and eating. It is amazing how much easier the weighted spoon was. My therapist made me try both ways (weighted and regular), and I had way more success with the weighted one.
This session was so fun and stands out in my mind to this day. I accomplished a task (yummy treats!) and learned how to modify my kitchen so I could live more fully in the future.
I really regret that I have forgotten this therapist’s name. It was a lady, maybe in her 50’s? Family, do you remember? She was so wonderful to work with, and I remember her beaming at the end of this session.
Now six years out, I can’t remember much more from the occupational therapy sessions. My left hand was the slowest to return to functioning so I focused on these sessions in inpatient and outpatient therapy the most. I think I did occupational therapy twice a day while in inpatient therapy and three times a week…maybe two?…in outpatient therapy. I am so grateful for the functioning that God has returned to my body. The weakness and uncoordination I feel is so minimal compared to where I started: zero movement or feeling on the left side of my body. God is so good.
Next: My AVM Story – Part 39