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.
Settling Back into Normal Life
My first shower when I got home is etched into my memory. I hadn’t been alone to take a shower in 5 weeks. To say I was nervous is an understatement. What if I fall? What if I get tired? What if my incision splits open? (Ha, so I didn’t really have that thought exactly, but I didn’t like touching my incision. It gave me the hebejeebies!)
I had a shower stool in the shower, so really, tiring and falling wasn’t a true concern. As long as I was smart and sat down when I needed to, I’d be fine.
I really think I used the stool my first few showers than never again. While at home, going up and down stairs and doing all the care for my person, I built up stamina quickly.
Nevertheless, the first shower is unnerving.
Dan sat on the bed in our room and waited for me. He’d have been at my side in an instant if anything were to go wrong. I can still picture him sitting there. I wonder how nervous he was. Maybe he knew I could do it, and it was no big deal. It was a big deal to me.
I chose to continue my outpatient therapy at Mary Free Bed. Even though I wouldn’t have any of the same therapists or even the same facilities, there was a level of comfort and trust with the care I had received at MFB. This decision greatly impacted my family though. Dan and I lived in Grand Haven, Michigan at the time, a good 50 minute drive from MFB. My mom and two sibilings were living with us at the time to fill in the gaps of care should Dan need to be at work (I was to be under 24 hour supervision for the first 30 days of going home). So that meant a LOT of driving for my mom.
I don’t know how often I had therapy, at least three times a week, maybe more. So lots and lots of driving.
I had a harder time enjoying my outpatient therapy. On the one hand, the therapists were changing all the time. Their schedules are so full that it takes a while to get enough space in one therapist’s schedule to see the same one consistently. On the other, I was living mostly on my own, and yet I still had therapists tell me I was “slow.” My ego was so big. I still couldn’t handle this.
Don’t they know what I’ve been through? I’ve had OPEN SKULL brain surgery! I’ve had my head cut open, put back together, and LIVED! I learned to walk again, move my arm, fingers, wrist, tongue…they don’t move quite correctly but isn’t that minor??? I’m smart. My job is an actuary! I know math like these therapists have never seen. I can write Excel formulas that can make your eyes swim. I…I…I…
Big ego. I’m not kidding. I thought I was so smart that there was no way I could be slow. I was so wrong.
Speech therapy was still my least favorite and the most likely sessions for me to be told I was slow. My primary therapist got on my nerves, a lot. She loved pop culture quizzes and games. However, I don’t know pop culture. Keeping up on the current TV shows, game shows, or music is not my thing. I might recognize a song, but I’d have no idea who sang it. Thankfully I was with it enough to tell her that I just don’t know pop culture. It’s not that my brain isn’t working; the information just isn’t there. 🙂
So we ended up playing a lot of card games. Again, not my strong suit but better than the “Who sang this song?” quizzes!
I remember my speech therapist releasing me from our sessions. We had already finished our speech session, and I was working with my occupational therapist. She approached us and asked, “How would you like for our sessions to be finished?” I can just imagine my face lit up with pure joy…ha, I feel a little bad looking back at how overjoyed I was to be finished with speech therapy. I don’t know my response exactly, but I was probably overly enthusiastic about how much I want to be done.