Karen Lambeck agreed to write a piece for A Brain Injury Life, but warned me that she didn’t know how long it would take or even if she could do it. A month later she emailed me “Just Doing Something Ordinary.” It is a big-picture story in a small space; confined yet intimate. Karen describes taking a shower, an intense effort in every way. We get glimpses of who she is, how she lives, and something we can all recognize: the conflict between knowing what you need and rebelling against needing it. Karen sits on the divide between the urge to throw caution to the wind, and the awareness of living with such a precarious self. –Laurie
Just Doing Something Ordinary
Karen: Andrew, can you please set up my shower bench, so I can take a shower?
Andrew: I’m coming to the bathroom to help you out.
I can get on the shower bench myself, I do not need help.
[Uh! I just need a little break from this guy! He is always in my face! Always around!]
Andrew: I know what you’re thinking. But you know you can’t get on it by yourself. Slipping or falling just one time could hurt you very badly.
[Should I be more cautious in my thoughts and actions? I am a little afraid that I will hurt myself, but not so scared I do not want to try. Of course I know it’s not safe, and I REALLY don’t want to risk an accident. Besides, if I did, Andrew would get so upset.]
Thank you for helping me in, I’m good now.
Karen, let me help you position the shower curtain, so water doesn’t come out and end up all over the floor.
Go away, I can do it myself.
Just stay still and then you can put the water on.
OK. But hurry up, please.
[I have to remember to watch EVERYTHING I do–to stop and think about any movement I make. But it’s not natural which is why I often forget]
As I bend to turn on the water, I notice the bruises on my shins from all my accidental falls. I reach for the shampoo and it falls from my hands. I finally grasp it without dropping.
[I give myself a “Thumbs Up” because I watched my hand pickup the bottle and never stopped watching until I had it.]
Now it’s time, at last, to open the top.
After five attempts, with watching, I finally succeed. I manage to pour shampoo into my hand and put it on my hair. I rub the shampoo in with both my left and right hand. No, I do not condition my hair because it is very oily.
My left hand isn’t as coordinated as my right, so sometimes I rub in again what I had already rubbed in with my left hand. I rinse out the shampoo several times, with the hot water coming from the shower head.
[When the hot water drips from my hair it makes me feel as if I’m wrapped in my covers. I love that feeling so I tend to stay under the water for a while]
Now it’s time to get ready to wash my body. Thank goodness for Body Wash and a washcloth. I tried a bar of soap, but it just slides out of my hands.
[it felt like a smooth skinned snake squirming through my hands]
I tend to squeeze too much on to the washcloth. Once I get my left hand underneath the bottle and grasping it with my right, I turn the bottle toward the washcloth while muttering to myself: While watching your every move, you can make a little bit go a long way.
I turn off the water and spray the shower curtain liner with The Daily Cleaner. I know that others have their doubts but I really believe The Daily Cleaner works well. You just spray and walk away! Then I open the shower curtain and yell out,
Ready and I’m finished!
Andrew says that he is coming.
[I ABSOLUTELY cannot stand waiting for him to come! I want to go in and out of the shower when I am ready, not when Andrew is ready to get me. But I have to admit, he usually is responsive]
After I’m handed the towel, I wipe my hair, face and legs dry. Andrew helps me put on my terry cloth robe (as my occupational therapist recommended).
[The robe absorbs all the water dripping off me. It is soft and warm on my body and could cause me to fall asleep sitting up]
When my robe is on and tied, I swing my legs over the tub. Andrew guards me as I stand up.
I was just doing something ordinary, but now I’m ready for a nap!
This all began with my first brain surgery, 45 years ago
…when a benign polycystic astrocytoma was removed from my cerebellum. That resulted in hydrocephalus (fluid accumulation in the brain) and required a shunt. I had to have a second surgery to put it in. Since then, I have had many neurosurgeries and related procedures to ensure the shunt functioned properly. And 20 years after those first two surgeries, while I was in the process of completing my Masters, the tumor recurred.
All the medical interventions I’ve had resulted in severe coordination, fine motor and balance difficulties. I now require someone to be with me 24/7 to ensure I do not fall. But throughout this ordeal, the knowledge I acquired years ago when I earned my Masters Degree in Health Administration has helped me perform my duties while working at a hospital trade association.