April 3, 2014 marks the two year anniversary of my "release" from rehab. In 2012, I had been hospitalized for just over 11 weeks and most recently had been living in an acute rehab facility. I had just been told I was cleared to go home. I had to transition from being a patient/inmate to a newly disabled young woman living on the "outside." That's when the real work of recovery would start.
The idea of leaving rehab should have been joyful for me, I was terrified. I had become totally institutionalized.
I felt a flutter of panic when the rehabilitation nurse told me I could (and should) start sleeping in my own "civi" pajamas; I was going home in less than a week. My bowels and bladder would cooperate, she insisted. "You can't sleep in a hospital gown, forever."
The drill-sergeant/rehab nurse also informed me that the oral suction machine was being removed from my room. If I were choking, while brushing my teeth, I would have to figure out how to muster up a strong enough cough to clear my own airway.... I was still choking on my own saliva.
There was also talk about removing my Gastrostomy tube. I could eat most solid foods, but the prevailing issue was liquids, the smallest amount would still send me into coughing fits.
I remember pleading with the rehab doc and speech therapist to please leave my feeding tube in. Just for a few weeks more? They agreed. Happily, I would leave with my G-tube in place-something I never thought I would say or feel.
My lack of autonomy paired nicely with my injured vanity. To add insult to injury, I spoke like an unintelligible duck, I had holes in my body that didn't exist eleven weeks before and rashes on top of cystic acne, speckled with painful pustules. My skin was breaking out, and catastrophically so. I was finally off all antibiotics, but stress, hormones, and infections were still leeching out of my pores. I was a mess.
While I was in the nursing home, my mother, daily and diligently, maintained my eyebrows, brushed and braided my long hair, washed, toned and moisturized my skin, shaved my pits, and applied deodorant and perfume. She even brushed and flossed my teeth as soon as I got off the vent. However, all of this was coming to a screeching halt. The physical and occupational therapists told my mom, very sternly, to back off. I was leaving rehab and would have to re-learn how to do my beauty routine without help from my dedicated mom. (who happens to be an RN, btw ).
I had to figure out how to be an adult woman again...on my own.
I was scared. I didn't want to become a burden to my loved ones.
My boyfriend had generously invited me to come live with him.
This made me feel both loved and very nervous. I felt pressure to "become normal" as quickly as possible.
He and I were both fiercely independent, and had not lived together prior to my accident. At the time of my release, I barely had the dexterity to dress, feed, and groom myself; I needed a walker to totter about.
I needed help all the time and with everything. I hated to admit that I needed supervision, like a child.
This fact translated into the horrifying realization: when I did go home, the many basic life skills I lacked would fall on my young, newish boyfriend; he would be in charge of helping me put a bra on, getting me safely in the tub, and slowly walking me to toilet in the middle of the night. That's about as unsexy as it gets, folks.
I was so overwhelmed. I had no idea what I was up against, but I knew it was going to be hard. I just had no idea how hard.
A stroke changes the "wiring" in one's head so severely and quickly, one cannot prepare.
I had been an independent, sarcastic, out-spoken, wanna-be femme-fatal, before my stroke.
What the hell was I now? A girl who was scared to get out of her hospital gown and who had a SUPER unreliable bladder? Beautiful.
I was sure my boyfriend and I could do it; have the fairy-tale ending after my massive brain stem stroke.
After all, we were both stubborn, optimistic, resilient, painfully in love, and had sick senses of humor. If we couldn't pull this homecoming off, then nobody could.
What I didn't know, and what nobody told us, is that many of stroke survivors and their caregiver spouses suffer from severe depression and sexual dysfunction in the wake of a stroke.
Although the staff informed me that MOST stroke survivors will struggle with communication, movement, and emotional lability, or some combination thereof, what I did not know was the sheer magnitude of these issues in the real world.
Had I wanted to be an over-achiever in acute rehab, I could have taken gardening, music or substance-abuse avoidance classes, all tailored to the newly disabled. I felt as though no one prepared me for, or offered me a "class" in the interpersonal challenges I would face.
For example, one day, my recreational therapist popped into my room. She sat on the edge of my bed with a clipboard, and asked, what recreational activities, post hospitalization, would I be interested in participating? Did I like to paint? Play an instrument? Bake?
"Sex" I mumbled. She blushed, "Pardon me, honey?"
"Sex, I like to make dinner and have sex with my boyfriend after work."
"Ohh," she chirped, "oooohhh....well...let's just put down yoga."
Talking was such a struggle. I didn't want to argue with this nice lady. I felt a post-stroke emotional outburst welling up inside. "Ok," I muttered. "Yoga."
That was the only conversation I had with a medical professional about potential intimacy issues in a post-stroke life.
Having been out of the hospital for two years has allowed me to gain a lot of perspective. People who have strokes are still human beings with human needs. If lucky, stroke survivors get to go home and re-join the human race. They are husbands, wives, boyfriends, girlfriends, parents and children. My story is not unique. Stroke rehab takes time and is difficult. A lot of what happens during formal rehab is messy, uncomfortable, de-humanizing and downright embarrassing...for survivors as well as their caregivers. I believe that the more the struggles of rehabilitation are talked about, the more help and resources can become available.
If your loved ones are stroke survivors or caregivers encourage them to tell their stories. It makes a difference.