Part of the reason it’s taken me a few days to write this post is because it’s really long, but I thought it would provide an interesting perspective on the entire experience. It’s also very personal to me and deeply moves me as well to remember — and relive — these moments. Those of you who have stayed in the hospital due to traumatic injury will certainly relate, but I write this more for those of you who haven’t been in the situation before to help you better understand just how taxing and tedious it can be.
I was in the car a few days back with my mom, who completely without provocation started telling me her point of view on my hospitalization (I had brought up an old position I’d held the summer of 2003). It was moving for me to hear her take on the entire experience, and I thought it would provide some insight to everyone on how disability acquisition and traumatic injury can affect family members.
So I’m putting into English the words she said to me that day (and where more detail is required, added that, too). Eventually her story leads into my own words as well, to emphasize certain points, but I think it’s really important to get the gist of how a mother’s heart will break and go out to her daughter in time of severe crisis. There is nothing more beautiful than a mother’s love for her child, and I hope I’ve done it justice here.
Whenever Pamela mentions the summer job she had in 2003, I get upset. I remember she was constantly booked up with appointments (she was an independent contractor), and on the night of 6 July, 2003, we had stayed up late into the night talking, even though she had to wake up early the next morning to attend a work conference. I was so impressed with the way she was growing and maturing that our talk just went on into the wee hours of morning.
Then, on 7 July, around one in the afternoon, I got a call at my office from my husband telling me Pamela had been taken to South Suburban hospital and was unconscious. I felt instantly guilty because I thought it had to have been due to exhaustion — and caused by the sleep deprivation I’d been partly guilty of the previous night. Of course, since she’d always been healthy with no medical problems in the past, I wasn’t too worried.
At about three, I received another call from my husband, who was on the road. Our daughter had been transferred to the University of Chicago Hospitals, and apparently was on her way to the operating room!
How did passing out from sleep deprivation turn into a hospital transfer and surgery? My husband had no answers. Of course by this point I was too distracted to focus on my office work, and one of my kind coworkers told me I should take the rest of the day off, that she knew the way to the hospital and would drive me since it wouldn’t be safe for me to drive myself in such a worried state.
I met my husband around five at the hospital. Pamela had been admitted into the intensive care unit after an emergency craniotomy, an operation that opens up and removes a portion of the skull. She had had a massive bleed that had required cleaning out the clot, but not much other information was yet known. After the operation, they put her in a drug-induced coma.
My husband and I kept asking the neurosurgeon questions — what had happened and why? What caused the bleed? Everything was a question mark.
Will she be okay? Will she be able to move? Will she be conscious soon? What about her ability to think? Will she remember everything?
There was no way to know.
Every day I went back to work, shoved my worries down deep, escaped the nightmare that was my daughter’s sudden hospitalization by intently focusing on each task I was given. My colleagues marveled at my ability to set aside the emotions involving her situation, but it was my sense of responsibility that required I focus on supporting the family with my work rather than letting my worries get the best of me. I’d learned long ago how destructive unbridled emotions could be; if I had just allowed myself to give in to the upset, I wouldn’t have accomplished any of my work duties or been able to take care of my husband or my other daughter — or myself.
Life became automatic at this point. I got up every day and went straight to work promptly by eight thirty, checked my familial worries at the door, and picked them back up at five thirty, when I’d get back in the car and drive an hour and a half to the hospital.
Pamela was eventually weaned off the drugs keeping her comatose, and she drifted in and out of consciousness over a period of a few days. It was never clear whether she was aware of her surroundings or not, so I would sit beside her and hold her hand, whispering into her ear, “This is Mama. Mama is here, Pamela, and if you can hear me, squeeze my hand.” Sometimes she would respond with a light squeeze and others, not.
When she was finally properly awake, she couldn’t speak or move anything on the left side of her body. The doctors and nurses told us she had regressed to infancy and wouldn’t be able to talk for a while.
Now, taking care of a baby is difficult — but it’s also fairly simple in that babies are small and you can carry them in your arms as you mother them. It was exactly like taking care of a baby all over again, except she was in her nineteen-year-old body. She needed constant watching, changing, feeding. And because she wasn’t speaking there was no way to know what she wanted. Sometimes it seemed like she wanted to write something down, but when I gave her paper and a pen, it was all illegible scribbling.
The medical staff just encouraged our family to be patient and treat her as if a toddler, so my husband would show her children’s flashcards and brought her her old stuffed animals from home to keep her company.
Teaching her to speak again was also just like it is with a toddler. Every day I would repeat, “Say ‘Mama.’ Ma-ma.” Finally, one day she took a big breath and voicelessly, with just her breath, released a “. . . Maaaaa . . .” It was the most exciting moment in weeks.
And all of a sudden, when she finally began speaking, she wasn’t speaking English, but rather Mandarin, which is the language my husband and I have spoken with her since birth. It was strange because she hadn’t spoken a word of Mandarin to us for something like ten years at that point.
Every day, she would repeat the word for turtle throughout the day. I was afraid she had completely lost her ability to think properly because I didn’t know what that was supposed to mean.
The nurse told me the mental regression probably had brought back old memories from childhood, and eventually we realized she was remembering the pet turtles she had had with her cousins many many summers ago while staying with my sister’s family in Taiwan. We would later also find out that it was also a fixation she had on Finding Nemo, which she’d apparently watched four times at the cinema prior to her hospitalization. Her friend had given her a fairly large-sized Nemo plush, which she never let out of her sight during her entire hospital stay.
She also requested we bring her the little plastic Squirt turtle toy she had acquired from McDonald’s earlier that summer to satisfy her “turtle” fixation.
|Working with the physical therapist, 2003.|
Then basic rehab began. A therapist would come in and work with Pamela for a little while to help her sit up and be transferred to a wheelchair. When she was well behaved (the regression made her as impulsive and unpredictable as a temperamental baby), she would be taken outside to spend some time in fresh air and change her surroundings. Her arm was kept in a sling because the neurological damage caused by the stroke had created a two-finger-wide gap in her shoulder where the arm was dropping from its socket.
To be continued . . .