Reinventing Emma (14 page)

Chapter 22

Three Months on – the Rehab Roller-coaster

I'd arrived at Talbot in mid-winter. By spring I was deemed medically fit enough to be able to propel my own wheelchair, which gave me a touch more freedom. In between sessions I'd exit the dark and gloomy life of the ward where my fellow patients were resting on their beds and wheel myself towards the ‘therapy zone'. Here, I'd park my wheelchair in the natural light and warmth of the glass walkway. If I positioned my chair at an angle, I could see the tin roof and treetops in the distance, a glimpse of the outside world while still safe behind the glass.

Although I had improved I was still having trouble keeping up with Talbot. It was a fast-moving, efficient place, because they wanted me to be independent, but sometimes their careless actions and brisk attitude had the opposite effect.

Whether it was forgetting to shut the bathroom door and revealing my naked body to the world, asking me if I'd like a Malteser when I couldn't eat chocolate or swallow properly, failing to put the bed brakes on, or giving me a ‘wedgie' while holding the back of my pants when walking me, there were numerous incidents during my stay that reinforced my feelings of dependency and powerlessness. I'm sure these actions were not intentional, but in my AVM victim mentality I saw them as such. Already feeling vulnerable and defeated, I became fairly cynical about the treatment I was receiving, and that cynicism certainly didn't help speed up my recovery.

In rehab I needed help with just about everything, but hated asking for it. Some people seemed to make the whole process rather difficult. At times the staff seemed too busy to attend to my needs or would frequently avoid eye contact to save time. I remember in about my second week of rehab the first time I really tried to communicate with one of my doctors. He was walking down the corridor on my ward at the end of the day, carrying a pile of notes. I couldn't call out or wave my arms about to get his attention, so I fixed my eyes in his direction. I knew he could see me, but he was busy reading the notes so he kept looking down and continued walking. I know I have done the same myself as a therapist, but the impact his behaviour had on me that day, when I already felt so stripped of all other means of communicating, was huge. I felt so forgotten, like an odd sock. Powerless. If he'd said, “Em, I'll see you tomorrow,” that would have been fine. The disregard I received that day really made me see how powerful communication is and how simple things like eye contact and body language can really impact your relationships and recovery.

There are so many small humiliations in the hospital day. Simple things like eating were suddenly immensely complicated, juggling the tasks of cutting food, getting it to my mouth accurately and then chewing and swallowing it. It wasn't a pretty sight and holding a conversation was quite impossible if a visitor arrived. I often went hungry. At least eating alone in bed gave me the freedom to be messy. When at last I graduated to the dining room I found myself surrounded by grandmotherly conversations and felt self-conscious about my eating style.

At 5pm sharp I'm seated in a low chair. From this height I try to eat the mashed potato and pea meal in front of me. I spend the first 15 minutes chasing my peas around with my fork, mouth wide open in case I capture one. Both hungry and embarrassed at my endless failed attempts, I put down my cutlery and to the other elderly ladies' horror, I use my fingers to pick up the green escape artists and stuff them into my mash. It was either forget etiquette or die from frustration, starvation or dizziness after circling my plate countless times.

I wasn't the only one who had problems in the dining room. Another patient who'd had a stroke was Mel, but she had no physical signs. She had no problem feeding herself but her word-finding difficulties made mealtimes a challenge. “What would ya like, Sweetie-Pie?” the nurse once asked, wheeling around a trolley of green jellies, cheesecake and ice-cream.

“I'll have cheese cake and lipstick,” Mel said.

The nurse, perplexed, corrected her. “You mean cheesecake and ice-cream don't you?”

Mel's conversations were broken with pauses of frustration while she tried to articulate the name of an object or a word that was on the tip of her tongue. While I also had immense trouble communicating, it wasn't due to not knowing what to say. It was merely that I had to relearn how to say it.

Medication was as much a routine part of my day as meals at Talbot. Because I was in constant pain I became the guinea pig for every possible pain medication, but none succeeded in touching even the edge of my raw nerve pain. The medications only seemed to produce unpleasant side effects. Some made my dizziness worse, others caused nausea, and then I would be prescribed yet another to mask that side effect. For example, when I became dizzy I was given Maxolon. The intention seemed to be to cover any symptom that would stop me going to therapy.

Although it was a tough period, small pleasures were slowly returning to my life. I started to take an interest in my appearance again. I'd always had a lot of respect for people who tried to look their best despite their physical disability. They appeared to have not ‘surrendered'. Now I needed to show that I wasn't giving up either. One of my best friends, a nail technician, brought her box of nail tools and polished and transformed my nails regularly. It was so therapeutic having a non-invasive, non-medical procedure that I decided it was time to book an appointment with the hospital hairdresser. She would come to us on the ward and temporarily occupy one of the storage rooms. I was hoping that the familiar soothing experience of having my hair washed would bring a little normality back into my life and boost my self-image.

When I wheel up to my appointment there isn't the usual, “How would you like it today, Em?” … “Look at these mags to get an idea” or “Would you like a coffee?” Instead the hairdresser just handles my clumps of hair distastefully as if to say, “What on earth can I do with this?” She gives me a three-minute dry cut.

“There we go, now just walk over to the sink behind you and we'll wash it,” she says, in a bored tone.
I can't walk over there, I think. If I could walk, I'd walk out of here and to another salon!

But I swallow my frustration and wheel myself towards the sink. “Now just put your head forward.”

I do, dizzy.

“No, no, Emma. I said back.” She flips my head back 180 degrees like a toilet seat.

My tender skull slams against the ceramic sink.

I leave the ‘salon' feeling like a shorn sheep. She's chopped off my hair and hacked my self-esteem even more brutally.

At least my speech was improving and I could debrief and joke a little with my visitors about such experiences. I still had lots of visitors and support, although there were some friends who just sent cards and kept their distance. It was hard not to take this personally, but I assumed they found my new situation too confronting to deal with.

Each day at 4.30pm sharp, Mum and Dad would arrive, greeting me with a hug, bearing a take-away coffee for them and a small cup of lukewarm ‘bubbacino' (froth but no chocolate) for me. Although my speech therapist had said “No” to hot and thin fluids, I could eat the cold white froth and each spoonful was magic. The familiarity of the coffee ritual and their presence was priceless. It was the only thing in that phase that I felt they too could enjoy. That we could enjoy together.

But at the same time I felt that they were wasting their time, money and effort. They could never replace all that had been taken from me. This stroke had wrecked my life. I didn't want it to destroy their lives too.

“What have you done today, Em?” Dad would ask.

“Rehab,” I'd reply in a flat voice.
What was I meant to say to them? That I could now follow a moving finger with my eyes without moving my head
. In my mind, I had nothing to show other than utter exhaustion for the immense effort I put into my therapy each day.

When my friends or family came unannounced to my therapy sessions I felt completely humiliated. Having them cheer from the sidelines while I stacked cones or threw quoits only made me feel disappointed for them that my recovery was so slow. Although I definitely needed their support, at the same time their presence seemed to make me feel so reliant on them. They did for me what I had to learn to do for myself. On the other hand the Talbot staff were always making me do things independently, so when my close family and friends visited, I'd feel so shattered I'd let them take over. I needed a break and it was a relief to be able to drop my guard in their company.

In October 2005, my close friends and family organised a fundraiser called ‘RUN to GEE' where over a hundred of my supporters ran or walked to my rehabilitation facility to raise funds for Talbot and show their support. Even friends overseas at the time organised a London version. They all (even my dog!) wore specially designed blue t-shirts reading ‘RUN to GEE ‘cos we're inspired'. Registration forms, course maps, sponsorship letters and invitations were produced.