Courage Is Not The Absence Of Fear
Today marks the 20th anniversary of an event that changed my life
On August 27th, 2001, I had tendon transfer surgery on both my legs.
The tendon transfer operation took strong tendons that were pulling my feet inward (due to weak muscles on the outside not being able to do their job of pulling the foot out which balances the foot) and transferred them to the top of my feet making it possible for me to pull them out. A deeper explanation of how CMT affects leg muscles and the tendon transfer surgery can be found here https://www.cmtausa.org/living-with-cmt/managing-cmt/surgery/surgical-correction-of-the-cmt-foot-part-2-tendon-transfers/
Before the operation, I had significant foot drop – I regularly fell over and more often than not had some kind of dressing on 1, if not both of my knees. I also had prominent callouses on the outer edge of the middle of the soles of my feet. These were caused by foot drop, and tightening and weakening muscles causing my feet to turn in resulting in me walking on the sides of my feet.
In addition to the tendon transfers they also straightened my toes and lengthened my Achilles tendon.
August 27th 2001 was a Monday. Mum and I fronted up to the admissions desk at 7:30 at what was then, the brand spanking new Princess Alexandria (PA) Hospital. The old one having been torn down and a new one built.
They admitted me, popped me in a wheelchair (I didn’t need it but I think it was protocol) and took me to the pre op section where I got to change into the backless hospital gown and giant paper undies. I was so glad to have my Mum there. She helped me change my clothes and get settled into the bed. As a Registered Nurse, Mum brought a calming level of Mumness, and a pragmatic level of nurseness.
Then came the litany of health care staff asking me my name, my date of birth, my address, was I allergic to anything and what procedure I was having done. I guess that was so they didn’t accidentally cut my legs off.
They swabbed my legs with a fluorescent pink liquid and then, finally, I was wheeled off to surgery. They asked if I wanted something to relax me before the surgery. But, ever the toughie, I declined – “Nah, I’ll be right”. But then there were people buzzing about everywhere, asking me more questions and then in the stillness of waiting in the little room just outside the operating theatre my mind started churning and my anxiety levels peaked so, I asked for the sedative.
The next thing I remember is waking up in my hospital room with both legs in plaster and my family and best friend beside me.
I’m pretty sure a Dr was there explaining things, but I don’t really remember.
I had a little hand button that I could press every 5 minutes for morphine. My friend told me that numerous times during my weeklong stay, when she visited, we’d be in the middle of a conversation, my eyes would roll back in my head and I’d pass out.
The morphine made me sick. I came to refer to this week as my Morphine Hell. I felt too sick to eat anything so all I was bringing up was bright green bile. The same colour as the green hospital nightie I was wearing. I had bought some pyjamas specially to wear at the hospital, but they had trouser bottoms which weren’t practical. So, bile green nightie it was.
They gave me some big shoes with Velcro straps to walk in. The idea was that I had to get up and moving ASAP. The day after the surgery, they had me walking with a wheelie walker through the orthopeadic ward.
By Friday, I had been on morphine all week with little water or food, so of course, things backed up a bit. So they decided to bring out the big guns. They gave me 2 doses of laxatives as well as an enema. That night I woke up with the unmistakable feeling of an imminent bowel explosion. I hadn’t been sleeping with the shoes on and I couldn’t walk without them, or I’d slip over. So, in a panic, in the half light of a hospital bed at midnight, I got my shoes on and only sort of just made it to the toilet in time. I was super embarrassed and cleaned it up as best I could.
I got myself back to bed and called the nurse to let her know. I was a bit anxious because the night nurses had been a lot less friendly than the day nurses. But a nurse who I hadn’t seen before came in, rubbed my forehead and said not to worry, it was all ok and I sank back to sleep. The next morning, I mentioned the lovely nurse with the white blouse, red skirt and red scrunchy holding her hair back. The nurse turned to me and in that offhand, casual way nurses do when speaking about something that we lay-people would find terrifying but is just another day to a nurse because they see some shit, “oh, yeah, we have a ghost who visits patients in the night. A few people have mentioned her, and they all describe her as wearing the white blouse, red skirt and red hair band.” So, maybe I saw a ghost. All I know, is that she had a kind and comforting air about her which calmed me at a particularly traumatic time.
I made a point to sleep with the shoes on after that.
The Sunday following the operation was Father’s Day and I was allowed (after a lot of begging from me and “umming” and “ahhing” from the nurses) out of the hospital. The family went for lunch with my friend at the Story Bridge Hotel, and I had my first decent meal in over a week. It was a beautiful, warm winter-almost-spring day and it felt good to be out with my people enjoying ourselves. Afterwards, Mum took me home and we hung out a bit waiting til it was time to take me back to the hospital. When that time came, I burst into tears, I didn’t want to go back for one more night to that horrible, sweaty bed with the crinkly plastic under the sheet. The place that smelled like wee and mushroom soup. I was due to be discharged the next day. So Mum made some calls and sorted it out. I could spend the night at home, and Mum took me back the next morning to be formally discharged and to learn how to navigate stairs with crutches.
I was in casts for the next 6 weeks. Just sitting around writing, reading, going out when I could and watching the traumatic events of 9/11 unfold.
As the swelling went down, my casts got looser and started to rub. I could tell there were blisters. Blisters have a very specific feeling. That dreadful burning sting. The orthopaedic surgeon was reluctant to take the casts off because they needed to be set at a certain level of flexion and he didn’t want that messed with. So, like many times before, I gritted my teeth and worked through the pain.
After 6 weeks they cut the casts off and made bivalves out of them. This is where they split the casts along the sides so they could be taken off for exercises and then strapped back on with a Velcro strap. I was eventually allowed to have the bivalves off when I was sitting and only had to wear them when walking and sleeping. I was deeply grateful for this relief in a humid Brisbane summer.
What followed was 6 months of learning to walk again. For a month or so, I had daily visits to the PA outpatients physiotherapy department going through various balance exercises and stretches to isolate and strengthen the tendon in its new placement.
We were living in an old house in South Brisbane that had a few stairs at the front and a lot of stairs at the back. I got QLD ambulance community transport to take me to and from the hospital so every day I had to go up and down the back stairs because it was easier to get in the car from the driveway than from the curb.
Every morning, I’d slowly make my way down the stairs. The community transport would drop me at the front of the hospital and I’d power off to my appointment. The casts and crutches meant I could walk really fast. It was like having AFO’s.
Then at the end of the appointment, I’d make my way back to the waiting area for the community transport to pick me up and take me home.
When I finally got my feet back to myself, when I could put shoes on and didn’t need the casts anymore, my feet felt tiny. After half a year, getting about in casts and massive medical shoes, it was strange to put normal shoes on. One of the exciting things that was apparent almost immediately, was that I could wear slip on shoes now. Due to my hammer toes, my feet had always previously slipped out of any shoe that didn’t have laces. Every summer, I had to continue to wear sneakers and socks through the heat and humidity, but now my feet were free!!
We moved to Yeronga at the beginning of the next year (Yet again, a house with numerous stairs) and I started studying at South Bank TAFE. On my first day, still in bivalves and on crutches, I walked to the train station only to find that I had to climb an extremely long flight of stairs to cross the road and descend the same on the other side to get to the station. I looked around, there was no other option, so I set my jaw and slowly and steadily, I climbed and descended those stairs. After that, I worked out the bus route which was much easier. Although, this was back in the day before Brisbane had their fancy gas buses, and I had to navigate three steps into the bus, stop at the top of the stairs, put my ticket in the ticket machine and find a seat. So, it was easier but not easy.
The surgery gave me longevity of use in my feet and improved my mobility. I have no doubt that without it, I would now be struggling with terrible pain and unable to walk.
Reading my journal from that period reminds me of the pain and the angst I went through at the time. Learning to walk again at the age of 23 is a daunting prospect.
But, the pain and angst are not what stand out when I look back. What does stand out is how I tackled it all head on. How I dug up reserves of courage and determination that were already part of my character but which I was able to depend upon and strengthen. I went on to get a diploma in community services (community work), then a degree in Social Science (Human services, Community Development, Counselling and mediation) and then at 27, my first job.
In some ways, I’ve come full circle. Finding myself now at the point where I’m dealing with the possibility that I can no longer work, I have had to again lean on that strength and courage to deal with what’s in front of me and make the best decision for me.
’til next time…
Peppa's Place 