It’s a couple of days before the first operation and we have to go down to the hospital to fill out some forms and do some gait analysis with the prosthesist that will make my leg. They will look at how I walk and determine what parts and components will suit me best.
Entering the hospital I am smacked with a wave of nerves. It’s all starting to feel very real now.
I can’t explain it but being in the ward I feel nauseas and physically ill.
We meet with the head nurse of the orthopedic ward.
I of course make some sort of awkward joke, since this is how I cope with nervous situations.
There has only been one other patient who has had this surgery at this hospital, a double amputee that has travelled from the UK to have the operation.
The fact that he has travelled so far to have it with Dr Al Muderis fills me with confidence.
I enquire about him and the nurse lets us know he is not a fan.
“But I would be freaked out if I lost my leg now, but I guess you are now probably used to it” he says in what I gather is an attempt to be consoling. I try not to visibly bristle at his insensitivity.
He explains that after the surgery they will give me a drug called ketamine which is known to give people powerful hallucinations. He tells me to expect to feel like I have spiders crawling all over my skin, see pink elephants and doors in walls aren’t there.
“Patients often ask us to close the door, only there isn’t one there,” he says.
While on this drug I will need to be in the high dependency ward.
I start to freak out. I envisage something akin to a bad acid trip.
I am starting to feel more and more nervous.
I ask about going to the gym in the weeks between operations and he gives me a strange look before telling me I will need to take it easy for a few weeks so I can recover and let the wound heal.
My Dad agrees and fixes me with a stern look.
I know this is the sensible thing to do but I am worried about being inactive and putting weight on. It probably seems a vain thing to worry about, but this year I have lost 20 kilos and I don’t want to put any back on.
I am starting to feel like I am in the line for a scary ride at Dreamworld. It’s always worse in the line, you start to panic, your heart starts beating faster in anticipation of the thrill and unknown terror that is about to take place. Once you are on the ride all is fine, it’s just the line, the waiting that is the worst.
We fill out some forms with another nurse and she fixes me with a confused, bewildered but slightly amazed look.
“Wow you look fantastic for your age,” she remarks.
Now it’s my turn to be puzzled.
Turns out there had been a typo with my date of birth and she thought I was 45 rather then 25.
Next up is a visit to ACP where I will do my gait analysis and discuss what knee, foot and other components will suit me best.
I had been given an extensive list of surveys to fill out covering everything from the level of pain I was in to how I felt about my leg and was I happy to talk about my amputation. Like so much on this journey, it was a little confronting.
I sit with Fiona, one of the prosthetists to talk through my goals for the new leg.
I tell her I want to climb Mt Coolum, walk without pain and generally walk further. I also want to ride a bike, do a squat with proper technique, be able to step up with my right leg during Step class and be able to wear high heels.
She fixes me with a stern look and tells me that these goals are more about having the right components rather than osseointegration surgery.
She doesn’t say it outright but I feel like she is judging me and that she feels my goals are superficial. I can’t help but worry that they are. But these are all things I would love to be able to do and can’t so really who is she to tell me what is a valuable thing to want?
Even so I feel I need to reassure her that my reasons for this surgery are not superficial and it will really change my life in a tangible worthwhile way.
“While I would love to be able to do all of those things essentially why I want this surgery is to walk without pain and rubbing. Just that alone will be amazing.”
She nods and seems satisfied with this response.
Stephan, the other prosthetist, joins me along with Mum and Dad and he tells me gently that stepping-up with my right leg will be near impossible even with the surgery. He explains that for amputees like me with no actual calf muscle it is the single most difficult thing to do.
He says he only knows of one amputee that can do it and even then it was no easy feat.
The same goes for doing squats with perfect technique.
There is a lot of talking about my goals and what knees and feet would be best to help me achieve them. While I was focusing intently at the time, looking back I can’t recall much of what was actually said.
All I could focus on was the sinking feeling that the whole appointment felt very disheartening like they were telling me I was expecting too much from the new leg and a lot of what I thought it would be able to do was unrealistic.
They also tell me that the best knees and feet cost anywhere from $20,000 to $70,000 each and while I know my parents would love more than anything to give me the best, that is simply too outside our limits. I can’t help but feel how unfair it is. The rich can afford the best, they can have the best parts, the best legs, an easier life. But if you are disabled and can’t afford to drop $100,000 on a new leg then life is infinitely harder.
Just yesterday I had read an article in Grazia about the amputee model Viktoria Modesta. She spoke about having four different legs for different occasions and walking out of hospital in heels. Sure it was inspiring but it also made me feel sad and jealous. It’s nice and easy for those that can afford it. I have never had that luxury and have had always had to make do with what was offered on the Government Limb Scheme.
In the disabled world it’s the same as the able-bodied world where the rich and beautiful really do get it all.
There is also a lot of discussion on the importance of taking it slowly with the new leg and not going too hard too soon. Stephen regales us with tales of people who have been so excited about how easy it is to walk after the operation that they have gone full pelt into life and have torn thigh muscles, twisted the implant or have a had a nasty fall.
The falling is the thing that scares me the most. Stephan stresses the importance of doing as much as possible to avoid a fall as this is where trouble strikes. He tells us about a lady that fell off a bike and dislocated her hip and another who fell over and his implant pierced the skin and had to be refitted.
I gulp. As it is now I do my fair share of falling.
I worry that I won’t be able to do as much at the gym as I do now. While I’m not a huge risk taker I do go hard and push myself to the limit and I worry what this will mean with the operation.
They also bring up my hip and the uncertainty of how that will go with his operation and the possibility of needing a hip replacement quite soon after the surgery.
This worries me as this will mean more time off work and away from friends. Would work even give me any more time off?
Again I am struck by how long the post-op recovery is. I had no idea it was so huge, Mitch had made it seem so easy. Stephan tells me that it will be at least three months until I am functioning like I am now and while I will be walking I will probably need a crutch to walk with for the first few months, if not longer.
I am struck by how much I had underestimated the enormity of the operation. Perhaps naively I had just thought I would have the surgery, recover, learn to walk and then boom, back to normal life.
Somehow it doesn’t seem like it is going to be that simple.
I can see now the next six months are going to be pretty hard with a lot of struggling. But I guess they never said it was going to be easy, but they did say it was going to be worth it.
I worry about not being able to go to the gym. How will I stay sane without my daily workouts? I’m worried I will lose my fitness and put on weight and become unhealthy again. I still have more fitness goals to tick off and weight to lose and I curse myself for not losing more before this operation.
I want to cry but don’t want to upset my parents so I keep it in. For the first time since hearing about the operation I am starting to have doubts as to whether I am making the right choice.
Despite the disheartening feel of the afternoon, Stephan assures me that life will be easier with the new leg. I may not be able to achieve all my list of goals but my life, walking, the level of pain, it will all be infinitely better. This is what I will have to focus on.
For the actual gait analysis part of the appointment I have to wear my old leg. It’s the first time I have worn it in three weeks and I am struck by how weird and cumbersome it is. Add in the fact that I have lost five kilos since wearing it last and it is swimming on me. I can barely keep it on. I desperately try to hold it on while I walk and each step is accompanied by squelching noises that sound like I am farting, as the leg loses suction. Fiona is not impressed.
I struggle though the exercises and walking tests and boy is it a relief to get it off at the end and get back on the crutches. I have never been so grateful to see my crutches.
I feel emotionally drained after the appointment and stare out the window of the car as we drive home. I know I shouldn’t invite the feelings of self-pity in, but they keep knocking on the corner of my mind. I know I shouldn’t but I can’t help but think, why me? Why must I go through this? Just like I did throughout my teenage years, I cling to the fact that there must be a reason for all of this.
There must be a reason why I have one leg. I just haven’t fully discovered it yet.
H gives me a call to hear how the appointment went and I am grateful for the way he discusses my leg like it is going to be some cool robot with nifty attachments like Inspector Gadget or a Swiss Army Knife Leg. He tells me I need to think about having a machine gun, or a shovel and perhaps an umbrella. I smile at the absurdity of it all but right now it feels better than the reality.