I had to go to Rustenburg this week to speak at a manager’s meeting. The trip was manageable but not without its challenges.
I think most people find long-distance traveling tiresome and perhaps being paralysed from the neck down exacerbates it. But, I have done it many times before and will continue to grab every opportunity that comes my way. Anything, to get out!
Dad, my care assistant and I set out around midmorning on Thursday. I was mentally and physically prepared for a five hour drive. In my normal routine, at home, I am usually catheterized intermittently four hourly but, if I’m careful not to drink too much, I can push it a couple more hours. I chose not to insert an indwelling catheter that day as I often need to do on a long trip. I knew that it would be risky but I was confident that the trip would go smoothly and we wouldn’t be delayed in any way. It just meant that I couldn’t have anything to drink until we got there. Doesn’t matter Tracy, you’ll survive! People can live for days without water if they have to. You can do it! Dear God, please let us get there quickly safely.
Thankfully, the drive up was without incident except that somehow I was sitting skew. I knew it. I could feel it. My care assistant struggled to get me straight for at least ten minutes before we left. I eventually told her to just leave it as I was beginning to get ratty. In hindsight, it was a mistake. I should have insisted on being seated correctly before we left. So, as a result of my impatience, I suffered the consequences. As we drove along, my knees flopped from side to side with each bend in the road, causing my shoes to put pressure on my ankles which resulted in my feet swelling up like balloons.
We arrived in good time at a country hotel outside the city despite Dad’s American girlfriend (GPS) not having a cooking clue where to direct us. At one stage my care assistant was trying to hold the phone to my ear while I was attempting to get the directions from Mom, which she was reading off the printed map Dad had accidentally left behind on his desk. Despite the frustration of not being able to hold the phone by myself and struggling to hear Mom, I was beginning to feel anxious. I had been sitting in exactly the same position for four-and-half hours. My care assistant had tried her best to get her hands under my butt as often as possible, along the way, to release the pressure. But, I knew that I was at great risk of getting a pressure sore or getting the potentially fatal autonomic dysreflexia (a spike in blood pressure) which could easily be caused by a distended bladder in quadriplegics. My body was beginning to protest. I was so uncomfortable. I need to pee – now!
Once Dad had checked us in, we pulled into a quiet spot in the car park to offload. I have a thing about people watching me as I’m being lifted into my wheelchair. I hate the staring eyes.
The room had a high, thatched-roof and it was cold but clean – Hmmm… well sort of – Dad says the only difference between our two rooms was that my room (a deluxe suite) was cleaned once a week and his room (a standard room) was cleaned once a month.
At that stage, all I could think about was getting onto the bed to have my bladder emptied and to rest my aching body. My neck and shoulders were in agony. Those muscles work continuously on the road, fighting against the movement of the vehicle in order to keep me from falling over. I just needed to put my head back, against the pillows, and relax for a short while.
I wanted to cry when I saw my feet. I have vivid memories from my childhood of seeing old ladies with huge, swollen feet in their slippers. It disgusted me at the time and now, here I was trapped inside an eighty-year-old body. Hmmm… but, I like to think of it as a very sexy eighty-year-old body.
After all this time, I still feel like I’m living in someone else’s body. It feels unnatural. It’s stiff and uncooperative. And it feels even more foreign when I am traveling – out of my comfort zone. Oh God, I hate this bloody body! I want my fully functioning body back again.
As the sun set, my room felt more and more like a refrigerator. It was freezing. Since being paralysed, my body has lost its ability to control temperature. I guess, now I know what it’s like to be a reptile. Thank God I brought my own heater. We would have died without it.
The pamphlet in the room explains that the hotel offers a true African rural experience away from modern disturbances like telephones and computers – a break from the technology and choice I have grown accustomed to and dependent on. Oh crap, no 3G signal – no Internet and hardly enough cell phone signal to make a decent call. I’ve got a feeling, it’s gonna be a long, long night.
Although I had my laptop with me, I couldn’t do anything because my care assistant was lying on the bed right next to me – as in if I could straighten my arm I would be able to touch her.
This was seriously compromising my privacy. Remember, I talk to my computer. I definitely wasn’t going to feel comfortable pouring out my heart – and probably bitching about her – with her listening to every single word. I was frustrated. I was dying to get onto Twitter and Facebook so that I could just communicate with the outside world. Even the television reception was shocking. I was bored – stiff. I think I need to organise my life better. I need a single, drop-dead-gorgeous, male care assistant. Hmmm… now, that sounds like a good plan.
As I lay on the uncomfortable bed trying to warm up after coming in from dinner, I desperately tried to go to sleep. I’m not used to the sound of the deep, even breathing of somebody sleeping right next to me anymore. As I listened to my care assistant sleeping soundly I became more frustrated and irritated at my own inability to fall asleep. Dear God, why can’t I just have somebody special – somebody I love – and who loves me deeply and intimately – sleeping next to me instead? Is this really how life is going to go on for me? Surely, you didn’t intend for me to live on this planet alone for the rest of my life?
The worst was yet to come. Despite assurances from my client, as well as the hotel, that the accommodation was wheelchair accessible with a roll-in shower, this was not the case. The shower was minute. There was no way my commode and my care assistant were going to fit into the same space. The shower head was fixed to the wall and there was no flexible hand shower so there was no way I could get close enough to get my body under the spray of water. How the hell am I going to wash my hair? I want to go home!
As I sat in the warm winter sun waiting to go into the conference room for my presentation, I tried to convince myself that I still looked pretty even though I hadn’t washed my hair and had a proper shower. I was grumpy. I was also feeling very sorry for myself.
I steered my chin-controlled, battery-powered wheelchair up the steep ramp and my heart sank as I faced my most hated barrier – a step – at the top. Oh shit! Dad! Help! Please!
I took a deep breath. And put a smile on my face as I entered the room and faced the audience, pretending to be confident even though I was shaking (with fear) on the inside.
The talk went well. I know that I touched some hearts. And that makes it all worthwhile. I would do it all over again without a second thought.
Sometimes, it is important for me to be reminded to be grateful and not to take everything I have for granted. I know that I lead a privileged life. I am a brat. I know. And I am spoilt. And for that, I am grateful.
On the way home we picked up my good friend, Pam and her twenty-something son, Bruce along the way to give them a lift back to Nelspruit. I became quiet as they chatted among themselves. I was lost in thought when Bruce asked Tracy, what would be the first thing you would buy if you won a major international lottery?
I was too tired to give an intelligent answer and mumbled something about a new car.
When we eventually arrived home, I was exhausted, desperate for a pee and ready for bed. Bruce offered to lift me out of the front seat of the Combi and carry me to my room. I was too tired to argue and I knew it would just be a lot less hassle if I let him do it. Besides, he is young, strong and sexy. As he carried me down the passage, I suddenly had a thought. Hmmm… if I win the lottery I’m buying myself my own personal toy-boy. Yeah!