Well I certainly didn’t expect all of that! The support from everyone is incomprehensible. I was only expecting a few of my friends to read this blog, and that would be it. I’m a little nervous now with the extra attention and a much bigger-than-expected audience! But I want to thank everyone who has offered their support in all of the various ways and sent such nice messages. I believe with all of this support I can succeed, however long it takes.
Well, finally my family has been reunited with me here in Dublin. A major amount of family member reshuffling was required to make sure we all arrived here safely. My sister, after finishing her term teaching in London, went out to my Dad in Switzerland allowing my Mum to come back and be with me. This in turn allowed my brother to return to Vienna to pack up his things. After some good blood test results, my father was given time off chemotherapy allowing himself and my sister to return on the 1st of August, followed by my brother on the 5th. It was really great to see my Dad, his presence adds great solidarity to the family. He is looking so well considering what he’s been through.
The day following the return of my dad and sister I had my first day excursion out of hospital in two months. It was quite the learning curve for all of us! It started with a taxi waiting for us outside the hospital with a ramp in place waiting to push me up. As I approached the top of the ramp, it became clear that I was too tall in the chair to fit in to the taxi. The taxi driver, it seems, realised this also at the exact same time and asked me to “just tilt your head to the side”. He had been requested to collect a spinal injury patient who was wearing a neck brace, clearly having a broken neck, from the rehabilitation hospital and he wanted me to tilt my head……. baffling. Obviously that wasn’t going to work. After some humming and hawing he decided to recline the chair further back whilst pushing me up the ramp so as to lower my head. I was strapped in and on we drove.
I could feel the thud of each pothole shoot into my neck. When we arrived at Avoca restaurant in Monkstown the next test for the taxi driver was to find enough space on the busy street to pull in with ample room for the ramp. I was the slowly backed down the ramp, which is very frightening as you feel like the chair is out of control. I breathed a huge sigh of relief as we hit the footpath. The chair was put back in its upright position but my neck was now in a lot of pain. As my sister pushed me I began to painfully realise that the paths are about as rough the roads for a fella on wheels.
As I entered the restaurant (the first public place outside of hospital I had been in 2 months) the first thing I noticed was the change in the way people behaved towards me now that I’m in a wheelchair. The sympathetic smile, the awkward smile or the quick glance away to avoid eye contact; I was definitely guilty of all these before. It is hard to get used to this type of attention. Having said that people were very helpful with accommodating me – opening doors and clearing spaces. But these are things that I never needed help with before which was hard to deal with.
We thought we had it all planned out with regards to the equipment I needed to feed myself and drain myself. However, when we got to the table and realised how low down it was compared to my chair, I thought this would be a disaster and was worried if I would be able to feed myself at all. Whilst looking at the menu, I had to be very particular as to what I chose so it would be easy to eat with just a fork. Considering the last time my sister saw me I couldn’t even lift my arms, she was worried that I would be flinging food all over the place into people’s faces! I put on the necessary equipment and mounted the fork to my wrist. I had to lean forward and reach down lower to the table than what I’m used to. When the food arrived it was chopped up nice and small by my sister. I started digging through the tasty duck and slowly but surely I got through it without making too much of a mess.
When I had seen people in wheelchairs before I would have thought “that’s awful that they can’t walk.” I think that might be what most people think, when unfortunately, there is a lot more to this type of injury than meets the eye.
For example, I do not have the ability to control my bowels or my bladder. I am on a strict bowel movement plan whereby I have to soil, with assistance, at roughly 5 o’clock every second morning. This, a good diet and exercise is very important to prevent future bowel complications.
At the moment I have a tube inserted into my bladder via the penis and this is constantly draining into a bag as necessary. When I am out of the bed and going around in the chair there is a bag strapped to my leg. When this becomes full it needs to be drained. If the bag should remain full the urine backs up into the bladder and kidneys and can cause infections.
After a spinal cord injury the regulation of blood pressure, heart rate and how blood moves to the heart is disturbed. The sensory and temperature regulation does not function normally below the level of injury and the body cannot generate heat by shivering or cool itself by perspiring, which means I have to be very careful about the temperature in every environment.
Everyday I must do breathing exercises using breathing apparatus to make my diaphragm stronger and increase my lung capacity. My cough muscles are also very weak at the moment. Here, they show me various techniques of clearing my throat but they are also quite weak. Last Tuesday whilst in the company of some friends and family, I was having my evening meal. I was talking and laughing and eating brown bread. I became a complacent chewer and swallowed a chunk of crust. Immediately I started to choke. I pushed the table in front of me away and my brother realised I was choking and called for the nurse. She ran in and started pumping on my stomach. While she tried her best, the little Philippine lady hadn’t the strength to release the bread. In the meantime my brother ran out to fetch further help while my friend Aengus and his Dad, Finbar, stepped in to perform the Heimlich manoeuvre. After a number of attempts, I thought I would lose some ribs. The two strong fellas managed to dislodge the bread just as further help arrived and I could breathe again. This could have been a very frightening experience had it happened in another location. Because I was in the rehab hospital with many capable carers and assistants I was not too worried. The ever-helpful assistants then showed my brother and sister what to do should it happen again.
I felt it was necessary to inform those reading this blog what I have learned about spinal cord injury in the last two months. Although my ultimate goal to walk again remains, the act of walking is actually a symbol for a recovery that involves much much more. Everyday is a new lesson for me and another small step towards a full recovery.
A psychiatrist came into talk to me about the events over the past two months and he came to asking me what kind of outcome I expect from this injury. I told him, I expect to walk. He then went on to ask me had I thought about what would happen if I did not manage to walk again. Once again I told him that I will walk. I asked him – at what point do you think I will know that I’m never going to walk again? And he couldn’t answer me. I answered it for him; the day I give up.