Two types of progress

My discharge date has been asigned, I will be leaving the NRH around the first week of October. If I am not happy with my progress, a few weeks can be added after a meeting with the consultant. Basically, the condition I roll out of here in October will be the finished product from the NRH. Just over three months of physiotherapy, occupational therapy, sports and social activities, they feel I will progress no further. So where does that leave me?

I am very lucky to have the family, neighbours and friends that I have. Without them I don’t think I would have even got this far. With them I have the ability to progress in my recovery. Hours and hours have been endured by my family to establish the next port of call. My brother’s girl-friend, Jenny must have researched every spinal recovery facility in the world, from China to California. With further research and phone calls to patients who have undergone treatment in the various facilities, we have managed to narrow it down to just two spinal centres, either in Thailand or Barcelona. Both facilities have huge costs. This is where my friends and neighbours have swooped in to take over. They set up the trust fund to ensure that all the costs are covered which is a huge worry off our minds.

On Saturday a sports day took place here at the NRH. I watched the table tennis, basketball and shot put, to name a few. I was enlightened by just how able all these disabled people were. Some have adapted to each sport using different techniques and were managing very well. All these people have accepted their injury and were embracing what they can do. For me, I feel like I have been forced into a new world, a world that gets little or no attention from the able-bodied society. These people were happy and enjoying the sport they were engaged in. Laughing even. But it wasn’t just fun, there was a streak of competitiveness. It was clear that a lot of training and adapting had taken place in preparation for the day. But above all, there was an enormous sense of encouragement and well-being.

I am afraid to accept it. If I accept it maybe I will remain here forever! I have accepted that I will be in a chair for a long time before I reach my number one goal. That goal has not changed!
I liked my old life, I had just finished college, I was young and free, employed and I was very optimistic about my future. I was excited! And over-night it has all changed!

Also yesterday I spoke with the Antrim Rose, a beautiful girl from Carrigaline. I used to play basketball with her brother. Anyway, she is a wheel-chair user for nearly ten years now. She spoke about her road trip from Belfast down to Kerry and the success and fun she had with her boy friend, who is also a wheel chair user! That’s in contrast to two out of the four outings I’ve had where I tried to use the toilet and on both occasions the door didn’t close behind me as the toilet wasn’t big enough, once in the cinema and once in a restaurant. In fact the toilet in the restaurant was on a lower level to where I was eating. The stairs lift to carry me down was out of order! I had to go out the front door, down the road, take a left and continue down to the delivery entrance where I could gain access to the toilet. When I got there I didn’t even fit! I think I’m turning into an angry wheel-chair person!! Wheel-chair rage!!!

On a less frustrated and confused note I have progressed with regards adapting to wheel chair life. I have down-sized in wheel chair. I got rid of the throne which was nearly impossible to manoeuvre. Now I have a smaller chair which is more compact and way easier for me to push. I’m going wheeling slowly but it is great to not have to rely on someone to push me every where I want to go.

For me there are two types progress. One is about regaining movement and recovering. The other is about adapting and learning new skills to optimise the movement I do have to make wheel chair life easier. It’s obvious to see which type of progress I want to improve in more, but for the moment I still need to accept and learn the other new skills.

Also the movement that I do have is getting stronger and I have started dressing and learning Spanish on an app my sister downloaded for me, so things are improving!

And just now this evening I was given the go ahead to remove the neck brace that has been stabilising my neck for eleven and half weeks now. So far it is a relief to get it off and my neck has healed well. We shall see how the next few days go with regards strength and range.

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Progress photos

Rolling around

Maybe I’ll fly instead

My family

An insight into spinal cord injury

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.

My Family

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.

A Day Out

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.

The Injury

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.