I am starting to appreciate that a friendship with me is not an easy thing to grow.
My very best friend moved to Australia recently and since then I have been blessed with new friendships, many of them. They may not be as deep or have the history I shared with Ryan but there is time for that to grow, the seed has been planted.
Since the accident six years ago I’ve always kept the same circle of friends, only the ones who knew me as I was beforehand. It wasn’t a conscious decision, I just didn’t make new friends. I knew I was lucky to have the ones I did.
Over the last few months things have changed. I have needed to plug the massive hole in my social life.
When I contemplated meeting people for the first time, starting new friendships, I worried about how I would feel. I always have been, and still am, very confident but this was going to be a big step forward.
Would I be paranoid? Would I be quiet, defensive, insular? Would I feel like a burden? Maybe even a charity case? As I said, I was worried about how I would feel. I didn’t take the time to consider the feelings and fears of anyone else.
I realise now, thanks to the honesty of some new friends, that they had just as many concerns as I did. Probably more.
It was all new to them also. Should they mention the accident? Will they avoid looking at the machines and tubes? What do they do if I am unwell? How were they supposed to feed me? To give me drinks? Can they ask me questions about my disabilities? And the main one, will they be able to act normally with me?
I never thought about it, that is a whole lot of stress. I understand now that it would be easier for people to keep their distance.
That is why I am incredibly grateful to those people, my new friends. They don’t see the disability, they see me.
I have experienced the opposite many times in the past. I don’t blame anyone, they feel awkward and I understand that.
Maybe that was down to me. If I wasn’t ready to build new friendships I could have created the awkwardness. Maybe it was them, just not the kind of people who can see past the wheelchair.
Regardless, it is now that I have needed to widen my social circle. Call it fate or call it luck but the right people have came along at just the right time.
To those people, thank you very much.
When I was approaching the end of my hospital stay I was given some advice by a nurse.
A wise nurse who I respect very much.
She told me that I should carefully consider my expectations of what life is going to be like.
She said emotional recovery doesn’t start until I try to build a new life away from hospital.
That I may find adapting to ‘normality’ more difficult than I would expect, maybe even depressing.
I see the wisdom in that now but I didn’t pay much attention at the time.
I was convinced that going home would make life normal again. Get away from hospital and all will be well.
My discharge had been in planning for the last 4 months. I had regular meetings to organise a care package that covered my health needs, to develop contingency plans for emergencies, to ensure my housing was suitable and to decide how all of my care would be paid for. The latter seemingly the most important to those in charge.
I had been in hospital for 16 months and my day of release was within touching distance. The 16th of September 2008, I remember it well.
As the day approached I was high, nothing could bring me down. I bought presents for all the nurses and care assistants who had been looking after me, I spent time saying goodbye to the other patients and I organised some well overdue parties. I remember hatching grand plans, life was going to be great again. Free from the shackles of hospital I was going to enjoy every day.
I wish I had listened to that nurse but instead I believed I knew better. I thought getting out of hospital would be the end of my problems. It didn’t take long to realise I was wrong.
I had forgotten what it was like to live outside of hospital. Over the 16 months I had lost touch with reality and convinced myself that everything would be fine, back to normal. That seems ridiculous now. Of course my life would be completely different but after 16 months I wasn’t thinking straight. Spending so long living in hospital is like a drug addiction that has severe withdrawal symptoms when taken away.
I was not ready for the depression that ‘freedom’ would bring, the depression I was warned about. The hospital was a cocoon of safety. I was surrounded by expert medical help. I felt ‘normal’ socialising amongst others in wheelchairs. I didn’t feel judged by my appearance.
When that safety net was removed I realised how much my life had changed. I was back amongst the same old people in the same old places but everything was different. I began to feel alienated from society. Everyone was looking at me, or so I thought. The places I used to enjoy spending time felt wrong, I wanted normal again. The way it used it to be.
If I heeded the advice given to me my expectations would have been different, more realistic. Convincing myself that leaving hospital equalled going back to my old life brought about a massive fall from grace.
Antidepressants didn’t work. I protected myself by building emotional barriers, I wasn’t going to let anyone in. I found some comfort in eating, constantly. My diet was so bad that I piled on weight but I didn’t care. My confidence was so low that for the first time in my life, personal appearance was irrelevant. I rarely shaved, washed my hair or brushed my teeth. I’m not embarrassed by that, it is now part of who I am.
This lasted for a couple of years by which time I was unrecognisable, both physically and emotionally.
If only I wasn’t so stubborn. If only I had listened to that experienced nurse and accepted she knew better than me but no, I was always right. I was in control and someone like me would never end up depressed. What a pigheaded fool I was.
I want others to avoid going down the same path as I did. If I can share what happened to me, pay it forward, then maybe I will help someone to prepare themselves for life outside of hospital. To be ready for the challenges and cushion the blows.
It is a tough battle that many face. A battle they will lose if they tackle it with the same dismissive ignorance that I did.
I have moved on now but it’s been some journey. From the protective bubble of hospital to the depths of depression and back to enjoying life again. The shackles are finally gone.
The rest of my Hospital Memories can be found here.
I’ve been quiet recently, off the radar. I usually say it’s for no reason in particular, nothing wrong. That’s an easier answer than the truth, I don’t know what’s wrong.
I go through these spells on a regular basis. Friends, tangible and cyber, ask me if I am okay to which I usually reply with a yes, true or not. I appreciate the fact that they care, it’s comforting to know people think about me enough to recognise my solitude.
As I said, I don’t know what is wrong but thank you to those who notice and make contact. I suspect that without you reaching out to get in touch I would sink into depression without realising it.
An easy pit to fall down but much more difficult to climb out.
I am back and I am doing well again, so thank you.
Last night I was dreaming. Just a regular dream, no juicy stories to tell but it did get me thinking. For the last six years I have always been ‘normal’ in my dreams. Not once have I been in a wheelchair.
I would love to understand more about dreams. I am with people I have not thought about for years. I am places I forgot existed. I relive memories I thought were lost. Most curiously, I am always walking.
This didn’t surprise me after the accident but I thought, given time, my dreams would merge with my reality. Six years is a long time for me to be living one life and dreaming another.
I sometimes struggle to decide if these dreams are a blessing or a curse.
My dreams stop me forgetting what it’s like to walk, to touch, to be touched. I know it’s not real but it’s the closest I will get. It is escapism from the chains that bind me. Without my dreams I don’t know how well I would remember what I always took for granted.
If someone loses their sight do they ever forget what it is like to watch a leaf fall from tree?
When I waken from a dream I can be smiling, still in the moment. It only lasts seconds before reality takes control again.
In a blink I am back in bed. Ventilated and unable to move, unable to wipe the sleep from my eyes. The high becomes a low and I spend some time lamenting over my loss.
A blessing or curse?
A blessing. Bittersweet but most definitely a blessing. That old quote ‘Tis better to have loved and lost than never to have loved at all’ could never be more appropriate.
I’ll gladly suffer those harsh awakenings if they provided me with a lifetime of remembering what I once enjoyed so freely.
Now and again, like right now, I feel I am running on the spot. I watch all those around me reach the milestones and achieve all that I was expecting for myself. I don’t seem to be going anywhere.
I was 25, six years ago now, when I had my accident. I had a good house, a good job and I was happy. My life was just as I wanted it, on the path I had planned. That path took a drastic change in direction and the plan I had was over.
By now I would have been promoted at work, met a partner, been married, moved house and started a family, along with much more. I believe.
These major events would have been my bookmarks.
Life is a story, our own personal book and we place these bookmarks along the way. They are there to recognise the turning points in life. To allow us to trace back to that particular sentence, page or chapter of our book.
The bookmarks are placed at the moments of importance, our defining moments.
Over the last six years I haven’t placed any of the bookmarks I had planned but I have been busy creating new ones.
My book is still being written, day by day, albeit a very different book from that one I had planned.
I suppose that’s my point here, and it’s a very short one. It doesn’t matter what book we plan on writing, we need to accept when the plot changes.
What is really important are the bookmarks. Highlights and low points, these are the pages that make your book individual. The rest just fill in the gaps.
I am concentrating on making the right decisions, controlling as many defining moments as I can. The others, I need to hope that my story ends well.
Forcing myself to dig into the past, confront it head-on, ain’t been an easy thing to do.
Some horrible memories.
However, I don’t want sympathy. I want to make it clear that this is a positive post.
Horrible memories or not, this story ends in victory. A reason to have hope when it seems easier to give up.
Anybody going through something similar, a pain that piggybacks every thought and every moment, you need to believe that there can be an end to the suffering. I wouldn’t have believed you but please, take it from someone who has been pushed to the edge but been allowed to step back.
It all started about 5 months after the accident when I was continuing my recovery in hospital. I began to feel a niggling sensation across the back of my head, like pins and needles. It was diagnosed as Chronic Neuropathic Spinal Cord Injury Pain. I was told I was lucky, the tingling was a very mild symptom and it could have been extremely severe.
My luck didn’t last long. Within a couple of weeks I understood just how severe it can be.
I have tried describing this pain to so many different doctors, physicians, consultants, therapists, psychiatrists, friends and family. I still cant get it right because pain is so subjective. This is the best I can do,
Starting at the top of my neck and spreading across the back of my head, from ear to ear, my skull seemed to be as soft as a sponge and felt like someone was repeatedly stabbing at it with white hot daggers.
Nobody could touch it, I couldn’t wash my hair. I couldn’t even slide a T-shirt over my head without screaming. I was in agony almost every moment of the day, only a few seconds relief now and again. Unfortunately, a more vicious pain would come at night.
I dreaded going to bed. That’s when the pain escalated, when my resistance was completely broken.
As soon as I touched the pillow the pain would drill through my head. It felt like every individual nerve ending was being shocked, like an relentless taser gun to the back of my head. I would scream at the nurses to change the pillow again and again and again, desperately hoping that the next one would provide some relief. They all felt the same, like a bed of hot coals.
At my worst I spent 7 nights a week without sleeping, desperate for the morning and the slightly lesser pain of sitting in the chair. Throughout the entire night I would scream, top of my voice. Beg, hoping that someone could do something. Cry, tears flowing down my face, snot running from my nose (attractive!).
I admit that in the early hours of the morning I would have accepted anything for the pain to stop. Even death. Chronic pain sufferers will understand that.
I remember a nurse sitting next to my bed, holding my hand and in tears. She knew nothing could help but still, offered what she had.
Treatment seemed futile. The concoction of drugs had no impact. Not on the pain anyway. They did strip away at my spirit, my personality. I lost myself.
They tried acupuncture and other holistic methods but any contact was unbearable so they pumped more drugs into my system. I can’t blame them for that, I begged for it.
This continued for over two years. I was always in some degree of pain but the bad spells were unbearable.
After leaving hospital my family and friends offered all they could but my torture through the night was new to them. I had tried to prepare them, the nurses had tried to prepare them, but I don’t think it’s possible to prepare anyone for listening to a loved one in so much pain.
I tried to hide the agony, keep it to myself, but the pain took over when being transferred to bed. My family and friends often had to sit in another room and listen to me screaming for mercy, heartbreaking for them. My carers performing the transfer were constantly apologising, it wasn’t their fault and there was nothing they could do but they still felt responsible.
The drugs were destroying me. So much morphine, a disgusting drug. I knew I was changing, a faint shadow of myself. I only wanted to be asleep or to be alone. I didn’t even believe it was helping the pain but I was completely addicted. I lost days and I lost many friends, I was a horrible person to be around.
The only thing that gave me some respite was cannabis. Judge if you wish, I hope you are never so despairing that you would try anything in the search for comfort. Then you would maybe judge differently.
I don’t remember the pain going away, it wasn’t an instant release but it did loosen its grip over time. More than two years after those tingles started I felt strong enough to cut back on the morphine and other heavy painkillers. I gradually began finding myself. I was a different person. According to those who stuck by my side through those years, I was ‘me’ again.
Like anyone who has been or is suffering from chronic pain, I understand what agony is. I thought I did before but I was far off the mark. In the past I used the word ‘agony’ so flippantly. “My headache is agony, this cough is agony, my legs are agony after playing football”. Now I give the world the respect it deserves. Now I can truly appreciate days when I am pain free.
It was a wicked lesson but I am grateful for it. I now know that during the most desperate of times, when it seems like there is no hope and the suffering will never end, things will eventually change. I’ve been to rock bottom and spent years there but I still managed to find a way back.
I still fear pain, I still suffer from it, but now I believe finding solace is a test of endurance. We just need to cling on, by our fingertips, for long enough.
The rest of my ‘memories’ can be found here.
I don’t believe in any God. It’s maybe for the best, I don’t think we would get on very well.
I did believe when I was young. I was brought up a Christian and religion was a significant aspect of family life. I went to church every week and I can still remember the weekend I decided to ‘give myself to God’. I was maybe 11 or 12 years old and I had no reason to doubt what I had been told at home, at school and at church by adults I trusted.
As I reached my teenage years I was less influenced by my family, more influenced by my peers, went to church less frequently and my education encouraged more free thinking.
Whatever the reason, I grew so distant from God that I could no longer see him.
I found science and facts more persuasive than blind faith. Put something on a bit of paper with an equation or formula and I will study it. If the facts are correct then I will believe it. There it is, right in front of me. Something that religion could not offer.
Although I don’t have any faith in God, I do believe that the bible teaches us many valuable lessons. I believe in the principles and the fundamental ethics. The bible is a great guide to follow however I don’t need to believe in a God to learn from it. I don’t need a God to understand right from wrong. I don’t need a God to appreciate the gift of life. I just don’t need a God to be a good person.
That is good enough for me but I can understand why so many turn to religion.
A God who will ALWAYS love you, even when you feel nobody else does. The promise of eternal life in heaven regardless of your actions. Show genuine remorse, ask for God’s forgiveness and you’re back in the queue to enter heaven. WHAT A GREAT IDEA!
Of course whenever there is a carrot there is a stick. Ignore God and live a life without faith and you will be condemned to hell. Spend eternity in suffering. A good threat to keep you in line.
Okay, I am simplifying somewhat but I do get the appeal of Christianity and why it attracts so many. Unconditional love and spending eternity in heaven with your loved ones. That’s some payoff, it sounds perfect. I just wish I could believe it was the truth.
I’m not suggesting that following God is an easy undertaking. I know many, including family members, who struggle against temptation and can find themselves questioning their faith. It may be appealing but it is not without its challenges.
Throughout my time being in and out of hospital I have met many Christians who still have faith in God. I respect their conviction, to still love their God after being dealt such punishing blows. It is beyond me. These good people struggle through unimaginable difficulty while the filth of humanity can enjoy charmed lives. If God does exist then he does not believe in justice and rectitude.
To be completely honest, the biggest barrier separating me from God is that I would not be able to forgive. If I was to be convinced, without doubt, that God does exist I could not find any love. Not for a God that I see as cruel and unjust.
I am a good person. I have my flaws but don’t we all? Surely God would understand that. Surely I should be allowed to live with some semblance of normality, without so much pain and suffering.
I cannot accept that my circumstances came to pass under the watch of a loving God. Worse case scenario would be that God planned my accident. Best case scenario would be that He watched on and allowed it to happen. Either way, I don’t want a relationship with that God.
I know the argument. ‘God gave us free choice’. I understand that. If I decided to commit murder then God gave me that choice. I would pay the price in this life and the next.
I only jumped into a swimming pool.
My neck is broken, I’m paralysed from the head down, I am on a ventilator, my family’s lives have been turned upside down and I suffer in pain every day.
Yes, I probably am bitter but why would a fair and loving God allow that to happen? I didn’t choose to break my neck, I chose to jump in a swimming pool. It seems that God has punished me for some unknown reason. Whatever my sin, the consequences are clearly out of proportion. Or maybe there is no God and life is just a game of chance.
The question ‘why do bad things happen to good people?’ will never be answered. I have certainly never came across a convincing explanation. A few have tried but fell wide of the mark. Quoting scripture is not quoting fact. Having faith is not having facts. Without factual evidence I just can’t believe. It seems we have reached a dead end.
I think an answer to that that would be the first step of a journey to move closer to God. Maybe someday.
I apologise if any offence has been caused. I am not belittling anybody’s personal faith. Far from it, I envy the conviction. My lack of faith is not a criticism aimed at those who do have faith.
I’m going to blow my own trumpet for a bit if you don’t mind.
On the 26th of May every year I take the time to congratulate myself, another year under the belt.
It is an anniversary, even a birthday of sorts. It was May the 26th 2007 that I went on a trip to Spain and broke my neck. The accident was life changing to say the least. Not just for me but for those close to me. For the last six years I have been attached to a ventilator and completely paralysed from the neck down.
If I’m honest I didn’t see myself lasting five years. I was lucky enough to have survived the original accident but my condition has left me vulnerable to so many threats, I thought my body would have given in by now.
I have flirted with death more than once but I keep scraping through, it seems that I’m not ready yet.
The journey has been rough and I have only one regret, the years I wasted sunk in depression and weighed down by heavy medication. I would not socialise, I pushed friends and family away, I was lonely, I was angry, I was bitter and I had surrendered to the pressures of a life I didn’t want.
If only I knew then what I know now, life is too short to wallow in the past thinking about what might have been. We can only play with the cards we are dealt and you can still win big stakes with what looks like a weak hand.
Thankfully those days are behind me. I have never been in a happier place than I am now so I will blow my trumpet and I will celebrate this anniversary. I have spent enough of my life in the darkness, I think I have earned the right to be proud of myself.
Will I be here May the 26th 2014? Possibly not so I need to respect the time given to me and be thankful for what I have. Not just for the major blessings but for every little bonus during every single day. It’s only when we combine it all together that we can understand how lucky we are.
I’d like to share something extremely special. My greatest passion in life is supporting Glasgow Celtic. This song is called You’ll Never Walk Alone and as a fan of Celtic it is considered an anthem, sung on special occasions. The atmosphere at Celtic Park would make your hair stand on end but the words are what makes it especially important to me.
If I had a soundtrack to the last six years I’d like to think this would be it,
When you walk through a storm
Hold your head up high
And don’t be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of the lark
Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on walk on with hope in your heart
And you’ll never walk alone
You’ll never walk alone
Last week I was back in hospital for an emergency consultation. The doctor’s clinic happened to be next door to the intensive care ward where I spent the first 3 months of my 16 months in hospital.
It came to light there could be a problem with my heart and that I would need an ECG. The consultant asked if I wanted to go round to intensive care and have it done while I was there.
It had been six years since I was in that room and I was unsure how I would react to being back. I hesitantly agreed to get it out the way.
The large ward looked exactly as I remembered and the only empty bed space happened to be the very same bed I called home for so long.
I wasn’t expecting the reaction to be so powerful. So many memories came flooding back but there was one constant theme. It was the permanent circle of support that surrounded that bed. I have always been grateful to my family and my friends for dragging me through that time and while sitting looking at the empty bed, no machines, no tubes, no get well cards, I remembered just how unwavering that support had been.
The flashbacks were so vivid, as if I was sitting watching them unfold before my eyes. Some amusing, some profound but all powerful and precious.
One of the first, and the most emotional, was the memory of a day I had forgotten. Or maybe just suppressed.
If you know the circumstances surrounding the accident then you will know that I was in Spain for a friends stag weekend. The wedding was only two weeks later. A wedding I was supposed to be an usher at, supposed to read a passage during the service, supposed to party long into the night with all my friends.
I remembered how I struggled through the day of the wedding. Everyone close to me was there together. I had to occupy my thoughts, try in vain to distract myself from what was going on elsewhere.
Unexpectedly, Ross and Lynsey turned up before going on their honeymoon with the DVD of the day. They sat beside me as we watched it on the laptop. I remember crying for the first time since the accident.
Liam, the best man, used his speech as an opportunity to highlight my absence. After some kind words an applause rippled through the room and I felt the love and support of all those important people in my life. Ross, giving the most important speech of his life, took the time to talk about how much I was missed. I could only look at him through tearful eyes and try to show my gratitude. I hadn’t regained my speech since the accident but I remember mouthing the words ‘thank you’. It was all I could manage and the gesture seemed insignificant compared to the appreciation I felt.
There were also plenty of fun times during the early months, fun times I had forgotten about and I sat grinning as the memories came back to me.
I had no neck movement for 4 or 5 weeks so when I had a visitor they sat at the side of the bed but I could only see them out of the corner of my eye. It was much more comfortable, and perfectly safe, to have them gently lift my head and turn my neck to the side so I was facing them.
Little did they know that this was perfectly comfortable and perfectly safe. It was the ideal situation for my twisted sense of humour to take the stage.
I talked them into ‘helping me out’ so they carefully lifted my head off the pillow and as they started to slowly twist my neck I would scream “AAAAAAAAAHHHHHHH”.
Their reactions were hilarious. To me anyway. I remember Ross in particular, jumping out of his chair he ran away, screaming for help at the top of his voice, flapping his arms in the air like a big girl. I was in stitches and when he eventually caught on he stopped running. Every nurse, patient and visitor was staring at him when he slowly turned round. Half smiling, half growling and red-faced. We still have a laugh about his reaction to my twisted prank but he was not alone in falling for that one.
The joke only worked once on each person but sitting next to that bed after so many years the memory was a welcome reminder of some of the great times we all shared in spite of the situation. I am sitting smiling right now, refreshing flashbacks lighting up otherwise dark days.
I remembered spending my 26th birthday in hospital. I remembered the days and weeks before it, worried about how I would cope with the contrast to my usual celebrations. I remembered wanting to ignore the date, just another day in hospital.
Most importantly I remembered the surprise and the shock when I was taken to the hospital conference room and 30 of my friends were waiting for me. Room decorated, mountains of food, music playing and some faces I had not seen since the accident. Yet again I was amazed by the love and support offered freely by those around me. They continued to exceed what I could have hoped for from a group of friends. Again, I am sitting smiling. Filled with pride and gratitude for how fortunate I have been.
One more important memory came back to mind.
One morning, in the early hours, I was lying in bed listening to music. I had been reflecting on my friendships and the strong bonds that had held them together over the years. In particular since the accident, those friends continued to surprise me with their loyalty and dedication. With my music on shuffle a song came on that seemed to have been written for that one moment in time. A song that captured how important those friendships were, how they were the foundation to all my positivity and hope. I listened to it 2 or 3 times before writing a long e-mail to those friends I owed so much to. I needed to let them know how I felt and I couldn’t wait, so many important things I wanted to say that I couldn’t risk forgetting.
It was probably the first time I had completely opened up and as I listened to the words again I sent the e-mail and cried. Lying in a dark hospital ward in tears, taken aback by this sudden realisation of how blessed I was.
I came home from that visit to hospital last week and I listened to the song. I cried again but more importantly, I was still smiling.
I had been lying flat on my back for six weeks but I still didn’t feel ‘disabled’.
I was in denial about how much had changed. “Most people lie still when they are in bed anyway so I could put up with this, it isn’t THAT bad”. I realise now that I wasn’t thinking clearly but denial is a very powerful defence mechanism.
I wasn’t ready to think about the next stage, to think about what happens when I’m not lying on my back. There were some obvious questions like ‘how do I get out of bed?’ but I had been fighting them off, refusing to ask. It is very easy to block out what we are afraid to face.
No matter how well I was hiding from the questions, one afternoon in July the answers found me.
My hospital bed was surrounded by the group of usual faces who brought two new pieces of equipment with them. The first was called a mobile hoist. It looked like an oversized claw for grabbing teddies in a fairground machine.
I couldn’t take my eyes off the other thing in the room. It was a cold, cheap, empty wheelchair. It looked sad, like it should have been tucked away in the corner of a nursing home. Not sitting next to my bed, not waiting for me.
It was a horrible moment of realism. There it was, the ‘thing’ that would turn me into a freak. At least that’s how I felt at the time, my insecurity still shattering my confidence. I tried not looking at it, concentrating on what the doctors and physiotherapists and occupational therapists were saying but I could only focus on the wheelchair.
They explained what was going to happen and asked if I was ready. The question sounded rhetorical, like it or not it was happening. I still answered “yes”. With four bodies at either side of the bed they rolled me, firstly on to my left hand side and pushed a canvas sling underneath my body. Then onto my right and half of the sling was pulled through the other side.
The hoist was wheeled over until it was hanging directly above me and they began to lower the hooks. Stopping a few inches from my body the four corners of the sling were looped through the four hooks.
The claw began to rise, lifting me out of bed cradled like a baby in the sling. When it stopped rising I was hanging in the air with my legs dangling lifelessly through the bottom of the sling. Trapped like a stuffed animal in the fairground grabber.
For the first time I understood what feeling disabled was like
They moved me into position above the wheelchair and started to lower me down. I was sitting in the chair before I realised I had landed, no sensation of sitting down, no awareness of my own body. That was the first time I had experienced a total lack of perception, no connection between my body and my surroundings. I was feeling more disabled by the minute.
For some length of time, no idea how long, bodies jostled for position round about me. Measuring dimensions, screwing this on, screwing that off, checking blood pressure, moving the footplate up, spreading the armrests out, clambering all over each other in silence bar the occasional grunt and groan. When they were finished they stood back, admiring their work I think.
For the first time I was facing the world, not the ceiling. To be perfectly honest, I can’t remember how I felt at the time. I’d like to think that it was great. The relief, the satisfaction, the sense of achievement but who knows, maybe I was scared. Maybe that’s why I can’t remember. I can promise anyone going through something similar that there is no need to be scared. It gets better. Every time gets that little bit easier.
We couldn’t go far but I insisted that I wanted to get out of the ward. I was struggling with cabin fever and wasn’t going to miss this opportunity to escape the room. We went to the lounge, where my family and friends had spent so many hours sitting waiting to see me. I will never forget being pushed down the corridors for the first time.
A neck brace held my head rigid and straight, not an inch of give up or down or left and right. My eyes darted from one side to the other trying to take in as much detail as I could.
I felt like a floating head.
I was void from the neck down, my body was just a prop for my head. Almost dreamlike, my bodiless head hovering along the corridors in slow motion. Like watching images on a TV taken from cameras in my eyes.
This was an introduction to one of the most drastic changes I was facing. Approaching life from a wheelchair alters everything and it takes time to accept the new lifestyle. Adapting to life without mobility was not easy, I wasn’t used to being so reliant on others.
The key to adapting was control and in time, I took control back. I needed to gain the confidence to take command and communicate what I wanted. To be ‘pushed around’ doesn’t mean I need to be submissive. I still dictate where I go and when I go, when to speed up and when to slow down, when I stop to chat and when I am in a hurry.
I wish I had been mentally prepared for that first journey as a floating head. I realise now that the physical battle has not been as challenging as the psychological one. That experience was one of many examples why.
I have met people in the last six years who have struggled through the battle to adapt, some who have been defeated by it. So much time, money and care is invested in medical support. In my experience excellent medical support. People need to be offered a similar investment in psychological guidance to find a road back to happiness.
Hopefully the health care industry soon recognises that physical strength means little without emotional well-being.
I try not to write in anger. I would much rather keep things positive and not let frustration get the better of me but what the hell, I’m human and I am allowed to be frustrated. I’m allowed to be angry.
For a wheelchair user pressure sores are the risk involved in enjoying life, always lurking in the shadows waiting to pounce. If I am out of bed for the day, say 10 hours, I am sitting in exactly the same position and putting pressure on exactly the same areas without a seconds relief. Think how many times during the day you are up and down and moving about. Even when you are sitting for a prolonged stretch you constantly shuffle and readjust, often subconsciously. If for 10 hours I happen to be sitting on a crease in my jeans or if a seam is out of position the consequences can be cruel.
This happened a week ago. After a day out at the cinema followed by a night watching football with a friend I went to bed and heard the words I always dread, “your skin is broken”.
At the base of my coccyx there was an area no larger than a fingernail without any skin covering it. Could have been a number of things, too many to speculate, but the damage was done.
In years gone by I would have ignored it, my invincibility complex convincing me it’s nothing to worry about but last year I was taught a severe lesson. After ignoring a small pressure sore I continued to get up as normal, rubbishing any advice from my carers or nurses. I ended up spending three months stuck in bed and missing all of the summer (as much as we get in Scotland). So now I am cautious, something very unnatural to me.
I have been in bed for one week now. Spending six hours on my right hand side before being turned to spend six hours on my left hand side. Back to the right, then to the left, then to the right and so on and so on until day and night become the same and one day merges into the next.
I am so uncomfortable. I’m lying so far round on my side it’s not natural, not for six hours without an inch of mobility to relieve any pain. I am so bored. Social networking can only occupy my mind for so long, I can only watch so many films a day, I can only sleep for so long. I am so irritable. I keep snapping, biting the head off those trying to help, cancelling visitors because I don’t have the energy to socialise, only harming myself by turning everyone away. I am so f*cked off and I am angry that after all the shit I need to deal with I’m now expected to put up with this.
Why give in to the anger today? I was supposed to be getting up, my skin should have been healed. The district nurse came out this morning to remove the dressing. After looking at it last Friday everyone agreed that the weekend would have been plenty of time for the healing process to finish. Apparently not.
She says so cheerily “that’s great, only another couple of days”. Go f*ck yourself, that’s what you said a couple of days ago. Don’t they realise that another 48 hours of lying in pain and trying to pass one minute at a time is not “great”? Sometimes in my darker moments I wish this on others. Not forever like me but just for long enough so they have some understanding.
Anyway, this is the first time I have written in anger. It doesn’t feel any better which I suppose is a lesson but it did pass some time.
What time is it now?
Is that all???