Hospital memories part 4 – Floating head

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 β€˜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.

@Stevenceltic81

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58 Comments

  1. Dermot

    Good insight to the feelings people could face if coming up against disability.

    • Thanks Dermot. It would have helped me at the time so hopefully someone in the right place at the right time comes across it. Such a huge change it helps to have someone who really understands what’s happening close by. Would be great if I could be that person. Thanks again

  2. Jean Mc Cormack

    Loads of courage Steven lots of inspiration to other people who are struggling .x

    • Thank you Jean. If it ends up helping someone else then it’s all worth it. Cheers X

  3. Jackie

    Steven, I love (maybe not the correct word, but I can’t come up with anything else) reading your blog. I have been telling people I know about you lately. About how you never come across as angry, loathing, bitter in your blog – when you have every right to be. I suppose that’s not the way to tackle your disability because it could turn you into a very bitter, twisted person. And I know from reading your blog & seeing your Tweets that you’re anything but. And I’ve been telling them about how when I read your blog it has me captured from the first word. I find it fascinating (perhaps the wrong word again) to read about what happened to you & how you are coping with things. I laugh & cry openly when I read it & it takes a lot for me to do that, especially when I’m in the office at work.

    I bet back then, when you looked at that wheelchair, you wondered how you would ever live your life again. But from what I can tell, you’re doing a pretty damned good job of it, as much as you possibly can.

    Keep up the writing – I look forward to your next blog, yet again!

    Jackie x x

    • Thank you for the great comment Jackie.

      I’m happy with love and fascinating, no complaints if that’s how you feel.

      You are right about how to deal with my situation. I did go through my spell of being bitter and twisted, wasn’t good for me or anyone around me. Glad I seem to have came through the other end and I am enjoying life (despite that bloody chair :-)). Never been better to be honest.

      Thank you again for reading and for taking the time to comment
      X

  4. Jackie

    Not a problem, Steven. I look forward to your next instalment – way better than any soap opera! πŸ˜‰ lol

    x x

    • I don’t know, it’s hard to beat watching reruns of River City πŸ™‚ thanks X

  5. Insightful and helpful post. Thank you. Big cyber hugs. Paulette

    • Hopefully helpful to somebody when they need it the most. If not, it helped me to look back on these struggles with some pride.

      Thank you has always and I hope you are keeping well

      Steven

      • It was helpful to me, Steven. To hear your experience makes me take pause for what I can do to be part of the solution to perhaps help others like you. It’s helped also highlight for I feel is a really important and neglected aspect of medicine and treatment, how do we address the emotional issues adequately. Bless you friend. Paulette

  6. I have also found that the psychological battle is harder than the physical one. I see it all the time with my students and their families as well. And yet I have never met or heard of anyone who specializes in counseling regarding the emotions faced with disability.

    • The spinal unit I spent over a year in had psychologists and I did speak to them on occasion.

      Unfortunately they were of very little use. There was no genuine understanding of what I was going through and they tried giving the textbook psychologist answers, it’s not that simple. You can’t learn how to help me by going to university, and I’m sure you feel the same.

      Some charitable organisations provide support but it needs to be rolled out through the health service using counsellors who have some life experience.

      Anyway, thank you very much for the comment and I hope things have picked up for you recently.

      Steven

  7. Steven I cannot tell you how gripping that was. I was devouring this. I admire your ability so very much. You inspire me. Thank you for sharing your story.

    • Hey stranger!

      Haven’t posted in over a week because I was struggling with this one, the words just didn’t fit the memories but I think I got there in the end.

      As always Colleen, your comments mean a lot and I am sincerely grateful.

      Thank you

      Steven

      • Hi Steven! I had noticed you hadn’t posted…. πŸ˜‰ No stalking I swear!

        But I did go to your blog a couple of times to leave a comment but noticed you had made comments so I assumed (I know I shouldn’t!) you were working on one.

        I thought while reading this how difficult it must have been. How do any of us fully explain an experience to someone who has never shared this kind of experience? And make them feel it?

        I don’t know, but very obviously you do. Very well done.

        Is it okay to leave random notes of “hi” on your blog?? I don’t ever want to throw off a line of comments by randomly throwing in a “HI!”.

        πŸ™‚

      • Please, stalk away. I would be flattered!

        It’s actually on my bucket list to have a stalker so you would be doing me a great favour. Drop by any time. It can take me a long time to put one post together. Not just from a literary point of view, although that can be tough, it is also to do with the voice recognition. It can take a long time to proof read over and over because of all the little mistakes. I am rather pedantic in that way, one of my many idiosyncrasies that make me wonderful πŸ™‚

        I’ll get round to visit you soon, put the kettle on X

      • Well now, I don’t think I have EVER been on anyone’s bucket list. Technically I understand I am on the list if I choose to be a stalker. I will consider it.

        I am learning, through your posts and comments, that there is a whole lot more that makes you wonderful. πŸ˜‰

        Kettle is always on here. Tea of preference is Lyons. Let me know yours so I can have it handy.

    • Jackie

      That’s exactly how I feel with Steven’s blog. This is what I was trying to say in my comment, but just wasn’t as articulate as this. lol

  8. Okay, so I came back to stalk you today, lol. Read your back and forth with the wonderful Colleen, who fixed us up…that’s how I found you, from something you wrote at her site. Came back today to let you know I’ve had you and your post, powerful post, on my mind. Never know where those ripples will land. Wishing you a good day. Paulette

    • Thank you again Paulette, and credit to Colleen for being the socialite that she is!

      I do appreciate you taking the time to comment and giving me the encouragement and the reason to keep on going with the blog.

      Take care

  9. Hi Steve

    Another great post πŸ™‚ Oh and thank you for answering the questions in your last post. I can’t begin to imagine the sensation and lack of it the first time you were in the wheelchair. The floating head goes some way to explaining the feeling, but as with phantom pains unless you actually experience it you can never fully grasp what it is like. As we mentioned from a previous post it is more often than not the mental and psychological effects that are harder to deal with than the physical issues at times. I have been given the offer to talk to someone recently, but at the end of the day you have to accept what the issue is and deal with it the best you can. Life with a disability is a constant roller-coater ride that we can never get off of. We can only build up a tool kit of strategies from our experiences to help us deal with the physical and emotional issues. Psychological support should be offered from a couple of days after the trauma to help you cope from the start, not be offered months and years later. People would be able to come to terms with the life changing situation and move on quicker if help was offered early on. Thanks for your recent support and keep up the great writing πŸ™‚

    Take care, Helen πŸ™‚

    • You are absolutely right, the support should be part of the rehabilitation but it ain’t going to happen as the NHS budget is slashed to the bare bones.

      Maybe with the emergence of social networking and blogging the responsibility lies with ourselves and other people who have actual experience to offer the support. Shouldn’t be that way but if we know someone who would benefit from a chat then we should try and make that happen.

      Thanks again for the understanding, I appreciate having you around considering that despite many differences in conditions there are plenty of similar obstacles we face.

      Thanks

      • That’s very kind of you to say about having me around. I feel the same about you too, it can be good to bounce off one another at times. Like you say there are some similarities in what we face and can identify with some of the issues and challenges we go through. I have to admit I am glad I’m in my shoe than yours. I’m learning a lot about your character and how someone can manage to come to terms with such traumatic experience as yours through reading your posts. There is things in your blog that everyone can take away with the,m which I think is one of the reasons so many people find it interesting to read πŸ™‚ Through the blog you have voice an from your experience you many messages, glad you are sharing them with us πŸ˜‰

      • Love that comment. Thank you for telling me exactly what I needed to hear, very well timed! πŸ™‚

  10. Steven, I’ve noticed that quite a few responses to your last post and this one have come from others also in difficult situations. The mutually supportive tone shines through. Luckily for me I’m not in that position but I feel I’ve learned a lot from you, and the others too, and look forward to following your blog journey. All the best.

    • I’ve noticed that too and it is a constant encouragement to keep going. A huge network of people have different struggles but can learn from each other.

      I am glad you are not part of that network but maybe someday you will know someone who is and you will be in a better position to offer support. I hope you would.

      Thanks as always mate

      • I did know someone in that type of situation and tried to help. In hindsight I would do some things differently with the knowledge I’ve gained from reading your blog. That’s where the educational aspect of your posts mustn’t be under-estimated.

      • It was always something I hoped for but didn’t know what the reaction would be like. I’ve been blown away by so many great comments, including many from yourself.

  11. Gerry Wright

    Great read, hang tough Steven lots supporting you

  12. River City rocks! lol

  13. Okay that last comment was from one of your replies…. as always I feel so inspired when reading your posts. I can only reiterate what everyone has said *hugs* πŸ™‚ x

    • You did have me confused for a second!

      As always, thank you x

  14. Hello Steven. πŸ™‚ Just fulfilling my stalking/stalker duties. I’m kind of new to this and I don’t think once a week is “enough”. But we can build up to it if necessary. πŸ˜‰ Just came back for a little more inspiration. You make an impact.

    • I’ve been having a little break from blogging but as my official stalker you need to keep up the good work. I expect the very best from my stalkers πŸ™‚

      Thank You Colleen

      • πŸ˜‰

        I hope you are feeling well, a little better every day.

        I will have to research stalking to see what “the best” is for them. I’ll get back to you on that. πŸ˜‰

  15. Again, thank you for sharing all the insight and thoughts. I fully agree with your statement on the importance of emotional well-being. I go back and forth with how I feel about counseling. My doc wanted me to go see a counselor lady they have that specializes in helping people with chronic health problems. She’s great and extremely intelligent, but I personally never feel comfortable talking things out with people that intend on taking notes like I’m some kind of lab rat – such is the job of a counselor. I’ve found I do better without them at this point. However, I have seen good counselors be wonderful for many people. Perhaps there is someone in your area that has the same kind of specialty? Occasionally they can pull some good ideas out of their magic box.

    • Thanks for taking the time to give such a well considered comment.

      For me, councillors just don’t do it. Maybe I’ve never met the right one but I always feel like their answers and suggestions are from a textbook.

      If I want to talk I’ve got people around me who will listen. If I need advice I’d rather get it from someone who knows me personally.

      I’m sure they help many people, just not me.

      • Ah, I feel the same way. I don’t blame you. I’m glad you have people. πŸ™‚

  16. How you doing? I’m thinking of you. Sending good thoughts. Paulette

    • I have had a tricky couple of weeks but seem to be on the mend now, thanks for asking. Heading out to paint the town red all day/night Saturday so I better be at my best!

      Just keeping quiet with the posts at the moment, having a mini break. I’ll be back on it soon.

      I hope you are doing well my friend

  17. sean

    hello how long have you bin injured? have u researched stem cell therapy in china worth a try.

    • Hi Sean

      My accident was six years ago and yes, I’ve researched every type of experimental research on the go. Lots of good work with stem cell but at the moment it’s lower level injuries they are looking at.

      Thanks,

      Steven

  18. This is an amazing blog! Thank you for sharing your life. I KNOW your blog is going to be very useful to my friend whose D-i-L was paralysed in December 2012. Lots of hugs!!

    • Again, thank you very much. It is the biggest compliment that you think I can help your friend. What age is her daughter in law?

  19. Truly I don’t believe there’s any way to prepare for such a huge life change. No matter how much info you get, the journey from your head to your heart is the longest – and the heart is ultimately the place where you will find acceptance, peace, strength and purpose.
    You write really well so keep at it!

    • Thank you Beth

      The adjustment is a long journey, I’ll still be learning until my last day. Some aspects are so ‘normal’ now but I still come across a new challenge each day.

      Thanks for taking the time to read and comment

      • in the same vein, and because I’m thoroughly undiplomatic, are you using voice recognition , I seem to remember you saying you did, and how easy is it etc etc etc, a blog post on the nuts and bolts of that would be interesting. If I’m being too forward feel free to say

      • I do use voice recognition. It’s a blessing and a curse. Don’t know what I would do without my access to the cyber-social-world but it can also be infuriating. Trying to dictate a long post is tedious and frustrating, makes it more of an achievement to click that ‘publish’ button.

        I definitely have planned to do a full post about voice recognition at some point. I’ll get round to it eventually.

      • cool

  20. Stopping by to give you a big cyber hug. πŸ™‚ Paulette

    • Gratefully received Paulette. You couldn’t have timed it any better.

      I hope you are keeping well. I’ll stop by soon, have a read and say hello. If I don’t then feel free to publicly chastise me πŸ™‚

      • A better time? Feel free to share if you’d like. And, once bonded it’s a deal, no obligations or expectations for you to stop by or do anything other than live the best life you possibly can. I’m allergic to chastisement, lol. I wish that for all my friend, cyber and in person, you included. It’s lovely to see you over at Colleen’s chatting and trust me that’s more than enough. Please take care and know that you’ve friends out here that wish you well. πŸ™‚

      • I’m just back in bed after managing to get up for three hours. Been stuck in bed for so long with an infection, what a relief to get out the bedroom and feel some fresh air on my face. Sometimes you need a hug to share your happiness, that’s why you could not have timed it any better.

        Your words are very kind and your sincerity touching. Plenty of empty words typed from behind keyboards, it’s easy to spot when someone really does care.

        Thank you
        X

      • I hear you, about it all. Glad for this connection. I’ve been a fly on the wall with you and Colleen for a while, and it’s been a gift, a lovely back and forth and lot of caring there as well. It’s from that that I stopped by here originally. I was moved by your words, and of course compassion for your situation. Glad I stopped by at a good time to give you that hug. Here’s another HUG for good measure. πŸ™‚ Take care, friend.

      • I am never one to knock back a friendly hug πŸ™‚ catch up with you soon P x

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