An accident in 2013 left me with a spinal injury at C4/5 causing paralysis and very limited sensation from my chest down, severe spasticity (muscle contractions and involuntary movements especially in my legs) and double incontinence. My spasticity and incontinence are the subjects of other posts on this site The Simon Foundation for Continence: and so this post will concentrate on my paralysis and loss of sensation.
My spinal injury was incomplete: so I am left with some movement and sensation, but is quite severe. I spent the first seven months following it in a specialist spinal injuries hospital where I had some opportunity to compare my injury with others. On a scale of 1-10, where 10 is the most severe, I would place my injury about 7: there were some worse, but the majority were more lightly injured then me. Those in categories 1 and 2 would experience natural nerve regeneration and would walk within a few months; those in 9 and 10 would not even be able to sit up in a wheelchair or in bed for more than an hour or so without their blood pressure falling to such an extent that they would begin to lose consciousness.
There has not been a great deal of change since I was first injured. I have very limited movement and sensation below my chest and what I have is not always a reliable indication of what is really happening. During the early weeks after being injured, physiotherapists could be raising my leg off the bed without me being able to tell which leg they were raising, unless I could see it. Both legs felt like they were flat on the bed. Even now, when I go to bed, after being bent all day in my wheelchair, sometimes my legs still feel as though they are bent at the knees for a while, even though I can see that they are not. However, most of the time I can feel the positions of my legs fairly accurately.
LOSS OF MOVEMENT
When my brain issues an instruction to move my legs, they do move a little as instructed but soon come up against a resistance which prevents further movement. I can not stand up. In the early months after my injury in hospital, I was helped into a standing frame on more than a dozen occasions. After a while, sometimes 5 minutes, sometimes 20, I would begin to lose consciousness; I saw stars; my hearing became impaired; silence crept upon me: I would call for a physiotherapist who would help me to lie flat on a bed to restore my blood pressure.
My life remains very restricted. I have been out of my house only about six times since leaving hospital in August 2013. All of these have been hospital visits. I do not regard being housebound as a self-imposed choice. Although friends and a few carers have kindly offered to take me out when I have been out being wheeled over rough surfaces made my spasms even more severe than usual.
I have limited choice of when to get up, when to go to bed and even when to eat.
Friends have been very kind in doing shopping. Even so, there are some restrictions compared with what was possible when I could look after myself. I often find myself eating according to 'best before' dates. I do not drink alcohol because of my medications. Meal times are influenced more by what suits the carers' timetable than by when I want to eat; similarly, times to get up and to go to bed.
I have a limited choice of what I can wear. Many kinds of normal, non-stretch clothes such as shirts, would be very likely to be torn by carers when getting dressed or undressed. I am always casually dressed whether I want to be or not.
Because I can not move in bed, I have to lie on my back for 12 hours each night. If I am uncomfortable or if the bedsheets become displaced, that is just the way it has to remain until the nurses or carers arrive.
Apart from visits by friends, I have no face-to-face social life. E-mails, Skype and the Internet are valuable to have some outside contact but are not a complete substitute. I am not able to visit places I would like to go to. When the weather is good, I sometimes think of where I might go if I could and look it up on the Internet or on Google Street View.
I have not been upstairs in my house since January 2013 and rarely leave one room: most of my possessions are out of reach.
Because my fingers a clawed together rather like an animal's paws, I can not hold a book or newspaper properly and in the right position to read for more than a quarter or half an hour; similarly, using my computer is difficult: I am typing this with two thumb nails.
Holidays, or even a night away from home would be very difficult. Nursing care would be needed; so too would a special mattress to avoid the risk of pressure sores.
My limited reach is made worse by my limited ability to pick anything up. My lack of hand and finger movement makes me clumsy. Often, I drop things on the floor and have to struggle to pick them up with a stick with an attachment. What are small tasks to a normal person, to me are a lengthy ordeals; for example putting my phone to charge involves moving my wheelchair, aggravating spasticity and reaching out to place the phone, which can risk falling out of my chair.
Personal care is diminished. Before my injury cutting my toe nails or finger nails was a very small, occasional job. Now it has become something of a rigmarole of a podiatrist's visit, struggling to answer the phone to book it. A friend cuts my finger nails occasionally; in the meantime they sometimes grow so long as to cut into the palms of my hands when my spasticity is particularly bad, making my fingers even more tightly clawed.
LOSS OF SENSATION
Imagine a condition where we have no feeling, where we can not feel the touch of a loved one. Some people with spinal injuries must be close to that. I am not quite there but I have lost sufficient sensation for me to feel seriously deprived.
Loss of sensation is dangerous. I have scalded my leg without knowing about it; there is a risk of burning myself by sitting too close to the fire.
I feel muscles moving in my legs, especially at the back but I do not know whether I am deceiving myself or not. If someone were to touch my leg I would not feel it.
Below my chest I do not know whether I am hot or cold except by touching with my hands, both of which have some sensation - almost normal at the thumbs but diminishing progressively towards my little fingers.
I do have a few areas of diminished sensation below the chest including the upper side of my right foot and around my catheter. Above the waist I can feel a rough towel, but the sensation is much diminished. My arm are movement is almost normal; so is sensation on the outside, but is diminished on the inside.
I can feel myself sitting in my wheelchair; I can feel the nurses' fingers while carrying out a bowel evacuation and my carers washing me. I can feel them struggling to carry out my leg exercises in what I suspect is a futile attempt to reduce spasticity.
SO WHAT IS THE RESULT?
On awakening on most of the mornings for at least the first two years, I often wished I hadn't; my world had gone mad; justice had become a mockery. So much of my life has been taken away that I have often questioned to myself whether the few scraps that are left are worth the constant discomfort, pain and misery that goes with them. Usually I feel better when nurses or carers arrive: I get quite violent mood swings.
I try not to think of the future beyond a few days. Since my initial injury, I have had no reason to think that there will be any improvement. My train of thoughts has an important effect on my mood: thinking of something cheerful leaves me in a much better mood.
