After I read this, I thought about Henry Scobie – the protagonist in Graham Greene's novel 'The Heart of the Matter'. In the final pages of the book, Scobie consciously graduates through a succession of tasks that he will perform for the last time, prior to taking his own life.
If we regard Scobie as a non-fictional person – one who is not enmeshed in the determinism of his creator – then he has significantly more potential freedom than you do in your present situation. There are things that are beyond his control that set limits on his freedom, there are other things that may be negotiable, and then there is a range of achievable possibilities. For example, he doesn't have to kill himself. The miseries that have led him to narrow his options down to an eventual singularity are mostly of his own making, born of a prosaic cowardice; a failure to stand up to the unrealistic demands of his wife. That said, he can certainly go in other directions. Prison and penury likely await him if he does nothing. If he were more proactive, he could carve out a life for himself as a fugitive from justice in a foreign country.
The plight of Scobie enlightened me to the idea that, within the range of freedoms that are possible to us, we set our own narrower limits. I have been trying to recall the last time I made physical contact of any kind, however fleeting, with another human being. In 2024, I have had my blood taken and I have been manhandled into an MRI machine. That is the full extent of it. The friends who I see occasionally in person may nod their head at me in acknowledgement, and there the line is drawn. Those who might regard this as repressed masculinity fail to understand the psychology in play – the blank telepathy of two or more people who provide support just by being in each other's company, where the joys and trials of life are inferred rather than openly discussed, and nobody thinks to fling a drunken arm around your shoulder while bellowing the chorus to Wonderwall. It is a deeper bond that transcends words; that shows itself in simple acts of kindness and maybe in grand acts of sacrifice. I assume that, if any of these men put their hands on me, it would be with some functional purpose in mind. I certainly have the freedom to cultivate relationships with more touchy-feely individuals, thereby widening my human experience, but choose not to, as a matter of preference.
At the same time that most us exist well within certain limits of our freedoms, we are also commonly railing against barriers that prevent us from getting what we want, or what we feel we deserve. If we fail to approach these parts of our lives, that lie beyond our full control, with realism and moderated expectations, then we run the risk of being drawn into a downward spiral of anger bitterness and resentment.
In your extreme case, the spectrum of possibilities that are available have narrowed to about the width of a Venetian alleyway. There is a mental battle to be won; an acceptance, where you don't agonise over the things you can't have, because that can't lead anywhere good, but where you don't close yourself off to the possibility that things might improve physically, either as a result of rehab or through technological intervention. Accepting these limitations and finding ways to live well within them is not a tacit admission of weakness. Any man who is able to formulate a meaningful and fulfilled existence while in confinement (whatever form that may take) demonstrates strength of character. He is, I would argue, a man of courage.
This is responding to a very small part of this but I feel sure that all your friends are now googling wheelchair shapes and sizes and trying to figure out how to hug you better. Honestly looks like just a matter of intentionality and good core strength, one can’t just give any old hug and expect it to work. I don’t believe that that little part of this isn’t a tiny bit improveable.
Why *did* you only get three months of rehab rather than eleven anyway? I mean for all that it was deeply traumatising and awful, I wonder if there is anything we could collectively do about that.
It seems a long-standing policy of Stanmore that they claim to give you more intense rehab but for a shorter period than other centres. They claim it works better in the long run. maybe that's true, but it also doesn't factor things like "does this give the person enough time to find a place to live or are you going to just dump them in a care home next"? Because strangely enough, vegetating in a care home for four months rather undoes those three months of intensive rehab. (Yeah, I feel quite bitter and short-changed. 14 years of Tory austerity and NHS decline of course also don't help here. Reid went to rehab in 2010, which I suspect was very different to 2023/4 in terms of resources and basic functionality also.)
These days only one in three people who sustain a spinal injury get to rehab at all. (This is for England). One in three. There are waiting lists, particularly in places like Stanmore which have a large population in their catchment area.
The ‘normal’ length of stay at Stanmore is 8 weeks. Other centres in England give you slightly longer, but apparently less intensive rehab.
In 8 weeks at Stanmore, if you’re lucky and if you do not have any physical problems (infections, AD, bowel trouble, bed sores) you get good physio and good OT. If all goes well you may have one session in the adapted kitchen to show you what you could do in theory if you were to be taught how to. The wheelchair training is likely to be 5 minutes in the car park. The day-to-day care staff (particularly at weekends) may not be particularly well trained in the care of people in your condition.
After I read this, I thought about Henry Scobie – the protagonist in Graham Greene's novel 'The Heart of the Matter'. In the final pages of the book, Scobie consciously graduates through a succession of tasks that he will perform for the last time, prior to taking his own life.
If we regard Scobie as a non-fictional person – one who is not enmeshed in the determinism of his creator – then he has significantly more potential freedom than you do in your present situation. There are things that are beyond his control that set limits on his freedom, there are other things that may be negotiable, and then there is a range of achievable possibilities. For example, he doesn't have to kill himself. The miseries that have led him to narrow his options down to an eventual singularity are mostly of his own making, born of a prosaic cowardice; a failure to stand up to the unrealistic demands of his wife. That said, he can certainly go in other directions. Prison and penury likely await him if he does nothing. If he were more proactive, he could carve out a life for himself as a fugitive from justice in a foreign country.
The plight of Scobie enlightened me to the idea that, within the range of freedoms that are possible to us, we set our own narrower limits. I have been trying to recall the last time I made physical contact of any kind, however fleeting, with another human being. In 2024, I have had my blood taken and I have been manhandled into an MRI machine. That is the full extent of it. The friends who I see occasionally in person may nod their head at me in acknowledgement, and there the line is drawn. Those who might regard this as repressed masculinity fail to understand the psychology in play – the blank telepathy of two or more people who provide support just by being in each other's company, where the joys and trials of life are inferred rather than openly discussed, and nobody thinks to fling a drunken arm around your shoulder while bellowing the chorus to Wonderwall. It is a deeper bond that transcends words; that shows itself in simple acts of kindness and maybe in grand acts of sacrifice. I assume that, if any of these men put their hands on me, it would be with some functional purpose in mind. I certainly have the freedom to cultivate relationships with more touchy-feely individuals, thereby widening my human experience, but choose not to, as a matter of preference.
At the same time that most us exist well within certain limits of our freedoms, we are also commonly railing against barriers that prevent us from getting what we want, or what we feel we deserve. If we fail to approach these parts of our lives, that lie beyond our full control, with realism and moderated expectations, then we run the risk of being drawn into a downward spiral of anger bitterness and resentment.
In your extreme case, the spectrum of possibilities that are available have narrowed to about the width of a Venetian alleyway. There is a mental battle to be won; an acceptance, where you don't agonise over the things you can't have, because that can't lead anywhere good, but where you don't close yourself off to the possibility that things might improve physically, either as a result of rehab or through technological intervention. Accepting these limitations and finding ways to live well within them is not a tacit admission of weakness. Any man who is able to formulate a meaningful and fulfilled existence while in confinement (whatever form that may take) demonstrates strength of character. He is, I would argue, a man of courage.
This is responding to a very small part of this but I feel sure that all your friends are now googling wheelchair shapes and sizes and trying to figure out how to hug you better. Honestly looks like just a matter of intentionality and good core strength, one can’t just give any old hug and expect it to work. I don’t believe that that little part of this isn’t a tiny bit improveable.
Why *did* you only get three months of rehab rather than eleven anyway? I mean for all that it was deeply traumatising and awful, I wonder if there is anything we could collectively do about that.
It seems a long-standing policy of Stanmore that they claim to give you more intense rehab but for a shorter period than other centres. They claim it works better in the long run. maybe that's true, but it also doesn't factor things like "does this give the person enough time to find a place to live or are you going to just dump them in a care home next"? Because strangely enough, vegetating in a care home for four months rather undoes those three months of intensive rehab. (Yeah, I feel quite bitter and short-changed. 14 years of Tory austerity and NHS decline of course also don't help here. Reid went to rehab in 2010, which I suspect was very different to 2023/4 in terms of resources and basic functionality also.)
These days only one in three people who sustain a spinal injury get to rehab at all. (This is for England). One in three. There are waiting lists, particularly in places like Stanmore which have a large population in their catchment area.
The ‘normal’ length of stay at Stanmore is 8 weeks. Other centres in England give you slightly longer, but apparently less intensive rehab.
In 8 weeks at Stanmore, if you’re lucky and if you do not have any physical problems (infections, AD, bowel trouble, bed sores) you get good physio and good OT. If all goes well you may have one session in the adapted kitchen to show you what you could do in theory if you were to be taught how to. The wheelchair training is likely to be 5 minutes in the car park. The day-to-day care staff (particularly at weekends) may not be particularly well trained in the care of people in your condition.
You are breaking my heart, Paul. Breaking it open. Thank you for teaching me so much about being human.
This breaks my heart Paul 💔
Thank you for sharing. Really hoping there are major advancement in spinal cord research soon that can help you.