It’s not everyday that I put a picture of my bum online, so here is a special treat for you. It’s a close-up of a pressure sore that my carers discovered this morning. It doesn’t look like much, but unless I stay out of my chair and keep off it, it’ll grow in size and becomes the stuff of nightmares. Google images of spinal cord injury pressure sore if you feel like throwing up your breakfast.
I don’t know what caused it, but Elly blames my brother Kurt, who commented on the weekend that it’d been ages since I’ve had one. If anyone sees him this week, make sure you punch him for me.
I’m supposed to be teaching an intensive class this week, so I’ve decided to do it from bed. It’s a small Masters class, and the students are going to sit around my room while we talk about moltmann’s theology of hope, and feminism’s turn to embodinent, among other things. i guess that’s appropriate.
I started to get depressed but it was suggested that I save that till days 3 & 4, so that’s my plan.
Sam SApril 11, 2017 at 12:28 pm
Thanks for sharing!
Tanya RichesApril 11, 2017 at 7:27 pm
I love your comment that you’re saving depression for when you get more bored…… or something. here’s hoping it goes asap, and you have saved some Netflix series.
ellenApril 12, 2017 at 3:36 am
Your remark on giving your brother a punch made me burst out laughing, maybe because I too have three brothers and alerting others to punch them occasionally seems so right 🙂 I hope your bottom heals quickly.
ellenphendrixApril 12, 2017 at 3:46 am
Your comment on giving your brother a punch had me burst out laughing, maybe because I too have 3 brothers and a request for passing on a punch seems so reasonable 🙂 I hope your bottom heals quickly. XO
JaneApril 12, 2017 at 1:51 pm
Hang In there shane last place you wanna be is back in a hospital bed!!!
Elly CliftonApril 12, 2017 at 2:37 pm
The depression has hit here already, we could be looking at weeks of confinement. Just lucky Kurt is leaving the country, is all I can say
GordonMay 22, 2017 at 2:11 pm
Hi Buddy, been some time since I looked at your blog.
I just rewound the whole thing. Not read of course, but dipped in here and there.
A sore on your ass. That my friend, is where the rubber really touches the road. Literally.
Looking at the item, I believe it is not new. You have those darkened areas which look like like dry calloused skin. In other words your body (if I am correct) has been under strain for some time at that point. And that means healing it is not enough. You will have to make some kind of change in your routine so that it does not come back.
I can’t tell where it is. If it is somewhere weird, change will be easy. If it is in one of the main traffic zones, it will be harder.
You might be able to get by with some kind of cut-out in your cushion. Really, I’m just rambling.
But here is the bottom line: You have to get regularly off you ass in the course of the day.
Somewhere way back in your blog you mention reclining in your chair. That is good. But you should honestly look at the placement of the sore and ask yourself whether the pressure is really and entirely off that point when you are reclined. If not you need something better.
I believe you already understand something most people are unable to grasp: It CAN be done from a bed. As I read some place, people are afraid of being “bed-ridden”, but many businesses are, in fact, run from a bed. So here is my inspiration on the subject: Why wait until you HAVE to stay in a bed 24/7 ? Why not incorporate the bed into your regular routine BEFORE you need it ?
Remember that guy in California ? the MAN ? seminal autobiographical research on disability. What’s his name ?
Fact is the guy was not in a chair long enough to really “get it”. In one key point in the book he tells about sores, and his doctor tells him he must take rests out of his chair during the day. to which he replies (to the reader) : “I quite properly ignored that advice”. The inference, of course being that he could not then continue his active teaching career, etc. (which would be to sacrifice all quality of life and he therefore ignores the well minded but uninformed doctor) Well NO Dumb-ass. You did not “quite properly ignore that advice” You totally misunderstood the importance of what was happening to you and put yourself on a one way suicidal course. (What kind of “quality” is there in NO life ?)
Sores, I believe, also killed Superman (another name that escapes me at present). Superman had lots of cash. Constant training schedule. Surrounded by an entourage that looked like the Secret Service and yet he couldn’t avoid PRESSURE sores ? Give me a break. Same twaddle as the prof at UC.
That prof prided himself on his office being a sort of informal hangout for all kinds of creative misfits. So, try to convince me that he could not have had a bed in there and got his disciples to lift him in and out of his chair. He was just too stupid and too proud.
Here is my case : Complete T4. Thirty-eight years in the chair (since july ’79). Active guy. primary care-giver four kids. Full-time soccer mom. national level athlete. Never an actual sore. (One troublesome pt that takes a small pressure when I sit and a small pressure when I lay down, so double whammy, which has required much thought over the years to find positions that would truly rest it.)
My routine : I have what I call the “four hour rule”. In principle, I never stay in my chair more than four hours in a row. When at home I lay down on the bed at that point. When I am outside, I lay down in my van. 10 minutes. Every time I get behind the wheel. That makes maybe four rests in an active day. Passengers don’t get why they have to sit there, but honestly, I just don’t care.
If I were to have an office, that office would have a bed.
Am I ringing the right bell ? Are you ready to really stand up to the AB world and tell people that a spinal chord CAN work but NEEDS certain accommodations, the first and most important being a place to really lie down ?
Believe me Shane, I have talked to a lot of active spinals with sores on their asses. Sores getting better. Sores getting worse. Between Sores. Sores coming back. Bed rest. Back up. yada yada yada. And not ONE has been able to understand that there is a middle point between bed rest and 16 hrs per day in the chair. Not until the walls come crashing down. And then they think they are “bed-ridden”.
Find a sustainable routine. make the compromise now. Stand up to normality. Put a bed in your office. Do business from your bed.
Put a bed in the living room.
Put your bedroom beside the dining room/kitchen. Demolish the upper half of the wall. Replace it with a curtain you can open at will. That way you can lie down without isolation in your own home and communicate with your wife and kids in the kitchen without shouting. (You must absolutely refuse to become the old man at the end of the hall. It is your house. Your bed should be the center piece)
It works. 38 yrs. no sores.
You are now six years in. That is just about the time that people have to make up their minds about whether they REALLY want to survive. Survive long-term.
(Or are they already looking for an easy excuse to go short term again like Superman or our friend at UC. ? Because Sores are a great and well established way to do that. Very convincing to the uninformed)
You have a great persona. I am asking you now (consistent with your own analysis of the disabled life) to expand on your narrative to include maybe forty more years. Do not attempt to go back to your old life when you get back in your chair. Find a NEW routine that will not lead you back to the same place.
See what I am getting at ?
Feel the Love
Gordon from Montreal
P.S. Think about Metamorphosis. As Kafka plainly understood, you can sit around and debate philosophy all day long. But it is that seemingly trivial apple caught in the back plate of your armor ; rotting away ; festering over time ; not an idea ; nor even a frontal physical attack. just an insignificant –but actual– untended wound. That is what will really fucking get you.
Shane CliftonJuly 24, 2017 at 5:13 pm
Gordon, I have not been monitoring this blog closely enough in recent times – and realise that I have not responded to your very important comment. Please accept my apology. And I certainly do take your warning seriously. I actually am pretty diligent with monitoring my skin care, and I have my carers give a daily inspection (Lucky them!) It turns out I had a problem with the setup of the cushion. But be that as it may, your warning is well-made and I take it seriously. Those of us early in the journey certainly need to listen to the wisdom of your experience.
But again, sorry for my late late reply
Gordon FriesenJuly 25, 2017 at 4:59 am
I really appreciate hearing from you.
Glad to know that you were able to identify the source of your problem.
I have a lot of faith in you. To go the distance.
My main point is that strong-willed people don’t like to make compromises, and they tend to adopt unsustainable routines. Especially, they do not like to show weakness, and will go into “exceptional mode” to hide their needs.
So the key is both long term routine sustainability and an unwillingness to cheat.
Case in point : I only drive about four hours in a day with breaks to rest my butt. So if a destination is six hours away, I will stay overnight on the way. A trip that would be drive_down_stay_the_night_and_come_back gets stretched into three nights on the road. But that rhythm can be kept up indefinitely. Other people, even very nice people will say, “Don’t worry, I’ll drive, six hours tops”. But to sit in one place for that length of time causes me real problems. Skin and Bladder. So I have learned that I have to say no.
And it seems to me that in your professional capacity you are in a position to introduce a notion of institutional compromise which would benefit not only yourself, but others following you. Just being there is a terrific first step.
On my end, I have recently started ghostwriting/co-authoring the editorials in a euthanasia-resistance newsletter here in Canada. We just finished our third issue. FYI:
So, once again, thanks for responding and I wish you all of the best, Mostly I know you will do fine.
KBO (as Winston was fond of saying)