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Wednesday, November 28, 2018

The Abyss

I have not posted at Bad Cripple in a long time. This labor of love has likely come to an end. It is 4am here in Denver. I am deeply depressed. Worse, I do not care. For 40 years I have been passionate about disability rights and scholarship. Both fields have passed me by and left me in the dust. I have no work. I have no prospects of work. I have no place in disability rights. In this dark night I am ready to slip into an abyss.

Yesterday I was at wound care. A relatively minor wound has blossomed into a deep and potentially life threatening wound. I knew, indeed I have always known, one of these wounds would kill me. I am not critically ill yet. It is possible I will recover. The road for me however is going to be long and painful. My quality of life is absent. I cannot sit. I cannot go out. I cancelled all plans for six months. I have nothing to look forward to. My day is spent on the phone, mostly on hold, with bored disinterested people who work for a health insurance company. They inform me why nothing is covered. The hospital I visit subsequently sends the bill to bill collectors who call me me all day long demanding payment. The physician I see provides solid medical advice. But like all wound care physicians ignored are the realities of life. Pain is never addressed. Depression and mental health are not discussed. Cost of dressings is not addressed.

For 40 plus years I have banged my head against the wall and demanded to be a treated with respect. This has been largely fruitless and yielded insignificant results. Academic professional organizations remain openly hostile to disabled scholars. My fancy Ivy League credentials got me nowhere. As I sit here in bed in the dark typing into my phone I am faced with the realization my life has been an utter failure. This breaks my heart. I wanted to make a difference in the world.

I have no idea if I will post here again. I do know I will not leave this apartment for at least two weeks. Under the best of circumstances it will be months before I can sit up. The worst case scenario is a clinical cascade that will slowly and methodically end my life. Most dangerously I am okay with that. Yes, I feel that defeated. We live in a draconian world where health care is for the well insured and abled population. My crippled ass need not apply. Social supports are largely non existent. I am what I am--a drain on limited economic and social resources in a capitalistic society driven to win and profit. About the best thing I can say is that I really tried. I tried to be a good man, a good father, a good son to my parents, a good writer, teacher and scholar. I had various shades of success and failure. For now it is time to withdraw from society and others. What the future holds here and in life remains unknown. It is thus with a heavy heart I say goodbye to those who cared enough to read my many posts over the years.

17 comments:

ER said...

Bill! You are a terrific scholar, and my students and I have been moved and educated by your thoughtful and incisive essays! Every semester I assign several! I am so sorry to read the misery you’re going through now. Is there anything I can do to help from a distance? The thought of you in this abyss is horrifying. Warmly, Lizzie

Selene dePackh said...

Your words have helped me articulate my own thoughts so much more clearly in the years I've been reading them. I can't define what you might count as failure, but at least know that your writing has had reach and influence, and will be deeply missed if it stops.

Kim said...

You have every right to feel sad about the circumstances you are facing. I have been reading your blog for a very long time. You've helped me more than you will ever know. I have an invisible disability--severe chronic pain and weakness in my dominant arm and hand. Nobody sees my suffering. I try not to show it. My troubles in no way compare to what you are dealing with. But you have inspired me, entertained me, and made me feel like life is worth living most of the time. Please don't give up. I understand that you are tired of fighting and it seems like life just keeps throwing more crap at you. I hope you have friends and family that you can reach out and talk to. If you don't, talk to me. My email is fxhntr1@mac.com. Hugs, Kim

Irene Ogrizek said...

You're a scholar and a gentleman, Bill. The world really will be poorer without you.

JJ said...

Bill, you have done Great Work - youve done Good & thats everything & I think you have more Good to do. Be proud of the Good youve done - I am - Youve been important of furthering the winning of the fight against ableism & multiple other isms - if you can or know someone that can - you should setup a link where one can give money to you - I know I will & would whenever I can

- JJ

Unknown said...

No words can pay the hospital bills or wound dressings. Maybe our words can just provide some comfort, in knowing that when you sit alone in your Abyss, the virtual world holds people scattered all over the planet who feel for you, empathise and in some small aspects can relate to how down you have fallen.

Your articulate expressions of the disabled society we are sentenced to, and how despite all the medical and technological progress it has failed us, excluded us, but also how you challenged it, were read in emails, shared, read aloud and quoted in classrooms and protests. Even if you find you do not have the strength or will to ever write again, your contributions have changed this world. For that I thank you.

The fight is tough and endless, I hope there are real non-virtual hands of support reaching out to you.

D(ea)r Abby said...

I am an internal medicine physician and have only been reading your posts for about a year or so, but it has been great help to me to better understand the lives of my patients with disabilities and disability rights as a whole. In particular, I came to your blog when you had a post about the "right to die" movement and I think you provided a needed counter-argument to the prevailing narrative. I hope you do continue to post and I hope that there are still better days ahead for you. You have made a difference in the world, even if it is hard to see.
I hope you will mention to your doctor the struggles they fail to acknowledge. Or I hope you can find some member of your care team who will understand this side of things and provide some help.

Elena Paolini said...

Bill, I opened your blog today looking for an old post of yours about ableism in the healthcare field, because I am writing an article on ableism for an Italian magazine. Finding this post was so sad.
I loved every word of your blog. It was pivotal in my education as an activist. It was so empowering, informative, well-written and badass. I wouldn't be the proud, anapologetic disabled activist I strive to be today without your blog. And you can be sure I am committed to raise hell in Italy - and wherever possible - promoting disability rights. And I am sure you have empowered hundreds of disabled people with all your work.
Please take care of yourself. Ask for help, you matter so much. Ableism is often overwhelming: combined with bad health it is very hard to find good things. But there are many things you can do from home until you recover. Please consider a crowdfunding for bills, I did one for my wheelchair. I don't know about your prospects of work, but you sure have a place in disability rights: to me, you are a pillar in disability rights.
You made a HUGE difference, please try not to feel defeated. I get one gets frustrated after so many years dealing with ableism: I'm just 23.
I'm not of much use since we are a lot of km apart, but here I am on Facebook, reach out if you ever want
https://www.facebook.com/elena.paolini.7

with love,
Elena

Marie of Barrie said...

I am not sure if you got my message a few months ago or the one I sent to the email address associated with this account. In any event, here is an abridged version.

I am sorry you are in such a dark place. I hope that you will continue writing. I have only just found your blog. However, I am very grateful for what you have written and I will continue to read my way through your archives. You are changing my behaviours. Corrupting me. Making me a slightly bad cripple. :-)

One of the most profound things I read on your readings was your reference to the “other”: the disabled, the minorities etc. as “my people”. I felt so proud and safe and surrounded. So part of a community. I know that many difficult days lie ahead. But the actions of our predecessor such as the gang of 19 (that you taught me about) remind me to be strong and that we are part of something much bigger than ourselves.

I hope that you survive this darkness. I hope that you will continue to write and teach and change the world in ways you will never know. My prayers are with you.


Thank you.

Marie Francis
Part time wheelchair user from Canada

Sam I am Not said...

Hi Bill. I only discovered your blog recently after watching Fatal Flaws. I'm not really disabled but I'm a fellow human and I feel for you. We all have our battles, realise the world is thoroughly corrupted and then die. Question is whether we keep fighting to know the truth and do right. God sees all you do and all you strive to be, I just hope you find that soft solace of knowing that you are known intimately and that you win the ultimate battle and live forever. If there's no God then your fight has been pointless because we are all just temporary animals. As God lives, you have been upholding and witnessing to the inherent dignity in man.
Besides, you touch heaps of people and your effect goes global like ripples on multiple ponds. You touch us, we touch others and on it goes. Hold on and pray. God bless you,
Patrick, Australia

Alix said...

I just wanted to say you have taught me *so much* and I hope things get better for you.

Elizabeth said...

I understand. My mother is in a similar situation. I stumbled upon your blog while desperately searching the internet for making her cheaply-made, but expensive for us to purchase, wheelchair into something that doesn't cause pain and and my mother can move by herself. For two years she went to multiple doctors and therapists trying to get Medicare to pay for a powered wheelchair. It was denied, because it took too long and they didn't do the right tests. Next month we begin the process again. Outside of her appointments, she hasn't been able to leave the apartment for those two years. She's afraid of her wheelchair breaking down and can't push herself up and down hills. We used to work together on those hills, but her pain has weakened her too much for that. I'm glad she has me. We do our best, one day at a time. I wish you peace. Thank you for being here.

Marie of Barrie said...

I am nervous about leaving this post, but after several days of thought have decided to proceed. I hope that you find it helpful. I am concerned because 1- it is generally annoying to have people give you advice or suggest you do something more when you are already suffering 2- I feel by suggesting you do something I am, in a sense placing the responsibility for the wound on to you. I am sure there is a scholarly term for this phenomena but I do not know it. I think it is related to guilt or something on the part of the person telling it... an “if only I tell him that my Aunt once had great success treating a burn from her frying pan with vitamin E it won’t be my fault if he dies of a pressure sore” -type thing. 3- we live in different countries with radically different healthcare.
None of these things are my intent. So, like Canadians are stereotyped to do: I apologize.

I am a part-time wheelchair user and a custom seating technician. We will not get into the state of the custom seating industry or the wheelchair industry in this post. However, I am sorry you (or anyone) must endure it. I hope that you have access to a ROHO cushion at the least. If you do not your insurance and indeed your entire healthcare system deserves a good slap upside the head. I strongly suggest an alternating pressure mattress... but let’s get real... you can’t get funding for one of those here so I am not optimistic things are better south of the border. If you do recover enough to travel a short distance, I recommend you attend the Aspen Seating Clinic. It is in Colerado and supplies us with some excellent seating products that work off the principle of UNLOADING a pressure sensitive area instead of immersing it.

Again, you may have tried this already, you may not be able to access funding or afford it, you may not care or you may be too exhausted. That is ok. This is just something to look up if you are insterested. It is called “Ride Designs” and for some people it is at least part of the answer to chronic pressure sores.

Marie
Wheeler and Seating Tech from Canada

Unknown said...

Dr. Peace, my name is Bobby Schindler, and I was hoping you might contact me. My email address is: info@lifeandhope.com. I would love to communicate to you rather than post on your blog. Thank you.

Katja said...

I am so sorry to hear about the pain and anguish that you are experiencing, and glad that you are willing to write about what is going on. I don't know what to say or do to help, but add my voice to the others here who have learned so much from you, and hope that things will improve.

Sarah Spangenberg said...

Dr. Peace,

I'm glad you posted. You can email me, too, at info@ethicalcaremn.org. You're not alone.

Thank you!

Unknown said...

Dr Peace,

I often go silent and MIA. And I also often find things absurd when I contemplate on them. I felt and understood your words. :(