Beratting a Bad Cripple

Claire asked why do I berate myself. Well, in part I have feared, truly feared, would develop such a wound or wounds. I worked hard to avoid such sores as I know they are deadly. I took precautions to insure they would not occur. These precautions failed. Yes much was working against me, surgery, bed rest for two weeks etc. In short I alone am responsible for my current predicamant and utter dependency. I do not do dependency well nor am I good at asking for help. But I am going to have to improve these skills. I have no choice. I doubt I will sit up before Xmas. Acknowledging this fact is deeply depressing. The fact is I am just starting on my road back to normalcy or what passes for normal when one is paralyzed. Sorry but I guess even I have my demons to fight. And fight I will. I just need time to adjust to my current situation.

Weekends are Rough

As many know, hospitals hum along during the week. That action comes to a grinding halt on the weekend. Last night was quiet and today will be slow--way slow. This lack of activity is good and bad. On the downside, I have too much time to think. I torture myself for hours on end. How did I let two wounds, horrible wounds develop? My answer remains the same--I have no idea. This so called answer is as unsatisfactory as is maddening. I have lost much sleep contemplating and berating myself. Yes this is not productive but what do you do at 2AM after being woken up for vital signs.

The only good news is that I bought a bed or will do so Monday. Actually I have not bought a bed but a luxury car--yes the bed cost a small fortune. Did I have a choice? In a word, no. The fact is even when healed my skin will forever be compromised. This fact is not in dispute. But insurance is very clear--a bed is not covered, it is not part of my contract. No appeals are possible. Who is at fault for this? Why me of course. One and all tell me I have terrible insurance. Tell me something I don't know. What the powers that be don't want to hear is why. Why do I have bad insurance that I fought tooth and nail to get.. This story falls on deaf ears and cold hearts. I will have much more to say about this as I heal.

To fend off boredom I am reading many crappy novels, what I call reading TV. I try to surf the net via my TV and tiny screen. This is an exercise in frustration. What I am sure to always do is never ask for help. In ten days I have hit the call button twice. This, I know, makes me a good patient. More than anything else, this reputation leads to good care. Hence I think of Irving Goffman and his work on institutions often. This is as relevent today as when it was written. When I get home it will be the first real book I will read. So dreams of home and normalcy, my old life, will dominate my thoughts today as visitors do a piss poor job of entertaining me. Hopefully said visitors will bring real food and better yet a beer.

Good, the Bad and Ugly

Let me start by saying thank you for all the kind words, support, and suggestions. Today was a mix of emotions, news and procedures. As to the good, I found a used clinitron bed I can purchase. It will arrive next Thursday so I can get home. I am simply going mad here in the hospital. It is a fine instituion, the care quite good but far from ideal. This is in no way a complaint rather hospitals are dangerous uncomfortable places to stay. As for the baad, my small wound on my left side was debrided. In other words I had bed side surgery. The wound is deep, much dead tissue was removed. Just writing this brings me to tears. I had hoped, was in denial maybe, it was superficial. So here I lay with not one but two major wounds.

If I have done anything right it is to torture myself with how: how did this happen. My answer is as unrevealing as it is hopeless--I have no idea. This more than any aspect of my care haunts me. Measures have already been put in place to insure I will never be in this situation again.

Finally, the good. I am blessed with a great family. The support I get is overwhellming and deeply moving. I am not good company but I do appreciate all that my family does. Sometimes I just need to be alone, work through things by myself. I hope they understand thIs. I guess I am trying to confess I have been cranky and upset in the extreme. This is going to be a tough road and return to normalcy--one that has barely begun. I also know my crankiness will carry me far--it always has when times are hard.

Day One Report

Thanks for the words of support. I cannot reply in the comments section given my limited access to a decent screen and internet. Yes I will get through this giant sore. It will heal but the reality is I am in for a long haul--months in fact. I must be better as last night I wanted a beer, a sure sign I am not depressed. The obstacles I face now are insurance and money. Insurance will not cover the cost of a special bed or the KCI wound vacuuum. I cannot go home without either. In perverse insurance logic wound care is covered but not the equipment needed. This makes no sense and I have been repeatedly told my insurance sucks. Tell me something I don't already know. Frankly what people here miss is that I am lucky to have any insurance given that I am self employed.

Today will be more calls and more frustration. Each day I realize with greater clarity how effectively people with disabilities have been cut off from access to good insurance and adequate health care. High tech skin care exists, wound care specialists are gifted and yet accessing this care is deeply problematic. My existence is proof great care can be had but that care is not dictated by medical need but money. As long as I am in the hospital my care and healing is not in doubt. Going home is another story. This will be a long saga, one that has not yet begun. I will need to ask for help, lots of it. I suck at asking for help and am even worse at being dependent upon others.

Where does my wound stand? My right hip is better. The wound is starting to fill in so progress has begun. My left hip has a small sore, the result of being off my right side too much in compensation. Most importantly my skin everywhere else remains intact. As for my spirits, they are down but I remain resolute. I read all the time, and never ever ask for help. I never ring the calll bell for the nurse--or I have done so just twice. This more than any other variable leads to good nursing care. That's all for today as I have much to work on to get home.

Disaster: Hole in the Hip

This is the hardest post I will ever wriite--and it will be the first of many. This post is hard to write because it is being written from a hospital bed, a bed I will be stuck in for months. This statement is humiliating because I have spent the last 32 years thinking I am smarter and more careful than my paralyzed peers. No more do I have the right to feel superior. Like many others I have developed a huge pressure sore. Let me be more blunt. I have a giant 4x4 hole in my right hip. I am learning much about modern wound care. I have a KCI wound vacuum on my hip. I hope it will heal by Christmas. My life between now and then will be costly in the extreme. All that I do daily is compromised. From a practical perspective I am working on the logistics and they are complex and daunting. For now I am trapped in the hospital until medically stable.

The point of this post is to explain my silence and start a daily record of my long physical recovery and return to independence. I have never read about such an experience. It is my hope that paralyzed people and others wish severe skin issues will read my words and learn from my mistake and experiences. So please check your skin, really carefully. Get naked, get a miror, or better yet, a friend and give yourself a once over. Too tired to write more more but much, much more to come.

Fox News, John Stossel and a Disaster to Come

I just read over at Planet of the Blind John Stossel, a fierce and long time critic of the ADA, will have a show on tonight at Fox News. Yes, more misleading anti-ADA rhetoric under the guise of journalism will reach millions of viewers. The program airs at 9PM tonight. If readers want to be aggravated and angered beyond comprehension I suggest they tune in. Once calm at some point tomorrow I will post my reaction. And there goes my night--I am sure to be upset as Stossel has chosen to reference Walter Olson and Greg Perry. These two men hate the ADA as much as Stossel--hard to imagine but true.

New Ways to Create Social Change

I think the disability rights movement is stagnant. We rely on time tested methods of demonstration and civil disobedience. In the past some actions taken by groups such as ADAPT and Not Dead Yet have been highly effective and I deeply admire the organizers of these groups. Go back a bit farther in history and through the magic of YouTube you can watch protests from the 1970s. I love to watch these old videos--especially the ones posted by the Disability Rights and Education Defense Fund. I get a chuckle at the the clothes people wore, myself included, and shake my head when I see wheelchairs circa 1978. These were real clunkers, mass produced by Everest and Jennings, that were nothing like what people use today. But what is on the forefront of my mind when going down memory lane is how effective demonstrations were. People with disabilities were united, tough, fought the establishment with vigor and for 40 years more often than not won. Forty years of legislation empowering people with disabilities is the legacy of this success. I don't see such successes taking place today. I see people with disabilities under assault by draconian budget cuts designed to hurt the most vulnerable. I shudder when I read the statistics about unemployment and worry about how people with cognitive disabilities are cared for. I see the rise of animosity directed at those that do not fit in on the part of conservatives--think the Tea Party. Worst of all I see and read about ineffective methods of protest reduced to sound bites on local news programs or used as filler in newspapers.

What is the point of the above? We live in an information age that boggles my mind. Information moves at speeds I never dreamed possible. The internet is a large part of my life and I really wonder how I survived without it. The information that is available online is staggering--many can and do live life through on line cyber communities. This is good and bad--but today I want to focus on the good. I want to appeal to young people, our future, who see computers, Ipods, MP3 players, cell phones, etc. as integral part of life. This is the future--multimedia approaches. And this multimedia, hip, online, visually interesting, and funny approach can further disability rights. This is not what disability rights activists have embraced. Part of this is generational--I see this as a fundamental difference between myself and my son. For instance, he sees his computer as a tool, a powerful force that is meant to manipulated and enjoyed. Me, I am afraid of my computer and its mysterious contents. I just pray the damn thing works. Perhaps it is because I teach college students but I think the only way to make effective social and political change today is through online, multimedia, and creative civil disobedience. Here I am thinking along the lines as groups such as Improv Everywhere to far more obscure though no less interesting approaches taken by cripzthecomic. I suggest those unfamiliar with Improv Everywhere take a look at their "actions". Some are very funny, others stupid, but the mass appeal cannot be denied. As for cripthecomic he recently posted about something he called "stair bombing". This London Ontario based person went to a local school, spread about one dollars worth of caution tape across the entrance and posted a sign "Sorry, no access Stairs out of Order". When I saw this I laughed myself silly! All I could think of was all the "No access elevator broken" signs I have come across in my life time. I also could not help but wonder did people circle the building looking for stairs that were not out of order. I cannot help but think this caused a stir--and made people think. And this, making people think and laugh, is exactly what disability rights has failed to do lately. If we can do this, make people think and protest in a way that appeals to young people who do not separate political change from humor we might be onto something big--we might be able to make disability rights cool.

Yes, it is possible to be cool and disabled. I see this all the time when I ski and kayak. What I suggest is that we extend this cool factor to include a dynamic new approach to disability rights. To a degree we have already started this. The existence of hundreds of blogs and Facebook groups devoted to disability rights is a start. But we need to get on the cutting edge of technology and civil protests that are visually and politically appealing. I think it is possible to both teach about disability rights and laugh at the same time. Robert Murphy author of the Body Silent did this all the time before the electronic age. Sadly, I do not have the technological prowess to undertake such a project. Hence i am looking for someone I can exploit that is willing to help. I have lots of ideas about how to rail against exclusion, joblessness, and isolation that remain common place. For example, I was thinking of trying to introduce myself to my neighbors. Of course this is not possible as I own the only accessible house in my town. Now this could be very funny but equally pointed. Why do no accessible houses exist and what are the social implications? Perhaps my ideas are poorly formed but I think they have great potential. Frankly, I think we have no real choice. We in the disability rights community must keep up with the times and embrace technology and modern hip approaches to civil disobedience. Given the dismal state of the economy the need is as great today as it ever was in the past.