My Small World Seems To Be Shrinking

I have been home for six days. I am amazingly lucky to be home. Unlike many others in similar circumstances I have escaped life in a nursing home. More than most people I realize just how fortunate I am. I tell myself this each and every day--it is my mantra "I am lucky to be home". This is a fact I cannot ever dismiss because if it were not for my familial support I would be rotting away in an institution. Yet at the same time I struggle with my dependence on others. I struggle knowing that I am stuck in my living room for months on end. I struggle to keep my mind active. I struggle to eat a high protein diet as ordered by the surgeon. And worst of all I struggle to be grateful for the fact I am home. Talk about being ungrateful! Here is the strange dichotomy between one's intellectual knowledge and personal feelings. I know I have no right to complain about the current state of my affairs. But my brain and heart seem to disagree.

I miss my wheelchair. I miss my desk. I miss ordinary household chores. I miss working up an appetite kayaking in the Hudson River. I miss teaching. I miss going for a drive. I miss my very boring and ordinary life. I know this sounds pathetic. I also worry if I am thinking and feeling along these lines what will I be thinking in November. I suppose I am learning the adaptation process I am going through now is more difficult than I imagined. For goodness sake the weather appears to affect my moods. On gloomy days outside my mood reflects the climate. Wow, how life has changed. Weather never influenced me like this before. I cannot help but wonder how my experience will impact my future thoughts and experiences. For one thing I am sure, each and every time I get in and out of my wheelchair I will be nothing but grateful.

Its a Small World

I survived the weekend. I must be doing better because nonstop football games, college and pro, grew increasingly boring. I read more, watched TV less and seem more engaged. No doubt my overall health is getting better by the day. I feel stronger and friends say I look much better. I have not yet jumped back into work but I am getting close. Other signs of progress are that the wound care specialists are excellent. They are familiar with the wounf vacuum and I am relieved they know what they are doing.

The above is very real, finite and measurable progress. This progress is tempered by my new reality--my world is very small. I live in my living room, cannot get out of bed and look out the same windows daily. I have gone from an active lifestyle to one that leaves me virtually inert. I do not mean to whine--I am all too aware I am lucky. I could have ended up in a nursing home or still be stuck in the hospital. I also know I am lucky to live in my home as my living room boasts quite the view. Yet weeks ago my idea of observing wildlife includes paddling on the Hudson River. Now I look out my window at squirrels and chipmunks. This is a big let down. I have no doubt my spirits will rise as I adjust to my new life and temporarily limited environment. For now, I am still in a transitional phase. I am better but now 100% I am happy to be home but sad at the same time. These observations bring back long ago memories of when I was first paralyzed. To be blunt, the adjustment from walking to using a wheelchair was a real mind fuck. The transition however was filled with periodic excitement. For instance, I recall my first wheelchair. What a poerful sense of liberation! To go fro a hospital clunker to what was at the time a real wheelchair left me smiling for days. Thus I am content knowing in a few weeks or months I will have a similar experience when I sit up and leave my home for the first time. So this is what I am trying to keep at the forefront of my mind. I am not always successful but as each day passes the hospitalization drifts into the past and I am another day closer to a return to what passes for normal to me. Amazing that on such a deary day I can be so positive.

On Dependence

The list of things I cannot do is long. The list of things I can do is short, far too short. I can eat, write, read, and manage a small world in my living room. But that living room is akin to Mars. What your average human can do I cannot. This reality is hard to accept much less live wiyh. We Americans celebrate personal autonomy, self determination, and independence--these are core cultural beliefs. We conveniently ignore the very real factors, social, economic and physical, that affect one's ability to be independent. When we fail to be independent that failure is often self directed. Well, I am not directing any such self blame inward. But this does not mean I am happy. What I am is emotional--yikes this is hard to cope with. I frequently well up in tears and my frustration level is off the chart. As I told one friend, I don't do dependency well. Like it or not, I will ned to master this in the coming months without losing my sense of self. For now I am taking things day by day and moving from the trauma of two weeks in the hospital and two bloody debredements.

The above thoughts led me to read Bob Murphy's Body Silent yet again. He eloquently wrote about how his life as quadriplegic made him utterly dependent on his wife and family. The stress and angst thiscaused was significant. How this will affect me, my family, and friends ask for help is to be determined. At least my son is out of the equation--he is at colloge and will not return to the Xmas holidays at which point I will be up and around or close to it. So here I lay and wory. I am not worried about healing. I know I will heal. No my worries are tied to those I am dependent upon. This concern I know is base on the fact relationships are reciprocal, a give and take. Well, I am going to be doing more taking than giving. I thus feel powerless, not a good frae of mind or method to manage relationships. But I also know this is a short lived state. I simply hope I survive this intact and with continued family support.

Thank You One and All

My day has been spent with wound care people and about a million calls to arrange logistics of my care. Tomorrow I hope to catch up on email and bills. My God the bills are daunting. But that is not what I want to write about. I read over my posts since I got sick and am taken aback by the support of my readers. Your words have moved me deeply and I am sure I will take up some offers for books and other support. I never cease to be amazed by the vibrancy of the disability community and how willing they are to lend a hand. It is not just the well known groups I admire such as ADAPT and Not Dead Yet but all the other seemingly nameless people moving forward too. I truly love this amorphous cyber community of people with a disability that supports one and advocates for the civil rights we value.

I wish I could write more but I have transportation issues. I need to see the MD next week. A round trip via ambulance is not covered by insurance and will cost $1200. Obviously I need to figure out a back up plane. No idea yet what this backup plan will entail.

Home

I was released from the hospital today. What a relief. My last two days were spent with no internet access and iffy television service. Boredom was a major issue. But I am officially in what I will call phase two of recovery. Phase one, getting medically stable and the wounds non infected, is complete. This was hard physically and hospitalization miserable. Phase two, months in bed at home dependent on others has just begun. This will require great inner discipline and fortitude. In some ways this second phase is going to be the hardest. I am home yes but can so virtually nothing to help myself. But I am home. I have real internet and email access. I will eat healthy foods and be able to have a beer with dinner. My dog Kate is at my side, though a bit confused by my bed. Speaking of beds, I am set up in my living room. In short, I have all the trappings of normalcy but am far from normal. This is the new reality I must adapt to. Adapt I will. I have been doing it for the last 32 years and am good at it--as are most people with a disability. There is much more to detail but I am too tired and want to answer a few emails. Better days are ahead as are hard times. What a trip I am about to undertake.

Ugh, Fever

Stronger Body Weak Spirits

Physically I am better. This weekend I felt like a human pin cushion but the end result is improved health. My blood work is great given the fact I have two open wounds hooked up to a wound vacuum. I am largely done castigating myself, content now to move forward. It is the moving forward that worries me. I am concerned first and foremost about the cost of home care. The bed I bought cost as much as a car, a very nice new car, a luxury import. Wound care is covered by insurance. The wound vacuum, I must rent and the company is interested in one thing--two weeks payment inadvance. It does not take much thought to realize the next few months are going to be frightfully expensive. All decry the health care system, acknowledge I am gettng screwed and then add the proviso there is nothing we can do. Sadly they are correct. My health insurance sucks and I have no other options. What haunts me is what happens to others that do not have a large and supportive family. Where do they go? What do they do under identtical circumstances? In short, I know I am lucky. Howver this does not change the fact I havee been in the same room for twelve days and my spirits are low.

Coping with boredom over the weekend was hard. Crappy novels and football are distracting but for only a while. Hence much of last night was spent crying. I just could not help myself. I was also smart enough to wait until it was very late so I could cry in peace. The hospital I am in is very patient oriented and I am often asked about pain and if I am depressed. I try to tell them, hell yes I am depressed, is that not a normal reaction. Such honesty results in a suggestion a psychiatrist make a visit. Great, is he or she going to make me heal any faster or solve the financial implications of my wounds? Don't get me wrong--if I suspected I were clinically depressed I would seek help. But I am down for damn good reasons and a good cry may have helped me. I am functioning but just sad and worried. I get home Thusday assuming the bed arrives as promised. I am sure my spirits will soar when I get home. I miss my black lab Kate and am tired of hospital life. I also realize when I get home that my soaring spirit will be confronted by a harsh reality--i will be bed bound for months, utterly dependent upon others. This fact more than any other bothers me the most. I simply have not been dependent upon others since I was a morbidly sick child. This is a state I have never wanted to repeat. It is my hope that with the help pf my family I can get through this unscatthed. No wonder I am worried.

No More Self Castigation

One and all I know implore me to stop beratting myself for developing pressure sores. At an intellectual level I know this is good sound advice. The emotional side of my personality however is far less tolerant. I chalk this up to my Irish Catholi upbringing. We Catholics specialize in guilt. Hence I may have left the Church but the Church has not left me. In short no more posting of self recriminations.

I remain medically stable but am in need of a blood transfusion. Debridement of the wound on my left was bloody. I essentially had bed side surgery--the details of which are too unpleasant to detail. I assume with the transfusion I will feel stronger. Today and yesterday my battle is boredom. Internet access remains limited at best. The higlight of my day was a sushi dinner a friend brought to me. Wow, real food. Better yet my brothere stopped by and brought me an ice cold beer. It was the second best beer of my life!

How do I cope with boredom? Lots of bad novels, football on TV, so yes I am desperate. And I long to answer comments many have made but cannot do so. As I said internet is severely limited. Indeed, writing theses words requires much squinting, a crappy key board, and far too smalll TV screen. Boy do I miss a real computer! However even the bad access I have is better than nothing. Okay that's all for now. Thanks for the support and I promise to cease beratting myself. Your words and comments help very much.

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.

(Innovation) News from the retail industry

MyShape attracts nearly one million female shoppers looking for the right fit

Consumers get a kick out of Shoebuy�s flash-sale site

eBay teams up with the National Federation of the Blind

1-800-Flowers offers guidance for consumers in grief

Outsourcing its web platform lets Namb� focus on brand-building

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.

Informed Consent: A Medical and Political Myth

Since I became an adult I have signed many informed consent forms before medical procedures. I consider these informed consent forms "lawyer flotsam"--they have virtually no bearing on being informed, consenting to a procedure, or being truly aware of what is going to take place. I have signed informed consent forms handed to me seconds before a procedure began that were many pages long. Could I have read the form? Sure, but the social expectation was to sign the document and not put the doctor behind schedule. I have also been overly informed--long ago a resident that did an IVP went into great detail about all that could wrong during the procedure. The fact I had many IVPs before did not deter him from giving me a litany of possible mayhem. Had I not been a veteran of many hospitalizations I would have been very scared, convinced the procedure was a high risk.

Informed consent has been on my mind as when I had surgery weeks ago I signed a boat load of informed consent forms. In fact I signed many forms, a stunning number, that were in my estimation utterly pointless. The paper work involved in getting to an operating room is indeed impressive. Are you William J. Peace born 2/21/60? Yes, a question that was repeated by many others. I also signed a form that stated exactly what surgery I was going to have. Did this mean I was truly informed? In a word, no. However, I was a well informed patient. Why was I well informed? Because I knew the surgeon for 25 years and had spoken to him multiple times about what was going to take place. We had extended discussions about the pros and cons of surgery, the inherent risks, and post surgical care. I also read various medical journals about what was being done and knew my surgery was highly specialized and required a unique skill set. I was and still consider myself very lucky.

My level of Informed consent is not the norm. The vast majority of people that undergo medical procedures, including surgery, have a poor understanding of what they are about to experience. How for instance can a person who has been healthy their entire life and never had more than a yearly physical be truly informed when given a devastating diagnosis and told they need immediate surgery? This person will sign the same forms I did but be far from informed. What about the parents of a child that is a car accident and is seriously injured? This parent will also sign informed consent forms but be far from informed. The point I am trying to get at is medicine has a culture unto itself that few who work outside the industry can begin to understand. Sure veterans such as myself of many hospitalizations get the culture of medicine. Many people with disabilities get the culture of medicine as well. But we are not the average citizen. Complicating maters further is the fact the Catholic Church is in the business of medicine. In the USA the Catholic Church operates 624 hospitals and 499 long term care facilities. A spokeswoman for the U.S. Conference of Catholic Bishops reported "When your mission is rooted in Jesus who healed the sick, only the top quality care will do". What a great line and wonderful sentiment. Don't be fooled by such pleasant sounding words. The Catholic Church is an institution with a checkered past (the same can be said of all organized religions). What sort of informed consent takes place at a Catholic Hospital or Hospice? A very unique type in my estimation, one tied to the doctrines of the Church. For instance in Bellingham a widow is trying to force a Catholic hospice to inform patients about the Death with Dignity Act. The hospice in question, Whatcom, a Catholic owned facility, chose not to participate in the law, part of the law's opt out provision. While I am forcefully opposed to assisted suicide, I am in favor of informed consent. To me that informed consent means knowing the social and political positions of any medical facility. Thus I would never consider entering the doors of a medical facility operated by the Catholic Church. According to Ross Fewing, director of ethics at PeaceHealth, the operator of Whatcom, "Our belief is that life is sacred and that intentionally ending one's life is not something that we would support. It's being consistent with Catholic teaching. Under Catholic moral theology, it would be direct participation in the act". Again, these are nice words provided you share the same moral theology--note the use of the word theology. Religious theology should have no role whatsoever in medical decisions or the running of medical institutions.

So what would truly informed consent involve? A good relationship between medical professionals and the patient that transcends the traditional doctor patient relationship. Ideally a person and his or her doctor should share a bond of some sort or at least a mutual understanding of what is important in life. A patient should know about the doctor's strengths and weakness as well as his or her standing in the medical community. A patient should know exactly where any possible surgery and hospitalization will take place. They should also visit the institution and know what is specializes in. A doctor should also truly inform a patient about what will take place. This requires social skills few doctors possess. For instance, I want to know everything and expect a high level discussion replete with references, an expectation that was met by my surgeon. For me this is the ideal but for others this might not be what they expect or want. Hence, informed consent is myth in my estimation. It is dependent upon complex variables that differ from person to person and institution to institution. I believe hospital administrators and bioethicists truly do the best they can to create informed consent--I just believe it is not possible to generalize with regard to informed consent.