I am Not Depressed But...

I am certainly not happy. To me, this is a perfectly reasonable response to my current predicament. I have been completely independent since I was paralyzed. Like many other people, I highly value my independence. Indeed, I consider independence central to my identity. Thus I am like most Americans in placing great value on independence. Unlike most Americans however I realize how fleeting independence really is. I have given great thought to why we Americans value independence. For those of us who are paralyzed, temporarily or permanently have lost independence, and the terminally ill we realize what a crock independence is. No one is fully independent. Most people are dependent upon employment to put a roof over their head, some are dependent on family or a spouse, But no one, and i mean, no one can survive without human contact that at some level contains a measure of dependence. The dependence can be large or small, significant or seemingly insignificant but it is ever present. I know this is true as I have experienced being both independent and dependent.

In terms of disability, what bothers me is he double standard that is applied to people with a disability as opposed to those without a disability. Frankly people do not care about the disabled. We are seen as inherently flawed, physically and socially. We are seen but not seen. It is only when disability strikes home that people suddenly get disability is a social malady. What does it matter if one cannot see, hear, or has lost a limb. We are inherently the same person. I am the same man before and since I was paralyzed. I am however not treated the same. This double standard has grave consequences when dealing with the health care system. Fot instance, when I became medically stable the hospital wanted me out the door ASAP. My choices were stark--a nursing home home or purchase a clinitron bed and rent a wound vacuum. This cost big bucks and I had the family to make this happen financially. The case worker and doctor agreed home was the best route. But neither the case worker or MD really cared where I went. The institution wanted me out, what happened afterwards was not their concern. At no point did any one ask or think what would happen to me in a nursing home. Sadly, this reality, moving a paralyzed patient with a sore to the nursing home is the norm. Worse yet, most paralyzed people never leave a nursing home. But it is not jut paralyzed people that face this dilemma. What about the elderly that are commonly disposed of this way. What about the terminally ill? How many can transition to a good hospice center? Not nearly enough that's for sure.

The double standard I am referring to is deadly. It affects millions of people and is a true sign our health care system is hopelessly flawed. When I was in the hospital this was a constant refrain. The system is broken, there is nothing that can be done. All acknowledged this no one did anything about it. So, if I ended up in a nursing home it was less than ideal but it was no one's fault aside from the hopelessly broken system. Well, we the people are all part of the system and someone needs to figure out how to fight back. I tried, and got nowhere. Frankly contacting another human being on the phone was a job by itself. I have never talked to a human being at my health insurance company--I am not sure it is possible. The wound vacuum company, KCI, would not lower their rates for me by a dollar. Thus I am paying exactly the same price as a huge corporation or hospital to use their equipment. All this makes me wonder why we accept a double standard. What happened to basic human decency. Why could a human at KCI not say let's cut this guy some slack. They are giant corporation but as we Americans have learned such entities have no heart or sense of ethics. Indeed, on gloomy days like today I wonder if compassion and ethics are a thing of the past. Worse yet the most vulnerable are most likely to be hurt.

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