To Be or Not to Be...

To be, or not to be: that is the question:

Whether 'tis nobler in the mind to suffer

The slings and arrows of outrageous fortune,

Or to take arms against a sea of troubles,

And by opposing end them?

To die: to sleep;

No more; and by a sleep to say we end

The heart-ache and the thousand natural shocks

That flesh is heir to, 'tis a consummation

Devoutly to be wish'd. To die, to sleep;

To sleep: perchance to dream:

ay, there's the rub;

For in that sleep of death what dreams may come

When we have shuffled off this mortal coil,

Must give us pause: there's the respect

That makes calamity of so long life;

Hamlet, Act 3, Scene 1

I’ll ask you to read this blog entry carefully because at first glance it may seem more disturbing than it really is, but if I am able to convey the ideas and meaning to you the reader that I so very much wish to then it may make the next few weeks easier for us all, relaxing your hearts and minds a bit and hopefully close a gap that has been created between some of you and I, due to circumstances beyond any of our control. Why I opened with those famous words from Hamlet will hopefully become clear as well.

I’ve done my first full week at home, almost all of it by myself. I’ve had plenty of good company during this time, and no small amount of help from some special people. But the majority of the time has been spent alone, as it should be, as is needed for me to become fully acquainted with this new life I have been forced to adapt to.I’ll start with the obvious. I do not like this new life one bit. I hate it. There is nothing positive about this new life in comparison to the life I had before. Parts of this were apparent while I was stuck in bed at Care Meridian, as you’ve read even more aspects unfolded while in rehab, and now that I am at home living this way day-in and day-out I am constantly reminded of what I cannot do, of how helpless I am when faced with even simple tasks, reminded of things that I have lost and will probably never regain, and of new activities that I must engage in that I find onerous and unacceptable. I have not only lost the use of my legs but also any control over my bowel and bladder and so am a slave to a bathroom schedule that dictates my every move and requires me to use new ways of going to the bathroom that I won’t go into but that no one would ever want to do. I need to sleep on ‘incontinence pads’ so that when (not if, when) I leak out urine during the night it doesn’t stain the mattress.

I have no sexual function whatsoever, no ability to have an erection, nor to have an orgasm, or to feel anything below the waist that could even remotely qualify as sexual pleasure. This point was driven home to me while sitting on my balcony and watching several attractive women who also live in this apartment complex walk by. My 'radar' kicked in, but then immediately I realized the limitations I am now under. I didn’t think it would matter as much as it does, but I’ll have to admit, it does. It’s always good to give others pleasure, but to know you can never ever feel anything yourself is a bit much to fathom.

I can no longer walk, run, hike, ride a bicycle, ride a motorcycle, dance, or do anything that requires the use of my legs. I can only carry what I can pick up and put in my lap. I can’t pick up very much, not due to lack of strength as much as lack of leverage, anything over roughly 15 lbs and I fall out of the chair. I have suddenly gone from being 6 feet tall to just a shade over 3 ½ feet tall, and the number of things that are now out of my reach is amazing, not just things that are high up but things like the deeper shelves where you put your pots and pans. I can’t even roll over in bed without grabbing onto something to help me turn over.

I need to lift myself out of the chair every 30 minutes or so and hold myself up for at least 30 seconds to allow the blood to rush back into my butt cheeks, otherwise the muscle tissue will be starved for blood and oxygen and start to die, thus creating a pressure sore that at best will land me back in bed for several months to heal, at worst can go septic and cause a major infection, necrosis and even death. That’s how Christopher Reeves died, from an infection that started as a pressure sore. My nerve pain is constant and at certain times of the day it is very strong, to the point where I cannot talk when a wave of pain passes through. So far the medicine they have given me is only partially effective, and I am told that’s how nerve pain is, very hard to treat effectively. It also may never fully go away, only time will tell.

I have become dependent on others for the most basic of things, many of which no matter how long I am in the chair, no matter how skilled or crafty I become in solving the many puzzles that now confront me, regardless of if I get a car etc, I will still be dependent on others for help with things that I would have never needed help with before. If you know me at all you can imagine how much that grates on me.

There are more issues but hopefully you get the point, and sorry if it seems like a lot of whining and I most certainly am not trying to evoke pity or sympathy. But I need to make sure you understand even a fraction of what life is like when living with a spinal cord injury like mine.

Barring a major miracle this is how I will live the rest of my life. That is the issue at hand.

Most of this week has been spent in anger, frustration, and in grief, mourning the loss of my old life. They told us in rehab it would be like this for a long time, years for most of us. They told us the suicide rate for complete paraplegics like me is 5 times the national average for the first 4-5 years of being in a chair. After that it drops down into line with the rest of the population, meaning that it takes at least 4-5 years for most paraplegics to fully adjust and adapt. They spent a lot of time talking to us about suicide in rehab, both in groups and one-on-one. I can see why.

To be or not to be, that has been the question on my mind as well for this last week. But let’s be clear, this isn’t about being actively suicidal or having decided to commit suicide. It’s a bigger internal debate that is captured well in the soliloquy quoted above. Have you ever really read it? Go ahead, I’ll wait, it’s worth a complete read.They told us that suicide was a ‘permanent solution to a temporary problem’, and in most case I agree. I can’t imagine people killing themselves over the loss of a job; their girlfriend breaks up with them, etc. Those truly are temporary problems. This however is different. They also told me in rehab that every spinal cord injury is different, and that where mine is, and how it happened, the chances of any recovery are almost nil. So as I said above, barring a major miracle, this is in fact a permanent problem.

Do I want to accept this constrained life, this life that will never be as I want it to be, that despite my best efforts, no matter how much strength, determination, or willpower I throw at it, will forever fall short of the life I want and in fact had prior to my accident? Or do I choose to not accept it and finish what was started that day and interrupted by the EMT’s and doctors in the trauma center?

It is not in my nature to give up. My favorite movie is “Cool Hand Luke”, if you’ve seen it you know what I mean. If not go see it. It goes against every fiber of my being to even consider giving in to something and folding unless I have exhausted every possibility to remedy it. I’ve struggled and fought my way out of many situations in my life, and the one thing that kept me going was the idea, the promise that if I kept working on it, kept fighting it would be better and the situation would be resolved, the outcome acceptable. In this case however, no matter how much I try, no matter how easier it gets to perform those tasks that are hard now due to my getting stronger or getting smarter about how to do something, I’ll still be stuck in a chair, still without bowel and bladder control, still never able to experience sexual pleasure, and still dependent on others to a degree that is unacceptable to me.It may get easier to live like this, but barring a major miracle it will never get better. It will never be like it was; it will never even come close.

There are some who choose to accept the constrained life. In rehab I spoke with several folks who decided that being alive at any cost was good enough for them, that they were willing to accept the lowered standard of life. They told me the key was that they lowered their expectations of life, became willing to accept all those negatives I described above, because they for various reasons decided it was worth it. One guy was Catholic and just said suicide wasn’t an option because it was a sin. Two others I spoke with mentioned their kids as the reason they stuck around. They seem to be in the minority, apparently many paraplegics either do kill themselves or just stay at home and vegetate, living off of disability, many getting drunk or stoned, watching T.V. and depending on others for help.

The internal cognitive dissonance I have been experiencing between the will to fight and the desire to give up is a first for me, an unbelievable struggle in and of itself and very hard to communicate to you; when I start to describe it inevitably many jump to the conclusion that I must be actively suicidal and it makes it very hard to have a conversation when you ask “how’s it going, how are you feeling?” and then I really tell you. When you try to tell me “it will get better” you’re missing a critical point, better relative to what? Better relative to today? Yes, maybe. Relative to 6 months ago, before my accident? No way. Relative to what I hold currently as a standard of living, a quality of life worth putting in the effort? Life is hard even when you are able-bodied, free of any major disease or injury, and if you are at all a mature adult you learned early on that life was mostly work and a little fun, but on the whole worth the effort. In my case the scales have been tipped very far in the negative direction and I’m having a hard time finding the good to balance it out, to make it worth the effort.

Added to the struggle is the knowledge that so many of you are out there pulling for me to ‘keep at it’, telling me I’m some kind of inspiration, supporting me with your efforts and donations, how to quit on that? The outpouring of support has been overwhleming and greatly appreciated. It makes things even harder; it serves both as a positive and at the same time as a weight, and when I think of giving up I feel ashamed that I would be letting so many of you down.

I also know how hard this is on many of you, you too are mourning the loss of me and my function, and are worred about losing me as well. I share this not to scare you but to offer up what I so far have not been able to articulate clearly to some of you what is going on with me and why I act the way I do right now.

So that’s what is going on right now, I am battling with myself daily, and am pretty much a complete mess. In the meantime I do what is in front of me, as I learned long ago. I try to find better ways to get dressed, to wash the dishes, etc. I checked my mailbox for the first time since I lived here. Good thing I did, there are bills that need to be paid. I will pay them. I am looking for a car. I am still walking the line, moving forward, because I don’t know any other way.

I am not myself, nor will I be my old self for quite a while. You may see glimpses of my old self; I hope so, as I miss him as much as you do. I am doing the footwork as best I can, while I mourn the loss of my old life and I struggle with the larger question of ‘to be or not to be’. I am not actively suicidal nor do I want to die, but I don't want this life I have now either, and that is vexing me beyond words...