I was given an assignment...

The other day I was given an assignment.  I don’t like assignments.  I find assignments tedious and overwhelming.  I dislike assignments because I am being forced to look at something.  If it is something pleasurable then I don’t mind the tediousness of the assignment, it is less burdensome.

If, as in this case, I find the assignment difficult to face it becomes a source of more anxiety and that causes me to block my thought on the subject.  I usually jump into things with vigor and creatively approach what is at hand.  This is something I cannot approach in my traditional way.  It is cut and dry, it is life changing and I cannot hide in a delusional world bright colors and hopefulness. I cannot make it better, I can make tolerable.  I cannot fix it and make it go away.  It has made me be dependent, something I don’t want to be.  It has made me face myself, it has made me look at myself, it has made be honest and it has made me less concerned about other people and more concerned about me. It has taught me to say no and mean no. It has taught me to accept help from those who offer it, to accept my diminishing abilities and try to do it gracefully, smiling along the way and remaining the gentleman I was taught to be.

I am dying.  I am terminal. I thought I would react to this in a very different way. We have all thought about what we would do “if.” I know when I thought about dying I imagined overwhelming depression, a feeling of powerlessness, my chest got heavy and I imagined I would be overcome with anxiety. This has not been the case at all.  When I had the “talk” with my doctor two weeks ago I asked questions, a lot of questions.  I wanted to know when! I got the same response I have gotten from all of the doctors.  “Everyone is different.” I asked what to expect, “Everyone is different.” You see my wanting to know when and what to expect is really nothing more that my wanting to control something well beyond my control. I am naturally a very inquisitive person. I want to know the nitty gritty of everything, I research it and dissect it to understand it and the implications.  I know, to a degree what to expect.  I know, to a degree what to look for and I know that there are aspects which I will not recognize that require diligence on the part of those close to me.

End Stage Liver Disease, ESLD has many causes. It manifests differently, it can be complicated by other illness. It is fatal if not treated by transplantation. When I was given this assignment it was on the heals of my doctors telling me that I needed to be prepared to not undergo a transplant.  I was told that given my age and other illness I needed to understand that “the livers go to younger healthier people.” I was then catapulted into that class of patient who classified as terminal. I have a doctor who deals only with the chronically ill, the critically ill.  His approach is direct which I admire. He has also respected my wishes not to sugar coat any aspect of what is happening to me.  I admire him because he understands my need to know the details and causes and he takes the time to tell me and explain to me the intricacies.

Of the many possible effects of ESLD there is one particularly awful side effect. Hepatic Encephalopathy, HE.  HE is a bi product of toxins building up in the brain.  It affects memory, motor skills, mood, behavior causes fatigue and slurred speech.  It is a neuropsychiatric disorder and while treatable with medication it can rear its ugly head in a heartbeat and go from mild to full blown quickly without warning. It can lead to coma and death in it’s most severe form.  I have HE. For me it has led to extreme fatigue, something I am told will persist and worsen, I have good days and I have bad days.  I become very tired, it’s a tired that I don’t think is easily explained unless you have ever experienced it firsthand.  It is a feeling of intense exhaustion that comes on without warning and the brain tells the body to stop. I fall asleep now in an instant. Unfortunately, I fell asleep while driving, I woke, but had difficulty staying awake and making it home.  So, now I am faced with the reality that at some point I will be unable to drive.  HE is particularly scary because if you are not around someone who recognizes what is happening the signs can be mistaken.  Of course knowing all of this changes the way I approach things.  I know that I have roughly five hours during the day to function before I must stop. The simple tasks of everyday life are tiring.  I plan appointments and my driving so as not to be caught in the onset of debilitating fatigue.  I plan the important things so that my head is clear and I can cognitively process what I need to process.  What makes it difficult is noticing the subtle changes in the way I do things I used to do without difficulty.  At times I have problems with motor functions, I leave words out when I’m writing, I forget easily and can find myself at a complete loss for what I was doing.  I hate it that my speech slurs and I get unbalanced on my feet.

Despite all of this, I get up every morning, I take the medications needed to help me function as best I can. Sometimes they work, sometimes they don’t.  No matter how good I feel in the morning, no matter how good the medication works I know that it won’t get better, it will get worse.  

I think one of the hardest things about dying is really learning who is with you along the way.  I have always been the kind of person who stands by someone in need.  I have done that to a fault in my life, not going when I should have, but feeling obligated to be there for one in trouble.  I was raised that way, I was raised to put yourself second and do for others before yourself.  What I have experienced with illness is that people fall away.  I have learned they don’t do it gradually, they don’t do it by saying anything.  They just stop. Whether it’s not knowing what to say or do, or just a preoccupation with self, they stop.  People I thought would be there are no longer there.  I was told by a psychologist friend who does pre-transplant screening, someone admire,  when I was first presented with all of this, to know that people were going to fall away, that when that happened a new group of people would appear to support and stand by me.  That has happened and it has happened in such a way that has amazed me.  The people surrounding me now expect nothing from me, they understand the daily struggles I have.  They don’t expect me to function as if I am well, the don’t expect me to take charge.  They do expect me to do what I can for myself but understand there are times I need help.  They are there. They brighten my life, we talk about what is going on and what I need and how I feel.  They support me.  Most of all they make me feel safe. That’s important, the feeling of safety, the feeling that no matter what I will be cared for, not alone, not abandon,

My liver disease began many years ago and I was unaware until very recently that there is a genetic component to my liver disease and we now know the problems began in my twenties and have progressed.  That does not change the outcome however.  It does not change the truth that without a transplant I will die.  It does not change the reality that I am older and not a prime candidate for transplant.  It does not change the statistics that seventeen people die daily in the United States waiting for a liver.

One thing I can say is that my view of life has changed considerably.  I am more sensitive to others stress and their manufacturing unnecessary events in their lives.  I can say I remove myself from people creating havoc for themselves.  I also know when to say no and don’t fear doing so.  I also do the things I enjoy doing, I may do them more slowly and less obsessively but I have learned to enjoy it more and not feel guilty for making myself happy.

I have learned to count my blessings and be thankful for the very small group of people who, on a daily basis, surround me with unconditional love and allow me, without recrimination, to be me.