The last time I sent one of these missives, I spoke of a medical incident that caught my attention in a big way. In it, I spoke of the idea that eventually there would be an “It”; something that would cause my demise.
You see, I was born with a bleeding disorder, hemophilia. Probably the most famous person in history who also had hemophilia was the last Tsar of Russia's son, Alexis. It could be argued that his hemophilia did much to change the trajectory of 20th century world history. If you like history, it's a fascinating story. If you like movies, the film Nicholas and Alexandra does a wonderful job of telling the story.
In my last newsletter I had mentioned there has been a dozen or so times when my hemophilia has nearly ended my life. The first incident occurred when I was four days old. The most recent was four weeks ago.
So, what is hemophilia and why is it so threatening?
First of all, it is very rare and only men are subject to it. Women have their own versions of bleeding disorders, but hemophilia is specific to men. It has only been in my lifetime that there's been developed a definitive test to verify it. It has only been in the last half of my life that treatments for it have been available.
Some of the first treatments came online in the 70’s and sadly, because they were donated human blood-based products, were subject to deadly hepatitis C and even deadlier HIV viruses. Out of a cohort of about 30 men that I knew who had hemophilia during those times, I'm the only one who was not infected by the HIV virus and who didn't die of it. I'm also a survivor of the hepatitis C contamination rampant at the time. The story of a young boy by the name of Ryan White highlights that story.
So, what is it?
Imagine, if you will, 12 dominoes standing on end, close enough so that when you push the first one over the other eleven would topple and eventually all would fall. That means that coagulation has taken place in the blood business.
Imagine that each of these dominoes represents a factor that's necessary for a wound to close or for bleeding to stop. To form a scab, if you will. Those of us with hemophilia, are missing either the 8th or 9th domino. So, bleeding control can never take place on its own.
External bleeds for us are no more dangerous than for normal people. Just put pressure on the wound for a few weeks or so (and I'm not kidding), and eventually the wound will heal. I've also found that super glue works, though my doctors have cringed when I've told them.
At least at this point in time, it's not a recommended course of treatment. I do however, travel with my own supply of super glue and I've read that now there is a surgical quality super glue that is sometimes used by surgeons. The really good news is that over the last couple of decades, they've developed a safe replacement factor, and I carry a supply of that with me when I travel.
The greatest danger with hemophilia is an internal bleed. We all have blood vessels that rupture from time to time. For those who are normal, the body goes to work with all 12 factors right away to stop the bleed. Most of the time, we're not even aware that anything happened, except perhaps we notice a bruise that seemed to have come from nowhere.
For those with hemophilia, that does not happen. We can develop a bleed and not notice it and die as a result. That's exactly what happened to me 4 weeks ago. Unfortunately, the blood vessel that broke was in my brain and over a period of weeks, filled my brain with blood. That accumulation began to put a lot of pressure on my brain matter and began to suppress my normal brain functioning.
The symptoms were the same as anyone who might have suffered a severe brain concussion. I didn't feel particularly bad, and I didn't think that my symptoms warranted all the attention I was getting. But as I was being life flighted out of a remote part of central Colorado, I did have the awareness that they don't just helicopter someone out and fly them to a Level 1 Trauma Center who has a bit of a headache.
Turns out that the “It”, whether I would live or die, was touch and go for a few days. I was not totally conscious of that, but it was true. They removed (and replaced thankfully) parts of my skull. They installed and uninstalled a couple of drains and did all the other things that go along with treating a severe brain injury.
I'm home now and most of what I had going on for me before this seems to be intact or coming back. I am a lucky soul.
As in all the other previous near-death experiences I've had over my lifetime, this one was also full of awarenesses, revelations, and recognitions that register as profound and beyond mystical. My experiences, as I shared them with others, have been recorded and written down.
Sitting with my own memories and impressions of my experience now sound very similar and comparable to the stories I hear of people who these days are taking journeys assisted by some kind of drug and a guide. Though I'm not a fan of what is becoming a thing these days, I truly believe and have personally experienced spontaneous moments of such profound awarenesses that they speak of, by simply being fully present in my own life.
What I would say is that if one is going to do a journey, I certainly would not recommend my brain bleed methodology. I don't imagine it will catch on and become as popular as the others are becoming. Those other ways, though I don’t recommend them, sound a whole lot safer and easier. It happens over several hours or a day, a weekend, or a week, not a month.
As far as I know, when people finish their journey, they can walk without aid. Their memory is intact and all the other kinds of things that happen with a brain incident, are not side effects.
As a loved one remarked, as I was telling them of my psychedelic-like experience, “It seems for you that there is a very thin veil between this world and the rest of what is.” As I'm sitting here today, I believe that that's one of the gifts of my hemophilia. Having visited near Death so often, the veil has worn thin and there's not so much of a difference between there and here. That's like letting the sunshine in, rather than the sun shining through the clouds of life.
Now my task is to try to find some way to coherently describe what I've experienced, then have the courage to share that. The one thing that I did walk away with is “It”, whatever “It” is, is all about joy and compassion and acceptance, connection and love. There is and was no fear. Just incredible curiosity and total fascination.
I am not unique. Many have spoken of what I have seen and witnessed. I'm sure that some of you reading this or listening to this have also.
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