Monday, August 22nd, 2016
I am not the man I used to be. Once again.
My least favorite thing to observe in life is trauma changing me.
I hate anything changing me without my permission or timetable, but I especially hate when trauma alters me on the deepest levels as a person.
That phrasing alone either boasts or reveals that like many of you, I discovered that personal brokenness has vastly different depths.
I know what it is like to love someone so very deeply and then to lose them. In fact, I remember back when that kind of of heartbreak seemed the worst imaginable. That pain is so quaint and adorable looking now.
Another depth of brokenness is when something so traumatic happens that your heart truly does break and can never fully recover from that brokenness. You change dramatically and permanently as a person. I experienced that a few times in my life, such as during my opiate detox three years ago.
It was discovered over the last few years and months that I am not over a lot of my past trauma. In February, I was diagnosed with PTSD with Dissociative features. This goes back to abuse from a very young boy and into my teens, when my dad beat me bloody, unconscious and strangled me. Discovering your greatest fear is going to prison for blacking out and disabling a perceived threat is a deeper level of brokenness than basic heartache.
But I learned of a new one recently. Somewhere between that last filthy signpost and the one for death itself lies another Marianas level of dark and cold. This is one where you are broken far past hurt emotions. This is a hellhole where you are cut deeper than just a new grasp and display of what it means to love and forgive others or yourself.
This is the level where the very thing to shatter and crumble and die is your mind.
You know… YOU.
I don’t think I like this level as much as I did the others.
Every day that I lose a little more of my ability to walk, I also struggle enormously with cognitive problems. Whether or not it is temporary, I simply do not have the mental strength that I had even a few months ago. Watching my father and other loved ones recently succumb to dementia, I want to live journal my current crisis, but I am fucking petrified of becoming like Charlie in Flowers for Algernon.
Let me come back in a few months and see if I still get that reference.
I always tested high from a young age and that aptitude served me well in my demanding IT jobs for the last 18 years. The current job that I will be losing in a few weeks because of my illness is something far too demanding or technical for me to manage right now. That is even putting aside my inability to drive and extreme difficulty walking.
And yet losing driving and walking ability are nothing in the grand scheme. The real power and freedom is in the yet working and healthy mind. I am just scared that I may never again have the kind of mental capacity that I used to possess.
When my father started to lose his ability to walk, he also began to have memory loss and then severe dementia rapidly took over. That started just six years ago for my father and since then, he declined quickly and now has been in an invalid state for the last two of those years. My rapid decline in losing my ability to walk happened in just weeks, compared to the years it took my father. My cognitive changes so far have only been severe short term memory loss and confusion, but have been relentless and progressive.
The neurologist who treated me for the last six weeks with medications for Parkinson’s and epilepsy is waiting for the results of labs sent to the Mayo clinic just a few days ago. It is only one of two places in the world that can run this particular test for autoimmune encephalitis.
If that is what I have, then potentially these parkinsons, epilepsy and dementia symptoms might even be reversed.
If so, I might be able to get some or all of the rest of my mind back.
Tuesday, August 23rd, 2016
Amy and I drove to Gladtone DMV and we stood in line for 30 minutes to get my first, temporary handicapped parking permit. I say “we” stood in line, but Amy stood there while I periodically seized, convulsed and tremored in one of their comfy chairs. I say “comfy” chairs, but we both know that is bullshit. The unforgiving plastic is considerably worse for me, since I have no ass. This has been the result of losing so much weight in the last few months.
I found out today that people watching is less enjoyable once you realize that others want to stare at you the most. Especially little kids. I am convulsing just a bit less than when we left the house, which is nice. And I am a bit more lucid. Both are a result of the cannabis. As the fog begins to lift enough for me to form, in my estimation at least, some level of complex thought, I text myself something I do not want to forget:
Possible memoir theme change consideration:
Live journaling this disease progression. Then all other previous memoir themes / chapters could still potentially knead into that larger theme of surviving (or not) this disease.
Jesus. When that becomes considered one of the summits of complex thought for the day, it scares the hell out of me.
It will be several more weeks until the results from the Mayo clinic. The disease worsened measurably every week for the last eight weeks. If it progresses any further on my legs, I will have to abandon my cane for the walker or a wheelchair. If progresses any further on my mind, I may abandon rational and meaningful thought for dribbling out random nonsense. Worse nonsense than usual, I mean.
We are now at the stupid, dreaded state of “just wanting to know”, which is a Schrödinger worthy level of wishing for a potential diagnosis to be true and not true at the same time. Let’s not pretend this is not the first and last time I will be here for this sickness, either.
If I do have autoimmune encephalitis (fingers crossed?) and not a case of the We Still Don’t Fucking Know (is that better or worse?), then the important thing to keep in mind is that they have a plan. Ready?
It is a plan to kill the encephalitis that has been trying to kill my brain. Their scheme to do that is simply to destroy my immune system with first line antibiotics. I may even survive that process and if I do, then I have an 80% chance of recovery, both physical and mental. And there is an average 14 months to work through that recovery. So yeah, fingers crossed.
(Insert something poignant or inspirational here – don’t forget!)
Wednesday, August 24th, 2016
I forgot what I was just about to say last, but I already told you short term memory loss has been a real pain in the ass the last few months. At least I think I already told you .
Today was very hard. I was moving incredibly slow and fought with far worse tremors and seizures than both Monday and yesterday.
For most of the last ten weeks, my symptoms have worsened and evolved almost each one of those weeks. I kept threatening to start writing a diary of symptoms, but was most often too sick and tired to do so. My symptoms have changed so quickly and sporadically over the last few months, that I was constantly choking and trying to touch ground, like a kid in the deep end who forgot the feel of water, let alone how to swim.
The ever-blossoming, flaming shitstorm of the last few months goes back to a friend asking me if I was alright at my daughter’s wedding. I asked him why and he pointed out my shaking hands.
Since then the symptom list now includes:
Tremors, seizures, imbalance, weakness, convulsions, slow gait, memory loss, confusion, extreme weight loss, nausea, no appetite, crippling loss of mobility and in a few weeks, loss of employment.
I don’t want to jinx things by saying “at least X hasn’t happened yet”. Especially since I am feeling a little like a lightning rod lately.
(Giant letter X falls from above and crushes me to death)