Monday, April 16, 2012

Neurological Strangeness...

I have had some neurological issues for most of my adult life (like, you're kidding right LOL?) and they have been causing some major disturbance, and possibly even danger, so my Dr and case manager have me going to see my neurologist.  While I've had migraines most all of my life, what is happening now is different.  It's happened maybe a dozen times that I know of throughout my life, but gotten much worse.

not my scans (btw!)
Under duress I'm having episodes of extreme head pain and TGA or transient global amnesia.  It looks like this:  I'll be sitting there talking with someone, or doing some activity and I can start to have real head pain...unlike migraine pain it is my entire head, then real confusion comes on, sometimes where I'm not even sure of who I am, where I am etc...In my 20s this happened one time and lasted for up to an hour, but other episodes until recently have only been short, say 30 minutes or more.  At issue is that whatever is going on, I can't remember sequence of events and such, and sometime don't remember any of it.  Afterwards I have been known to sleep for very long periods of time.

Talking with my neurologist today, whom I already have a good Dr/patient relationship with, he indicated that these most definitely did not sound like typical migraines.  Luckily I have all uptodate brain scans, so we know that there are no new anomalies, abnormalities outside of my AgCC birth defect.  This does lead to the conclusion though, that something in my abnormal neurology/physiology is triggered under stress and these episodes are happening.

The times I do remember, can be extraordinarily frightening, and confusing, and I'm worried that come the time I am living alone again, as I do not know, honestly how long we will all have my dear friend with us...I'm worried I could be somewhere or in a situation where this could have dangerous consequences.  

My Dr. bless his cute little soul (yep, he is actually a cute small guy, what can I say? LOL) scheduled an EEG for 8am, and I'm only allowed to sleep 4 hours max the night before.  OH JOY!  I'm usually in bed around 9pm every night, so this is going to be rather interesting.  No caffeine either.  He explained that the idea is to have me as stressed as possible (Oh JOY again?) I am so not a happy camper.

the Freemont Bridge
I remember the first time (that I recall) this happening to me.  i was in my late 20s living in Portland, OR...and my life, at the time, was not good.  While I had no relationship with my family, by this point they pretty much cut me out of their lives.  I was dealing with my disability, dealing with coming to terms with being a gay man, and many other stresses and was suicidal at the time.  I was driving on the (I believe to be) largest span bridge in Portland the Freemont bridge, and as I neared the high point, I had no idea where I was, who I was, no Portland, no Joseph, extreme confusion...and almost had a car accident...I ended up pulling off the road in NW portland, in utter fear for what seemed a long time, I'm guessing could have been 30 or 40 minutes, but I'll never really know.  Two weeks after this I downed a bottle of prescription meds and a fifth of Vodka and tried to end my life.  They say my heart did stop on the table, but the only thing I remember was gaining consciousness some days later.  The doctor told me that he had even contacted my parents while I was in the ER (the first time) but they refused to have anything to do with me...I really don't remember much of those days.

I am so grateful for the fine medical help that I'd received, I know I wouldn't be here today otherwise.  And even looking backwards, as horrible as my life was back then, today I've so much joy, if not still daily struggles like we all have.  While it's different for everyone with AgCC, many of us have related neurological issues all of our lives, many that go undiagnosed until they reach a crisis point.  While its painful to even think of those days anymore, I have so much to live for, to love for.  I knew from a very young age, that things were not "right" with me...and I don't mean in a 'moral' way, but "communications", "wiring", etc...diagnoses of AgCC has altogether been a great blessing.  I can proactively move through life now, with a better knowledge of my unique situation.  I can only think about the many others out there like myself that have yet to discover this disability, and the needless suffering they'll undergo because of that.  This is why I'm so verbal out it.

Life has become good, or at least I can see I see the possibility of good in my life now.  I cannot ask for anything more than this.  I do recognize that perhaps I'm not more stressed than I've ever been before...but...with my current regimen of medication, therapy (physical/emotional/mental) I'm perhaps more able to recognize the impact of stressors on my life.  This is good, and bad I imagine.  While I can't think of anything I would rather be doing than caring for my ill who means so much to me, the impact of watching her decline can be overwhelming at times.  I know this much, that there are others in the world that experience the self same thing.  It sounds strange maybe, but I take comfort in this.  I take comfort in my my ability to face these life situations first hand without going deeper into decompensation and illness myself.

My friend and I spent a good part of the day yesterday at the memorial of our good friend Steven Ayers...a man who was an example of selfless love, joy, humility, humor, wisdom and sobriety.  Although I'd not known him nearly as long as many others have, he was in a way, a grandfather figure to me.  He will be missed greatly by many. At his requiem so many peoples  from so many walks of life came yesterday to honor and remember him.  His wife Sandy, received in his stead a chip commemorating his 40 years of sobriety.  This loving man reached his sobriety before I was yet 10 years old.  Up until the very end, he had so much life pouring forth out of him to others, it seeped through every crack, through every pore.  One had only to be in his presence and experience his tenderness and humility, to understand the miraculous, to understand love.

Steven and Sandy meant much to me.  As I said, I  knew them not as well as others, but I remember when meeting them, they treated me as their own...I felt like his grandchild, if only for a short time in my life.

Life can be very difficult for people with AgCC, especially when undiagnosed.  I myself have been estranged from my own family for decades.  I admit, this is and was partially my own choice, and that I couldn't for the life of me imagine what it was like to parent me, or to be my sibling.  My behavior, my reactions, my communications (or lack thereof) have always been "all over the place."  It's not surprising that family members either misunderstanding, or not knowing at all about this disability and its implications distance themselves from those they love.  I never once doubted their love.  For many years, though I doubted my own worthiness to be loved.  I now know this to be a malicious poison...I've come to love and accept myself...largely in part to people like herself, Steven, Sandy, my friend Sandy in Texas, and others, that through my storms of life held firm in their love, faith and belief in me.

still radiant even with cancer
I believe God sees and knows all things... I know that these special people, they will never never really leave me, or I them... they will live as long as they are remembered. but it still hurts, its still painful...Part of me fears of what will come when my dear friend passes away...yet for the first time, I recognize this part of me, this child within me...and I can give him comfort, I can assure him that there will always be new life in  different forms, that God fills all things.  

Rather than fear the future, I have an overwhelming love of the present, of the blessing, the fleeting moment, (all things exists in this fleeting moment), yet if I am preoccupied with making it "stay" or what "exists" in the past, I miss the beauty that is right before me.  So much to learn, so much to experience, so much to know.
~Just Joe

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