(In) Visibility ~ Act Two

Having achieved most of what I had set out to do from my young adulthood onward, I was reasonably satisfied with my life’s trajectory.  I was doing well, had found an almost stable relationship, and was working away at my career.  The migraines would disappear for a while, only to return with a  blinding vengeance.  I found myself in a hospital one afternoon after being brought in by ambulance, as one of my girlfriends had encountered a pile of me lying on my kitchen floor.  I would later learn that I had a TIA (trans ischemic attack).  aka mini stroke.  I was kept in hospital for all of three days after being subjected to a litany of tests. The conclusion being that I was a lucky girl. (sound familiar? It gets better) I had a fluke of an attack and my blood pressure must have been higher than normal etc.  (According to medical science) I should be just fine to return to work asap.

Thinking I may have dodged a bullet, I continued where I left off and worked my usual overtime shifts at the hospital. That is, until I received a phone call from a neurologist that I had been referred to for follow-up.  Apparently I did indeed have a brain injury on the left side of my head (as well as some unique facial scaffolding) as they found some old scar tissue and…a vascular anomaly and a section that he clearly described as leakage.  I thought this was just great.  I questioned what all of that meant, and what was to be done etc. to which he replied “Two choices, wait and see, or referral to another specialist (surgeon) if the symptoms of your TIA become unmanageable (meaning loss of speech, sight.hearing or unusual incidences of falling”. I see, so like a stroke…groovy.

Having all of this to consider, I did what I thought was best and went directly back to my career and busy life.  A day came when I was at my desk at work talking to a client when I completely forgot who they were, and why I was talking with them.  I dropped my coffee into my lap.  I checked in with myself, and wondered if I was having a seizure, a stroke, did I have a migraine now?  Being that it was almost time to leave work for the day, I canceled the balance of my appointments and made my way home.  I called my neurologists office and left a message, then called a friend who drove me to the emergency department.

I was a familiar face to some of the folks who worked in the local hospitals ER.  I described what had happened to me in the best detail I was able, informed the intake nurse of my recent TIA, neurologists name and the medications I was taking.  The list included a medication for hypertension.  After a few minutes I was seen by an intern, then by another doctor, and then by a “specialist”  all agreed I was having yet another migraine attack, gave me the requisite medications, shuffled me into a dark cold room in a side alcove and let me lie there for what may have been a few hours.  I couldn’t tell, as I was not walking on this planet any longer due to the meds they had given me.  I was released a short time later with a referral to my neurologist and family doctor for a medication adjustment.

After seeing my family doctor, and my neurologist I was told that I was hypertensive, and had my meds doubled.  That seemed to do the trick, as I went back to work the next day.  I felt so great! Never better…except for this nasty issue with my right hand, occasionally my hand and arm would not obey my brain’s commands and let go of almost anything without warning.  I phoned my doctor, and informed him of this new development, he informed me that “Occasionally delayed paresthesia and numbness occurs after what you’ve been through recently”. Groovy I thought, now I’m going to have to invest in a medical reference course. “But on the bright side, you’re young, and this may take care of itself”.  I felt betrayed and alone, and angry that this was happening to me, and I was becoming just another woman with strange headaches…just like my mother?

~Crip Out~









(In)Visibility ~ Act One

After having had a definitive diagnosis from a specialist regarding my “condition” I began to feel diminished somehow.  Allow me to explain, being that you are aware that I was previously “Abled” meaning, that I appeared and functioned as an able bodied person for years.  I was a strong athletic woman who could work hard and play hard. I was a rock climber, cross country runner, and avid outdoorsy type of person. I loved dancing and and had an active life.  I had a solid university education, and held down a very demanding job.  I thrived on the stress and challenges of a  fast paced career

I was visible to the world and to myself (I believed) I went out there and made a difference for the people I worked with. I was in a word, a force.  I was fortunate enough to travel when and where I pleased, had my share of good and bad relationships with diverse outcomes.  I was fully and completely alive and able to move through the world with very little standing in my way.  I had married twice, and with my spouse helped raise a child into adulthood, I was as happy as I could be.

Then one day, I started dropping things, maybe I was overtired?  I regularly worked eighty hour weeks in healthcare.  I occasionally held down more than one job.  I became dizzy for no reason. I ate. I slept.  What the hell is wrong?  I had a history of violent migraines.  I was involved in a  car accident when I was young in the days before  seat belts were used.  I hit the windshield of my drunken father’s car when he tried to stop for something in the road, I hit it with my head, then my shoulder and the rest of my body followed. I had a head injury  that would take years to right itself.  In the interim, I dealt with severely debilitating migraines. They made me want to die each and every time I had one. They don’t consider migraines a disAbility, do they?

I got patched up, I was told that I was one lucky little girl, and that I should be grateful for the miracles of modern medicine.  I was told I had the best* doctors that were leaders in their respective fields.  I looked almost normal after a year and a half and many facial surgeries.  Skin grafts, new* cheekbone, eye socket reconstruction, dental surgeries and oh yes, those small neurological problems. (not worth mentioning, as I would apparently outgrow the pain in time, so the adults around me said). Back then*western medicine wasn’t  as sophisticated as it is today, and they just didn’t listen to children who said they were dizzy and felt ill.  Just another one of “those” headaches …women get them you know.  I felt myself beginning to disappear.

My early adult were eventful, I completed  university and was fortunate enough to have found  a decent  job in my profession. I had lesbian relationships that ran the gamut that relationships did back then.  I worked hard, slept little and led a very visible life.  I was doing all the “right things”  I had a great job, vacations, friends, partners, played sports,was  politically active and always busy. It was a time in my life where I was as alive and active as I’d ever been.

The headaches persisted.  I had seen several family doc’s who said my migraines were hormonal, and proceeded to write scripts for some pretty heavy meds, narcotics, muscle relaxants, and even for a brief while, anti convulsants.  Others prescribed psychotherapy, believing my pain could not be rational. The pain often became so unbearable that I would stagger into the nearest hospital emergency dept and either scream, cry, or pass out from the searing pain in my head.  They would pump me full of narcotics, muscle relaxants, and anti nauseants, allow me to  pass out for a few hours, and then let me go home.  I was losing pieces of days, and weeks…and of myself.

~Crip Out~