Let’s Start at the very Beginning…

April 2017

So, this all began on November 21, 2011. No, maybe it was August of 1991 (nasty upper respiratory infection), oh- or September of 2001 (when I had reactive arthritis). Maybe it was the flower bee when I was 6 or 7?

Well, so perhaps starting at the beginning is a very good way to start, but I am not writing a biography today, I’m going to start with here and now.

For one of the first times in my life, I am afraid. Not worried, in the “Oh, no, what if this or that happens, or that!?!”. This is simply “what if”, but no awful scenarios are running through my head. I can create some rather fabulous ones, but I think that my story is interesting enough without fabrications for the moment anyhow!  It’s an empty “what if… ‘, with nothing to complete the fear.

I am very ill with a condition called MCAS- Mast Cell Activation Syndrome. As well, I struggle with co-disorders Ehlers-Danlos Syndrome- Hypermobile type (EDS-H) and various disautonomias. Many, many more details to come… for right now, know that I have anaphylaxis about once a day, and I am allergic to almost everything you can be allergic to, and several things that you ‘can’t’ be. In addition to having a particularily severe form of a disorder once thought to be rare, the local political-medical situation blew up at just the wrong moment, and I got caught in the crossfire. My care has been beyond bizarre. The story of what occurred will be told, but not today.

Because today, I have to go to the hospital to get an iron infusion. I am severely malnourished; I can get enough calories, but I live on hard cooked wheat, non-gmo corn and young cheese (mozzarella, mild cheddar, etc). Well, and chocolate. (I was allergic to chocolate as a child, perhaps this is karmic payback). I have packed up all the supplies I will likely need- I react to the saline IV from the hospital… I’m not worried about reacting to the infusion, (Puh-leeze, a little anaphylaxis? Whateva…). I can tlogic my way out of this one.

I am terrified of going there tomorrow. I have never, ever felt this way in my life. I have been nervous, apprehensive, overwhelmed, anxious, confused, etc etc. But this type of non-specific fear is new to me. I’m going to get an iron infusion. They’re notorious for causing allergic reactions. Since I react to everything, I will probably react to it. It’s all a matter of how much, and how quickly. I’m tempted to crank the infusion up and bolus it in there… if I’m going to go into anaphylaxis, I may as well get the iron. (Then again, maybe not…). It’s not that I haven’t felt fear before, real, genuine fear for my safety. There was always a fear ‘of’ something; the bear on the trail in Algonquin with one sister, the other sister doing spirals in a Cessna without warning, etc. etc.

This fear is different. It’s pervasive, but elusive. As soon as I look directly at it, it dicipates. The only way I can describe it is that it is the opposite of confident. Which leads to two interesting points. Firstly, that I have clearly been an enormously confident person my whole life. I notice it’s absence keenly. The other is the question of how I got to my mid 40’s without having felt this type of fear. I am as afraid as anyone about things like bears in my car (bears are plentiful here), I have some anxiety, caused by the overwhelming challenge of the last five years. I have metaphysical fears as any thinking being does “What will happen when I die? Is this all there is?” Etc. That’s not it either.

This fear isn’t sharp or focused. There are no edges to help define it. I have a reasonable fear that I will have a bad reaction, and that I might not get the care I need. It is more profound than that.  When I observe it, I notice that it makes me feel tired. So very, very tired. Everything is a fight right now. I’m gradually climbing out of the muck. I don’t expect that I will leave that muck behind, swamp stomping is going to be part of the deal in my life (to any of my non-Canadian and/or urban readers, swamp stomping is one of the most fun things ever. But it does stink, and once every couple of summers is sufficient).

Perhaps I am afraid that I am running out of fight. The pain when I eat, the unending ringing in my ears, the restriction to my own home, trying to figure out how to pay for all of it, the loss of most friends and social contact, trying to make the load as light as possible on my husband (and often just getting in the way!), trying to provide even a modicum of security and normalcy to my children’s lives. All these battles take energy. They take fuel. Not that long ago in history, preparing for a battle meant stockpiling metal. If I stock up an arsenal of the finest iron, it will be an infusion of not only energy to make it though the day, but may allow me to rebuild a few bits of this poor battered body of mine. My iron is so low that my cheeks don’t get red when I flush!

I am reading a biography at the moment, and the author must have been in my head more than once. She echoed my thoughts perfectly when she repeats  I’ll be okay. I’ll be okay. I’ll be okay.

Of course I will be.

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