Is It Grief, Or Is It Life?

Sometimes I have to ask myself … is it grief, or is it life?

I have nightmares, all the time. I dream of terrible things that could happen to my children.  I dream that I wake up and all my hair has fallen out, and I dream that I am blind and all alone. Or I dream all of them together and find myself bald, blind and alone.

Grief? Probably part of it. But I suspect that the nightmares about the kids are work related (one sees too much, hears too much, knows too much after 25 years of policing), and I suspect that the dreams of going blind are because I was recently diagnosed with macular degeneration.  The dreams of being alone are because, well, I AM alone, and the dreams of waking up bald are probably caused because my hair is indeed falling out.  See how grief and reality get all tangled up together?

This is currently my life. If you’re reading this, I’ll give you a little catch up.  It’s been awhile since I wrote.

I think it’s been about a year since I realized that my hair was falling out. For awhile I thought it could be my imagination, but then I paid a butt load of cash to go visit a private dermatologist who specializes in hair loss, and that money bought me an answer. The answer was essentially, “Yep. Your hair is falling out.” That was followed by a bunch of relatively useless information about how there is pretty much nothing that can be done about it. The hair loss that was caused by stress is apparently growing back, and the hair loss caused by some shitty form of alopecia will not. “I don’t expect it to get any worse for many years” said Dr. Super Expensive. Since that visit I have indeed lost more hair. Apparently Dr Super Expensive was wrong.  (On the upside, maybe his diagnosis was too.  We’ll see.)

Needless to say, my already fairly high stress levels were bumped up a solid notch or two, and I became completely obsessed. My hair was on my mind constantly … no pun intended. (Hair. Mind. Head. Get it? Anyway…). I will confess to having the self pitying thoughts of “Haven’t I lost enough? Do I have to lose my hair too?”

As my feel-sorry-for-myself meter rose, so did my anxiety. A lot. It has been a very challenging time for me. Every day the thought plagued me that I would be bald and alone. And while I’m sure that it sounds funny to some reading this, or that you may think it’s not a big deal when compared with what I’ve already been through, but I happen to think it’s a very big deal. Huge, in fact. And while I would have traded my hair in a heartbeat to save Ben’s life, the fact is that he will (most aggravatingly) remain dead whether I have hair or not. So I’d like to have my hair, thankyouverymuch.

Anyway, you know how it goes. Life kicks you down and then something great happens and you get back up again, right? Wrong. I went to the eye doctor who kindly informed me that I have macular degeneration. And just like that I was knocked down even further, and kicked around a bit too. Apparently now my destiny was to be alone, bald and blind.

Did you know that life isn’t fair?

When I am anxiety ridden, the only thing that eases my pain is to learn about whatever it is that is making me anxious. I know the general rule is to stay off the internet, but for me it’s all about finding something hopeful to ease my worries. Like, “it is possible for alopecia to reverse itself” or “it is possible for macular degeneration to never progress any further.” I need to know there’s hope.

For the last several weeks I have been immersed in hair loss information and macular degeneration information, but I just couldn’t find the info I needed to ease my anxiety. And so I have spent hours in the tub every night, trying to quiet my mind and just find a way to cope. The baths didn’t help the anxiety, but I am starting to grow gills.  Perhaps soon I will learn how to breathe under water.  That would be a snazzy party trick.

I finally did what I do best … I took matters into my own hands and did it my way. Despite our shitty medical system that takes months to move along, I got myself a referral to a retina specialist in a bit of an unconventional way.  And then I called an old friend who called his old friend who knows what’s what in the world of ophthalmology, and he was able to answer some questions and ease my mind a bit while I await my appointment with the retina specialist. (And in other good news, I found the conversations with my old friend very cathartic. I was able to cry and not feel like a burden because we don’t speak often so he wasn’t listening to the same shit on a different day. It was also nice to reminisce a bit.)

Around that time I finally saw my own GP, and by the time I walked out of his office my anxiety had seemed to level out. It’s quite possible that he may be a witch doctor.

As for the hair, his witch-doctorness cannot fix that. I haven’t figured that one out yet,  but I guess if worse comes to worst I could always shave my head and pretend like I am making a statement. I’m not sure what the statement will be, but hopefully I have some time to think about it. Hasn’t Sinead O’Connor rocked a shaved head for about 30 years now?

After I saw my GP I had a few days of relative peace and then it was gone.  I couldn’t quite figure out what the problem was this time, and then the answer came to me like someone had yelled it loudly in my ear.  The voice that shouted sounded like Ben’s, and this is what he said ..

“If I don’t do the chemo, I’ll be dead before my next birthday!” 

Ah, yes.  There we go.  That’s what Ben said to me in the late spring of 2015, when I told him he should refuse the “treatment” he was being offered.  I wanted to run off with him and the kids to Iceland, but he wanted to do what he did best … fight.  So we didn’t go to Iceland and he did do the chemo, but he still wasn’t alive on his 47th birthday.  Or his 48th.  And now here the kids and I are on his 49th birthday, remembering him and celebrating the day he arrived and made the world a little brighter.  But he isn’t here to shine his own light.

My heart knew this before my head remembered.

Saint-Onge family on Bens birthday Mar 13 2006


Happy 49th birthday, Ben.  You are so deeply loved and missed.  You are in big shit when I see you again.