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.

 

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

How Long Will I Love Him?

Where did December come from? We are more than halfway through the month and I feel as though I’m on a fast moving train that is careening out of control towards 2018. I was looking forward to / expecting an easier December than last year, so I was caught surprisingly off guard by how hard it hit me. It is definitely not easier. Turns out, it’s even harder and far more lonely.

As the end of November rolled around I started to notice how angry I was getting, for no good reason at all. I don’t like feeling angry. It’s wasted energy that I don’t want to put out into the Universe. But after a few days of leaving bursts of angry words hanging out there in space it occurred to me that my whole body was awakening to the fact that December was approaching. It seems that without consciously thinking about it, my whole being instinctively knew that Christmas was coming – a time we traditionally enjoyed as a family and looked forward to, and now we face yet another without Ben. December now brings with it reminders of how much pain Ben was in by this time in 2015. It brings reminders of his utter disbelief that he could be dying, and that no one was going to step in and save his life. December brings reminders of our Last Christmas. The end of December brings about January, and January brought death.

Cancer stole peace from the month of December. Death stole possibility and wonder from every New Year.

Within the first few days of December I found myself exhausted from just living life, worn out with the realization that I have not seen My Love for almost two years. And for those who have created a vague, romantic idea of life after loss, let me tell you how it really goes. People move on. People who are not personally immersed in grief cannot spend their days allowing themselves to be sucked dry of all happiness, even if they love you. I think that is one part self preservation, one part boredom over constantly hearing the same stories of despair, and one part basic human nature to forget what is not technically yours. (ie: grief).

As for me, I am grateful for the fact that I am able to think rationally about situations and don’t allow myself to get sucked into the “nobody loves me or gives a shit” type of mentality that some others seem to unable to avoid. Logically, I know I am loved, I know Ben was loved, and I know that he is still missed. But I would venture to say that I am the only person in existence who has not gone one single day out of the last six hundred and ninety-ish days without thinking of him and physically aching over his loss.

For me, six hundred and ninety days have done nothing to diminish the surprise I feel that he is not walking through the door. The shock that he’s gone. The despair, the aching, the longing for him. And so, because I live with those feelings every single moment of every single day, it hurts me to watch life pass by without him and to watch everyone else do exactly what they are supposed to do with their lives … live them. The head and the heart don’t marry up sometimes, I suppose.

As I watched Raegan play soccer earlier in the month I was listening to the other parents talk and cheer, and despite the smile on my face I found myself angry over the fact that they could continue to enjoy soccer without Ben’s quiet presence on the sidelines. How dare they get to enjoy one of the things Ben loved most! When I was discussing the 2018 European vacation with my friends I lost my breath for a moment when I realized that Ben doesn’t get to come. How dare we all make these plans without him! Irrational? Yes. But that is what happens in my head every moment of every day and I cannot stop that train. Even in the car I look at every store, every turn in the road, every park around town and think “I remember when I was there with Ben.” I don’t think I will ever be able to escape that and so I am often only listening to people with half an ear as my mind wanders to “that one time Ben walked into that store, or pulled into that parking lot, or dropped me off at that front door, or walked down that street with me.”

This month brought about a long awaited surgery that I needed in a town we rarely went to, but as I entered the 10 block radius of the hospital for my pre surgery appointment I found my heart starting to beat a little faster and that old “frienemy” Anxiety began making an appearance. I couldn’t figure out why I was feeling that way until I pulled up to the front of what I had thought was a completely unfamiliar hospital, and I saw Ben standing there. Right here:

I could see him clear as day, standing at the side of my car. I watched myself folding up his walker to put in the trunk. He was weak and he had trouble walking, and he suddenly burst into tears of frustration, pain and despair. And it was in that moment that I remembered that it was at that hospital where Ben had received his Nivolumab. That was the hospital Ben thought would save his life. It did not.

As I walked through the hallways I saw Ben everywhere, and memories I had previously banished to the recesses of my mind came back full force. I wanted to lay down on the floor and cry. How dare this hospital continue to function after failing to save Ben’s life? How dare all the staff continue on with their work and fail to recognize that they had failed my Ben?

In 2015 this was My Ben, The Titan, in the hallway of this very hospital.  He was trying to get to his chemo but he was too tired to keep walking:

On the day I was there for my own surgery the space where he once sat in front of the window to catch his breath was empty.  But I saw him.

The young widow of a man who died in 2013 wrote this a few years back: “Those of us who have lost a spouse endure a particularly gutting kind of stress that eats away at our protective barriers. In 1949, two psychiatrists at the University of Washington set out to study stressful life events and the ways they contribute to illness. For 15 years, the duo studied 5,000 patients. At the end of the study period, death of a spouse topped their list of cataclysmic life events. The authors assigned it a value of 100. Far behind in second place, with 73 points, was divorce. Nearly 50 years have passed since they published that study, and the results still stand. The stress of losing a spouse permeates every part of one’s body, affecting each cell and manifesting tremendous physiological changes. Cortisol levels rise, and sleep is disrupted. Heart rate and blood pressure increases. Your neutrophils – a white blood cell that fights infection – become less effective, particularly in the elderly. Your cells begin to falter in their responsibilities, your immune system weakens, and you fall prey to countless illnesses that, under normal circumstances, would be held at bay.”

There is no escape from the side effects of losing Ben. My brain has not caught up and it plays nasty tricks on me about where Ben may be and when he is coming home. I still want to talk to him all the time, and I am saving things up to tell him when I see him. I want to ask him how he felt when he died. I want to know if he knew he was loved. I want to know if he knew we were all there, and if he heard the music we played, and if he felt peace or irritation over the fact that we wouldn’t shut up. I want to text him a play by play of Raegan’s soccer game on the days he can’t make it and I want to hear him ask me “What do you want for dinner?”  I want to hear him complain about me turning on the Christmas lights too early.

Life is complicated now, where it was once so simple. I am no longer very rational and my mood can change on a dime.  I waffle between four main feelings …. the agony of missing Ben, the understanding that life is for the living, an overwhelming sense of completely irrational anger when I observe others living life, and guilt on the days where I find glimpses of happiness or future potential.

How Long Will I Love Him?  In the words of Ellie Goulding … “As long as stars are above you.  And longer if I may.” Listen here.

 

 

Who Will Zip Me Up?

I have recently discovered the latest in a list of annoyances caused by being a … a … a … (I still choke on the word “widow”) … alone.

As I write this post I am preparing to board a plane this afternoon for San Diego … Widows Camp.  There.  I said it.  I am forcing myself to go despite the almost unbearable amount of anxiety it is causing me.  I know, I know … I am going to meet with people who may actually understand me and all the shit I’ve gone through, and I should not be anxious about it.  But sometimes knowing how I should feel is just not the way I actually do feel, and this is one of those times.

(That is not me, btw.  But it demonstrates quite well how I feel right now.)

There are plenty of reasons why I am so anxious about attending the camp.  Where do I start?  Flying alone, finding my way from the airport to the hotel without my husband, having to walk into that first room by myself and feeling like all eyes are on me, worrying that I will spend the weekend silent because if I talk I may burst into tears.  The list goes on.  But the biggest reason for my anxiety is actually the part that is intended to be the most fun …. the Masquerade Ball.

The Masquerade Ball, so lovingly planned by the woman who founded the Soaring Spirits Organization and intended to provide everyone with an evening to dress up and get out and have some fun, is causing me untold amounts of anxiety.  I am not a dress up kind of girl at the best of times, although I would comb my hair and throw on a nice blouse for my anniversary dinner each year.  Basically I live in yoga pants and tank tops – they’re comfortable and quite frankly I don’t really have anywhere to go that requires anything fancier.  Until now.

The Masquerade Ball is on Saturday night, and while there are several reasons I am anxious about it, here’s the top four:

1. I don’t know how to dance.  Ben was an awesome dancer.  For a big, rough looking man he sure had some good moves on the dance floor.  “Ben” was synonymous with “rhythm.”  I, on the other hand, never managed to advance much beyond the old 1-2 side to side shuffle.  (Unless I am drunk and surrounded by those who have known me forever and will love me no matter what.  Under those circumstances I am an awesome dancer.  And singer. Just sayin’)

2. I don’t know anyone.  Not knowing anyone raises those old teen anxieties of standing on the sidelines at the high school dance.  Yes, I know that many people arrive at camp without knowing a soul and people get to know each other before the Saturday night event.  Knowing that does not ease my anxiety, because secretly I fear being the first person to attend this camp who doesn’t make any friends, and therefore will be the high school student standing alone on the sidelines at the dance.

3.  I don’t really know what to wear to a masquerade ball.  It involves a dress.  The last time I wore one was at Ben’s funeral, and I looked terrible.  Yes … terrible.  I’ve seen myself on video and it wasn’t pretty.

4.  I don’t own an appropriate dress.  I do have a sundress that I have worn on one occasion when it was simply too hot for anything else, but the only pair of shoes that go with it are flip flops.  I don’t imagine that flip flops are appropriate for a masquerade ball.

Ever the practical person, I decided to try to ease my anxieties by dealing with each one head on to see if I could find some solutions that might help me to relax.

–       Reason 1.   The only way to fix this problem would be to take some dance lessons, and there wasn’t enough time.  So, the answer to this problem?  Try to look busy on the sidelines for awhile until I can make a discreet exit.

–       Reason 2.  Literally cannot be fixed until I arrive.  No solution for the time being so I may as well put it out of my mind.  Or just keep worrying about it.  Either way.

–       Reason 3.  Google told me that people wear fancy costumes and hold masks up in front of their faces.  I love the mask part (no need to apply make up) but the dress part?  Oh my.  Still, now that I know the answer I suppose it is technically no longer a problem.

–       Reason 4.   The answer to this one was easy … go and buy an appropriate dress.

I decided I could not go and buy a fancy gown like the ones that Google says are worn at Masquerade Balls because it wouldn’t fit in my suitcase, but I figured I could find something slightly fancier than a sundress.  I spent about 7 hours in two different stores trying on gown after gown after gown and gagging at myself in the mirror.  When I was finally sweating like I had just finished a 10K from all the changing of clothes, I happened to see a plain black dress hanging on a hook.  Long.  Simple.  Rather elegant.  Comfortable.  Affordable.  And, hopefully with a little help from a pair of Spanx (and possibly dimmed lights) … it would fit.  Hallelujah!

The sales lady packaged it up and off I went, stopping at one other store to buy out every pair of Spanx they had along with seven different bras that I thought may possibly work under this dress. (This was not cheap, I might add). Finally I arrived home, squeezed myself into some Spanx, pulled on the extremely awkward strapless bra and stepped (almost excitedly) into the dress to see how it all worked.

And ….

There was no one to zip me up. 

I was enraged.  Did you ever watch the Friends episode where someone stole Ross’ sandwich at work and he turned into Red Ross? I turned into Red Wendy.  I lost my sanity, upstairs in my bathroom that day.  I went into a frenzy of twisting and turning and trying to reach behind me and push the zipper up, and when that didn’t work I tried to reach down to grab it.  I am not that flexible.  Nothing worked, and I was furious.  I normally would have sat down and had a good cry, but I was just too mad.  I was mad at Ben for not being here and for leaving me to try to figure out how to get myself dressed for a Masquerade Ball all by myself.  (Not to mention that I wouldn’t have to attend this ball if he hadn’t gone and died on me.) I was mad at Ben for causing me to sweat so profusely in my efforts to practice zipping myself up that I left sweat stains on my brand new dress.  I was mad at Ben for dying.  Period.

When I finally sat down on the edge of the tub due to exhaustion from all my raging, it occurred to me that I clearly need this camp. 

Once I was calm I discovered that if I pull the dress over my head instead of stepping into it (thank God for jersey material), I only need the zipper to be down a few inches instead of all the way to my waist.  Then, if I sort of shimmy and pull at the same time I can manage to reach that last little bit of zipper and pull it up.  I felt like a bit of a warrior,  but I am still pissed in general that I no longer have anyone to zip me up.

Yes indeed, I do need this camp.  Hopefully my next post will not be about how the zipper burst during my crazy shimmying efforts to pull it up, and how I was left half naked at a Masquerade Ball standing on the sidelines.

Hug your family.

PS.  I also bought some pretty gold sandals to wear so I can ditch the flip flops.  Now I’m worried that I may be overdressed at the Ball.  😉

Sometimes It’s All Just A Little Too Much

I am writing this post from Hawaii.  To be a little more exact, I am writing it from the bathtub in the condo in Hawaii, where I am hiding and trying to breathe.  It’s one of those moments.

Sometimes it’s all a little too much and I couldn’t explain why if I tried. I don’t even know.

The trip has been beautiful and peaceful for the most part. We have swam and kayaked (Lisa paddled, I sat there), relaxed in the sun, drank wine, gone down a water slide and even swam in the ocean with dolphins. I have also enjoyed 100% Kona coffee.  That’s a big deal for me.

All that beauty is not lost on me, and yet here I am hiding in the tub remembering Ben saying “I think I pulled a muscle” while I nurse my own extremely sore lower back and think about how Ben’s “pulled muscle” turned out.  And cry.

Yes, I know, I know, most muscle aches do not turn out to be cancer. But apparently sometimes they do.  If I could turn off the shitty thoughts I would. Sometimes I can. Occasionally I can’t. This seems to be one of those moments.

You know what I wish for more than anything at this moment?  I wish that all of my kids be gifted the ability to live in the moment and not in the “what ifs.”  I hope that when terrorists commit atrocities and innocent people are killed, and when men and women who protect our communities go to work one night but don’t come again because some asshole figured that they wore a uniform so they should die for that, and when another student or their mom’s aunt is given another sad cancer prognosis…..that they find a way to cope and understand that those are not their stories.  I hope that they can understand that no one knows what life holds for them, but at that particular moment that is not their story. And that if it ever becomes their story in any way, they will cope.

I hope they emulate their Dad.  I hope they don’t crawl into a bathtub to cry. Or, if they do, they only do it for ten minutes and then they remind themselves of all the beauty in the world, get up, towel off and move on.

How I miss Ben right now.

It’s time to get out of the tub.