Take a minute and look at this picture. Really look at it.
This was taken at the reception party after my brother’s wedding in 2014.
What you are looking at are two terrified people.
She knew something about her was eroding. She felt broken. In new ways every day. She saw it. We both did.
We didn’t know what. Only that something was terribly, terribly wrong. There was a malicious and mean ghost haunting us. She was struggling, even in this picture, to ignore it. Suffering silently in terrible ways to appear ‘normal’ to everyone on the outside.
We hadn’t danced in public since our wedding.
She had been recruited to fill in for one of the bridal party at the last minute. Her terror over what could happen in front of people in that church is something I will never understand how she overcame.
She forced herself to be there for our new sister-in-law, absolutely terrified. The reality of any number of accidents during the ceremony, and her humiliation and being mortified and embarrassed if any of them did take place, gave her panic attacks throughout the day.
In that picture, she is exhausted. She is terrified. She is fighting a brain that will not cooperate.
And we had no idea why. The two people in that picture are lost in a storm they can not see, name, or know how to fight.
That was taken in 2014. It would be two more years of confused fear before we would see her MRI and know what was changing her. Two more years of misunderstanding, of falls, of exhaustion, of cognitive fragmentation, of accidents, of shrinking worlds, of robbery of her capacities, of tremours, and of tears. She would lose her ability to drive, robbing her of her independence and making her feel more like a burden with every day that passed. She would doubt her ability to be a good mother, a good wife, and a good person, as her disease would chew away at her abilities and their life.
Every day was becoming a fight in a long war, and she did not know she was in it. Neither of us did.
We were simply trying together to hang on.
I was in the same room with my father, who had not recognized me that night when he had first seen me. My brother had to tell him who I was. My mind was on fire with threat. My children were meeting their grandfather for the first time. In this picture, my hyper-vigilance was cranked to the point of fracture.
There is a lot going on in this photograph.
Fear. Doubt. Loss. Grieving. Exhaustion. Two people lost in a fight they can’t name and may not win, because they don’t know how.
In that photograph, she was supporting me as much as I was her.
Those two people are holding each other together in equal measure, surrounded by the dark.
Full of doubt about how the next years would unfold.
Six years ago. We’ve been managing the storm ever since. Once we could label it, two years later, once we knew what the ghost looked like, once we saw her MRI, we had a name. And we could know what we were fighting.
Today, Lesley and I have arrived at our 25th wedding anniversary.
That’s half of my life. And half of hers. Agreeing to face storms of all natures, unknowable and unpredictable, as a team.
We’re not ideal. We’re not perfect. Not even close. We’ve struggled, fallen, been cursed by our mistakes, and battered by life’s strikes.
But we’re together. We’re a team. Somehow, we’re here, in the storm. Still holding on.
Happy 25th anniversary, Princess. I love you.
You’re the strongest person I know. Even when you break.
No matter the storm; hold on to me. For as long as you can.
Don’t be afraid if you weaken.
I will not let go.