Almost eleven years ago, something bad happened. One of my sisters got divorced, it was messy, costly, frightening, and everyone fell apart.
It devastated and consumed each one of us, at different times, and in our own ways. It was 10 years before things finally became sort of OK again. Still, it was impossible not to have changed how we would forever see one another, and the way we viewed the world. There was no undoing the damage and in the end, the unspoken truth that we would never be the same family we’d once seen ourselves’ as, was the hardest part to accept.
But onward. That was that. A bad thing had happened to me in my life. I had my story. I paid my dues in the land of the dramatic , sad and unfair. It was over, and now, bullet proof, I was going to be alright again.
And then it wasn’t. As it turns out, there is no cosmic balance sheet of adversity vs. good fortune. In 2007 I was diagnosed with Relapsing – Remitting Multiple Sclerosis. For months , I wouldn’t even say the words “multiple sclerosis.” (To this day,I still spell if wrong. I’m a really good speller, too) Maybe some part of me believed if I refused to acknowledge this thing, it would cease to exist.
But magical thinking aside , the downward spiral was beginning. Whether I chose to acknowledge it or not, things were starting to crumble. I was getting sicker and sicker. My diagnosis was officially changed to Primary Progressive Multiple Sclerosis, And I couldn’t shake the idea that it wasn’t fair. There had been a mix-up. Loss mounted upon loss. I was consumed with bitterness and anger.
My doctors provided me with support, encouragement and idea after idea. Courses of medical treatment that were constantly being tweaked to my specific needs. There was mindfulness meditation, plain old meditation, support groups, endless literature. I focused on the injustice of what I had to endure. The immobility, exhaustion, pain, weigh, depression and acute degeneration of my cognitive skills Everything was slipping away. Enough, I kept thinking, enough. ENOUGH!! I had had it.
There were the days, even weeks when slight glimmers of my old self arrived, ready to hit the ground running. But then I would suddenly snap back. It felt like a faint memory. A downgraded version. I was so conscious and fixated of the inevitable.
Publicly I portrayed a person who was handling it all with dignity and strength. “It is what it is. you do what you have to. You just keep fighting” or “I just thank god my children are healthy” were my go-to answers when discussing my MS with friends, acquaintances, even with my closest family. I so wanted it to be true. Appearing stoic was the most important thing I could accomplish.
But of course the real story was very different.
In short, I simply didn’t want to fight any more. I was done. Full of resentment, I was tired of picking myself up. And I was ashamed of my secret. Turned out that I wasn’t brave at all. I didn’t turn lemons in to lemonade. I was terrified, and resentful and swimming in self pity.
One morning in the beginning of October, a friend that I’ve known since the 8th grade called out of the blue. He was in the area, and would be at my house in ten minutes. Click. I panicked. I looked like the wrath of God. Uncombed hair, shabby, ugly clothes; it was as bad as it gets. I was mortified as I looked around my hopelessly disorganized clutter filled house. I just wanted to disappear. But I didn’t have any time for preemptive strikes. It got ahead of me before I could stop it.
He didn’t pretend not to notice. He just sat with me on my porch, talking a blue streak like always. We made each other laugh so hard we were wiping tears away. It is a fact of our friendship that we could endure both time and distance. We are both adept at adjusting the necessary boundaries that we make as we go. Still, I was struck by the notion that it we could still do it. I could still do it.
He didn’t stay very long. As we began the rituals of saying goodbye he stood up and looked at me. He looked me over. I felt excruciatingly vulnerable and exposed.
“Pray”, he said, finally “just pray and when you can’t pray, just say ‘Give me strength’. Say it over and over”.
As long I’ve known Adam, I have never heard him say anything even remotely spiritual or touchy-feely. Not when his father died, Or in those days after 9-11 when the list of people he had loved and cared for kept growing longer and longer. Or even just three weeks earlier – during the 3am phone call from New York Hospital to tell me he had a son.
I have been given almost identical advice by countless people. All i heard were words strung together. But on that day, sitting on my porch with Adam, I conceded. I don’t know why. I don’t spend too much time figuring it out. I just accept that those words became something. And I knew I was deciding to make a choice. To stop being scared of appearing cowardly. To stop the obsessive focus on appearing anything at all.
Let me be clear – I HATE this disease. MS is a thief. Terrible and sneaky. It has stolen so much from me; the things and worse, the people I hold dearest. I am so angry about the loss. Eventually I just accepted some degree of resignation. I am certain that I will ever be able to make peace with it.
But it’s changing. I’ve found out this teeny part of myself who wants a fight. And that is enough for right now.
Because, to NOT make the effort feels like a slap in the face to all the people who love me, offer their support and who give me credit for being so much stronger than I really am.
The blackness is still there. But, in tiny increments and only for a short time, light wins out. Pure, unfettered, dizzying joy suddenly explodes when my husband and I lay on the couch, watching “The Other Guys”. And that is enough. It has to be, because it’s all the only tools I have to work with right now.
So there you have it; secret’s out.