UCSF Hospital, 11/9/07

Some anniversaries are better left unmarked.

January 2008 begins my 6th year with Devic. Basil and I have been together for just four months longer. There have been three of us in this marriage almost since day one. A marriage with two battling husbands: one who depletes, disables and desiccates but lives inside of me, and the other who rebuilds, recharges and nourishes and lives beside me.

I, who used to be so independent and cocksure, have been built up and torn down until I no longer know who I am on my own anymore.

I was 30 when I was diagnosed and he was almost 29. We’d just gotten married four months earlier after a whirlwind courtship. When Devic struck he took away so much of what I based my identity upon. The main issue was simply surviving, but there are a million small losses that add up to who you were, the person and life you took for granted, the person you will never be again.

I miss the small things. I miss feeling my legs strong and dependable underneath me as I stride the streets of my beautiful city. I miss feeling like life was full of possibilities. I miss feeling Basil’s fingers trail lovingly and exquisitely across my poised, breathless skin. Nerve damage has left my once-sensitive skin numb and dead to his touch five years on.

Not such small matters after all - they were a part of who I was, of what he and I were together, so briefly that my heart bursts with longing.

As newlyweds, how do you begin to have conversations about sexual dysfunction due to waist-down paralysis, dependency, debilitating fatigue or the financial impact of medical treatments when all you really brought together to the altar of marriage was a small hopeful satchel filled with ideas of a honeymoon mad with love, a home and children - someday.

Do most of us ever think beyond that? I never expected health to be an issue, never expected that the fruit I reached for would not fall into my waiting hands. Illness was something we’d deal with in far-off, elderly decades that lay barely visible across the vast bay of our planned lives together. Not today, not now, not us bright and shining new at the beginning of it all.

Everything that I read about Devic at that time told me that I had eight years to live. (Thirty, just married and marked to die.) Patients would simply become more disabled with each subsequent attack, until that fateful day when Devic wrapped himself jealously around the part of the spine that controlled breathing and took that person away to the unknown that lies ahead of us all.

Now, there are medical options that carve out extra days, like slow, wide sweeps of the lighthouse barely keeping the night at bay. But even in healthier periods, Devic makes endless demands and, each time, I give in.

I have so little left to give you, Basil, at the end of each day. When you walk in the door, it is all I can do to lie beached upon your chest, clinging onto your heartbeat, a castaway and survivor from another struggling day.

I wish I could be a better lover, wife, friend - but I’m held in the arms of the one who has taken your place.