When the Going Gets Tough, the Tough Search for Joy

It's been a tough year.

I try not to bring it up anymore. No one likes hearing about it and recently my husband looked at me as I was going over the various events and calamities of my day, and as I was performing the emotional labor of the worry of having a family member suffer from cancer, and he said, "when are we going to stop being sad?" I looked at him puzzled, and defiantly said, "I'm not sad!" thinking to myself that if he was sad, that was his way of coping, not mine. I surveyed my life and the multiple blessings in it and contemplated all that I had been through good and bad.

I realized that I get sad sometimes. In fact, at times I am at the mercy of a crippling depression that goes dark as quickly as the light fills my windows in the morning. In those times, my rational mind and my suffering body cannot find each other. There is no middle ground between us. Yet, at other times, I so fervently grab on to joy and light that there is no space for my sadness. It is as though the light warms and nurtures my relentless gratitude — my true recognition that even while life is hard, it is all we have. This is the shirking of my pain. I suppose in the times where I see myself standing in the light, I feel untouchable.

I don't feel untouchable as though nothing can get me. Everything already has. In the past year, I have contended with chronic pain (the legacy of my 10 brain surgeries), loss and death in my family, grief, the suffering of stage 4 cancer in my most fervent supporter — my mom, the witnessing of my beautiful, helpless puppies suffering after being hit by a car, the unkindness of strangers and all of the personal pain that comes with that level of calamity and mishap. And yes, those things were not easy, and I don't think I am untouchable because I am in the process of surviving them. I am untouchable because I accept them. I don't like them, I don't want them, but I allow them to exist because I am not given another choice.

I get critiqued by others around me when I angrily dismiss the power anthems that our society uses to give us hope, fervor and fight in our battles against disease. I don't want to sing a fight song; I don't want to fight at all. The same people tell me that happiness is a state of mind. I say, no. I was never fighting my body, I'm not now as I still worry about cerebrospinal fluid leaks, tumor recurrence and chronic pain. And if I was fighting and my tumor grew beyond what my body could handle, if I lost that fight and lost my life, would we really want me to leave this earth thinking, "if only I'd fought harder!" I see the benefit in amping up patients, urging them to find their strength as they toil against disease, but so much of this, even with the best care and resources, is well beyond the realm of control.

And I know that. I see how unfairly and randomly diseases choose us and plague us. I know the anguish of the world, indeed I've devoted much of my life to writing about it, learning it, trying to find ways to make suffering less powerful and to give access and resources to those without. I don't have any answers yet, but I push ahead, knowing that if we allow our suffering to exist and we stop trying to stop it, but keep trying to manage it and help one another, we become invincible.

I think often about my husband's defiant declaration that he no longer wants to be sad. I don't think any of us do. But when I look at my life, with all I've done and seen, I am not sad. I am just… here. Though I suffer, and cry, and feel, I also live. As long as I get to do that — and who knows how long that will be – I can't afford to be unhappy. So, I live in the light, and when I'm trapped in the crippling darkness, I whisper to myself, "just allow" as I hope that the light shines through the cracks in my broken body.