There Are No Good Stories Here

It finally happened today. I met the woman whose experiences in the past couple months have been close enough to mine to feel that someone actually could know what it feels like to be me right now. And it felt painfully glorious. 

We met in the elevator. She spoke sharply to someone on the phone, so I turned. I looked at her pained, teary face and asked if she’d like to sit together for a few minutes. “I can’t,” she replied. "I cannot take a moment off. I need to answer questions and make decisions and be available. I cannot sit. I haven’t eaten today. I haven’t showered for three days.” I understood.

Her husband is going home on hospice tomorrow. The cancer from his brain has spread.  A very different situation. But until they received that information yesterday, her experience had been a lot like mine. My turn came, and she listened and teared up, nodding. She knows. She’s right there, right now. “There are no good stories here,” she said. We scanned the room. “Believe in a way back,” is their slogan. Our eyes hit it at the same time. “They should change that," I said. "There’s no going back. Only forward.” “It’s bullshit," she replied. "I hate those signs.”

I thought I was the only one.

In twenty minutes of kinship we found so many shared experiences. We both felt ourselves inadequate but were impressed by the other. I am confident that we are both doing the best with what we have. We do disagree on one thing. I think that there are many good stories to be found at Magee. For me, good is not synonymous with easy. Or desirable. A good story makes me think and grow. And there exists the potential for both when walking amongst people whose lives have turned on a dime. 

We sat. She ate some soup. And we connected. So intensely, and so briefly. Because we both need to keep running.

The Kindness of Intimate Strangers

Today we returned to 900 Walnut St. for a CT scan, almost 3 months into our new lives and 7 weeks from when Pat was a patient in the NICU. We approached the security desk, and there he was—William. In his Jefferson Hospital green blazer, he shouted out my name, ran over, and hugged me. He then rushed over to Pat, shook his hand, and told him, “We’ve said a lot of prayers for you.” It was the first time they met, but we have a deep history. Combined, I spent more than 35 days walking past that desk. William knows my older children, has seen us cry, comforted us, and vowed to pray for our family. Today he told me, “It’s hard, because you feel so limited in being able to help in this position.” This letter is to William:

Dear William,

Your ability to help is boundless. You and your coworkers have served as an anchor for me in a way that no one else could. While friends and family couldn’t be with me every day, you could. Every day, you looked directly at me and checked in. You noticed the days when I had strength and the days when I was struggling. You were my yardstick. When Pat was moved to the hospital around the corner, I continued to park at the Neuro Hospital, because you and your coworkers felt like home base to me. I preferred to walk the several blocks in the rain for weeks over being anonymous. You are anything but limited.

Now we are at the rehab hospital, and there are new yardsticks, new touchstones. The doctor and nurses, therapists and aides, of course. They keep Pat well and improving. They are a great support to our family. But they aren’t the only ones: The ladies at the front desk, much like you, see me cry with regularity. Because you can only keep a stiff upper lip for so long. It tends to fall by the end of the day, and their genuine caring and kindness  get me though. One of them told me this morning, “You’re doing ok, because you’re still on both feet. You’re still standing.” So I continued to stand.

The manager and staff at the cafeteria, who have understood more than once  when  I’ve forgotten my purse at home because I’m focused on remembering to pack Pat’s clean laundry or Jamie’s lunch. The concierge, who set up and decorated a conference room for us to have a private Thanksgiving meal. Who sees me, tilts his head, then crosses the room to give me a fist bump or a high five to remind me that he is with me.

Each day, it’s the combined efforts of the entire staff that keep me going. It’s people who don’t know me but somehow hold me up who get me through each day. People like you, William. 

I have never been good with names, but now there are dozens locked into my mind. Being a recent student of brain injury I will say this: I feel confident that should there ever be a time when my memory is less sharp, when it’s a challenge to remember what I ate for breakfast, I will remember you. Perhaps not your name, but I will always remember this feeling of love and caring from intimate strangers. Your impact is profound, and it is ongoing.

With gratitude.

Today I Ran

Almost three months into things, and the adrenaline has worn off. I am tired and scared and faced with changes to our income and every aspect of our lives, in addition to Pat’s challenges, changes and wellness. On any given day I am asked to consult and make major decisions that will impact my family forever without having any training or expertise or guidance. I am somehow expected to know. And I am scared. And overwhelmed. And exhausted. The support of friends and family and peer mentors can only take me so far. At the end of the day, all of these decisions—and their outcomes—somehow rest on my shoulders.

Today, I wanted to run. 

Away.

Far.  

I was about 7 blocks from the rehab hospital, and it was time to head back. I started walking—slowly. It was a hard walk. The real me was clinging to doorways and cars, and I kept having to pry her fingers off and drag her along. We made it a block.

I wanted to run.

So I ran. 

But instead of running away, I ran toward toward the hospital. With my purse, and red boots, and plaid leggings. Around construction, across Broad Street, through protesters. I ran like my life depended on it. Which I guess it did. It does. It will.