Today was my billionth infusion? I tried to take my routine pic for #UHC to make sure they pay the bill, but it didn't take. My phone just shut off instead. But I have this pic from what it did turn on. My student asked his aide to send me a picture of him waving. So this is what I sent back when I finally got the message at home. "Hi Kevin! Thank you buddy!"
Becca walked in today for my treatment; beautiful, bouncy Becca, looking sad. Her long, dark pony tail reaches her waist and it always seems to defy gravity and bounces still. It is thick and heavy, but her sprite-like spirit always wins. It bounces. She walks the halls and tends to her patients with something I haven't found a name for. She's gentle and free. But today, she is just sad. Still gentle, but something is weighing her down.
Her spirit always has this way of gently tending to me before her hands ever get to my body. Today this angel of mine was sad. The bounce was gone, and I stared at her hair as it just hung, the weight of the world bearing it down. I wanted to braid it and tell her it would be okay. But I didn't. I have to remember this isn't Little House on the Prairie. It's an infusion center and a nurse in scrubs. It's just that I have known her for so long, and she never gets to sit.
Sadness and all, she still told me I was too cold and rubbed my hands, trying to warm them for me. Even in her sadness, she put her own aside and worried for me. The heat was broken. She put the the heater by Joan's feet, trying to warm her up so the needle wouldn't hurt. I know B could hear what they were saying about her in the other room, but she was classy. She held it together. But the sadness, you simply couldn't hide.
Was it us that made her this way? Or was it simply her bad day?
She was sad in a way I have never been privy to and it made me feel weepy and special. All these years and it’s always about me and the others. Who worries about our Becca? I begged her to eat a donut and reminded her how great she was. I carefully explained donuts cure all kind of ailments, especially sadness, but to no avail. Deflated, quietly, she nodded a polite “no-thanks”, half-smiled, and looked away.
It felt worse than any relenting needle she’s given me in the last half-decade. I was mindful to be super gentle with her today.
It occurred to me that she’s handled my sadness with grace for over a half-decade now, and I failed when tested with her heart for a single, sad day. Seeing Becca that way made me realize how selfish disease has made me. It’s always about me and my dumb illness. I’m like all HOLLYWOOD, but with sickness. Ew. Don't be that guy.
I rolled my IV pole into the doctor’s room to be checked when called and he said, “You’re coming up on a BIG day!” I was wracking my brain for any clue. And then I got it. He means I’m turning 40 soon’ish. He realized before I did! He asked me to sit there and he took a picture. I was his first patient in the new building. When he left the room to fetch something, I looked at the picture. How different from when we first met. My hair was long then. My cheeks fuller. I didn't know this woman in the picture. Yes I did. I just didn't want to know her. She looked sad and older. Tired. There was no girl left in her.
I have aged. Disease does that. Worry does that. Taking on the pain of the world does that. "Jame, this is what happens, embrace it." I put the phone down and tried to erase the picture from my mind.
I worry sometimes about him. He works too much, too hard, too long. Becca is in the next room, quiet and sad. AND now I could see a mist on his face, like he was sweating, but he was chilly. He didn’t feel well and here he was, noting my birthday was coming when even I never thought of it.
"Doc, please sit. You don't look well." I tried to stop him from running out to fetch something again, but I couldn't. He doesn't stop.
I see his prayer book and rosary beads hanging out of his pants pocket and wonder how many rosaries he has counted for us. He told me once he sits in church sometimes, alone, and just worries about his patients, especially his MS patients. He prays.
He was the first in this practice to start seeing people with MS. He was the first to try to understand. MS is impossible to understand. I can hear him say it in Italian. Impossibile He is so smart and speaks many languages. Even the ones zero people speak anymore. I can only imagine how the disease makes his wheels spin and his brain hurt. The doctor fascinates me because he is the first doctor to let me know that his heart hurts for his patients. No doctor has given that up yet. Not for me and to me. Sometimes I worry what happens to him when we all get worse. Like Becca, who takes care of him?
I could tell he was stressed from the move and unwell and I didn't want to overwhelm him. So I tried to hold back and not tell him everything about my month. I find myself not wanting to upset him. When it gets to a breaking point, it is then that I fess up.
Once I ran out of an infusion because I was distraught to learn my friend had passed. I was behaving like a child. I started yelling at Becca for something that was not her fault. I lost it. I ran. I was a jerk and had to go in and apologize a few days later. BUT, until then It nearly drove my doctor crazy. He now knows every contact number for me by heart from spending 24 hours trying to find me. He couldn’t find peace until he knew I was okay.
He didn’t know if it was my treatment, something MS-related, and rumor has it he was yelling until someone found me. He would not let me “go” from his mind, from his busy day, until he knew I was okay. He was worried like a father would be worried about an over-emotional kid storming out of the house and taking off in his car. He didn't judge me when he found me. He was just happy to find me in an "okay" state.
When he came back from fetching something else, he was still sweating mid-face, and still feeling chilly. He finally admitted he wasn’t feeling great. He finally sat. I was relieved. We talked and I returned to my infusion recliner. I saw George on the way and punched him in the arm. Like a sister to her brother.
When I was in my chair, Ger told us he had good news, “L is pregnant!” We all erupted in a joyous-than-ever group, “HOUZZAH!” Joan yelled, “We’re having a baby!” WE are having a baby. Like this little light would be an extension of all of us. We!
"How much of a WE have WE become," I wondered.
My friend, who I haven’t been infused with, in what feels like years, walked in. I was so happy to see M! She has a cane now. I almost felt sad when I saw it, until I realized she wasn’t, not in the least. My heart let out a sigh.
She was just as radiant and cool as ever and didn’t give a flying fig about the cane. "Atta girl," I thought. That's M. Spunky and death metal and this beautiful, wild and unruly hair that curled in the most beautiful way.
The long red curls cupped her face, she smiled and sat next to me, looked me in the eye, and let out a sigh, “My husband is leaving me.” She shrugged her shoulders and said, “He told me he doesn’t love me anymore. He can’t handle the disease. My mom told me that years ago, but I didn’t believe her. She told me so.”
I thought about her mom.
Wondered if she wished she never said that aloud. I told you so is one of the worst reactions you can ever have to someone's misfortune. Was that her response? I pray not. I have bitten my lip a few times, catching myself from saying it to Zoe. I hate those words. I-TOLD-YOU-SO!
They are hurtful and they make the hurt party feel responsible for the pain and abandonment. And ya know what? Sometimes we are. BUT, love is the benefit of the doubt. M was simply trying to love the father of her children, even when it was hard. She got stung. There's no point in zinging her one more time with an "I told you so".
“Oh M, I’m so sorry. I will pray. I’m so sorry.” I was so stumped. Shocked. Hurt. My words sounded so cliche, but how much of her privacy could I unlock in this public room?
We talked a little longer and I listened, sad that I was being unhooked from the infusion before she was even hooked up. I just wanted to be near her. Present for her in any way. The opposite of a partner who walks away from you for the sole reason that you can no longer walk without a cane.
As I was putting on my coat I stopped and I thought about the day, all the feelings and mixed emotions I had invested in these people. I turned before I walked out, struggling with my jacket still, and said, “Ya know, I think we’re a family now. For better, for worse.
Dr. A announced my 40th was coming. You guys have watched me grow older. We watch each other grow older. Month by month, just long enough to notice a difference in each other. Becca you are sad and it is killing me, but you let me see you that way for the first time ever. G is having a baby and we called it ours. M, when I started your “baby” was 7 years-old and now she is THIRTEEN!
Our lives are changing, one month at a time, at each infusion. We’re growing older together, sharing milestones and misfortunes. There may not be biological blood between us, but there's an awful lot of bloodletting between us on many levels. I think that’s what we’d consider a family.”
There was a collective, "Yep." It reminded me of the way my grandfather would dismiss me as he was trying to read the paper and I was rambling to him as a kid. That only made my theory feel more true. We are a family now.
I walked to my car and looked back and thought, "We're like a family or a weird version of the breakfast club." Either one is fine with me. As long as there are donuts.
I wandered lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.
Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.
The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed---and gazed---but little thought
What wealth the show to me had brought:
For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.
*PS-Hi Kev Kev!