The Kindness of Strangers – And Familiars

June 2, 2006 at 2:58 pm (Uncategorized)

Greetings from Philadelphia. The skies are leaden and the air humid in this City of Brotherly Love. With weather like this, no wonder people heeded the cry to “Go West, Young Man!” Montana feels very far away. And extremely dry. And extremely sweat-free. Leaving aside my gripes about the climate, my experiences here so far have prompted me to turn my thoughts to the nature of the bonds – brotherly and otherwise – that connect us.

Andrew and I arrived safe and sound. We met my Mom in the airport, and we all somehow survived the drive down I-95 in my sleep-deprived fugue state. (A note to all you urban East Coasters – You’re lunatics behind the wheel. Are you opposed to staying in one lane for more than 5 inches? And slow down! ) But I was happy even as I clenched the wheel with sweaty palms because despite my earlier neuroses, Andrew had been a champion traveler. He was bubbly and excited to fly, and, more importantly, he sat still. Our seat mate, a single 50-something man who flashed (but then contained) a look of dread when he first sat down next to us, told me upon landing, “You have the most amazing child.” “I know,” I replied. No. I didn’t say that – really. I only thought it, but I did say thank you. I do have the most amazing child. Of course, today we’re paying for all his sky-high good behavior with the release of his pent-up energy in a confined hotel room. I didn’t know it was possible to jump so high on a bed.

I truly am grateful that Andrew is here with me, though, even when he is damaging the springs of someone else’s bed. Whatever I lose in sleep, I gain ten-fold in his sweet face reminding of what is important. When I feel my blood pressure rising and my heart rate skittering, he centers me. He helps me not sweat the small stuff (or too much of the big either) and focus on the essentials – like kissing Percy, the hard, plastic train from the Thomas the Tank Engine series, and reading Richard Scarry for the umpteenth time.

Andrew could not be with me if my Mom had not given up eight days of her life on her ranch to squat in a hotel room with her mood-swinging daughter and very busy grandson. Today when I went to the doctor, I left him without a worry with my mother. Her leg is in a cumbersome boot for an orthopedic injury, but that hasn’t slowed her down. She’s still running after my rug rat and keeping him happy and occupied. There is also something innately calming about mothers. The same urge I felt when I was nine and puked in school and knew I just needed my mommy hasn’t fully gone away. I can come back from the doctor, who told me that I shouldn’t be “shocked” if the cardiologist recommends implanting a defibrillator, and one hug makes everything feel more manageable – not perfect, mind you, but not cataclysmic either.

I miss Jay, of course, but I’m able to talk to him as often as I need to. To a certain extent, I think today – like many other aspects of watching someone you love with a chronic illness – was harder on him than it was for me because he feels helpless. Like the rest of the male population, he wants to “do something.” Whenever we go to doctors’ appointments together, he’s able to ask questions, hold my hand in the office when it gets frightening, enfold me in his arms after, and then, most importantly, drive me to a Starbucks for a latte and the most fattening pastry on the shelf. Nevertheless, last night, we worked on our list of questions together so that I felt prepared for the meeting with the doctor. I’ve given up on having actual control of my life and now I just aim for the illusion of it. Having that folded list in my hand reminded me that I’m not merely a passive player in the game of chronic sickness and that I’m not contesting it alone.

It’s not just friends and family who support me, though. Whenever I travel long distances for medical care, I am amazed at how kind perfect strangers can be – and how these “random acts of kindness” (to resort to clichés) are staggering in their impact. For instance, Miguel, the guy at the Enterprise car rental counter, took pity on me because of the amount of luggage we had and gave us a bigger car at no extra charge. Then he spent half an hour in the damp Philly air loading and then unloading and reloading our suitcases because even the bigger car could barely accommodate all the crap I lugged across the country. “Big deal,” you could sneer, but it was a big deal. I was thoroughly exhausted and overwhelmed by the time we made it to that rental counter. Anxiety breeds and feeds on itself, so I was ready to run back to the airport and beg to be taken someplace where the humidity is less than 1000 percent and doctors are outlawed. After the car was all nicely loaded, though, my attitude had so improved that I thought to myself, “I can do this.”

In another example of the kindness of strangers, my Helena friend, Martha, (an entire support system in her own right) put me in touch with her brother, who I have never met and who has an apartment in town that he just finished remodeling and won’t be using for a week. If I had a beautifully restored townhouse, I would never let a toddler inside for five minutes, much less hand over a key to his parents who I’ve never seen. But that’s just what Martha’s brother Ben is doing. Tomorrow we’re going to move into the apartment and save about a thousand dollars on hotel bills. And he didn’t stop there. He told me exactly where to go to get the best bowl of phô, the best Vietnamese shrimp roll, and the best Asian groceries to take home with me. I promise not to let Andrew jump on his beds.

I’m sure by now, my friends and family at home (who I have been too tired to call, despite the fact that I promised I would) are saying, “Enough of this crap! What did the doctor say? Are they amputating your heart or what?” I guess my point in writing in this roundabout way isn’t simply that I am too tired to connect my thoughts, or that I’m too distracted to proofread this because I somehow left the cord to my borrowed laptop in Montana instead of bringing it with the machine (though I do have a small library’s worth of books for Andrew) so I am squatting on the hotel computer. Rather my point is that I’ve realized that to a certain extent, it doesn’t matter what the doctor said because with this wave of goodness around me and under me (and in the case of Andrew, digging its knees into my stomach), I can handle it. I think. Don’t hold me to this if I get bad news later in the week.

Anyway, what the doctor said was…wait until you see the cardiologist on Thursday. But she was able to explain to me why we needed to have the cardiologist’s assessment in hand before plotting my treatment course. Here are the various options: 1.) I begin another prednisone taper, but wear a holter monitor at first to make sure no significant arrhythmias crop up; 2.) I begin another prednisone taper but also begin a second drug to target the sarcoidosis in my heart; 3.) I have a heart biopsy because there’s not enough information to assess what the hell is going on in my heart; or 4.) I have a defibrillator implanted. I’m hoping for door number one.

My doctor in Philly is extremely good at presenting what is known about my specific manifestation of this disease, what cannot be known, and what we can try to figure out. She’s not a touchy-feely chummy doctor, but she’s kind and thorough and remembers my case history better than I do. I don’t think I can ask for much more in a physician. Except for her to move to Montana and devote herself entirely to my care. I proposed this, but for some reason, she didn’t sign right up. I told her it was a heck of a lot cooler and dryer out in my part of the world, but that didn’t sway her. Maybe she’s happy here, in this city of brotherly love.

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