I’m writing this in early July, a week before Tracie’s next appointment. I am telling this story in installments, over a space of time. I know what’s happened so far, but I don’t know what happens next.
This starts with a letter from a mutual friend on the East coast:
Tracie has been very sick for the past several months and at one point was diagnosed with a brain tumor. . . . she started to feel poorly (dizzy, fatigued, slow speech, forgetfulness, and more). For the past 6 months or so she has been shunted from one incompetent-sounding doctor to the next with still no proper diagnosis or plan of treatment! . . . . you could be a temporary advocate.
In my book, Climbing Back: A Family’s Journey through Brain Injury, I write “there should always be two people with a patient – one for company and love, and a second as the patient’s advocate.” Since then, readers have turned to me for advice. This is my first experience as an advocate for someone not in my family.
Tracie sends me her medical history. Google answers most of my questions –Tracie’s brain tumor is described as a “small meningioma” by her doctors. I learn from Google that 92% of meningiomas are benign. When I give Tracie this reassuring bit of information, she says that no one has told her this before.
April 11, 2016: I leave home before 6:30 to meet Tracie and her father at a parking lot. One minute late, I panic that I’ve missed them and they have gone on without me. They arrive ten minutes later, unconcerned. We’ve allowed plenty of time.
8:30, UNM Neurosciences Center, Albuquerque: Tracie is here to see a neurologist. When the doctor finally arrives, he’s a neurosurgeon. She has already seen a neurosurgeon; he will do another scan in six months, to see if the meningioma has grown. Now she needs to see a neurologist to figure out why she’s doing so poorly.
“You’ll need a referral to a neurologist,” the surgeon says.
“I’ve already waited months to come here,” Tracie says.
“I’m a neurosurgeon, not a neurologist. I can’t help you if you don’t need surgery. You need your doctor to refer you to a neurologist.”
Wanting to be unmedicated when she sees a neurologist. Tracie hasn’t taken the four ibuprofen that help her feel better. “I just want to know if I’m dying,” she says.
We’ve gotten up before dawn and come all the way to Albuquerque, and if I keep quiet, this trip will have been pointless. Tracie is close to tears. It is time for me to be her advocate.
I say, “You’re a doctor. Can you write the referral?”
It takes half an hour for a technician to enter the neurosurgeon’s referral into the computer system. Computer troubles.
“Now we can go down the hall and make the appointment with a neurologist,” I say.
“Oh no,” the technician says. “The referral will be at the bottom of a pile. They won’t see it for a few days. Call at the end of the week.”
I can see that Tracie is ready to give up and go home. It is my cue.
I say, “Can you print it out so we can hand carry it?”
She has to ask her supervisor.
Half an hour later, referral in hand, we are at the Neurology Department, just down the hall. I push for an appointment as soon as possible, even for this afternoon if there’s a cancellation. We've already come 60 miles and been here for hours. The receptionist bristles when I emphasize that Tracie doesn’t want a repeat of the previous mistake – being scheduled to see a neurosurgeon rather than a neurologist.
Tracie gets an appointment for May 16, five weeks later.
Three days later, worried that my assertiveness prompted the receptionist’s hostility, I email my concerns to Tracie. She responds:
I really do believe that she suddenly realized that I was the one that she had been talking to on the phone, and that she had messed up three times with me at that point. And that is why she suddenly became so rude and aggressive. What a way to react, when she had messed up so bad! Even when she left my paperwork sitting there for 10 weeks and did nothing with it, I was very kind and understanding towards her. . . .
I offered her much more kindness than she did us! And still, she was about to make me wait four more months! Two more months than what she originally told me the waiting time was currently. Again, I reiterate: "screw her."
Ah, that felt good. Very therapeutic.
That’s Tracie – kind and understanding, polite to those who mistreat her, and aware of how the system works against someone who is kind, understanding, and polite. She needs someone who’s not as vulnerable as she is, someone who will push back when pushing back is needed. She needs an advocate.
Next Installment: May 16, 2016, 11 a.m., UNM Neurosciences Center
Elise Rosenhaupt, author of the memoir Climbing Back, writes about her work as a patient's advocate and other experiences that cross her plate.
Subscribe to newsletter below.