Part One: The Doctor is More Often to Be Feared than the Disease
It began with something as simple as a minor eye infection.
Having lived weeks in a construction zone, during time which my little house underwent her facelift, I was exposed to more than my share of sawdust, carpet fibers, mildew spores, hardwood shavings and granite dust. The frosting on the cake turned out to be a major chimney rebuild.
Mortar and decades old ash found their way inside the house despite the heavy preventative draping. My eyes dried out, began to itch relentlessly, then developed pink rims.
Nothing I tried worked. It became time to seek professional help.
Now, you might think that finding a new Primary Care Physician, one who is both compassionate and skilled, in a city as large as Portland, would be simple. After all, there are hundreds listed in the directory of physicians. Still, you would be wrong. As it turns out, the limitations imposed by Medicare and one’s supplementary insurance winnow your options down considerably.
So, while I was still feeling some gratitude for the actual having of health insurance, I turned to the Internet and began reading review after review of doctors in my “network”; doctors who were open to accepting new patients.
This finally led me to what seemed like a possible fit: a female Clinic Director of a small, busy, satellite of the Providence universe, located in NE, not far from my home. Described by patients as “knowledgeable”, “accessible”, “no nonsense” and “able to triage easily”, she had also been selected one of Portland Magazine’s Doctors of the Year two years running. I picked up the phone and made my call.
She didn’t have an opening.
‘Who does?’ was the attitude of the clinic receptionist on the other end of the line. “However,” she offered, in consolation, “Dr. X, who reports directly to her, has a 1:15”.
I accepted. After all, a minor eye infection should be easy for any doctor, right?
I arrived fifteen minutes early, as requested, to fill out intake paperwork. Turned out that their computer system wasn’t compatible with Salem Clinic so my complete medical history wouldn’t portage through. What they did have was several years old. Would I please update and verify a few things?
Of course, happy to oblige. No big deal.
Or, rather it shouldn’t have been.
Eventually, I was ushered into the little exam room. You know the type: ubiquitous in their clinical detachment. A stainless steel sink, a few drawers and cupboards filled with nothing too important, paper covered exam table, a stool for the doctor, an extra chair for the patient to sit in while waiting, those requisite domestic violence and sexually transmitted disease posters on the wall.
This one had an added attraction, though. A jaunty little feature meant to educate and entertain us: a looped slide show featuring each employee of the clinic, complete with professional headshots. No information about the actual person, mind you. No personal quote or statement of qualifications, nothing so revealing as that–just name and title, thank you very much. Here we are, ready to serve.
As I waited, I watched the faces and names float by. A nurse appeared to take my blood pressure, pulse and temperature. She was professional, competent and lacking in personality. I actually had to ask her to tell me my blood pressure, which was, as usual, low. She left the room. I found her smiling face on the next go round of the slide show; looking much happier in her digital incarnation than she seemed in the flesh.
I waited for Dr. X to appear. Three slideshow cycles went by. It seemed she hadn’t yet been uploaded into the program. Oh, but look! There’s Clinic Director Woman I was hoping to see. Nice enough smile. Oh, and there she is again, right behind Sports Medicine Man. Zoom goes the program, faces scroll by, and yep, there she is one more time, lest we forget.
The door opens and the mystery of image lacking Dr. X is solved.
She is youngish, dark haired, slender, seems to possess an excess of nervous energy, brisk and abrupt. She wears scholarly black glasses, with stethoscope around her neck, so there will be no doubt as to who is the doctor in here.
She wastes no time on pleasantries. No getting to know you, “I’m just building rapport”, bullshit. Dr. X has a job to do and she is going to do it efficiently.
“You are here today for a possible eye infection”, she states, rather than asks. She looks at her chart. “You also have Cancer and Osteoarthritis.”
Whoa. I didn’t put that on my intake forms. I gently interrupt her.
“No. Uh, I’m not sure why it says that. I did have a breast tumor but it was successfully treated by acupuncture several years ago. My mother died a couple of years ago from Cancer, oddly enough, but no, I do not have it myself. And yes, I guess I do still have Osteoarthritis but I haven’t thought too much about it lately.”
She looks displeased. The interruption was not to her liking.
She carries on. “I see you are also taking Lamotrigine for a seizure disorder, as well as Wellbutrin and Clonazepam?” This time there is the faintest hint of a question in her tone. She does not meet my eyes.
“Again, incorrect.” I go for a good-natured, good humored tone of voice. “I haven’t taken any of those medications for nearly two years. I did update that on my intake form.”
“Our computer system is not compatible with Salem.” she says, almost as though I haven’t spoken. “I don’t have your complete medical history, ”just these few facts.
“Which seem to be out of date”, I add kindly, smiling. It’s not her fault. I give her the benefit of the doubt.
She studies me for a moment.
“Are you currently seeing a Neurologist?” she asks.
This seems to come from left field. I am slightly taken aback.
“No.” I answer, curiously. “Why?”
“The Lamotrigine. It is prescribed for seizures. It says here that you have a seizure disorder.”
Ah, now I understand. I can clear this up easily.
I respond, “The Lamotrigine wasn’t prescribed for seizures, or by a Neurologist. It was prescribed for a mood disorder, by a Psychiatrist., as were the other drugs. I was depressed and anxious, going through a very bad time due to being a Whistle Blower at the State, then harassed for it.” I am talking a bit too fast. “But I haven’t needed any of those medications for a couple of years. Not since I took early retirement. Clearly your records haven’t been updated.”
I slow down, continue amiably, “As for a Neurologist, well, I’m seen enough of them for a lifetime.” I laugh lightly, trying to share the joke. “I haven’t needed to see a Neurologist for decades. We developed protocols for my seizure disorder which work and I follow them.”
I give what I hope is an air of finality to my voice.
I’m hoping we will now move onto the minor eye infection, which is, after all, the reason I came into this office today. My eye is still itching and the light kind of bothers me.
“When was your last gran mal?” she asks, instead.
“A long time ago”, I say, uncertainly, “months. I don’t remember exactly. The closest thing to something like that was in early July. I was outside on an abnormally hot day, 100 degrees, at a Folk Festival in Canada. I overheated because my brain thermostat no longer works since the head injury which created the seizure disorder.” This last seizure was over three months ago, which is a crucial fact, and I know it.
She, however, does not ask a single clarifying question. She does not follow up with a line of enquiry about the type of seizures I experience, the frequency, or whether or not I lose consciousness. She does not ask about my damned eye infection, for that matter. What she does do, is stand abruptly up, excuse herself, and leave, while I sit there wondering what in the hell is going on.
A few minutes pass. The photo circus has been turned off, I notice distractedly.
I listen to muffled sounds outside in the hallway. Voices. Footsteps. More voices; a baby crying somewhere.
I look at the time.
1:30.
I’ve only been in this room fifteen minutes but it feels like so much longer. I need to leave. I start gathering my things.
Dr. X returns. She sits down. She zeroes in on me. “Do you drive?” she demands.
I now know where this is headed.
“Yes, I do.” I respond. I add, firmly, “I have never had a seizure while driving, not once in forty years.”
“Just because you never have doesn’t mean you never will.” She has turned into a Judge. “I want you to know that I am going to report you to the DMV. I have to. It’s a mandatory report.”
“Look, I was the Director of the Abuse Prevention and Training Unit for the State of Oregon for nearly 15 years,“ I begin, no longer the kindly, older woman with a possible eye infection. I become the Director. “I taught mandatory reporting, among other things, for years. I know the law quite well. You do not have to file a report because the incident was more than three months ago.” I am correcting her.
She becomes argumentative. “It says, ‘three months or more’.” She puts special emphasis on the ‘or more’. “I conferred with our Clinic Director. She says that we must report.”
“No.” I correct her, again. I stare straight into her eyes. “You are ‘choosing’ to report. You are making a choice. That is an entirely different thing. It is also a waste of time for the DMV, you realize. Not one other doctor in my 40 years of driving has ever felt it necessary to make a report to the DMV.”
She doesn’t listen. Or rather, she chooses not to listen. She instead stares straight back at me, defiantly. “As for your possible eye infection, I have nothing in my arsenal to treat you with. It doesn’t present as conjunctivitis, which I could treat. So I am referring you to an Ophthalmologist, who should be better able to take care of your needs.”
I am stunned speechless by her incompetence and ignorance. I also recognize in that moment of standoff that she will not budge. In her mind, Doctors are Gods and one does not question their wisdom. I don’t even know what to say to her. I just look at her, gawping in frustration and wonderment, as she hastily scribbles information on a small piece of paper.
“Here is the referral. His office is about two miles away. They will see you in one hour.” And she is finished with me. She stands up, exits the room, no looking back.
I sit for a full two minutes, so angry that I cannot move. My heart is pumping rapidly. My breathing has become shallow. I have entered “fight or flight”.
I flee.
Part Two: It’s Not Right What They Can Do To You
It is four days later. I have convinced myself that it was all just a bad experience with an inexperienced doctor who has since forgotten me. My anxiety has abated and I am living my life. The holiday season is upon us.
The mail comes.
There, amongst the early November bills, is a thin, white envelope with a Department of Motor Vehicles return address. I take a deep breath. I sit down. I open the envelope.
One page; one short, bureaucratic page…
“Due to a report received from a medical provider”, “designated a high risk driver”, “license revoked”. The words leap out at me.
“Effective immediately.” Date given? The very next day.
What? Tomorrow? I can’t believe what I’ve just read. My license is being revoked the very next fucking day?! I am appalled.
Involuntarily, I begin to weep.
I am stunned at how easily my life has been turned upside down by just one ignorant, overworked physician who didn’t even try to deal with me on a human level.
“This is what they can do to you.” I think, as the repercussions begin to flood over me, loss of independence at the top of the list. “This is what they can do to you.”
Part Three: Fighting Back For Justice
I pick up the phone and call the DMV.
A chirpy, young automaton answers. I ask what I can do about this letter. What can I do to get this wrongly filed report corrected to have my license re-instated?
“You can file for an appeal hearing,” she tells me, “Which will take three or four months.” She follow up with, “Or, you can get a physician to fill out a medical form we can send you, have him or her fax it back to us, and wait for our team to assess it.”
“How long does that usually take?” I ask.
“Anywhere from six to ten weeks, depending on the information we receive and what they find.” She adds, “And they may ask you to take a driver’s test again. Or, they could require you to meet with a physician of our choosing.”
I take a deep breath before replying. I’m no fool.
“Will you please send me the forms? Can you email them to me today since my license is set to be revoked tomorrow?”
She continues in her chirpy, trained, customer service voice, “I’m so sorry but it’s too late today to get it out (I look at the clock, it is 3:30pm), and, as you know, tomorrow is a federal holiday. We will be closed. I can, however, mail it out to you on Monday if you still want me to.”
Van Morrison’s song lyrics dance through my mind, ‘You don’t pull no punches but you don’t push the river’. “Yes, “ I say, politely, “please do send the paperwork to me Monday. Thank you.”
“You might ask your doctor to fax the form back to us rather then mailing it.” she says, sounding almost like a real person for a moment. “It usually helps things go faster.”
the process explained
Part Four: Good Citizen Driven to Criminal Behavior
Of course I drive my car. Very carefully, on high alert at all times, but I drive.
For the next five weeks, while I seek and seek for a compassionate and progressive Neurologist (no luck), while I shop for groceries to prepare a Thanksgiving meal for my family (much luck), while I commute back to Salem for a series of unpleasant dental procedures (bad luck), and while I take myself to the beach for a two night writing retreat (excellent luck), I drive my Prius mindfully, always praying to my Spirit Guides to keep me safe, reminding them, and myself, that this is an undeserved situation I have been forced into, beseeching them to keep me safe while I sort it all out.
I also read the relevant laws carefully. Driving with a revoked license can lead to large fines as well as jail time, if one is caught.
I re-read the letter from the DMV.
It tells me to surrender my license immediately to the nearest DMV office. It’s already been over a month and I hadn’t noticed that bit before. Oooops.
I read the law about this. Apparently, it is a misdemeanor, punishable by fine and possible jail time, to refuse to forfeit one’s revoked license. Well, damn. My license not only governs my driving, but it also serves as my primary legal photo I.D. Just this morning, in fact, I was asked for it at the Post Office when I went to receive a parcel.
It seems I have now become some kind of criminal. Not only that, but I am also living as a kind of fugitive, fleeing from place to place in my own car, praying not to be stopped by a member of law enforcement or rammed by some clueless driver. Dr. X’s ignorance has too wide a reach.
I cut back on the driving, genuinely spooked, sticking to back streets when I must. The thought of paying for cabs on my fixed income causes agitation, so I leave them alone. I walk places. I remember the bus. My husband begins doing all of the driving when we are together.
Still, I refuse to surrender my license because I know this is a bogus situation. I intend to get that revocation reversed as soon as possible. I believe that I have been unjustly treated so refuse to comply with an unjust law.
I contact my Psychiatrist, who I haven’t seen in nearly two years. I explain what has happened to me and ask if she can help. She is a good soul and hates systemic bullshit. She says yes. She gives me her first available slot. It is the holiday season, though, so that first available appointment is still two weeks away.
I spend these days thinking about how easy it is for one individual, one mediocre doctor, to mess up someone’s life. I think about people I have known who have been institutionalized against their will. I think about elderly people who are moved into care facilities against their will. I think about how mobility and independence are so closely linked. I think about the lives lost by incompetent medical providers. I think about disability, invisibility, accessibility, accommodation.
I reflect once again on how fortunate I have been all of these years since my traumatic head injury, coma, two brain surgeries, time in special education, the re-learning of how to walk and talk, and most of all, how fortunate I have been to have had a professional life with the freedoms I have experienced, which have allowed me to grow and develop.
I then write an articulate, truthful, non-emotional review of Dr. X and my experience in that clinic and send it in to Providence, attached to their pro-forma “customer satisfaction survey”. This gives me a meager amount of customer satisfaction.
The two weeks pass. My psychiatrist is outraged on my behalf, also glad to see that I look happy and well. I give her much of the credit for that. She literally saved my life.
She fills out the form and faxes it in for me. Wishes me success. Reminds me that they may prefer a Neurologist’s statement. Hugs me goodbye.
I needed that hug so I thank her once again as I pull her office door closed behind me.
I drive myself home from the appointment. I read her remarks on the form the DMV provided and I take heart.
“The event reported never happened.” She wrote, in her elegant cursive. “The patient never lost consciousness, did not experience a loss of control. Furthermore, the physician who reported this seizure did not follow up with patient to discover that the seizure disorder is intermittent, well managed, and not the result of Epilepsy, but is the result of a traumatic head injury incurred over 40 years ago. Patient has identifiable warning auras that give her time to take care of her needs. Driving is not a risk for patient. The Lamotrigine, which was wrongly attributed to seizure control, was prescribed for a Mood Disorder and severe PTSD.”
I am elated by her words, and so, so grateful.
I carefully compose my own letter to the DMV, to include as an attachment to my case. I craft it as an investigative report. I outline my visit to the clinic. I describe the Doctor’s affect and lack of professionalism. I cite her confirmation bias regarding the term “seizure disorder” and what it means to her. I state that she did not ask follow up nor clarifying questions about my particular condition but instead formed her judgement based on incomplete medical history and a cursory office visit.
I stress that she did not listen to me when I attempted to provide her with information that would have helped her form a more accurate conclusion. I explain about the medications, their original intention, and more importantly, their cessation over a year and a half ago. I share that I have reported the physician for her lack of professionalism and for her lack of medical ethics. I close by asking the DMV to re-instate my driving privileges immediately due to the significant negative impact on my life, experienced unfairly already for nearly two months. I fax it to the office and wait to hear back from them.
Oh, and I continue my life as a “situational criminal” while I wait.
Part Five: Nothing About Me Without Me is Oh, So True
A week goes by and I hear nothing.
I drive myself to another dental appointment in Salem, thinking, “When this calendar year and this treatment plan are finished, I need to find a good dentist in Portland.” I shudder at the thought, realizing how many things can go wrong due to one bad provider.
Another day passes and still, I hear nothing about my case. I can’t take it so I call the DMV and become the squeaky wheel.
A different chirpy young woman answers the phone. I explain that I am calling to follow up on my situation, a wrongful revocation of license. I add that my doctor faxed in paperwork, followed by an attachment faxed in by me, both more than a week ago. I stress that I am seeking an immediate re-instatement of my driving privileges. I don’t have a clue if such a thing is even possible.
She is calm and unruffled. “Let me put you on hold, Ms. McCarthy. I’ll see what I can find out.” She disappears into the void.
I wait. I think about how I have spent more than thirty years teaching people how to advocate for themselves, how hard I’ve worked to fight unjust laws on behalf of others, how committed I still am to the empowerment of people so they can demand a more just society.
I marvel at how ironic it is that I now am being forced to do exactly those things for myself. If you let them victimize you, you will remain a victim. If you let them label you, you are doomed.
She comes back on the phone. “You’re all set to go, “ she says, cheerfully. “Your driving privileges have been re-instated. Conditionally. In five months you will receive some paperwork for your doctor to complete, verifying that you remain a risk free driver. Until then, drive safely. Is there anything else I can do for you?”
“Yeah,” I start to say, “You can change this ridiculous Napoleonic system you work for. Change it so that every person accused will have the right to present their side of a story, their facts, before automatically revoking their license.
You might also work to make sure that every person is respected equally, regardless of profession or ability or income or race or gender or sexual orientation. And while you’re at it, would you please organize your friends, neighbors and family members to fight for the same rights for everyone in our society at large?”
But I don’t.
Instead, I reply, “No, thank you. I did it for myself.
Nothing about me, without me.”
And I hang up.
I am so glad you advocated for yourself. You have probably saved other individuals who do not know how to do that, by complaining about that doctor’s lack of professionalism.
Thank you for being a light and for continuing the fight!