Sunday Morning ~ Johannesburg

January 27, 2019

Hi Everyone,

I’m back in Africa and it feels good. Even after fifteen hours in the air from Atlanta. Even after having my flight cancelled from Bar Harbor and having to jump in the car and race to Boston, catching my flight there with seven minutes to spare. Even after being cramped into the middle seat, the trip always seems so worth it. I haven’t gotten to Malawi yet as the plane arrived too late yesterday in Johannesburg to make the Malawi connection, which meant a night to adjust to this time zone and hemisphere and get my blog written. All good so far. Now I’ll just have to deal with the internet or lack thereof. We landed here yesterday amid a show of lightening, thunder, and pouring rain. I caught the shuttle to my hotel and immediately went to the gym to run on a treadmill hoping to alleviate the bloating that goes along with having my feet dangling for a whole day. I watched the storm spectacle out the gym window on the fourth floor, a perfect location with the hazy city lights below it all.

The trip came together well, though the approval was only two weeks before and the departure date dependent on a talk I was doing at our library in Bar Harbor.  The original flight had me leaving Bar Harbor Thursday but I said I couldn’t because of this talk which had been planned, advertised, and set for Thursday night. The weather in Maine that day was dramatic: pouring rain that turned icy and 60 mph winds that made me ever so glad those trees had been taken down at my house. I was sure no one would venture out that night to hear my talk, but then I thought if only two people came that’d be fine with me; I’ll tell this story to anyone who will listen. But a lot of people came! I was stunned as I saw people enter dressed in full foul weather gear having walked through that tempest! Wow! That’s dedication! 

I was actually a little nervous when I started, something I haven’t felt in a long time. I knew most, if not all, of the people there, and was a little worried my message wouldn’t be engaging enough, given all that’s going on in our country right now. The women’s march we’d had on Saturday put forth so many critical issues, I was hoping this would live up to that kind of urgency. In the end it all melded together. Women’s plights around the world are not all that much different. And though I could only refer to three of them, Malawi, Congo, and the USA, there are lots of similarities.

At the end of our contracts in June we had a close of service physical exam. Any health issues resulting from our service are the responsibility of Peace Corps so they are identified before we leave. I’d been very healthy for the two years aside from the diarrheal episodes that are expected and transient. But at the exam in June, they found some blood in my urine that wasn’t associated with any infection. A month later it was still there and it was mildly concerning, cancer being the potential creepy monster, but a parasite being more likely. I took the treatment for the parasite, and was given a voucher to have it followed up when I got home. In September, it was still there. Damn! I was sure the treatment for Schistosomiasis would have taken care of it. So then I got a little more nervous, not because I thought I was going to die from bladder cancer, but because if that’s what it was, I’d probably need surgery. I got a referral for a urology consult. I waited a month for them to call me with an appointment but never heard from them. I followed up and they finally scheduled me to see the urologist three months later. Three months. I thought, ok, I guess they aren’t too worried that this might be cancer. I was distracted with training for the marathon anyway and went into denial. I felt fine. I felt great, in fact. George was worried about going away in case it was something serious, but I really wasn’t. That said, I did want cancer ruled out, again, not because I was worried about dying, but didn’t relish the thought of having an organ removed and a bag attached. Not how I saw myself. I always said I’d never do chemo but started wondering if that opinion would change if I were really faced with it.

My much anticipated consultation arrived on a snowy day in December and George and I trekked up to Bangor for the appointment. I’d received a lengthy questionnaire in the mail about my health history and had sent that back immediately, thinking someone would have actually read it by the time I arrived. After all, they’d had nine weeks to do that. I checked in at the reception desk and was asked to sign a black pad on the outside of the window, consenting to care. Just a blank black pad. I said, “Excuse me, what am I signing here?” The receptionist replied, “A consent to care.” as if I should have already known that. I asked if I could see what I was signing and she turned the computer screen toward me and it had a signature page with a sentence at the top I couldn’t read and for some reason I was afraid to ask for a closer look. She seemed annoyed I was asking. I asked, “Am I the only one who asks to see that?” She didn’t answer and I signed the black pad even though I didn’t want to. I thought, how strange this is. I am a health professional and I am afraid to question a practice here because I’m afraid to be labeled a problem patient before I even get seen. I let it go. Well, not really, but I went and sat down to read a TIME magazine.

I was called in and my vital signs were taken by a medical assistant who was looking at a computer screen while she asked me my name and date of birth and if I had any allergies. Then she told me the chair was going to rise up to get my weight. I was wearing boots and layers of weather-appropriate clothes, was holding my jacket with keys in the pocket, and was being weighed? With all that? I asked if I was supposed to wear all the same clothes when I came back for my follow up visit? She didn’t laugh. I’m not even sure she got my point. I thought of my students in Malawi and how I emphasized getting an accurate weight on patients. I thought of how appalled I was when midwives there didn’t take an accurate weight seriously. And then I thought, I waited three months for this.

Well, it turns out the specialist, who I waited three months to see, was in surgery that day and I would see her nurse practitioner, who was very nice. She asked me all the same questions I had answered on the questionnaire I’d filled out nine weeks before, and because she was so nice, I didn’t ask sarcastically if she’d read it. I kept thinking, “Three months for this.” Then she nicely told me she’d have to ask the doctor about my case and since she wasn’t in the office that day, she’d ask her the next day and get back to me. I said,”You are kidding me! I waited three months for this appointment and my own nurse practitioner at home could have done the same thing. She could have called the doctor and asked what the next step was!” This, of course, flustered her and she told me she’d call me right away and I’d be first on a cancellation list to get in to see the elusive specialist. I said, “I’ve already been on that list and I waited three months and I thought I was seeing her!” By the way the blood was still there and I asked about the possibility of cancer. She wasn’t sure, but told me if it was cancer, this particular doctor doesn’t care for cancer patients and I’d have to be referred to someone down the hall. This, I thought incredulously, is our great, expensive medical system? The system that is always worried about getting sued and blames patients for that? Medical providers need to be patients once in awhile just to experience this.

I left, steaming, and thought I would never go back to that office. I’d call my friends and get a decent referral, then I realized this was demonstrating incredible privilege. I know people who work in various specialties and could get some strings pulled and I was ashamed that I was actually thinking of using it. 

The urologist called me the next day, obviously having been briefed about my discontent, and was incredibly defensive and condescending. She told me there was no control over the amount of time I had to wait for the appointment (fair, maybe) and she was the most qualified person to care for me. I said that was fine, but she wasn’t caring for me was she? I hadn’t seen her. I had two approved visits and one was already spent and I was no further along in the process of diagnosing the problem. She softened a tad. She declared that because I’d been living overseas it was most likely a parasitic problem (which I’d told her I’d already treated), and I’d need a CT scan and a cystoscopy. I already figured that, standard, and could have done those months ago. I said I could get the CT scan done at my own hospital, and she said she wasn’t comfortable with that. I asked, “Why?” She said it was because she wanted to see very specific findings and was more comfortable with me having it done at her facility. She’d get me in within a few weeks. I said, “No. I will have it done in Bar Harbor. They are quite capable of doing the procedure and sending you the results.” She reluctantly agreed to that, with a “Now. Are you going to cooperate? Should we proceed with this?” Scolding tone. Bitch. 

Why is this so difficult? I may have gone in there with an attitude, but I can’t tolerate the idea that women don’t deserve respect or even consideration, that women should be grateful anyone is even giving her time for their very expensive care, that they should put up and shut up, that if they question anything that seems a bit off, well how dare they? 

It was another three months before I could get an appointment for the cystoscopy with this arrogant provider. I would have gone to someone else, but found out it would not have been covered under the previously approved agreement with Peace Corps. So much for choices. (I tell you, if I hear anyone criticize universal health care because of how long you have to wait to see a specialist, I will lose my shit.) I sucked it up and subjected myself to more attitude. I tried to be open about it and evaluated whether my own attitude was the problem. And I guess it is if I am to be  critical of expensive care that is demeaning and inappropriate. The problem is that most women don’t speak up. Those who do are a problem. It’s another form of suppression and control of a vulnerable population. If you are worried you have cancer, you are being silly since the great and powerful specialist (who hasn’t even seen you) doesn’t think so. And in some perverted way, I found that reassuring.

There was a cancellation and I got in this past week for the cystoscopy. Again I was asked to sign the black pad. This time I asked for a printed copy of what I was signing. It was a two page document with tiny writing. I thought of the paper in Malawi that women are asked to sign before surgery that says, “I give permission for the doctor to do an operation on my body.” and how shocking I thought that was. How it gives permission for about anything and is a farce. And I looked at the consent form in front of me that most people sign and never see, that requires at least a secondary school education or higher to understand, and think, there is no difference here.

A very sweet medical assistant explained the procedure to me very thoroughly. She then handed me a consent form to sign saying the procedure had been explained to me. There was a blank for the name of the person explaining the procedure. I started to fill in her name. She said, “No, the doctor will put her name there.” I said, “But you are the one who explained the procedure to me.” and continued to sign my name. Well. The doctor came in, not pleased with me, took the form, crossed out the medical assistant’s name and asked me to initial where she crossed it out. She looked at me, very 1984ish, and said, “I am the one explaining the procedure.” I said, “Fine.” and then she continued on without explaining anything. Whoa. That was creepy. She filled in I don’t know what on the computer screen, put on non-sterile gloves, picked up the scope and started to proceed. I said, “Wait, isn’t that supposed to be sterile?” And with exasperation looked at me and said, “Look, you know, I don’t HAVE to do this.” I said, “I know you don’t, but I need it done and I have the right to ask.” I felt like asking her infection rate, but honestly, just wanted to get it done and out of there and was tired of being treated like a fly to be swatted. This is such crap. I thought of all the times patients of mine related stories like this one. I always told them to write a letter. Providers get away with this kind of behavior because they don’t get called on it. But few women do write. They don’t want to anger a provider they may depend on for care, so tolerate being treated badly. And, yes, it does seem futile, but still, if I’m going to encourage women to speak up, then I have to do the same. But it is intimidating. I am intimidated. And I was not in pain and I know what my rights are, and still, I felt bullied into accepting to be treated in a disrespectful way. Not ok. I’m starting by writing here, but it will go to some administrator as soon as I can find one. I’ll be curious to see if I get a satisfaction survey from that office.

I asked for a copy of the consent form I signed. They gave it to me, but warily. I can feel them on the defensive. I wondered how bullied the staff there feels? If she treats her patients this way, how does she treat her employees? 

Ok, my rant is done. I’m off to catch my flight to Malawi.

Love to all,

Linda