Category Archives: First Person

Bureaucracy Blues

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A lasting impact of my brain injury in 2016 is that I am terrible at filling in forms. On line, on paper, any form, any time. I can’t do it. Unfortunately, disability often means one’s life is full of forms, many more forms than most people can imagine. Too often, they are controlled by unaccountable governmental bureaucracies. They are not supposed to be unaccountable, but they are.

Take today’s article in The Tyee about getting mobility devices like wheelchairs repaired in BC. I am shocked that wheelchair users can wait months to get a simple flat tire repaired. That wait can leave them housebound and even bedbound. Who knew how incredibly difficult it is to get mobility devices fixed in BC? I didn’t. And as I continue to read, I am not shocked at all.

Disabled people and our priorities get put last all the time. Currently I am in the midst of a bureaucratic bungle, the effect of which is that I can’t get my prescriptions covered even while I pay for private insurance. It’s infuriating. It will likely take another six weeks to solve (if I’m lucky) and I’ve already been at it for over two months. And I am lucky;  I can afford to pay while this process grinds along. Many disabled folks cannot afford any surprises. Many cannot manage even without surprises because their support is too low.

Disabled people are expected to jump through a lot of hoops, even if we can’t. We spend hours navigating dysfunctional systems to get what we need. It’s always our job not only to explain but to prove to agencies and government workers that we need their help and then to fix all the problems created by how they provide that help.

I don’t know if you know a lot of disabled people but we don’t have a lot of energy all the time, and when we do, we’d rather not waste it explaining what the people who are supposed to help us are doing wrong and how they are making our lives more difficult. There’s no “normal” in the world of disability. Forms don’t work for us. We need individualized support and care.

Disabled people talk about how many “spoons” we have (sort of like units of energy) and I just used all of my spoons today on something that should have been seamless and simple. And the folks in The Tyee article describing the problems getting their wheelchairs fixed should not have to use all of their spoons doing that. They should be able to call someone to fix their chairs and other mobility devices with an expectation that repairs will be done in a timely manner. No one should be bedbound by a simple flat tire.

Poor Communication in Health Care

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This is a story of poor communication in health care. If TLDR; go to the heading TLDR below.

I have been waiting to see if I’m eligible for a clinical trial. My cardiologist referred me to another doctor in another city. He’s supposed to be the best. I was told it might take a year to get a call from his clinic. They called after only two or three months. Of course, that was good news.

I spoke to the surgeon who is supposed to be the best and was told the outlines of the process by him. I needed three tests. They would do them at their hospital, have a meeting and decide if I’m a good candidate. At the time, my cardiologist who referred me said there were two possibilities that I would be assessed for. This surgeon said there would only be one possible procedure. The other was not funded. Disappointing, but still, there was a possibility that something besides yet another open heart surgery could fix me. I knew I’d already had two of the tests fairly recently, but he said they had to do the three tests within a certain time frame of the procedure or they would have to be redone. I remember this answer because I forgot to ask what that timeframe was, which meant I had no idea when to expect this procedure might be done. Did I want to move forward? Yes. He said in a few weeks, I’d hear from a nurse in the clinic.

I now realize he probably hadn’t checked the dates on my last tests. In hindsight, I see how he might not have known if I needed three tests or not.

A few weeks passed and someone called and explained the process in more detail and went through the tests. Again, the expectation was expressed that there would be three. There are complicating factors. I would get another call explaining how to handle my drugs before the procedure. I felt confident I knew the plan. And again, she explained a meeting would be held after all of this to determine my eligibility.

I had the first test about three weeks ago. I was waiting for a call to tell me when the next test would be.

I got a call from the clinic last Friday. I had been carrying my phone around with me for weeks. I was in the bathroom, missed it, and called the number he left back right away. It’s a number that goes nowhere. Press 1 for this, 2 for that. 2 goes back to 1. Neither of those things applied, so I hit 1, left a message and hoped I hear from him again. Then I remembered I had the number of the nurse from my first test. I called her to ask if she knew how I could reach this person. He works in the office beside her, she said, but he was on the phone. She would make sure he knew I called back.

On Monday, he called me back. This is where everything falls apart.

He told me I am having a procedure that I have never heard of. “We’re booking you for a [acronyms].” And I said, “What is that? I’ve never heard of it.” And he said surely someone has talked to me about it, and I said no. And he said, “Didn’t you talk to the nurse in May?” And I said yes, but she only talked to me about the clinical trial. And he said, “You’re not eligible for the clinical trial. They had the meeting two weeks ago.” They did? News to me. I said, “But I haven’t had the other two tests yet.” I was still living in the last plan. And he said I already had them. I refrain from saying I KNOW, and instead said I was told I would have to have them again because they had to be done within a certain time frame. I said I was expecting his call to be to tell me when the next test was. He expressed frustration. “She must have gone over this with you.” No. She did not. I asked if my regular team knew about this. He said they would not be doing it, implying that they did not need to know. But, these are my people who have kept me alive all this time. Did they weigh in? My regular heart surgeon was never convinced the solution being suggested through the clinical trial would be robust enough. How did he feel about this one, I wondered to myself. Did he even know? He said it’s not up to them, but he did send them notes. I asked who he sent notes to. He had not sent one to one important member of my team. I ask him to do so and he said, “Who is that?” There was a tone there.

This was a bad call. To say the least.

Instead of realizing I’m ten steps behind, rolling it back a bit and saying, “Oh, ok. Let’s start at the beginning,” he challenged me and told me I’m mistaken. I was not mistaken. I am not mistaken. I take excellent notes. Then he said, “Well, do you want it or not?” And I said to myself, “How would I know?” I told him I want it.

But do I? I don’t understand it, but someone thinks it’s something I need, so I’m not going to kibosh it.

After having a good cry, I screwed my courage up and called my cardiologist’s office because he always says I can talk to him any time. I can’t see him for well over a month, and I had no idea what the timeframe is on this procedure. But I had already booked an appointment with my favourite doctor for when she returns from maternity leave. It’s in two weeks. I’m so glad. Her replacement was ineffective. She is the one who always made sure everyone talked to each other in my complex case and that I understood what was happening. Meanwhile, the cardiologist’s office administrator said that the cardiologist did mention this procedure being recommended in his referral note to the other clinic. This does not mean he told me about it. I do not receive these notes. This was information between doctors. She suggested I call the other clinic back or ask to speak to the surgeon. But I don’t know who the surgeon will be. And I’m pretty sure the man on the phone will not be at all happy about my call. I said I can’t do that. For one thing, his number doesn’t work. She, kindly, said she would do it and ask him to call me back. I dread this call.

Meanwhile. I have jotted down the acronym and Dr. Google it. I’m playing catch up. The procedure is so new that there are no real figures about its success rate. Right now, doing it looks to have about the same outcome as not doing it. So I’m a little stymied. Frankly, my ad hoc medical education cannot keep up with my situation and the medical journal I’m trying to read is very complicated.

Then I had to figure out what I want to ask this man when and if he called back. Mostly I want to know what happens if it all goes south. Do I die on the table? Do they convert to an open heart procedure? When he called, he was unable to answer that. He said the surgeon will go over all of that when they get me to sign consent. I ask who the surgeon will be. He said it will likely be A or B. B is the surgeon I first talked to about the clinical trial months ago. I ask when I will get to speak to the surgeon. He doesn’t answer. I suspect that might be when I’m on the gurney in my hospital gown waiting to go in because that’s when consent usually happens. It’s not really the best time to ask fundamental questions. By that time, it should be a formality. Then I had the presence of mind to ask if this would happen before the end of the year and he said maybe the end of December or start of January. So I knew I would be able to see my favourite doctor first, and I could get answers then.

TLDR

Poor communication in medicine causes additional stress. It also kills people.

A few weeks ago, I was listening to CBC’s show “White Coat Black Art” with Dr. Brian Goldman and he was talking to the husband of a cancer patient who had died. He felt her care had been lacking and lodged a formal complaint in BC (where I live). Dr. Goldman said it was the only time in his knowledge that a complaint like this resulted in a formal apology and a change in procedures. The guts of the complaint was that his wife’s doctors failed to communicate with each other and see the whole complex picture of her illness. This contributed to her death.

This is what was happening to me. I can’t corral all of these specialists. My favourite doctor, the one returning from Maternity Leave, has always been the one who made sure everyone talks to each other. Every complex patient needs someone like this.

Vanishing Act

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Salmon in Morrison Creek, dorsal fins visible at left edge of creek

Salmon in Morrison Creek

Watching the salmon run in Morrison Creek last week, I took a short video, wondering if it would come close to capturing the salmon’s struggle as it swam against a current rushed along by a deluge of record-setting rain. A master of camouflage, the salmon’s survival depends on being hard to see. Its shimmering silvery scales become one with the light reflected off the water, and its shades of brown and grey blend in with the rock, gravel, and sand bed of the creek itself. If the water is shallow enough, the salmon’s presence is betrayed most often by its dorsal fin slicing through the surface.

The odds are against the salmon at the best of times, but a wild creek overflowing its banks poses additional hazards. The sheer force of the high water volume could push the salmon back towards the ocean. Or, when the water inevitably recedes, it might strand them in places where water doesn’t usually flow. They will be trapped between salmonberry and Oregon grape, big leaf maple trunks and rocks, an easy meal for bears, coyotes, corvids and other predators.

Metaphors abound.

But I’m trying not to anthropomorphize the salmon’s biological necessity. I’m trying not to attach my human emotion and my human experience to them. I’m trying to appreciate this wild moment, to be with them in nature, not to interpret them. Too much thinking can spoil an experience.

Yet, I cannot help but impose narrative. It’s my job as a writer to do so. That one is resting under a bridge, I tell myself, tired out by its repeated efforts to hurl itself over the many low rock waterfalls. Soon, it will have gathered its strength again and push forward. A few feet away, two salmon are finding their way together upstream when they slide into a channel that pushes them backwards over a ten inch drop they had managed to hurdle only moments before. I imagine their disappointment. I imagine them consoling each other. These are chum salmon, and I’ve taken the word “chum” too much to heart. I cheer on another hearty salmon at least sixty centimetres long as it surges over another rock waterfall with seeming ease. I cheer out loud. I can’t help myself. So much for being detached.

When I get home and look at the video, I am amazed. The salmon, which I knew would be hard to capture in the water, is there. I can see it, shimmering. Then the image changes; it becomes only an outline of itself, ghostly. A vanishing ghost salmon. There, not there, there, not there.

And I start to weep. The metaphor of the spawning salmon consumes me. It is me. This is how I feel. In a cycle of chronic illness, I too am here, then not here, a mere outline of myself, a shadow. I become a ghost of myself. Apparitional. I come back. I disappear again. I come back again, firm up, return to form. But I am vanishing again now. Translucent. Transparent. If you look for too long, you can see right through me.

This Frail Body—A Future Memoir

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Sometimes I think about writing memoir. I have notes written. Ideas. Paragraphs. Today, I would call it, “This Frail Body.”

An angiogram on Friday has left me shaken. I’ve experienced far worse medical procedures for sure, as any reader of this blog knows. My reaction is possibly excessive. But it is my reaction and I own it.

Maybe it’s the timing. I’ve had a few good months of very little intervention mostly because this procedure took a long time to get scheduled, not because my problems are over. Maybe it’s a last straw phenomenon. Maybe it’s because the stakes are so high.

I’m on blood thinners, so opening up an artery is a big deal. In preparation for this procedure, I’ve had to administer injections of a drug to “bridge” me off the blood thinner on myself, to my lower abdomen. I did it badly the first time, and I am bruised. An understatement. An area about 8 inches across my soft underbelly is red/black. There are smaller bruises tracing a trail of injection sites. I have to give myself another injection in the next few minutes.

I’m procrastinating.

Rather than become desensitized to the process, I’m becoming increasingly squeamish. I have to do it for a few more days.

Those bruises are now accompanied by several more from Friday’s incursions: blood draws, an IV, and of course the failed attempt to access the radial artery from my wrist and finally the successful access of the femoral site. Oh. And my neck. There was another access site there.

“Access” is an interesting word. The interior world of my lungs and heart have been “accessed,” skin cut, sternum cracked, ribs spread open, pericardium breached, heart and lungs sliced into, pieces removed, pieces added. Four times. These latest injuries are minor by comparison.

They are necessary for this project of continuing to live. “The team” as I’ve come to refer to the medical professionals who help me, is trying to find out if I’m eligible for a “minimally invasive” procedure to fix another failing valve. We haven’t even fully discussed whether I can be opened up again if this turns out not to be an option. The end of the road is within sight, and not in a good way.

“Minimally invasive” is still invasive. And this frail body wants to curl up in a soft bed wrapped in flannel pyjamas and home made quilts. Tea and toast are welcome. So is a little soft music. Maybe a little Blue Rodeo, maybe “Five Days in July.” I want to have a few favourite books on my bedside, read about crows, about other women’s struggles and insights. I want their bookish company.

Maybe someone else in a vulnerable place will want to read about my vulnerability. Maybe they will find solace and sustenance in my bookish company. Maybe I only need to write it for myself. Maybe that is a good enough reason. Maybe it is a task I could tackle soon. But first, more time under the quilts, in the pyjamas. Maybe I’d like the sound of knitting needles working. I’ll turn up the heat a bit and look out the window at the winter rains and in a day or so, feel good enough to make some soup.

(With deep thanks to my daughter and her partner for giving me this exact kind of refuge.)

Covid Is Never Going To Be Over

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Covid is never going to be over. Never. And I’m tired.

I’m tired of being one of the very few people who remains masked and cautious. Even my doctors don’t. I’m tired of hearing the pandemic talked about in the past tense when, in the past three months alone, six people in my immediate circle have had it. And those are the ones who admit it. Most people pretend they have a cold or allergies. Dollars to donuts, it’s covid. But we’ll never know because no one tests, and tests aren’t available, and when they are available they are expensive, and the rapid tests are shitty anyway, so why bother? I’m tired of hearing people talk about their new mysterious illnesses as though they are completely removed from their covid infections. Raynaud’s disease. Shingles. Heart problems. Inflammatory diseases. A stroke. Brain fog. Memory loss. Accelerating dementia. It’s related to covid. It’s infuriating.

Speaking to a friend today, I said that if she ever sees me in a crowded room without a mask, she will have to know I’m suicidal. It will mean I’ve given up on trying to live. And I have tried really hard to live. In the past ten years, I’ve recovered from a terrible brain injury. All the more reason to protect my brain. I know what’s at stake. I’ve been through my own memory loss and loss of executive function, and I hate to tell you this, but I recognize it in others. I’ve had three open heart surgeries and part of a lung removed. All the more reason to protect my cardio-vascular system. Everything I love to do involves the use of my brain, my heart, and my lungs. Everything. You bet I’m going to protect them. I have lived through so much. And it’s been made exponentially more difficult by also having to protect myself from this monstrous octopus that invades the air we breathe and does everything it can to get its tentacles in every part of our bodies.

Did I mention I’m tired? Early in the pandemic, I realized that covid is doing to the world around us what it does to the world in us. It is a destroyer. What it does to our bodies, it does to our relationships and our society. I can’t be the one to list everything that covid does. Everything it costs. How it moves. Why masks work. The link between covid and fascism. Other people are doing that work. Look for it. Believe it. But I can be the one to reach out from this computer screen and say that too many people are careless with their lives. Careless. I see them. I see them as part of a death cult.

On second thought, maybe it is all the covid deniers who are suicidal. It’s sure not me. I’m not in a death cult. I’m in a life cult. And I’m staying in it. I’ll be here with my masks and my tests and my air filters and my belief that we can do better and whenever anyone wants to join me, they will be welcome. I hope to see you here with me soon.

The Bad Paramedic

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In January 2024, I asked my husband to call 911 because I felt certain I was dying. Beyond something being very wrong with my heart, I felt a sudden and overwhelming sense of doom. I needed to go to the hospital.

I had been diagnosed with a heart problem in the fall of 2023 for which I was supposed to receive open heart surgery in the near future. When the paramedics arrived, I was having trouble concentrating and answering questions. I was busy trying to stay alive. I believe I wasn’t fully conscious. Nevertheless, they persisted with the questions. I remember hoping my husband was answering them. I was in and out. I remember trying to tell them it was my heart, and that I was waiting for surgery but something was really wrong. I remember very large people in my living room. Several. The room felt small and tight.

There seemed to be some debate about whether I would go to the hospital. I panicked. I knew I had to go to the hospital. How could it be up for debate? I sank into myself, tuned out the giants in the living room, and told myself their questions had nothing to do with me. All I had to do was keep breathing. They didn’t seem to understand my heart was a real problem.

I remember they said they couldn’t get the gurney into the house. Could I walk? I remember thinking if I said no, I wouldn’t get taken to the hospital. Somehow I did it. I got to my feet and I walked to the ambulance, eyes closed tight, breathing, holding onto a paramedic for dear life. It was very cold, a rare skiff of snow on the ground. I wondered if I was dreaming the snow, if I was still alive, and I opened my eyes to check, surprising the paramedic who was eye to eye with me, on the step below me, walking down the stairs backwards while guiding me down. And then I was on a gurney and in an ambulance and on my way to the hospital, panicking.

I realized suddenly that I did not have a mask. This only added to my panic. I asked for a mask. The paramedic (not the same one who lead me down the stairs) rolled his eyes. He did not give me one. He kind of laughed. Dismissive. He said something to me about it. I can’t remember exactly what he said, but the implication was that if I was with it enough to ask for a mask, I did not need to go to the hospital. I knew then that he thought I was wasting his time. I think I cried then and said out loud to myself, “What is happening to me?” And he said, “You tell me,” sarcastically. I felt like an old hypochondriac lady. I didn’t feel safe with him.

The next thing I remember I was in the hallway leading from the ambulance bay to Emergency. Everything was backed up. The hallway was packed with sick people. I was relieved to be in the hospital, but still didn’t have a mask. I asked for a mask again. I did not get one. I asked a third time. Someone finally gave me one. I’m fairly certain it was not the paramedic.

I tried to get control of my breathing again. Thirty years of practicing yoga came back to me. I breathed in. I breathed out. Several times. Then the paramedic said, “It looks like you’re feeling fine now.” I knew he didn’t believe there was anything wrong with me. He was looking at me with disgust. Disgust. Of this, I am certain.

Paramedic, if you are reading this, know that I was admitted to the hospital after you took me there. I didn’t leave for over a week. It was the start of a health care odyssey that remains ongoing and a diagnosis that was so much worse than anything I could have imagined that night. Know that I’ve had three open heart surgeries since then, and another major open chest surgery. I am grateful to everyone who helped me. You are not one of those people.

You made an already traumatic event worse. I try to figure out why you would imagine someone with an already diagnosed heart problem who called 911 didn’t need help and I can’t. You made me question myself and whether I was panicking for no reason. There was a reason.

In the intervening time, more than once, my doctors have told me I would know if I need to “go in.” They would tell me what to watch for, but would also say, “You will know.” And I have. But I’ve never called an ambulance again.