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| Am I Too Embarrassed to Save My Life? | Am I Too Embarrassed to Save My Life? |
| (35 minutes later) | |
| The restaurant is close, she says. It’s right here. | The restaurant is close, she says. It’s right here. |
| I am walking after a reading in Toronto with a fellow writer, who’s leading us to a restaurant. With each step, everything in my body bursts — angina, shortness of breath, the scream of bursitis in my hip, the knowledge of sure heart failure ahead. The road she had described as flat is actually a gradual incline that might as well be Mount Everest. I need a scooter, a car. | I am walking after a reading in Toronto with a fellow writer, who’s leading us to a restaurant. With each step, everything in my body bursts — angina, shortness of breath, the scream of bursitis in my hip, the knowledge of sure heart failure ahead. The road she had described as flat is actually a gradual incline that might as well be Mount Everest. I need a scooter, a car. |
| Can I call a cab? I ask. | Can I call a cab? I ask. |
| Come on, she repeats, it’s close. | Come on, she repeats, it’s close. |
| Close, where? I want to ask, but it is hard to shape words while in extremis. I want to say, “I can’t,” yet I don’t want to draw attention to my need. As I find so often when I’m out with able-bodied companions, “right here” keeps moving further away. | Close, where? I want to ask, but it is hard to shape words while in extremis. I want to say, “I can’t,” yet I don’t want to draw attention to my need. As I find so often when I’m out with able-bodied companions, “right here” keeps moving further away. |
| Among my clearest memories of the world — of London, New York, Los Angeles, Paris, Athens, Kyoto and Shanghai — are of streets and sidewalks winding away from me, asphalt gray, their rises unending and impossible. My clearest memory of Paris is of subway stations with interminable passageways to the trains and being brought to tears. | Among my clearest memories of the world — of London, New York, Los Angeles, Paris, Athens, Kyoto and Shanghai — are of streets and sidewalks winding away from me, asphalt gray, their rises unending and impossible. My clearest memory of Paris is of subway stations with interminable passageways to the trains and being brought to tears. |
| The woman knows something of my disability, and offers some help, but not enough. She slings my computer bag over her shoulder and yanks my travel bag behind. Still, even with her burden, she walks too fast for me. There are no cabs for me to flag. I struggle on but stay silent, hoping as I have for decades that this won’t be the day I die. | The woman knows something of my disability, and offers some help, but not enough. She slings my computer bag over her shoulder and yanks my travel bag behind. Still, even with her burden, she walks too fast for me. There are no cabs for me to flag. I struggle on but stay silent, hoping as I have for decades that this won’t be the day I die. |
| ■ | ■ |
| IN 1984, when I was 30, I was diagnosed with cervical cancer — carcinoma in situ. If you have to have cancer, that’s the type to get. I educated myself about my disease and sailed through treatment. But my brush with mortality shattered my idea of the world and what I expected from it. Nine months later, I had a heart attack. My body had dispensed two of the major killer diseases in less than a year? No. | IN 1984, when I was 30, I was diagnosed with cervical cancer — carcinoma in situ. If you have to have cancer, that’s the type to get. I educated myself about my disease and sailed through treatment. But my brush with mortality shattered my idea of the world and what I expected from it. Nine months later, I had a heart attack. My body had dispensed two of the major killer diseases in less than a year? No. |
| When I had the heart attack I went to the hospital. The doctor refused to do more than blood work because I was “the wrong age and gender for a heart attack.” He gave me Tylenol with codeine for pain and sent me home. The heart attack lasted 12 more hours and caused permanent damage to my heart muscle. | When I had the heart attack I went to the hospital. The doctor refused to do more than blood work because I was “the wrong age and gender for a heart attack.” He gave me Tylenol with codeine for pain and sent me home. The heart attack lasted 12 more hours and caused permanent damage to my heart muscle. |
| When I got a diagnosis of coronary artery disease weeks later, I had to choose between open-heart surgery, which I was convinced I couldn’t survive, or long-term medical treatment. I chose the latter. Along with exhaustion and worry for my kids, who were 4 and 7 years old at the time, all I felt was shame, a heavy, pressing blanket of shame. | When I got a diagnosis of coronary artery disease weeks later, I had to choose between open-heart surgery, which I was convinced I couldn’t survive, or long-term medical treatment. I chose the latter. Along with exhaustion and worry for my kids, who were 4 and 7 years old at the time, all I felt was shame, a heavy, pressing blanket of shame. |
| In the years that followed, I was exhausted and sick. I had angina attacks every time I walked or otherwise exerted myself. | In the years that followed, I was exhausted and sick. I had angina attacks every time I walked or otherwise exerted myself. |
| I began to have joint problems around 1990, but anything that wasn’t life-threatening, I ignored. In 1994, I developed heart failure, which very gradually worsened until, around 2009, it went from mild to moderate, affecting most everyday activities. If I exerted myself, my ankles would swell and my lungs would fill, followed by months of cardiac asthma and coughing. | I began to have joint problems around 1990, but anything that wasn’t life-threatening, I ignored. In 1994, I developed heart failure, which very gradually worsened until, around 2009, it went from mild to moderate, affecting most everyday activities. If I exerted myself, my ankles would swell and my lungs would fill, followed by months of cardiac asthma and coughing. |
| What really sent me downhill fast was the end of my 18-year marriage. My heart function worsened and I got shortness of breath from further-narrowing arteries. Several stents were implanted but failed within months, and my bouts of severe arrhythmias grew longer and more frequent. | What really sent me downhill fast was the end of my 18-year marriage. My heart function worsened and I got shortness of breath from further-narrowing arteries. Several stents were implanted but failed within months, and my bouts of severe arrhythmias grew longer and more frequent. |
| For four months, I suffered undiagnosed unstable angina, and then I had another heart attack, resulting in more cardiac damage, for which I got yet another stent and then open-heart surgery. But even after that major procedure, heart failure, angina and arrhythmias continued unabated until I was so short of breath I had to crawl to the bathroom. Finally, doctors discovered I was suffering from atrial fibrillation (a dangerous kind of irregular heartbeat) and in December 2015, I had cardiac ablation to steady my heart rhythm, which kicked in three months later. | For four months, I suffered undiagnosed unstable angina, and then I had another heart attack, resulting in more cardiac damage, for which I got yet another stent and then open-heart surgery. But even after that major procedure, heart failure, angina and arrhythmias continued unabated until I was so short of breath I had to crawl to the bathroom. Finally, doctors discovered I was suffering from atrial fibrillation (a dangerous kind of irregular heartbeat) and in December 2015, I had cardiac ablation to steady my heart rhythm, which kicked in three months later. |
| Still, for all that’s been fixed, I’ve never managed to bounce back. My exhaustion is profound; I still have shortness of breath during exertion and every activity needs to be balanced against how long it will take to recover from it. I’ve become nearly a shut-in. | Still, for all that’s been fixed, I’ve never managed to bounce back. My exhaustion is profound; I still have shortness of breath during exertion and every activity needs to be balanced against how long it will take to recover from it. I’ve become nearly a shut-in. |
| Each one of my symptoms on its own is disabling, and together they brew up an internal hurricane. But we expect disability to be visible; we require the disabled to look impaired. I could always pass. Around me, people were wheelchair-bound, had mobility devices, used Braille and seeing-eye dogs. | Each one of my symptoms on its own is disabling, and together they brew up an internal hurricane. But we expect disability to be visible; we require the disabled to look impaired. I could always pass. Around me, people were wheelchair-bound, had mobility devices, used Braille and seeing-eye dogs. |
| I had none of that, yet I proclaimed disability? People disagreed. I was screamed at for using disabled parking, told I didn’t qualify for benefits (Meals on Wheels wasn’t suitable for “someone like me”), told I was lazy, denied friendships (“my friends show up”), accused of faking it or of having angina only when it was convenient. I’d also hear rambling nonsense telling me coronary artery disease was karma, and I was atoning for my abuses of others in a prior life. A few people opined that my illness was God’s punishment for being homosexual. | I had none of that, yet I proclaimed disability? People disagreed. I was screamed at for using disabled parking, told I didn’t qualify for benefits (Meals on Wheels wasn’t suitable for “someone like me”), told I was lazy, denied friendships (“my friends show up”), accused of faking it or of having angina only when it was convenient. I’d also hear rambling nonsense telling me coronary artery disease was karma, and I was atoning for my abuses of others in a prior life. A few people opined that my illness was God’s punishment for being homosexual. |
| But never feigning extra-incapacity was important to me. In all these years, I’ve never faked a symptom. That matters not a whit to anyone else (nor could I prove it), but it’s a badge of personal pride to me. | But never feigning extra-incapacity was important to me. In all these years, I’ve never faked a symptom. That matters not a whit to anyone else (nor could I prove it), but it’s a badge of personal pride to me. |
| Still, having coronary artery disease, an old white guy’s disease, so young was humiliating. I was a feminist lesbian. We were supposed to be strong and independent. We weren’t supposed to need. My disease meant I was all need. | Still, having coronary artery disease, an old white guy’s disease, so young was humiliating. I was a feminist lesbian. We were supposed to be strong and independent. We weren’t supposed to need. My disease meant I was all need. |
| I thought I had somehow caused my own heart disease. I did not drink, do drugs or eat a lot of junk food, and I was not overweight. Was it stress? Maybe I just couldn’t handle life. Eventually, I discovered it’s very likely I have an autoimmune disease that caused systemic and continual inflammation, itself a factor in hardening arteries. This disease explains my arthritic pain in my hips and knees, the hair loss of my childhood and more symptoms. It’s late, but finally I have a logical reason for the wreckage of my physical life. | I thought I had somehow caused my own heart disease. I did not drink, do drugs or eat a lot of junk food, and I was not overweight. Was it stress? Maybe I just couldn’t handle life. Eventually, I discovered it’s very likely I have an autoimmune disease that caused systemic and continual inflammation, itself a factor in hardening arteries. This disease explains my arthritic pain in my hips and knees, the hair loss of my childhood and more symptoms. It’s late, but finally I have a logical reason for the wreckage of my physical life. |
| I needed any help anyone was willing to offer. I still do. But utility is not a good building block for relationships, and so I pretend that my need is less acute. I can do it, I can do it, I can do it. I knew every excuse to slow the pace. Undone shoelace (good for two, maybe even three stops); coughing and bending double in a faux flu attack (while digging for nitro); stopping dead and throwing up my arms in the middle of a sentence as if a self-captivating speaker; a dropped tube of lip balm, a cover for another spritz of nitro. | I needed any help anyone was willing to offer. I still do. But utility is not a good building block for relationships, and so I pretend that my need is less acute. I can do it, I can do it, I can do it. I knew every excuse to slow the pace. Undone shoelace (good for two, maybe even three stops); coughing and bending double in a faux flu attack (while digging for nitro); stopping dead and throwing up my arms in the middle of a sentence as if a self-captivating speaker; a dropped tube of lip balm, a cover for another spritz of nitro. |
| Every day with a disability is a bad situation from which I can’t extricate myself. I’m feeble and vulnerable. If someone brandished a knife at me on the street and shouted, “Run!” I couldn’t. If I went to a protest and was pepper-sprayed or detained without access to my cardiac medications, I’d promptly die. So I sit, mostly alone, on the border of life, watching others lead it. | Every day with a disability is a bad situation from which I can’t extricate myself. I’m feeble and vulnerable. If someone brandished a knife at me on the street and shouted, “Run!” I couldn’t. If I went to a protest and was pepper-sprayed or detained without access to my cardiac medications, I’d promptly die. So I sit, mostly alone, on the border of life, watching others lead it. |
| ■ | ■ |
| THERE! There! I spy a restaurant, more than a block ahead. A block! So hopelessly far! I resolve to make it to those patio chairs. How to explain my horror as my friend stomps on past them, to explain my panic as eventually we come on a whole strip of restaurants yet, still, pass one, two, three? I feel my body refusing: No, no more. How to explain how flabbergasted I am when we arrive at our destination and there’s a flight of stairs? | |
| Am I going up? Will I finally express how physically challenged I really am? Or am I still too embarrassed to save my life? | Am I going up? Will I finally express how physically challenged I really am? Or am I still too embarrassed to save my life? |