Dysphagia Blues:
Reservations for 1
There I go... there I go... there I go. Or shall we say, eh-hmm (let me clear my throat and cry!)
Gone.
But I don't want to be gone like that. I want to be: Gone with the wind, fabulous!
I would love to go out for a bite to eat. I am reminiscing about all the dinners with friends, business associates and the churches that served breakfast and the churches that had pot luck after service. I remember the days when I used to take my daughter to dinner as much as I could. My business partner and I went to lunch 3-4 times a week. As much as I loved to cook I had some favorite restaurants that I frequented: The Seafood Palace (Thai and good, the place where I had my Private 35th Birthday Party, with a live band and the same place where actress, Kathy Bates acknowledged when she won the Oscar for the film, "Misery"), The Cajun (which had a live New Orleans band nightly and my old work colleagues and I ran to 2 nights a week in the 80's), The Polish Restaurant on 2nd Ave. and 12th (who served the best lamb shanks, mashed potatoes and peas 'n carrots in the world), Noodles (authentic Chinese Food), Hymie of Japan (with curtained-off booths with tables that were coffee table height and we sat yoga style on the floor), Well's (which was the original Harlem restaurant serving Chicken and Waffles), Sylvia's (who I had the honor of interviewing for a Magazine pictorial), Mama Leone's (the best Italian food), Minnie Tee's (Soul Food--absolutely scrumptious), etc. (at least 20 more--that I frequented!). I looked up some of these restaurants on the internet, most have closed--not even a blurb. They are definitely gone with the wind fabulous.
So who is going to go out with a person who has dysphagia? People who love you. And they are very far and few in between. Only my immediate family do I go out with to dinner in a restaurant. And I am anxious to find a dark restaurant to go to. And when I get there me, with my blurry eyes, (trying to get accustomed to the gloom of the room) scour the room to find that corner and that particular seat, which is not facing the public! What a moment of panic, just so I can sit down in a minimal amount of peace.
Even with my family, I hold a napkin in front of my mouth. I do have pride, you know. And of course, other people have the right not to look at someone drooling, who is having a very unsuccessful time trying to keep their mouth closed as they chew, while trying to keep the food in the mouth (as the numb muscles of my mouth are not quite working and the food wants to fall out). I know no one wants to watch in disgust, and I know the probability that I will start to choke is 80% or higher even if I am eating mashed potatoes. From the first cough it looks like I might be needing the Heimlich. I am no prize. I know that. And yes, I am one of those choking-having-difficulty-swallowing people who have resisted eating pureed food. Yick! Yuck! Yeck! It has no flavor.
So when you have dysphagia you hide in your little corner (and that means: mostly in your house) and that means: isolation and (I hate to admit it) that means depression.
Okay, now that we got that out, I finally realized why I got so utterly depressed and it has lasted for six months. Beside the October Blues, the Holiday Blues, and the fact that my 60th Birthday was coming--and I had about 1 chance in 100 of have a big blow out party (as I have been out of the social circle for a decade), I had had a bewildering experience--that I sort of kind of swept under the rug and didn't quite face.
I was shopping for a new doctor since my last doctor told me her office was not equipped to deal with patients who had a stroke and had cumulative issues. So it was appointment day with my new PCP. Looking back I realize now she wasn't friendly at all. As a matter of fact, she had the demeanor of a drill sergeant who was about to curse out the new recruits (and the new recruits in this case are the patients). I overheard her venting about a walk-in patient whom she told a colleague, "I am not going to see her. She missed her appointment the other day. Tell her she can call me later."
During my examination, this doctor, in a murmuring voice but still out loud and speaking to me said: "You are a lot of work. (She actually said this). "It takes a long time to examine you, you have a lot of issues. You should have brought your Medical Records with you." Mind you I had brought her the few pages I had on hand (guess it wasn't good enough, and I guess a big hospital with its vast administrative department could not take the time to send for them from my previous doctors). I thought to myself rather than tell her off: I must be out of the loop--it is up to me to take care of the details, and micro-manage my every aspect of my health records so that I don't take away anytime from her busy day. (I am getting pissed off and very angry thinking about it now). On my appointment day I was feeling like: 'She is tired of me and examining me and I am getting on her nerves').
Mind you this examination did not include blood, or urine. That's done by the lab on a separate day. As a matter of fact they hand you the analysis paraphernalia: a cup and a vial labeled with your name on it in a plastic zip-lock bag, to bring back with you for your scheduled lab appointment. (How gauche to write about all of this—but I just can’t keep holding this stuff in). So I was just handed a sanitary package. 'How efficient,' I thought, 'better not forget to bring it back, for I may get sent to detention.'
When this 'lovely' woman examined my tongue that I warned her had somehow enlarged into this grotesque thing after my stroke she remarked, "Oh there is nothing wrong with your tongue." I looked to see if she was jesting, or perhaps, maybe trying to reassure me that it wasn't so bad to look at. I waited to hear more or for the punch line. I looked at her face to see if that gave away the joke she was telling. I said to her, "You don't notice that my tongue is enlarged? No, there is nothing wrong with it, with a solemn face, but not looking at me. Then she looked in my mouth again. I asked again, "Can't you see how large my tongue is?" The tongue that is hanging out my mouth like a little puppy's tongue when I wake up I n the morning. The tongue that no longer resembles my once little, pointy, cute little tongue. This a new tongue! And it is the reason why I can't chew properly, and one of the reasons why I can't swallow properly. This is the tongue that causes the increase in phlegm that the Respiratory Specialist put me on a nebulizer for (to use daily off-label, just to help me clear my throat) as I have a chronic cough, because my tongue can't push down the normal secretions. This is the tongue that makes me wake me up in the night trying to swallow and causes me insomnia). Now I know, good and well, I have trouble speaking, eating, drinking and swallowing. And I WASN'T born this way! (All of these thoughts were crossing my mind, simultaneously). Then there was dead silence, as I decided not to speak again about anything. I had had enough!
She broke the silence and said, "The only thing left for you is a feeding tube next." I was taken aback, when she said that--way back I never even pictured it. I never had allowed my thoughts to go that far after the stroke--I just had not ever pictured myself that way. A feeding tube--my mind stopped thinking and in that short moment it seemed like I had traveled into a twilight zone. And then I realized my punch line that I was waiting for had come and it was a punch--a sucker punch in my face. The dichotomy of her monotone way of telling me there is nothing wrong with my tongue--to--her yet nonchalant, but gloomy-like way of stating, "You're going to end up on a feeding tube." 'That blanking Witch', I thought. And then she said in a matter-of-fact manner, "But I guess you have heard that before?"
As I whimpered, "No, I have not ever heard that before"." My confidence went out the window. My search for a doctor who would like me, understand me and be compassionate with me was just a dwindling thought. And I thought to myself, you are just a fool: no one, even people in the medical profession want to be bothered with you. They are callous, and they talk to you like you are a hypochondriac, and then when they do acknowledge your ills, it's with a 'You are just another turn-of-the-page case scenario--a number, an object, a thing, an element of the workload to be contended with--and not a human being with feelings. The word NEXT-Patient is painted on the Doctors' forehead, like a blinking neon-light powered by the electronics and wires of their minds. And you the patient see it, because somehow they blatantly send a message from that mind of theirs to you. And you, the patient realizes that the doctor doesn't give a crap about you.
So now finally realizing what was wrong with me, and why I have been sitting in my house for months sad and miserable, may I take this time to apologize to everyone who wondered what happened to me again, why I isolated myself again? To all my friends and family, I'm sorry. I am so strong in so many ways, so a lot of people don't understand when I fold. I'm just so sensitive. But more than that, I know there are people out there who suffer from dysphagia who get the off-the-cuff remarks and the disappointing, non-compassionate doctor's in their face and in their lives who feel the same way. I have to help them. I know GOD wants me to take these lessons and do something to help others.
Anyway, as I come back out of my isolation from doctors--even knowing I have to find a new PCP and being marked the difficult patient and probably facing rejection again. (You would think these doctors know that you are already at the end of your rope and treat you with a kind- bedside manner). I will continue not to curse and above all, try to find the positive in these outrageous situations. I must keep up the good work and live this new chapter in my life. My old life is gone--but may it be, 'Gone in the wind fabulous', as I am embarking on my journey, into a new chapter: the person who can take the negative situations and make them a Christ-like mission. I also realize I can't replay these negative incidents over and over--which I really have to work on.
But just in case, I want to do something rash and curse somebody out, I draw on a fond memory. Once upon a time, I free-lanced as a publicist and had a theatre playhouse as a client. They were producing a new play. The play's title had a curse word in it. I actually wasn't fond of that then either. But any way I represented: I did the work. I got the press to review it and announce it. We had all of the clubs, organizations and churches in the house for standing room only crowds. The press campaign had done well. The play of the day was a very current, interesting and controversial topic. It was about this new thing called, HMO's. And the name of the play was entitled, "Dem Damn Doctors". There you have it. Need I say any more?
Gone.
But I don't want to be gone like that. I want to be: Gone with the wind, fabulous!
I would love to go out for a bite to eat. I am reminiscing about all the dinners with friends, business associates and the churches that served breakfast and the churches that had pot luck after service. I remember the days when I used to take my daughter to dinner as much as I could. My business partner and I went to lunch 3-4 times a week. As much as I loved to cook I had some favorite restaurants that I frequented: The Seafood Palace (Thai and good, the place where I had my Private 35th Birthday Party, with a live band and the same place where actress, Kathy Bates acknowledged when she won the Oscar for the film, "Misery"), The Cajun (which had a live New Orleans band nightly and my old work colleagues and I ran to 2 nights a week in the 80's), The Polish Restaurant on 2nd Ave. and 12th (who served the best lamb shanks, mashed potatoes and peas 'n carrots in the world), Noodles (authentic Chinese Food), Hymie of Japan (with curtained-off booths with tables that were coffee table height and we sat yoga style on the floor), Well's (which was the original Harlem restaurant serving Chicken and Waffles), Sylvia's (who I had the honor of interviewing for a Magazine pictorial), Mama Leone's (the best Italian food), Minnie Tee's (Soul Food--absolutely scrumptious), etc. (at least 20 more--that I frequented!). I looked up some of these restaurants on the internet, most have closed--not even a blurb. They are definitely gone with the wind fabulous.
So who is going to go out with a person who has dysphagia? People who love you. And they are very far and few in between. Only my immediate family do I go out with to dinner in a restaurant. And I am anxious to find a dark restaurant to go to. And when I get there me, with my blurry eyes, (trying to get accustomed to the gloom of the room) scour the room to find that corner and that particular seat, which is not facing the public! What a moment of panic, just so I can sit down in a minimal amount of peace.
Even with my family, I hold a napkin in front of my mouth. I do have pride, you know. And of course, other people have the right not to look at someone drooling, who is having a very unsuccessful time trying to keep their mouth closed as they chew, while trying to keep the food in the mouth (as the numb muscles of my mouth are not quite working and the food wants to fall out). I know no one wants to watch in disgust, and I know the probability that I will start to choke is 80% or higher even if I am eating mashed potatoes. From the first cough it looks like I might be needing the Heimlich. I am no prize. I know that. And yes, I am one of those choking-having-difficulty-swallowing people who have resisted eating pureed food. Yick! Yuck! Yeck! It has no flavor.
So when you have dysphagia you hide in your little corner (and that means: mostly in your house) and that means: isolation and (I hate to admit it) that means depression.
Okay, now that we got that out, I finally realized why I got so utterly depressed and it has lasted for six months. Beside the October Blues, the Holiday Blues, and the fact that my 60th Birthday was coming--and I had about 1 chance in 100 of have a big blow out party (as I have been out of the social circle for a decade), I had had a bewildering experience--that I sort of kind of swept under the rug and didn't quite face.
I was shopping for a new doctor since my last doctor told me her office was not equipped to deal with patients who had a stroke and had cumulative issues. So it was appointment day with my new PCP. Looking back I realize now she wasn't friendly at all. As a matter of fact, she had the demeanor of a drill sergeant who was about to curse out the new recruits (and the new recruits in this case are the patients). I overheard her venting about a walk-in patient whom she told a colleague, "I am not going to see her. She missed her appointment the other day. Tell her she can call me later."
During my examination, this doctor, in a murmuring voice but still out loud and speaking to me said: "You are a lot of work. (She actually said this). "It takes a long time to examine you, you have a lot of issues. You should have brought your Medical Records with you." Mind you I had brought her the few pages I had on hand (guess it wasn't good enough, and I guess a big hospital with its vast administrative department could not take the time to send for them from my previous doctors). I thought to myself rather than tell her off: I must be out of the loop--it is up to me to take care of the details, and micro-manage my every aspect of my health records so that I don't take away anytime from her busy day. (I am getting pissed off and very angry thinking about it now). On my appointment day I was feeling like: 'She is tired of me and examining me and I am getting on her nerves').
Mind you this examination did not include blood, or urine. That's done by the lab on a separate day. As a matter of fact they hand you the analysis paraphernalia: a cup and a vial labeled with your name on it in a plastic zip-lock bag, to bring back with you for your scheduled lab appointment. (How gauche to write about all of this—but I just can’t keep holding this stuff in). So I was just handed a sanitary package. 'How efficient,' I thought, 'better not forget to bring it back, for I may get sent to detention.'
When this 'lovely' woman examined my tongue that I warned her had somehow enlarged into this grotesque thing after my stroke she remarked, "Oh there is nothing wrong with your tongue." I looked to see if she was jesting, or perhaps, maybe trying to reassure me that it wasn't so bad to look at. I waited to hear more or for the punch line. I looked at her face to see if that gave away the joke she was telling. I said to her, "You don't notice that my tongue is enlarged? No, there is nothing wrong with it, with a solemn face, but not looking at me. Then she looked in my mouth again. I asked again, "Can't you see how large my tongue is?" The tongue that is hanging out my mouth like a little puppy's tongue when I wake up I n the morning. The tongue that no longer resembles my once little, pointy, cute little tongue. This a new tongue! And it is the reason why I can't chew properly, and one of the reasons why I can't swallow properly. This is the tongue that causes the increase in phlegm that the Respiratory Specialist put me on a nebulizer for (to use daily off-label, just to help me clear my throat) as I have a chronic cough, because my tongue can't push down the normal secretions. This is the tongue that makes me wake me up in the night trying to swallow and causes me insomnia). Now I know, good and well, I have trouble speaking, eating, drinking and swallowing. And I WASN'T born this way! (All of these thoughts were crossing my mind, simultaneously). Then there was dead silence, as I decided not to speak again about anything. I had had enough!
She broke the silence and said, "The only thing left for you is a feeding tube next." I was taken aback, when she said that--way back I never even pictured it. I never had allowed my thoughts to go that far after the stroke--I just had not ever pictured myself that way. A feeding tube--my mind stopped thinking and in that short moment it seemed like I had traveled into a twilight zone. And then I realized my punch line that I was waiting for had come and it was a punch--a sucker punch in my face. The dichotomy of her monotone way of telling me there is nothing wrong with my tongue--to--her yet nonchalant, but gloomy-like way of stating, "You're going to end up on a feeding tube." 'That blanking Witch', I thought. And then she said in a matter-of-fact manner, "But I guess you have heard that before?"
As I whimpered, "No, I have not ever heard that before"." My confidence went out the window. My search for a doctor who would like me, understand me and be compassionate with me was just a dwindling thought. And I thought to myself, you are just a fool: no one, even people in the medical profession want to be bothered with you. They are callous, and they talk to you like you are a hypochondriac, and then when they do acknowledge your ills, it's with a 'You are just another turn-of-the-page case scenario--a number, an object, a thing, an element of the workload to be contended with--and not a human being with feelings. The word NEXT-Patient is painted on the Doctors' forehead, like a blinking neon-light powered by the electronics and wires of their minds. And you the patient see it, because somehow they blatantly send a message from that mind of theirs to you. And you, the patient realizes that the doctor doesn't give a crap about you.
So now finally realizing what was wrong with me, and why I have been sitting in my house for months sad and miserable, may I take this time to apologize to everyone who wondered what happened to me again, why I isolated myself again? To all my friends and family, I'm sorry. I am so strong in so many ways, so a lot of people don't understand when I fold. I'm just so sensitive. But more than that, I know there are people out there who suffer from dysphagia who get the off-the-cuff remarks and the disappointing, non-compassionate doctor's in their face and in their lives who feel the same way. I have to help them. I know GOD wants me to take these lessons and do something to help others.
Anyway, as I come back out of my isolation from doctors--even knowing I have to find a new PCP and being marked the difficult patient and probably facing rejection again. (You would think these doctors know that you are already at the end of your rope and treat you with a kind- bedside manner). I will continue not to curse and above all, try to find the positive in these outrageous situations. I must keep up the good work and live this new chapter in my life. My old life is gone--but may it be, 'Gone in the wind fabulous', as I am embarking on my journey, into a new chapter: the person who can take the negative situations and make them a Christ-like mission. I also realize I can't replay these negative incidents over and over--which I really have to work on.
But just in case, I want to do something rash and curse somebody out, I draw on a fond memory. Once upon a time, I free-lanced as a publicist and had a theatre playhouse as a client. They were producing a new play. The play's title had a curse word in it. I actually wasn't fond of that then either. But any way I represented: I did the work. I got the press to review it and announce it. We had all of the clubs, organizations and churches in the house for standing room only crowds. The press campaign had done well. The play of the day was a very current, interesting and controversial topic. It was about this new thing called, HMO's. And the name of the play was entitled, "Dem Damn Doctors". There you have it. Need I say any more?