Living with a Birth Defect/Chronic Condition

This post isn’t about Narcissism, though I suppose one could argue that the details herein have made me vulnerable to being bullied, ostracized, ridiculed and other types of abuse which is usually perpetrated by Narcissists, other personality-disordered people and various disturbed sorts of people.

This post details how people living with debilitating birth defects and chronic conditions feel a lot of the time, so listen up.

I have a rare birth defect primary ciliary dyskinesia (immotile cilia) which is also called Kartagener Syndrome, or Kartagener’s Syndrome. It causes a lot of respiratory problems, including otitis media, sinusitis, bronchitis, and pleurisy and pneumonia. I have extreme food sensitivities, to the point where there is almost nothing I can eat that doesn’t precipitate a huge mucal eruption out of my lungs and sinuses.

Now that I am older I have bronchiectasis, a serious lung condition that is irreversible. I’m told it should have been diagnosed 20 years ago. Finally I know what’s wrong, and I’m left wondering why doctors didn’t diagnose it far sooner. It wasn’t that difficult a diagnosis. In fact, it was glaringly obvious.

I’ve lived like this for over 55 years, and I’m weary. Beyond weary.

I want out.

I just want out.

Is that too much to ask? Haven’t I suffered enough? Endured enough inconvenience? Suffered through enough humiliation? Extreme frustration? Being caught in public or driving in my car without kleenex so I have to swallow the crap or be forced to spit it out? Haven’t I had about enough of blowing bubbles with my nose, sometimes in public? Enough getting fired from jobs because people are disgusted by the sounds I cannot help but make at times? Enough rejection by men who are attracted to me until they sit down to their first meal with me or experience the horrible noises while I’m lying on my back during sex. Heavy breathing doesn’t help the mucous stay put — quite the contrary.

I’ve never written this boldly and graphically about what I go through almost each and every hour of my life, and certainly every day.

I’d like to have someone to grow old with, but I know it’ll never happen.

I’d like to have better health, but I know it’ll never happen. Birth defects are like that. Once you have bronchiectasis, it’s with you for life. It can only be controlled, and it must be controlled or you will die.

I’d like to feel lovable and worthy, but I doubt that’ll ever happen. Finally had a therapist tell me recently what the real issue is: neurological shock. And now that I know what’s actually the problem (on top of the physical stuff) I don’t have the resources for real actual trauma therapy. (I don’t count 30-minute sessions with a social worker at the HMO as in any way shape or form “therapy.”)

Yeah, my karma’s for shit. Put that in your pipe and smoke it, you esoteric spiritual metaphysical junkies! Just remember… you sit there judging me, you might just end up with the same condition in one of your future lives that will have no resemblance to Cleopatra or the Queen of Sheba.

My kids are grown and don’t need me anymore, can I just leave please?

My ex husband (who by the way never loved me, only married me for a green card and blonde green-eyed children with American passports), once questioned whether I had AIDS because my immune system was blown out. I had been on intravenous Floxin for 8 days in the hospital and became addicted to it – I had to be on it or I couldn’t stay well… HELLO?

No man has ever loved me in the way that a man really loves his wife. And people can’t believe it because they see the surface me, the attractive, outgoing, full of life curvy thing and think my life’s all together.

Nothing could be further from the truth.

I’d like to be like other women who have a decent husband, a nice house, some kids and grandkids, a social life, actually take a real vacation, travel somewhere nice or go out to eat or to the theater or hiking and maybe camping in the woods.

I’d trade half my looks and intelligence for the above.

A lot of women have envied me my looks, especially about 15-20 years ago. Women didn’t want to go out on the town with me, because I was the one who guys made a beeline for while they were left sitting there ignored. (Hey, it’s happened to me with women better looking than me, OK?!) I used to get bullied and undermined at work all the time. One time I overheard a woman say “let’s see if this sexy little bitch has any brains or class, and what are those disgusting noises she makes?” Yeah, I do have brains and class bitch, but you wouldn’t recognize it if it slapped you in the face, which is what I should have done instead of remaining in hiding behind the bathroom stall door.

I’ve actually been fired because someone was disgusted by me. People have also had their desk assignments moved because of me.

Now that I am older, I don’t get that envy or that particular kind of attitude anymore. In fact, I am now invisible since I’m such a worthless old hag (yeah, younger people can often be like that, I was actually called that at the dog park a few weeks ago).

One time I asked a male friend of mine why men were never sincere with me. He replied “when men look at you they think sex, not wife.” Oh joy. I’m not “wife” material, only an object to be used for sex or to fantasize about. And I replied: “and the mucous doesn’t help things, does it?” He didn’t reply.

I decided to gain 15-20 pounds so men would really not think of me as “wife material” any more, and I’d stop being hounded by horn dogs. It worked. Getting older has helped too.

When I was a little kid we lived in very arid area. My eardrums would retract constantly. That means they “retracted in and out” almost constantly, and I felt as though I were in a vacuum chamber. It made me crazy. They didn’t know what to call it, so they called it “sputtering.” “Oh, her ear is ‘sputtering’ again.” (Doctors didn’t use the term “retracting” in the 50’s??) “She’s throwing tantrums again. We don’t know what to do with her….” again. And again.

When I was 5 years old, I overhead my parents talking about me. My mother was saying “I just don’t know what to do with her anymore. What are we going to do??” They were talking about me as though I was somebody else’s kid, not their own kid. It was like they were in collusion against me. That’s how a little child’s brain and emotions work.

I remember standing there around the corner of the room and thinking “I’m gonna show them. They haven’t seen anything yet.” I was hurt, and I was angry, and I was defiant. I didn’t ask for these health problems, and they’re not the ones who had to live with them either.

All I remember feeling was that I wasn’t loved. I was loved, but that wound, that feeeling, will always be there even though I rarely think about it consciously.

Now that I once again live in a very arid area (even more so than when I was 5) my eardrums are going crazy again. I’m on inhalant steroids because my 30-something in-a-rush-all-the-time female doctor informs me that I have “Eustachian Tube Dysfunction.” Oh please. Can we just call it what it is?! Ear infections, fluid in the ear, glue ear, and what about the nerve damage I told you about, and the immotile cilia and why won’t any freaking doctor insert some ear tubes again even though I’ve asked several times? I can’t get a referral to an ENT because she just KNOWS what I’ve got: it’s just “Eustachian Tube Dysfunction.” Like my dad has always said: horse pucky!

And by the way, the steroids aren’t working. And why is it that the younger generation has to make up fancy new words and phrases for things? I don’t even believe there is such a thing as “Eustachian Tube Dysfunction.” But damn, Wikipedia’s got an entry! And if it does exist, that is NOT what I have.

At grade school, I was bullied and teased, and called humiliating names in front of all the other kids. I had to change schools to get away from the abuse. That’s when I developed a wall around me that is there to this day. I can’t get close to people. I feel unclean, I feel disgusting… I AM disgusting. I sound like a cystic fibrosis patient.

Oh and when I did change schools, I got to escape the long-term name-calling but then a kid started calling me “Big Barftha the Nazis’ prime weapon.” Oh joy. Who cares whether he had a crush on me or not? The actual reason was I beat his ass and everyone else’s in the spelling bee week after week and he was my main competition. 😉 Dude is now an attorney in San Diego. I called him about ten years ago and reminded him. He doesn’t even remember my name, and not even “Big Barftha.”

When my kids were in elementary school, I lived in fear that they would somehow be bullied. I became in my mind like a Mama Lioness, determined to annihilate any kid who might destroy the heart and the spirit of my precious offspring. My kids finally got exasperated and told me to lay off — they weren’t being bullied.

Clearly, my kids escaped school bullying. That’s nice for them. But they’ll never understand — viscerally — what it’s like to be publicly bullied and humiliated and pitied for years on end. It does something to a child that can’t be fully perceived or explained.

If I ever run into one of my 3 main torturers, I wonder what I might say or do. I know what I’d like to say or do, and it ain’t legal. I did write to one of them years ago on Classmates and ask why he bullied me and why did he think that was something acceptable. He wrote back apologizing, which amazed me. I’ve lost track of the third perp, but I know how to reach the second perp. Bloody bible-thumping born-again Christian hypocrite. And, of course, now a pillar of the community (gag).

People have long told me “how strong I am” and how I’ve “endured so much.” They “could never be as strong as me.”

I’ve got news for those people: I’m not strong. I haven’t endured. I’ve often barely survived, and this is one of those times. They think they know what you’re talking about — they don’t.

WON’T SOME DOCTOR HELP ME??? I DON’T CARE IF I DIE NEXT WEEK from the most caustic drug on the market. Can I have just one year, one month, one WEEK of my life without buckets and gobs of mucous pouring out of me? Is that too much to ask?? Is anybody out there??

Maybe I’ll meet a guy who sounds just as disgusting as I do, and we can commiserate together. I can be grossed out and disgusted by his gurgling and spitting green crap and he can return the favor.

The poor bastard better not need a green card. Been there, done that.

My new friends didn’t even know about this until I finally told them the other day in a fit of despair. They were surprised. That’s because I put an enormous amount of effort into hiding it and handling it as discreetly as I can, as ladies are expected to do. If I were a man, I’d probably be hawking and spitting with the best of them.

And just because I freak out and melt down and get in touch with my anger and despair about it once in a while doesn’t mean I’m NOT joyful and alive. It means I’m human.

Yeah, I’m wallowing in self-pity. I’ve earned it!

So don’t judge. You have no idea what others have been through — only what you yourself have been through. And unless you have a debilitating birth defect or lived with someone who does, you can’t possibly know how very difficult it is.