Friday, March 10, 2006

Deja Vu

Blogger Jeff Jarvis at Buzz Machine wrote a post about his heart rhythm problems, entitled My Disabled Month, that I can really relate to:

Because of my heart’s fibrillation (an irregular heartbeat) and tachycardia (a rapid heartbeat), I spent the last month disabled: That is, in an instant, I became unable to do some things that were normal for me the day before. And then, in another instant, with a shock of electricity on Monday afternoon, I was able to do them again. But now I do those things with a slightly different perspective. I learned something in my disabled month.

I do most everything fast. I walk as fast as I talk as fast as I eat as fast as I type. But now I slowed down because if I overdid things by just a hair, the heart rate would go wacky. Walking up a slight hill on a Manhattan street — even walking against the wind — suddenly felt like a force field fighting me.

I have dealt with the heart problems for six-and-a-half years now and can relate to what Mr. Jarvis says. Except in my instance, there is no shock of electricity that will allow me to go back in rhythm-the problems I have will stay with me for life and I can only learn to adapt to them on a daily basis without thinking that I will go back to the way I was. I was always a fast talker, walker, and eater. I loved being a Type A person who was on the go and could work all day, lift weights and run for miles. And now I can't--it has changed who I am as a person and not necessarily for the better like everyone tells you. I can no longer do many of the things that I love. But I have learned how to cope--and I often use my heart trouble to provide comic relief. Maybe I can provide Mr. Jarvis with some tips.

For example, Mr. Jarvis describes his feelings of embarrassment at not being able to climb stairs:

In the PATH station in New York, I stood there with old people, sick people, and mothers with baby carriages, waiting for a lift. I was embarrassed. I wondered whether they looked at me thinking, ‘What a lazy SOB: he looks fit and healthy and the excercise of a few stairs would be good for him: Get moving and don’t take up space on our elevator.’ Of course, it’s New York: Nobody really pays that much attention to anyone else. But I heard that echo in my head.

Several months after my heart attack, I went to my gym to walk around the track. Everytime I would go, a fit young guy would run by effortlessly and tell me to get moving. I tried to ignore him and flatter myself that he was just being nice. But the tenth time he told me I was not helping myself by crawling the track at a snail's pace was the breaking point. I looked at him and said, "I just had a heart attack and got out of the hospital, this snail's pace that you are laughing at is the best that I can do." A look of horror and embarrassment clouded his face and he slunk away. So, Mr. Jarvis, my first tip is, let others be embarrassed about their reaction to your condition--do not feel embarrassed yourself for having human frailties.

Mr. Jarvis notes that he cannot always perform tasks that a normal person can perform:

When I got on the plane coming home, they put me in an exit row and asked me the standard question: Are you able, etc.? I had to say, no, I’d rather not sit there just right now. I didn’t say I wasn’t able, though I wasn’t. I sensed another odd look: ‘What, you won’t rescue your fellow passengers, you selfish, first-class oaf?’ As we used to say in California, I was projecting. But that thought did flash through my head as I thought for a second about sitting there to avoid the embarrassment, though I realized that would have been irresponsible.

Rather than see yourself as selfish for having medical problems, my second tip is to use them to your advantage to get back at those you dislike. Case in point. A secretary at my daughter's school had been impolite to me on the phone the week before. I went to pick up my daughter from school one day and this obnoxious secretary told me that my daughter was at the playground half a mile or so outside and I would have to go fetch her. I looked at her and smiled kindly, "I'm sorry, I am disabled after recent heart surgery and not able to walk that far." She looked troubled at the word disabled (you know, all those ADA rules etc. have school personnel skiddish) and scurried down to the playground while I plopped myself in a chair and read a magazine in the air conditioned office until she came back with my child, apologizing for taking so long. You see, medical problems are not all bad.

And finally, why let feeling strange while on television or when speaking stop you from a peak performance:

But I didn’t tell everyone I felt strange. I did talks and panel discussions and was fine. But as I blogged, when I did an appearance on Donny Deutsch’s show and got pissed at a professional prude and enemy of the First Amendment, my heart really went wacky fast and I thought for a second I might pass out on TV. Now that would have been embarrassing. Luckily, few would have seen it.

Instead, use it to enhance your performance like I did the time I was doped up on beta blockers. I was working as an expert on a crime show and felt so sluggish, I thought I would fall asleep while being interviewed. When I later saw the show, my sleepiness came through as a kind of coy, sly detective type look which I thought really enhanced my performance on the show. Okay, I went home, fell on my face and slept for several hours, but I got through it and sometimes, that is the best one can hope for when dealing with medical problems. Or maybe the lesson, if there is one, is to have enormous patience for our fellow human beings who "look normal" but may be suffering the same way we are or worse. Oh, and continue being a snarky blogger--we can never have enough of those!

Udate: GM Roper has more thoughts on how to cope with a serious illness.


Anonymous Anonymous said...

Helen, what you and Jeff are doing is a service to people everywhere. I hope people with no physical disability will read your blogs and maybe... just maybe... they'll remember it when they are out in public.

For instance I know a woman who had to have hip replacement surgery at the age of 35 due to a hip socket problem when she was much younger. Anyhow, when she would go to the store with her 2 young kids, she had a permit for the handicapped spots.

I just know there were people who saw her climb out of her car - young with little kids and no outwardly identifiable problem - and they would think "geeze why can't she walk from regular parking like everyone else!" When in fact - she was not supposed to walk too much in the beginning. Now she walks marathons - but she couldn't back then.

So, I'm slow to judge those who are using facilities that make their physical exertion less. Just in case it's an instance like you or Jeff or my friend.

6:08 PM, March 10, 2006  
Anonymous Anonymous said...

I'm always a little suspicious when I see an expose of people bowling when they are supposed to be disabled, or whatever, because...

When I had a crushed disk the pain at times was unbearable, and the rest of the time it really ached. Except when I rode my bike. I could ride for miles in perfect comfort, then the pain would start as I was getting off the bike.

Things are not always as they seem.

8:39 PM, March 10, 2006  
Blogger Eric said...

I want to share something I'm not comfortable saying on my blog (and I thank you for the space to say it).

I've been feeling really angry and bitter and old and useless because I've been diagnosed with "adhesive capsulitis" (also known as "frozen shoulder"). I'm an athletic person, but recently I've been unable to do things like lift my arm. Or put on a seat belt without pain. Or even use a manual steering wheel like I did just a month ago. (This condition will eventually get better -- over the next year -- but it will get worse first.)

It just plain hurts. And it limits what I've taken for granted all my life that I can do, and you know, it just isn't fair! And who the hell cares? I know this sounds like whiny self-pity, but combine that with pre-existing low self esteem, and it doesn't leave much wiggle room.

Perspective like this post helps.

As Jeff concluded in his, "I need to appreciate normal."

10:09 PM, March 10, 2006  
Blogger gemma said...

Great post...using our physical limitations to our advantage is the perfect adaptation. Personally I love the warm weather because I can wear the lower cut shirts and jerseys that show off the scar from my triple bypass. Before that surgery I was admonished for not being more athletic, now I'm praised for waking up. It's a wonderful life.

8:26 AM, March 11, 2006  
Blogger Helen said...


Yes, I wear my scar from my ICD with pride--when people ask, I tell them I was in a knife fight. It sounds much more exciting than I had a heart attack and now have this scar and box in my chest. Hope you are doing okay.

8:50 AM, March 11, 2006  
Blogger gemma said...

doing fine Helen. My cardiologist told me at my last visit that at the rate I was going, my bypass would let me live long enough to worry about late onset alzheimer's. And that ....ta da is that.

9:35 AM, March 11, 2006  
Blogger ronin1516 said...

LIke the lady mentioned, who had a hip-replacement, I too look normal, just a bit overweight. My problem is a persistant brain tumor, that has caused a lot of collateral damage, leaving me with seizures, a heart attack that almost killed me etc. So, since I dont look like the way "sick or ill" people are supposed to look like, I encounter sneers and putdown comments in the gym, and from other people who assume I dont have a car becasue I am a loser who cant afford one.
It sometimes makes me mad, but, oh well, I dont listen to those kinds of comments any more. F**K 'em, I say!!! :) :)

10:04 AM, March 11, 2006  
Anonymous Anonymous said...

What an amazing post. Thanks, it gives those of us who are facing life threatening problems just a little more ammo in that fight.


5:05 PM, March 11, 2006  
Blogger Nancy said...

Or maybe the lesson, if there is one, is to have enormous patience for our fellow human beings who "look normal" but may be suffering the same way we are or worse.

I love it! I wish everyone would live by this lesson.


Before that surgery I was admonished for not being more athletic, now I'm praised for waking up.


6:27 PM, March 11, 2006  
Anonymous Anonymous said...

I have rheumatoid arthritis and drive a car with disabled license plates. A few years ago when I asked my doctor to sign the application form for a temporary disabled tag, he crossed out the temporary and checked the permanent box. That was a shock to me as it meant that my condition will not be back to where I was before. When I park in the designated handicapped spaces, I get contemptous looks from other people as if you need to have a cane, crutches or even wheelchair to use that space. Little do they know that when almost all the joints in your body are swollen and at times causing severe pain that you wish you can trade that condition for a different parking space. Walking is a challenge and it is so frustrating that I can not do the normal stuff I used to do before. Even after infusion and painkillers, the pain and nausea lingers which limit my activities.

I'm not judging people by their appearance but some people need to know that disability comes in different forms and sometimes are not visible.

9:49 PM, March 12, 2006  
Anonymous Anonymous said...

After my husband died, I had cancer. In a wonderful fit of malice, when I wasn't getting my way one day with an obnoxious salesman, I said 'I'm a widow and a cancer patient.' And looked very tearful. Man couldn't get me what I wanted fast enough. Friends and I laughed ourselves silly.

Sometimes illness CAN be used for fun.

8:57 PM, March 13, 2006  
Blogger Helen said...


Thanks for your comment--I hope you are doing okay and feeling better--you have been through a lot and I am glad you and your friends still have a sense of humor.

8:42 AM, March 14, 2006  
Anonymous Anonymous said...

As a pregnant 37 year old with asthma, I get some awful looks for taking the elevator up one floor instead of walking up the stairs. I looked a very rude woman right in the eye a couple of days ago and said, "Sorry to inconvenience you, but I'm having a bad asthma day and they don't want me to take my medicine right now." Everyone in the elevator grinned at her embarrassment.

11:08 AM, March 14, 2006  
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