CityBeat’s Living Out Loud – Cincinnati Blog











{October 23, 2006}   Super Amps – and Then There’s Me

amp-1.JPGamp-2.JPG Photo credit for last picture – Sara Beiting

You may not be familiar with these people, but I am.

First there is Sarah Reinertsen. She is a left, above knee amputee, who finished the grueling Ironman triathlon in October 2005.

Then comes Chad Crittenden. He is a right, below knee amputee who was in the Survivor Vanuatu series.

Now I hear there’s yet another super amp in the television series, Amazing Race.

These folks (and there are more) are noteworthy and truly exemplify the human spirit triumphing over adversity. So why do they piss me off?

Because they are constantly pointed out to me by friends and family as if to imply that an amputation ain’t nothing but a thang.

Folks, it is a big-ass thang; a really big inconvenience in my life and one that will never, ever go away.

Before I was fitted with my prosthesis, I was beset with doubts. Would I really even be able to walk with an artificial leg?

In the midst of all these unspoken fears, I had innumerable people reassure me that, “You will be fine. Why just look at that guy from Survivor.” Or, from an aunt, “My brother-in-law lost his leg to an accident, and he was walking in just three weeks. Like he’d never lost a leg.”

Well friends, it wasn’t and isn’t that easy.

You see, I’ve never been all that physical. I prefer reading, writing, and websurfing to jogging, and I always have. Don’t get me wrong, for years I’ve enjoyed camping (tent, not RV) and hiking. I’ve hiked Buzzard’s Roost, a lot of the longer trails in Hocking Hills and bits of the trails in the Great Smoky Mountains. But these events were maybe twice a year, not my everyday life.

I could also lose some weight. And, I’m fifty one years old.

All these factors point to someone who, when she lost her right leg, was never going to become one of those super amps. In fact, it took me an extraordinary amount of physical therapy to even be able to walk.

Now I can walk – just not that far. I know, I know, I sound just like that little old man in the wheelchair commercial. But it’s true.

Wearing the layers upon layers of stuff that constitute an arty leg wreaks havoc on my skin. Your skin can’t breathe in all that aloe-impregnated rubbery stuff. Your skin prefers to breathe, take my word for it.

I can’t jump up from a dead sleep to go pee in the middle of the night; it takes too long to don that leg. I keep a wheelchair by the bed.

And, that foot attached to the prosthesis? I am blessed to have the same “foot” as Chad Crittenden, but no matter what the hype, that thing just doesn’t flex. I can trek through my somewhat uneven yard, but I don’t see me hiking hills anytime soon.

But just so you know, I’m happy and fortunate to be here on planet earth. I’m still here with and for my daughter. I continue to look at the glass as half full.

Just don’t point out any of those super amps to me.

Marilyn

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Phil says:

As far as I’m concerned YOU ARE the super amp. Thanks for sharing this with us.



Polly says:

This kind of post, Marilyn sharing part of her life with us, is why I come here every morning and why it has turned into a habit. Taking a look at other people’s lives and how they live them is truly wonderful.

This was a nice read. I’m always glad when Marilyn comes here.



Karen @ the hood says:

You are so brave. I don’t know what I would do if I had to go through what happened to you.



Josh says:

Sarah Reineatsen and “Survivor” is not real life. You are. If there is such a thing as a super amp, its somebody like you.



Karen says:

Marilyn, thanks for sharing 🙂



Brenda says:

When Larry wrote about you in his cover story in the spring, I feel like I came to know you a little bit but now that you contribute here, I feel like I even know you more. You seem like a really nice person.

Thanks for telling us your story and please keep sharing.



Matt says:

You are a brave woman. I’m not sure how I would handle it if I were in your situation.



Perry says:

I have an aunt who lost a leg, I think she’s diabetic. That woman gets along probably even faster than I do but it took a little time. Probably a year from now, you will be running races! Hang in there!!



Bill says:

A very interesting post. How did losing your leg all come about?



Heather says:

Marilyn,

People say dumb things, but they mean well. My problem is, when I want to comfort someone, I’m so worried I’ll say the wrong thing, that I get tongue tied, and end up not saying anything.

My husband in particular says the wrong things all the time. I feel like he is belittling my problem, but I think he’s just trying to make me feel better. That’s probably why people point out the super amps.

I know how you feel, though. I hate triplets. Not as much as I used to. When I lost my son, I didn’t have triplets anymore, and people would still point out triplets to me, or let me know when a show about triplets was on TV.

You have a really great attitude, you know? You have had to deal with so mush adversity recently, but you’re here writing and sharing. I think you have passed the point when many other people would have given up, and you still say that you’re lucky to be here on this earth. Other super amps may inspire us with their physical strength, but you inspire us with your spiritual strength.

Thanks so much for sharing.



C.A. MacConnell says:

Sometimes I wonder about all the things people go through…all of our struggles and pains and setbacks. Often, things have happened to me so that I can help others that come into my life later, those who have been through similar pains. It’s amazing to me the way this works…both beautiful and tragic at times. Sharing stories is what gives other people hope and strength. Thanks for sharing yours. Christine.



Marilyn says:

You guys are embarrassing me! I’m anything but a super amp… I will say this, I’ve learned there are lots harder things to go through than the medical stuff I’ve been subjected to. (shameless self promotion here: read my lol column near the end of November for real pain)

To Bill who wonders how this all came about: I have a weird sarcoma (soft tissue cancer). It seems to return no matter how much of my leg they remove. Right now, I might be ok.

I feel that all that I’ve been through has fer sure made me stronger. I know I’m wiser than before. Of course, perhaps I was really stooopid previously, who knows?

Thanks for all the great comments, and it’s really cool that we have a place to share. Sharing life and love is what it’s all about, I think.



Debbie says:

Sometimes spiritual strength is much better than physical. I think the spirit conquers all.



Marilyn says:

I apologize in advance, but I see an opportunity to raise the consciousness of society (sorry David G!).

Prosthesis are very expensive. I have the simplest set up, since I’m a below knee amp. And my leg, all totalled, cost approximately $15,000 in 2005.

Now, bear in mind that during the first 3-5 years after an amputation, the residual limb continues to shrink. This forces an amputee to need a new socket (the most expensive and important part of the limb) about every 6 -12 months. If the leg don’t fit, you don’t walk.

OK.

When I first became an amputee in August 05, my husband’s health insurance through his employer paid 100% for prosthesis and for the prosthetist. No copay — great stuff!

However, effective Sept 06, hubby’s employer changed health insurance carriers. Hubby’s portion of the premiums remained the same. The great coverage remained the same, except for one little thing:

— Prosthetic coverage is now capped at $2,500 per YEAR —

Do you think this is just an unlucky coincidence or does it appear to you that my claims on the health insurance plan in 2005 drove this employer to, in effect, relegate me to being crippled and/or extremely poor for the rest of my life? After all, I’m only one person. Look at how much the company could save themselves and the other employees by cutting waaay down on this one person’s coverage.

A prosthesis (and the prosthetist) costs what a cheap, new car costs ($12,000 – $15,000). Say I need a new leg every 5 years (a completely reasonable assumption). I’ll estimate that I’ll have to pay, on time, $300 a month for the rest of my life for the luxury of walking.



Hardy says:

$300 a month just to walk. Another example of how insurance companies control us.



Karen @ the hood says:

Marilyn,

At least you have health insurance. I never have.



Heather says:

I have insurance at the moment, though I’ve been without it a lot. Still, sometimes I wonder what the point is.

Remember when the Clintons wanted to start a federal healthcare program, and the republicans and insurance companies ran a bunch of scare ads? “The government will choose your doctor!” Well, fuck, the insurance company chooses my doctor already! (when I actually HAVE insurance)

It’s interesting how quickly a necessity (like, say… walking) can become a luxury for average, hard-working people when we let the rich people rule us.



Elly says:

We need national health insurance. That should be a given in this country.



Larry Gross says:

I’m glad we’re getting some good comments here. I think that’s due to Marilyn’s great writing style in the way she tells her story.

When it comes to writing about “amps,” I don’t think most people want to see it. They want it to go away and pretend it’s not there. The “My Right Foot” cover piece I did for CityBeat in June got a good reaction, but didn’t receive even half of the mail I got on a Dixie Chick piece in the same issue. Maybe it’s hard for some people to face reality with what happens to others.

Marilyn has a great Living Out Loud column coming up. Look for it the last week in November.



Kristina says:

As far as I’m concerned, Marilyn should be the LOL Girl and not that young bitch who think she’s so hot.

Marilyn has lived a life most definitey out loud. She has something to say unlike your naked so called other writer.

Let’s have more of Marilyn.



Sarah says:

So, this IS the Marilyn that was in the cover story. I got it figured out now.

I hope she keeps giving us updates. I don’t know much about amputees but I’m willing to have my eyes opened.



Betty says:

To be honest, I never know what to say to somebody who’s missing a leg or an arm. It makes me uncomfortable, like maybe it could happen to me and I wouldn’t be all that brave like the people that I see. I DO look the other way and know i need to get over it and be a big girl and face real life. I think maybe reading this post today was a step.



Shari says:

Marilyn, you are my hero. I love you 🙂



Marilyn says:

Karen @ the Hood, I feel for you, girl. My daughter (age 25) and her boyfriend both work their asses off and have no benefits whatsoever. My daughter is currently ignoring a big hospital bill (along with a $900 ambulance bill!). She has no choice. She can live and eat and drive to work, or she can pay that bill. I don’t blame her.

Betty, what you feel is perfectly understandable. People are uncomfortable with whatever is not the norm… We are barraged daily with images of only the sexy, beautiful and ultra desireable men and women. If someone is overweight or too skinny, or too short, even THEY get looked down upon. If you see someone out there missing a critical limb, it’s even weirder. What sucks is that we buy into this crap.

To all: It takes no bravery to go through what life hands you. What does take some balls is to go through it without turning to hate. I lingered in the “hate realm” for a few days. I know what it is like to just want to punch someone for having two legs, or rip a shrink’s nads off because he didn’t want to give me zanax while I was awaiting the amputation…

The biggest triumph I own up to today is that I’ve grown from my experience. And THAT, I think, is the entire goal of this lifetime. (And any other lifetimes we may go through.)



Karen @ the hood says:

You are sooooooooooo wise, Marilyn. I’d like to meet you someday 🙂



Marilyn says:

Karen (@ the hood), I’m so not wise, but I have learned a lot — by necessity.

Unfortunately, I have some lessons that are still mine to learn. These will, of course, be the hardest of all.



niki marilyns' daughter. says:

my mother is a very very loving soul, and i dont know why we are here on this planet, but i do know one thing… if she ever did mess up in this life, she has already learned from it and i think will be very accepted into ‘the next level’ of life that is.



Karen says:

Hi Niki,

In case you don’t know, your mother has a lot of friends at this site 🙂



Marilyn says:

Karen,

My daughter Niki made a suprise visit to me today. I showed her this blog and not only showed her my entry, but also the Raped essay…I didn’t have time to show her all the entries as we had so much to talk about, to share, to state.

She totally surprised me by posting here. She is my reason to continue… This will be made clearer when you read my LOL column coming up (I think Larry has moved it to Nov 1). Niki and I are bound by more than blood. We are bound by a bottomless grief that will never be taken away or healed.

God bless all who love….



Astrid says:

Marilyn, I’m 29, very physically fit, and I lost my leg when I was 12. But I’m no super crip either and lots of things prevent me from doing things that the temporarily able thinks are easy for amputees. Everyone is different, and fitting a prosthetic and living with it is really hard for some of us. I stopped wearing a prosthesis when I was in college because it just would not work out well given the condition of my leg and pelvis.

I get those kinds of comments all the time and it can really hurt. All the time I get criticism from people about not wearing a leg, as if they know something that I don’t I want to scream every time some super crip shows up on TV who can do calculus and invent new methods of controlled nuclear fusion in her head while running four minute miles in between home schooling her gifted kids, and who moonlights as a brain surgeon at night to pick up extra cash, unless she’s operating on poor kids for free.

People just don’t understand that fake legs are not magical, and that most of us have a lot of different nasty little problems that come and go without warning.

Here’s to us regular amps.

-Astrid



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