22 11 2008

I’d like to discuss a book I recently read called SICK GIRL.  The book is an exhausting complainers book by Amy Silverstein who at age 24 suffered congestive heart failure and then received a heart transplant. She ends up living far beyond the expectations of all medical know-how and comes to write a book 17 years post-transplant. This woman is EVERYTHING I NEVER WANT TO BE.  She complains non-stop and is constantly angry at someone, anyone, everyone.  Amy whines on and on about how she refuses to take prednisone because it’ll make her fat.  GET OVER YOURSELF, AMY! She’s certainly more than allowed to complain – and I certainly had the choice of putting the book down…but it was her outlook on things – that drove me nuts.  Amazingly, she got engaged to her boyfriend the moment she rolled out to the ICU after her transplant.  As she writes the book they are still married 18 years later.  Her hubby’s name is Scott and he must be an absolute saint to put up with this nagging, annoying, self-centered twat.  She reminds me of everything i never want to be as a patient or mate.  She feels the world revolves around her although her huge realization is that when she dies life will go on without her.

So why am I bringing up an author/person that I dislike so much???  Because reading her book reminds me that life is all about choices – the small ones we make everyday.  It’s up to ourselves to find peace within ourselves about our disease(s).  It’s our mission, I feel, to remember that EVERYONE is going through some hurdle or difficulty.  It’s our duty, in my opinion, to know deep down that we are not being singled out for torture – everyone has their own cross to bear – as the saying goes.

Amy is outrageously self-righteous and too smart for her own good.  She believes that a doctor’s job is to  make her feel better mentally, to put her at ease.  This is very far off from my view of what a doctor’s job should be.  She makes it seem like she’s the only human being that has ever suffered; that’s ever gone through a battle of her body. Read more of the review Here –>

She makes it seem like no one on earth could ever understand her and that no one could ever be as brave or courageous as she is.  She’s definitely the type to say Why is this happening to ME? Thankfully, I have never ever said/thought that because I know my suffering and pain is just one of many billions of citizens of earth that go through something equally painful, emotionally or physically.  Take for example one of my brothers.  He’s paranoid schizophrenic.  What a truly terrible disease for someone very smart like him. He’s trapped in a body and mind that won’t allow him to do anything.  His voices are so loud he is literally paralyzed into staying home.  He’s so smart and knows it – but can’t use any of it.  He also has gout and insomnia.  Incredibly he has such a positive outlook on things most of the time.  It’s a mirace and I can say that only love has kept him alive (from his entire family – it is a massive group effort).

Amy reminds me of someone who would have an intrathecal pump like I have and she’d bitch about how the pump would make her look instead of being simply grateful the pump will get her out of unbelievable pain. Without the pummp I would be dead or bedridden.  She kvetches that her medicines (immunosuppresants) are like toxic hell.  She moans and groans about how the immunosuppresants set her apart from everyone else and no one else could possibly understand what it’s like to have an immunosuppressed body – oh, and the awful cancer and diseases you can get due to the immunosuppresants.  She fails to think for even a moment that there might be others out there that are in such horrific daily pain that we are on morphine 24-7 AND immunosuppresants – but it still doesn’t give us the right to be a prick to everyone else!!!

I will give it to Amy that I have not had my own heart replaced by another persons, but I refuse to give in to her pity party where she feels she’s the only one going in and out of the hospital and being forced to hide the pain from friends and loved ones.  I believe everyone with a chronic disease is forced to hide the reality from everyone else.  I feel it would be unfair to expect another person to understand the type of pain you’ve gone through if they’ve never had a serious illness.

I read the book in full because it was a wonderful life lesson for me on how to be a good patient by reading an awful patient’s perspective.  It helps me to know what other types of people my doctor must deal with all day.  It takes her 17 years to realize that being nice to the hospital staff is a kind thing to do.  Life is not just about you Amy!!!  Perhaps because my mom is a nurse, or maybe just because I see nurse’s as any other human being, I would never fathom being rude to a nurse. They are understaffed, underpaid, and overworked – plus they have to deal with the hospital bureaucracy to boot.

Finally, it got me thinking about the different mental states that I’ve gone through myself with 2 chronic diseases?  (or is it 3 or 4, I lost count).  Naturally there’s the “sorry for me” stage, but for Amy it lasts her entire adult life post-transplant.  For me personally, i never let go of my dreams and I’ve always continued to work moments before surgeries and during hospital stays.  I have refused to allow my diseases to become a “person” in my life as I’ve once read that another person didwith open arms.  I simply can’t give them that much power to feed off of.

There is one page of her book that I do like when she’s 17 years post-transplant, being upset about a lymphoma cancer scare… these are all things that are very real for an RA patient.  It’s when her husband has finally taken enough from her and is at the end of his rope with her.  She doesn’t even bother to imagine how this has all affected her husband – only herself up to this point.  The cancer scare has made her want to totally give up because early in her life she told herself she’d only give the strength to go through this one medical issue.

When a second possible medical issue came along she decided to throw in the towel – she isolated herself and felt everyone was the enemy. She just came from her appt after screaming at Dr. Davis and threatened suicide. (To Amy’s credit –  I’m sure all of us have thought about doing this or at least threatening it at one time or another when the pain is too much to bear). She says,You should be mad at Dr. Davis not me! In a hundredth stroke of genius her hubby says,Of course [Dr. Davis] can’t [save you]. No one can save you.  It’s not fair to expect Dr. Davis to make everything okay.  You had a heart transplant and it’s been 17 years.  What do you expect?

I would only recommend this book if you want to see how destructive complaining can be.  Also, I think it was very helpful for me to see the ill person from the caregiver’s perspective.  I admit to saying/thinking some of the same things she has.  For example, the isolation she feels from trying to hide the pain and knowing that hiding the pain has a catch – then people don’t think it’s nearly as bad as it is.

This review is dedicated to Scott, the amazingly patient and sweet husband of Amy Silverstein.  You are a star! – Love Sasha xoxoxo




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