Monthly Archives: April 2013

The Good Die Young.

I’ve tried writing this several times tonight and the words keep failing me.

There is no good way to explain away how you feel when someone you’ve admired and damn near worshipped dies.

There have been people, people who happen to create, that I’ve really admired who have passed throughout the years. Not one I would say who really went deep inside my heart and soul in one way or another.

Until today.

This morning I found out that one of my longtime idols-someone who I think about often, whose music I’ve listened to regularly for nearly 30 years, who has influenced the way I think, the way I express myself, and even my style- passed away yesterday from a many year struggle with MS & Breast Cancer. She was only 53.

To say that I felt like the world underneath me fell out for a moment sounds a bit dramatic, but to be honest it’s what it felt like this morning when I was informed by my husband who had read about it before me.

The woman who had mystified me and drew me in to her larger than life persona, glorified through her music & her videos in the early-mid 80’s, had just left this world.

I want to make this more of a tribute, I just don’t know how.

I’ve consumed enough wine tonight to dilute the tears that have been falling since this morning.

There is so much I could say, but so much that might not make sense. Sometimes loving one of your idols means that you cannot construct a proper goodbye. Or at least an understandable one.

Over the weekend I embarked on a project that was initially a blog post that I soon realized would end up being a 3-4 part post. This wonderful and astounding woman was to play a huge part of it.

In fact I was up until 2 am part writing, part drinking, part researching some facts. I found myself up late looking at some of her videos, and reading bits of what her life had been like the past few years. You hear so little since she had been ill. Which is understandable. When you have an illness(s) like she had you tend to either be a bit vocal about the brutality of it or you keep it to yourself.

For the most part it seemed she had done the latter.

From reports it appears she died that next day. Hours later. This devastates me in a way I can’t explain. She was in my head before I went to sleep. And many hours later she fell asleep for good.

I tried writing this earlier tonight with descriptions of everything she had done, giving you a play by play account of her career and some of what she opened up for me as a wide eyed 12 year old in the onset of the MTV years. This doesn’t seem right somehow. What I can do is give you why I loved her.

Christina(Chrissy) Amphlett of the Divinyls broke into our worlds, us children of those early 80’s, via our television sets with her (then) daring outfits and lyrics and attitude that showed how strong and tough a woman could be without losing her feminity. I was a wide eyed teen looking for someone to show me a different world, something that broke me out of the conformity of my middle-class suburb. Where I never quite felt like I belonged, where I knew there was more to believe in, more to get out of life. Her video persona I would learn years later was something so much different then who she really was. And a part of me was relieved. She had a shy side just like myself. But also a side that when needed knew to fight for what was believed in.

I admit it was her red hair and wide eyed pout that I imitated throughout the years. And even today, as recent as two weeks ago, when going back to red it was her picture I carried with me to my salon. 30 years later she’s still my icon of beauty and power that I look up to.

In the early 90’s the rest of the U.S. finally paid attention to what I had seen those years before. That’s when the band had their first breakout hit. Unfortunately the song wasn’t taken seriously and is considered to some to be a one hit wonder, which if you know the band well you know that isn’t the case. There is so much depth & strength to the songs they have written throughout the years.  I remember when the song came out(I Touch Myself, for those who don’t remember) I had the fortunate experience of friends pointing out I looked like Chrissy. I remember thinking that was the greatest compliment I could get.

Several years later the Divinyls disbanded. I was still a fan.

Then about ten years later I read that Chrissie was diagnosed with MS. Knowing someone who has MS, you feel as if you’re part of a special club. MS is an illness so mysterious in symptoms and progression that only those of us who have it understand it fully, coming across another person who has it immediately leaves you with the feeling that you know that person.

For me to find out that Chrissy had MS, something I had been diagnosed with since the early 90’s & probably had for years prior, felt somewhat terrifying and calming. Here was someone that I grew up loving and admiring. Who to me was the epitome of strength, who helped me during the early years of trying to figure out who I was, and trying to figure out how to be a young woman, she had this bitch of a disease that I had been dealing with for decades. We were alike. And if I had my way I would have reached out to her to help HER, because I knew what it was to deal with this damn thing for so long I no longer felt like a stranger to it.

But she was untouchable. Then I read she was diagnosed with breast cancer. Then 2 yrs ago I sat in my Neuro’s office and came across a copy of Neurology magazine and she was on the cover. I sat reading the article, contemplating stealing the issue to take home. My good side won out and I couldn’t do it. Right now? I’m wishing I had it on me. Because that day reading it I felt a bit more empowered to soldier on. I was feeling down on myself for having a setback, a flare. She gave me some hope.

———

So this morning my husband told me the news and I dropped what I was holding and could barely speak, I walked to the computer to look and saw the news.

All day I constructed sentences in my head of what I wanted to write. I knew I had to write something. But by the time I sat down here it all washed away.

All I know is that my heart hurts tonight because someone who had done so much, been through so much, and touched so many people is gone. Way too soon.

I’ve sat here tonight listening to her songs on repeat. There are too many songs of hers I could list as being my favorite, however the one that really cuts through my heart is the song “Human on The Inside”. To this day I have a dream of performing this song live. However no one will ever compare to Chrissy.

Goodnight Chrissy Amphlett. I’m glad you were in my life all these years. And even though you’ve left the earth, you’ve still managed to touch so many people, and through your words and your beautiful voice you’ll continue to do so.

Thank you.

Chrissie Amphlett

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It’s been a while.

It’s been a while.

I don’t think I’ve written in a few months. And for that I’m sorry.

Yet I’m not.

The last three or four months have just been impossible to explain.

There really is no good reason. Sure I had the stress of dealing with the cookie sales for Daisy’s/Girl Scouts( I know it seems silly, but honestly it’s a pain in the ass and took up way too much of my time) yet the stress of some of it seemed to combine with some other small things going on to create a perfect storm with my health.

Last I wrote was not long after Christmas. I’m not even sure now what was said or written.

I just know I lost my passion for writing. For feeling.

Around that time I seemed to be dealing with more and more symptoms relating to my MS. Symptoms that made me feel like I was aging quicker then I should be. Many of them took the form of emotional  which then transferred to physical, causing my body to want to shut down. I found myself wanting to do nothing but burrow under the covers and watch TV series on Netflix or On Demand while the kids were at school.

The effects of this were that I was continually fatigued and weak. I felt more ADD then I ever had before. I know I’ve always dealt with it since I was a kid, I was just never diagnosed. My mind goes from one thing to another in rapid speed. Sometimes I’m convinced it’s why I have such a curiosity about everything under the sun. And why I know a bit about everything but never more than that “bit”.

It was the beginning of March when I finally forced myself to the Neurologist’s office for the first time in two years. Even throughout all of my flares I never went in. If it were one thing I learned over the 20 something years I’ve had this illness it’s that going into the Dr’s office for every odd feeling meant a 50 dollar payment and the possibility of being put on a medication. So for those reasons I chose to deal with the symptoms & issues as they came along. Despite the worsening of the flares, and their frequency.

However the reason I went into the Neuro’s office was due to the fact that for weeks I had this continuing issue with my eyes. It kept feeling like the muscles were pulling down my eyelids. This could occur at most any time of the day no matter where I was. Most often it was when I was in the car. So many times within a couple of weeks I came close to getting hit when I couldn’t see the car coming from the right or left because of the direction my eye was pulling down. It was my wake up call, I couldn’t put these issues off any longer.

My mother took me & my youngest that day and she had yet to see the full scope of what was bothering me.

Then when we were sitting in the Doctor’s office I could feel the change in my eyes and told her to look, it was then she exclaimed with her hands flying to her mouth ” Oh my god, one eye is pulling down and the other is looking the other direction”. Yes. This was unusual and frightening.

I went in and talked to the Dr and she admitted that my attempt at the MRI months prior at least showed that my lesions had increased. She said that there wasn’t more to say then well yes, your MS is probably getting worse.

Now let me back up here.  See, for years my symptoms and tests showed that it was there and it was perhaps progressing at a normal speed & perhaps I would never go much farther than it.  In fact 2 years ago I sat in my doctor’s office and she tried to sell me on the medications once more only to tell me that really it’s been nearly 20 years so at the rate I’m going she didn’t think I would get much worse.

So imagine me sitting here laughing at this right now.  This visit, this one I had March 1st, she sat there gravely after examining me, telling me that my physical state has shown a change(despite my flares & MRI’s my exams in the office were always shining). There was the distinct tremor in my left hand(it’s been there for a long time). My eyes weren’t focusing and following properly. My reflexes were “ok”. My walk was off. Ok. Words often escaped me. As a writer this a waking nightmare, but I’ve discovered that speaking is harder for me then actually writing. Though my ability to type has slowed down.

The words she spoke next were not surprising, and this time after all these years I knew she was right. I have to, no she said “you don’t understand, you HAVE to” go on the medications.  I didn’t even blink. I agreed to it. We talked about a couple of the different drugs that are offered to those of us with MS. For so many years there were only three, the ” ABC” drugs. Now there are several more including one that was just approved nearly two weeks ago that is being called the “wonder drug”.

I left the doctor’s office not sure what to think. I relayed as much as possible in the car to my mother, even though my 6 yr old was sitting in the back seat. I went home and told my husband . I made a few phone calls not sure if I could accept what was being laid down in front of me.

It’s funny but I followed my general protocol which is to ignore anything even remotely disturbing regarding my health and continue on as if nothing was wrong. However I also sat on my computer for a few hours and researched some of the medications that she had brought up to me trying to decipher if any of them would be right for me. Later that night I broke down crying on the phone to my mother. She told me she was waiting for this call, she said that earlier I was taking it all too well.

I was hesitant with the Copaxone at first due to the fact that it was a daily shot, however the more I did the research on the oral drug Aubagio some of the side effects weren’t things that I wanted to ever encounter. One of them being hair thinning and loss. While yes that is the most shallow of reasons not to take a drug, if I’m to be left with any dignity whatsoever in my remaining years I would like to retain my hair for as long as possible. I’m sorry for that vain moment, but it’s mine.

The more I did the research the more I learned that out of the injectables the Copaxone had the least amount of side effects. And that eventually in my quizzing of other members of the MS groups online that I belonged to there seemed to be an agreement in this area.  I called my doctor the following week and made a decision.

The copaxone is currently sitting in my refrigerator. I’m currently unable to schedule an appointment with the medical company to get them to send a nurse to come show me how to inject the medication and get this started.  I know this sounds misguided and wrong but what it is is that it is the end of the year for my kids and there are many events coming up that would interrupt any time I would need to take off.

I don’t know how the side effects are going to hit me. I remember how they hit me when I was on the Avonex years ago, and that was enough to scare me off for years. In fact I swore that the medications did more harm than good. And to some regard I still stand by that, I think some cause side effects that end up being treated by other drugs which lead to complications.

I will start the medication probably the end of May. By that point my kids will be out of school and my mother has offered to help me out with them should there be an adjustment period.

So it comes down to this. Something I had hoped would never happen.

However I’m no longer scared. At least not like before. I’m no longer who I thought I was, I’m weakening. Something I prayed wouldn’t happen for years. But it’s happening now. There are days and weeks where getting up and functioning seem like something in the distant future.

Just this week the excessive rain brought me to a standstill. I went further into this depression I slip into when I don’ t feel myself. I’m angry and hurt. My life isn’t want I planned it to be. But I will tell everyone NOW, there is no internet link you can send me that will make me think that I can prevent this or heal myself. Thank you, but no your information is incorrect and unwanted.  I will get past this it just takes time.

I’m going to try to write again. I’m going to try and keep this place up to what it should be. Well I should, I just paid for it to be renewed for a year.

Music has always been my love but I neglected it. Right now it’s saving me. Going back to what has always made me sing and dance, made me laugh and cry is driving me to go forward.

So soon, I’ll see you again, or talk to you again.

 

 

 

 

 

 

 

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