Friday, October 30, 2009

Sickened: An Aberration Story

If we can tweak our expectations of what life is supposed to be about, we can perhaps be satisfied ...

The bond between mother and child is often hailed as the most critical in our development. So what happens when that bond is broken, falsified, or sickened? In her book, Of Woman Born: Motherhood as Experience and Institution, Adrienne Rich writes, "The loss of the daughter to the mother, the mother to the daughter, is the essential female tragedy." I think about this a lot due to the ongoing struggle I have with my mother.

Our mother is our mirror. If that mirror is distorted in some profound way, we lose a key component, which is extremely difficult to find later. As for me, I trudge on, looking for it here and there. My search led me down a dangerous path more than once, but it's also caused me to view the world in a unique way. It's made me try to see it all without a mirror; it's helped me find my own sight. When there is no mirror, or it's dirty, distorted or broken, everything feels like a haze. Everything is muted or twisted out of shape, somehow unreal. You don't know who to trust or how to love.

Last week, I had the wonderful opportunity to spend time with Julie Gregory, author of Sickened: The True Story of a Lost Childhood (Bantam). Julie grew up with a mother who literally sickened her. I read Sickened a few years ago, and it shot to the top layer of my all-time favorite reads. I identified with her story in many ways, and marveled at her courage, depth and amazing talent. When I began posting interviews on Aberration Nation, Julie stood out as someone I'd love to include. I now count Julie as a friend, and am thrilled to share her story with you.

Note: I usually do my interviews by email, but due to Julie's schedule, I interviewed her by phone. Please keep in mind that the answers below are my interpretation of her thoughts.

You had an unusual childhood that revolved around Munchausen by proxy. Can you explain what that is and how it molded your childhood?

Munchausen by proxy, which has been modernized to Illness Falsification, is one of the world’s most dangerous forms of child abuse. The name was changed to help people better understand what it is, and relate to it more easily. Many people don't know how to recognize it, and no central data exist on it nor is there a specific reporting agency that handles it. It’s not an illness. It’s an action done by a perpetrator to a victim. Injuries or illness can be induced or made up by the perpetrator. As in the case of rape, there can be many underlying illness and reasons why illness falsification is perpetrated.

As for how it molded my life, first let me say that anyone who has an abusive childhood has no other point of reference for comparison. When a child is given medications for fabricated illness, they eventually feel sick and don't have any idea what's going on. It takes a long time to grasp that this person who made them sick is their mother, the one who is supposed to be taking care of and protecting them.

I loved my mother and wanted to please her. I was very confused about how to do that and was ill because of the medications she had me taking. A brief moment of illumination at 13 made me realize that something wasn’t right. The psyche shields abuse survivors from the horrendous reality. Otherwise you'd go crazy. It would be like a daily rape that you can't deal with. The psyche saved my life. As an adult, I don't like health care professionals, and don't trust them. I don't do well with dentistry and medical treatments. Anyone who works on me in medical way has to wear kid gloves. My childhood experience has given me a fine-tune antennae for perpetrators. I don't think the mentally ill should have children in their care. The perpetrators of illness falsification are like pedophiles and should be locked away. I now work on this issue every day.

Your mother's illness put great strain on the family dynamic. How did Munchausen by proxy also touch the lives of your father and brother?

There's a whole spectrum of family dynamics that are considered normal. And then there are these really bad dysfunctional families. That’s what I had. Dad wasn't normal either; he also suffered from mental illness. My parents were two mentally crippled adults who came together. They attracted each other. People are attracted to those who share their realm of thinking. My mother was aggressive and my father was passive, which made their dynamic work. What my mother did didn’t affect my father because he was so blah.

After Sickened came out, he told me a tragic story that truly gutted me. I was sitting in the Target parking lot talking to my dad on the phone. He said, “You know Sissy, there might be something to your book after all. Do you remember when your arm was out of socket?" (I broke my arm in grade school but I didn’t remember this socket thing.) He said, "You must have been about one and a half. Your arm came out of socket. The doctor asked me what really happened. Your mother said that you fell off couch, but the doctor said that falling off the couch wouldn’t cause an arm to be completely pulled out of socket. He thought your mom did it to you. But I told him that she was my wife and I was going to believe her.” He then said he wished now that he’d paid attention. This made me cry for myself. I was just a baby stuck with these ill people who shouldn't even have had a plant to watch over, much less a kid.

As for my younger brother—we came from a family where males were much more celebrated than females. Just like the some other cultures, girls were considered good for sex and cooking, and that was about the extent of it. It was archaic. That was the dynamic. When Mom turned on my brother, Dad stepped up for him in a way that he never would for me. Dad still has this mentality. He actually took a stand and physically abused my mom at one point when she tried to talk to him about my brother being ill. Mom backed off and then turned to getting foster children.

As children, who love and depend on our parents, it's almost impossible for us to grasp the truth when we're forced to exist in a lie. It's a type of brainwashing that is extremely difficult to break away from on many levels. How did you eventually come to realize your mother had a major problem, and that her problem had horribly curtailed your life?

The realization was incremental. I'm a firm believer in the Stockholm syndrome. Consider that an abusive situation is like a prisoner of war situation you don't realize is happening. The lure of family is so strong. Many adults do eventually cut their abusive parents off. No one ever says to the child, “I'm getting ready to do something very bad to you.” Abusers have a highly sophisticated way of rationalizing the abuse. The child begins to feel responsible; remember, they have the heart of a child. The parent trains the child to be their alibi.

How common is Illness Falsifciation, and what are the top three signs we should look for to make sure that the children around us are not caught in this trap?

Larry Brubaker, who is retired from the FBI, used to do Illness Falsification workshops. He felt that these cases were at epidemic levels but is still considered rare because there is no central reporting agency. Common methods used to identify abusers don't work in these cases. You have to take kid away for quite awhile and observe them. You can’t let the parent near the child. It's complicated to do this, and services aren't equipped for it or savvy about it. The common scenario is removing the child from the home for ten days, and this doesn’t work with Illness Falsification.

Illness Falsification is not just focused on physical illness. It can also take the form of psychiatric or developmental obsession. For example, a mother wants her kid in special education, but the kid can read. There have actually been cases where a child is unable to read in front of mother when they can read perfectly fine at school. The teacher invites the mother for a conference and asks the child to read. With the mother present, the child can’t read. So, you see, this can happens on all kinds of levels. Don't think it's rare. There are both subtle and extremely dangerous cases. Mothers have had their children's organs removed and they’ve died.

Here are the top 3 thinks to remember about Illness Falsification:

1) Watch for a mother who is constantly talking about the inadequacies of her child with everyone. This can be physical, mental, or developmental. She talks about it at the child’s school, with her friends, at church, at the grocery store, etc. She seems obsessed with inadequacy of the child and speaks about it in front of the child as if they're not there. She always says that something is wrong with kid.

2) Watch for a child who seems overly enmeshed with the mom ... not developed, pale, malnourished, and quiet. Like a victim of kidnapping with the perpetrator controlling every aspects of their life. The child seems like an appendage to the parent.

3) Remember that when a child is removed from the situation, they need to be given two or three weeks without intervention from the mother. If you're dealing with Illness Falsification, they will begin to improve. The issues they supposedly have become nonexistent. Lethargic kids come to life in the foster home. Wean medications off. Medications can make kids sick so you have to be careful.

Aberration Nation is about celebrating what we learn and how we grow from some of the most awful things that befall us. Now that you have survived and escaped the life you faced as a child, are there any positives you have pulled from the experience? Has it, in any way, help created the best parts of who you are today?

I want to be able to tell you that it has helped me, that my philosophy is that good will triumph over evil, but it's not. Not yet. I was beyond depressed for so long. I’ve become jaded. I’m not able to feel the positive of all this so much now but I do believe that I’m still at the center of my journey. It takes a lot of time.

What do you say to yourself these days when things don't go well? Do you have a special motto or words that you live by?

I need to find some words to live by. I'm still so in the middle of trying to figure out what life's about and what my personal philosophy can be. I see that everyone is in pain. We need to sit with it. If we can tweak our expectations of what life is supposed to be about, we can perhaps be satisfied in a new way. I love Pema Chodron’s book, When Things Fall Apart: Heart Advice for Difficult Times. It’s become my manifesto. It helps me come to grips with disappointment.

Wednesday, October 21, 2009

Cancer Vixen: An Aberration Story

Do you ever get sick of being sick? Well, I've been sick for the last two weeks (sinus infection, cold, sore throat, cough, aches and pains, etc.).

No, I don't have the Swine Flu.

Nevertheless, I'm sick of it. I want my energy now! (Stomp of foot.) I can't slow down or hold back. I can't stop and take a nap in the middle of the day! Life goes on and I'm all about moving on. As my southern relatives used to say, "Dad gum it!" And as I frequently say, "This is crap!"

But ... every time I complain about all these aches and pains, I feel a little sting of guilt. That's because I know I shouldn't complain. After all, I don't have pulmonary fibrosis, spina bifida, MS, narcolepsy, or cancer. These are just some of the illnesses/conditions we've heard about on Aberration Nation. My runny nose is simply a drop in the bucket compared to what others go through every day. Shame on me! And shame on you if you've got a nagging cough, too.

When I was a kid, my sweet grandmother, Dorothea, used to say, "Be thankful for your health." Most of the time, I'd smile and blow it off. I was fit as a fiddle, and healthy as a horse. I could do a cartwheel and the splits at any given moment. I didn't foresee any major health issues in my future, thank you very much. Ha!

Well, the older I get, the more I realize just how on target my little Granny was.

Now I'm long overdue for my first mammogram, still assuming that when I finally get there, it will come out clean as a whistle. Well, October is Breast Cancer Awareness Month, and the Cancer Vixen herself, Marisa Acocella Marchetto, has reminded me that life doesn't always turn out as planned. You can be fit as a fiddle, riding a high horse down main street with crowds cheering you on one minute, and falling off into a puddle of crap the next. It happens to all of us. If not today, perhaps tomorrow or sometime in the next thirty years. We're not as indestructible as we thought at sixteen.

It happened to Marisa. This is her story. Reading it has convinced me to finally get off my fanny and go for that mammogram so it doesn't become mine. Maybe I'll wear high heels in honor of Marisa. I'll definitely be wearing my lipstick.

At a time when you seemed to be on top of the world, life kicked you in the rear. Tell us what happened?

Just three weeks before I was to get married for the first time at 43 to the love of my life, Silvano Marchetto, just when I was asked by David Remnick, Editor-in-Chief of The New Yorker, just when I found my wedding shoes and bag (hey, my Smother is a shoe designer - I get dressed from the feet up), I was diagnosed with breast cancer. And on top of that, I didn't have health insurance!

I felt like the Electrolux of the Universe sucked me into a Black Hole.

How did you initially cope, and how did cancer impact your plans?

It was as if the Grim Reaper, that nasty boney Bitch from hell, knocked my door down, getting in my face saying "CANCER YOUR WEDDING! CANCER YOUR CAREER! CANCER YOUR LIFE!

Naturally, I was a bit bummed out by that. Days later, while on GLAMOUR deadline, my editor, Lauren Smith Brody, called me. When I told her the news, her second reaction was "Can you give me four pages on it?"

Next, I went for a walk with my BFF, Bob Morris. When I told him that Glamour wanted me to write about it, he asked me what I was going to call it. I said, "Breast Case Scenario." "That's a terrible title, babe," he said, then looked me up and down. I was naturally a bit bummed to say the least, when he told me I looked like a victim. "Where's my Vixen?" he asked, and then advised that I get rid of my dirty sneakers, put on my 5-inch heels, and call my piece "CANCER VIXEN."

So, that's what I did. And I wore fabulous shoes to chemo and my mantra was "Cancer, I am going to kick your butt, and I'm going to do it in killer 5-inch heels."

Did your priorities change, and if so, how?

I used to say I was hung up on the "S.S.S." (the SUPERFICIAL STUPID STUFF). Getting the right bag, the right shoes, etc. I was a total fashion victim. Now I dress to make myself feel better. I think that if you feel good, it strengthens your immune system. The stronger your immune system, the healthier you'll be and the less likely you'll have a recurrence.

As a highly successful cartoonist who had written a graphic novel, what inspired you to chronicle your battle with cancer in a new graphic novel, Cancer Vixen?

After Cancer Vixen ran as six pages in Glamour, I felt it was just the tip of the iceberg in terms of what I had to say. Luckily, I was offered a book deal by Knopf.

How did sharing your aberration in Cancer Vixen influence your life and attitude?

When I first went into Breast Surgeon Dr. Christopher Mills' office, he did a sonogram. When I saw the print-out, I thought it looked like a black hole. Dr Mills had a different take. He said it looked like a pearl. I was conscious enough at that point to realize that I had gone into negative space ... and maybe that's how I viewed life. So ... I tried to focus on the pearl. Pearls are symbols of wisdom.

I'm sure there were some horribly low moments. How did you navigate through those times?

I never used the word my in front of cancer. I never wanted to own it. I also felt that when I wrote about everything--EVERYTHING--I was taking the situation off of myself, and putting it on paper. That process was enormously healing. Only later I found out about the phrase "objective journaling,"which is what I was doing back then. For this reason I say, "Get it off your chest girls! Write! Write! Write!"

Was there any particular method, attitude, or person that got you through?

My attitude: Don't be a Victim, Be A VIXEN. That helped. Writing helped. And never underestimate the effect your loved ones can have on you. I am happy to report that Silvano and I got married three weeks later, just like we said we would.

You know the "Law of Attraction?" Well, I was practicing the "Law of Distraction." Instead of focusing on the fact that I had cancer, I focused on the fact that my wedding was coming up, and I needed a dress. Instead of focusing on the cancer freak-out, I had a deadline and focused on that. Instead of focusing on the chemo IV in my hand, I looked past that at my spectacular shoes, which made me feel better.

It's like finding the pearl in a Black Hole.

Now you promote cancer awareness in various ways. Besides writing Cancer Vixen, what was the impetus for continuing your efforts to support the cause?

I have the CANCER VIXEN Fund, and we raise money for uninsured and under insured women so they can get screened for breast cancer. When I was writing Cancer Vixen, I came across this fact: 49% of women who are diagnosed with breast cancer have a greater risk of dying from the disease. Here's the good fact: if you find breast cancer early, you have a 98% survival rate. So, it's important to get screened. It'll save your life.

The Cancer Vixen Mission: NO BREAST LEFT BEHIND!

It seems that the older I get, the more I hear of women being diagnosed with breast cancer. What are the top three things we can do for our friends, neighbors, relatives, etc. who are faced with this terrible situation?

This is Breast Cancer Awareness Month so ...

1. Tell your mother, your sister, your aunt, your cousin, your friends to all get mammograms, or if they're too young--to do a self exam!

2. Diet: Don't drink milk. It's full of antibiotics and hormones. Girls are being diagnosed at an earlier age, and some Oncologists feel it's because of the hormones in Milk ... and also, chicken. Eat more veggies and fruits. A plant-based diet is best.

3. Exercise: Extra weight = Extra risk

What can you share with us in terms of the positives that dealing with breast cancer brought to your life? Did you find use for the lemons life had flung your way?

As my mother said, "When God gives you lemons, make Limoncello!" But just don't drink too much of it ... drink less- live more! That's what I did!

Sunday, October 4, 2009

Multiple Sclerosis Mess: An Aberration Story

My illness was an opportunity to remake myself into something better ...

Despite the premise of this blog, I still wonder why the hell we have to go through such %#@*#% crap. The human condition, the human body, the mind--they all push and push until sometimes we just can't help but wallow. (I've certainly wallowed plenty.)

We also get angry. And in those moments, positive thinking infuriates us. All we want is to be heard, to be recognized for whatever the hell pain and discomfort we're facing. "Look at me!" we want to scream at the faces around us. Sometimes we do scream. And people look, but sometimes they don't. Sometimes people can't hear or see us because they're too busy developing their own scream. So what are we supposed to do?

Change!

Who cares what the change is, just pushing on is sometimes the answer. Life develops. It may be the ones who can't or won't change, the ones who get perpetually stuck, who are the biggest sad sacks of all. They may seem happy, but standing on the same spot day in, day out sounds like torture to me whether it's emotional, intellectual, or physical. Move! Find God, find yourself, stretch yourself, let your mind walk, skip, jump, run! Do something about it. I won't lie and tell you that it's easy but I do know it's possible.

This week, I've been reminded of this concept and I intend to keep moving. I will not fear change, or become stuck in what I may have thought was enough of a change the other day. We all must find our own path, but perhaps we must also find our own mode of transportation. I think I'm close to finding mine. For Chris, it was multiple sclerosis (MS) and Jesus Christ.

After being diagnosed with MS, a poor attitude cost Chris his marriage. He now hopes that others might learn from his mistakes, and avoid allowing a disability and feelings of decreasing self-worth to destroy their most precious relationships.

Why is it that some with MS do well with the disease while others do poorly?

That is something that I certainly cannot tell you. Physicians and scientists have struggled for decades to find that answer, and are just now beginning to see progress, and recognize and understand those things for which they are searching.

What I can tell you is this. There is medical proof that demonstrates how worry, stress and anxiety are damaging to the human body at the cellular level. I've learned from my own experience with chronic illness, and the roles played by worry, stress and anxiety, that worrying and stressing about the future only ensures that the future (at least the future for which you had hoped) never comes. Worrying about finances, college tuition, adequate life insurance and more--all necessary for a bright future for my family--resulted in so much turmoil and strife in my relationship that my marriage was destroyed. Life is too short. Live for today. Like the Bible says, Don't worry about tomorrow. Today has enough worries of its own.

After your marriage ended, you decided to write a book. Why?

We all have defining choices that shape our journey and ultimately, our destiny. The synergistic effect of two specific issues inspired me to begin writing my book, Life Interrupted, It's Not All About Me. The two driving issues that pressed me to begin actually putting pen to paper were initially selfishness, and the God-given physical and mental ability to do just that.

Let me explain. You see, when I started writing the book, it was my intention to help myself by clearing my name, so to speak. My divorce was bitter and my ex-wife’s lawyer embellished so much that I wanted friends and family to know the truth. That’s when God intervened and showed me that rather than writing a book for one person, myself, I could write it for millions around the world who may be undergoing a similar situation. A situation of overwhelming gloom--an inability to see the future--which is probably best explained in my article, The Gang's All Here. MSfocus Magazine published the article in 2008 (see excerpt below). The entire article can be viewed on my site.

My marriage of ten years began dissolving when the “Monster” invited his friends to live in my house. If you have MS, I’m sure you’ve met the gang. There was the kingpin, Stress, his best friend Anger and his twin, Misdirected. Of course, Feelings of Worthlessness was there and his brother Feelings of Inadequacy who brought his best friend Low Self-esteem and his sidekick Depression, who hung out with everybody’s buddies, Worry and Anxiety. As usual, Communication was a no show, but sure enough his sister Miss-communication popped in and overstayed her welcome. They never left, but my wife did.


What factors influenced the major shift in your attitude?

I recently held a discussion and book signing at the Hopkinton Public Library in Hopkinton MA. During the question-and-answer segment of our discussion, one of the participants, the only person present with MS, asked a question beginning with the statement, “I’m amazed and excited to know that after all you've been through you're now remarried. How did that happen, because as you said, you're worse physically today than during your first marriage? And, what changed, I mean what was the turning point that allowed you to move forward find happiness and get remarried?” Of course, I knew exactly what she meant, because at one time I had the very same concern. At the point that my wife, my caregiver, first wanted to divorce, I had an inner dialogue that went something like this: Okay Chris, you have what is now becoming severe MS, who’s going to want to marry someone with MS? No one is going to want to marry damaged goods.

I'm sure that I was not the first one .to ever have this inner dialogue. It’s a real fear. I met my then wife to be, Jane, through an online dating service and she was totally aware of my disability. After Jane, my wheelchair and I went on our first date, I remember asking her, "Why would anyone get involved with damaged goods? Why would anyone purchase a vase with a crack in the bottom?" Jane’s response was, “Maybe I need one to hold my dried flowers.” All she wanted was kindness and love--no anger--just kindness and love.

It helps that we both have the same goofy sense of humor. We laugh together and at one another all the time. Sure, I have slip ups, and get frustrated and angry. The difference is that I have written, re-written, read and re-read my book so many times that when I do begin to slip-up, it’s so obvious that I can’t help but catch myself. And let’s not forget, Jane has also read the book, so when I slip up she’s quick to point out, “Chris, I think you need to revisit page 52," and we have a good chuckle.

Remember life is too short. You choose whether to smile or argue. We were married a year after we first met, and life is fantastic. Jane is the most wonderful, loving and caring person that I have ever known. If I had listened to my inner dialogue, I would never have met my incredibly awesome and loving wife. So these dried flowers are happily married and loving every minute of it. Never give up.

Obviously, life would be easier for you without MS; however, do you feel that you've grown as a person and attained a greater understanding of life and others through living with MS? Can you explain?

Multiple Sclerosis changed my life for the better. The Bible says, "Before I was afflicted, I did not know Him." Back in June of 1993, one Sunday morning after being away from the church for fourteen years, I found myself in a small Christian Church in the Northeast Kingdom of Vermont where I asked Jesus Christ into my heart. Had I not been suffering with my chronic illness I don't know where I would be today. I do know that by surrendering my life to the Lord, He has carried me and provided me with the abundance with which he has promised. "

My illness was an opportunity to remake myself into something better than I was before. What steps do you take to bring abundance into your every day life? What is your practice like? Firstly, the biggest defining moment was in June of 1993 when I gave my life to Jesus Christ, my Lord and Savior. Secondly, keeping abundance in my life involves reading the Bible, praying alone, as well as together with my wife on a daily basis, and doing my best to live a loving life the way God wants. The resulting abundance is truly amazing.

Fear often shows up when you embark on the path to abundance. What fear have you overcome?

The greatest fears I have overcome were:

A. That I would never be able to meet a woman and fall in love again,
B. I was going to be alone for the rest of my life,
C. That I would have to live in a nursing home, and
D. That I would never have a purpose to my life again.

What helped you overcome these fears?

I believe God intervened and directed me to help others by writing my book with the goal of helping those in similar situations better deal with the stress put on one's relationships as a result of life being interrupted by chronic illness or disability. I believe that when I decided to write a book that would help others in similar situations avoid making the same relationship destroying mistakes that I did, God blessed me with abundance.

Look:

A. I married the most beautiful and caring woman in April 2007,
B. My wife and I have the most incredible and loving relationship,
C. We purchased the house next door to my parents who live in the house where I was raised, and
D. I am unable to work because of my disability; however, I'm busy between six and ten hours a day reaching out and ministering to those who would benefit from reading my story.

What’s your passion? How do you live your passion everyday?

It is my passion to share my book with those who are struggling and can benefit from its contents. I wake up every day with a purpose. The purpose to reach out and help those whose relationships are suffering because of chronic illness or disability in their lives. I literally made my life an open book, exposing everything good and bad (because it's not always pretty but it's real). If just one marriage or relationship is saved or benefits because of that which I have experienced, it will have been well worth it.

What are the top three things we can do for someone who has been diagnosed with MS, or a similar chronic illness?

First, the most important thing you can do (actually not do for someone who has been diagnosed with MS) is this: Since many times, especially in the case of a newly diagnosed individual, MS is often an invisible chronic illness. We need you to believe what we say is the truth. Please don't question our integrity by doubting what we are feeling. I may look fine one minute, then seemingly out of nowhere, inform you that I can't walk up a couple of stairs or feel my hands. Please understand this is not something that we are making up to get out of doing something.

Secondly, as an individual living with MS, I know how much your assistance is appreciated. There are times that I/we become weak, clumsy even visually and/or cognitively impaired as a result of MS related fatigue, and we just can't function without your help. However, there are other times that we feel well and want to do things on our own. If you wouldn't mind, please ask if we need your help rather than just jumping in and taking over. It's a self-esteem kind of thing. *Smile*

And last but not least, life is too short. So, let's try to keep things light. A sense of humor is a great thing.

As a disabled person, what important message would you like to share with others who are disabled? What would you share with those who are not?

It may seem that you've been dealt a bad hand and rightly so, but one must not develop the Poor Me Attitude, which frequently accompanies chronic illness. Becoming depressed and making everything all about you will destroy your relationships with both friends and family members.

Do you have a life motto, and if so, can you share it with us?

Take one day at a time. Worrying about the future often ensures that the future for which one hopes never happens.