Perfection isn’t always attainable and the cost may be too high.
Talk to your loved ones:
My sister P has an unrelenting drive to pursue perfection.
In the 70′s, she started working as a file clerk. She worked and worked, harder and harder until she was Vice President of one of the biggest banks in the world. All without a college education. remember as a child, she’d get up at a ridiculous time every morning to iron her clothes so she was perfect for her day. On the weekends, she would wash and detail her car so it was perfect, too. She was meticulous about everything she was involved with.
When someone gave her a gift she liked or someone did something well she exclaimed in a high pitch voice, “PERFECT!!!” I gave up on her level of perfect a long time ago, knowing I was never as driven as either of my sisters to keep up appearances.
She was nicknamed, after Olive Oyl, the character in the Popeye cartoons who was tall and slim with dark hair just like hers. My sister and I always struggled with our weight as children and adults but not P. She vowed as a junior high school student she would never be fat and she never was.
When P discovered she had cancer she fought extremely hard. When she was diagnosed with non-Hodgkin’s lymphoma 20 years ago, the survival rate was much lower. Her treatments were hard but she kept her spirits up. After her bone marrow transplant she got out of the hospital faster than anyone else had before.
Year after year passed and P remained cancer-free against all odds.
Yesterday, my sister K and I drove 3.5 hours each way to see P. It was a tough visit. She’s not breathing on her own, has 5 tubes down her throat, has had a heart attack, and her kidneys are working at 25%. She is being kept alive on machines because of an infection anyone normally could get at home. Part of this is because she had a bone marrow transplant and will forever have a compromised immune system.
After talking to P’s doctors we also discovered she partially did this to herself.
P didn’t eat enough and when she did eat she didn’t eat healthy foods. I can remember for years now if she ate a normal meal she would be in the bathroom with diarrhea or throwing up.
We found out yesterday along with all the medical issues P is facing she is suffering from long-term malnutrition.
This is a woman who has money. She can afford to eat but she chose not to. We know now she didn’t eat enough for a long time. In her search for her version of perfection she is fighting for her life and on life support with an infection that you or I would be in bed with mildly inconvenienced .
She always had Cosmo or Glamor magazines in her home and strove never to be bigger than a size 6. She was forever losing just 8 more pounds.
I hope all the women I know read this and take it to heart.
P will always suffer the effects of her long-term malnutrition. It is not too late for your daughters, it is not too late for anyone reading this who struggles as P does with food. It sickens me that my sister who I love so dearly is malnourished.
Talk to your daughters. Talk to your friends. Before you skip that meal to fit into that new dress think of P and eat something healthy. Trying to be some unreal version of a woman can kill you.
I have no words for the anger I feel about this. I have always hated the unreal images of women and the shapes I will never be, but this event takes my anger to a whole new level. If women as a whole don’t buy into the magazine image of a woman then the image of the size 0 woman as perfection will have to change.
I guess I met Stef when I was thirteen or so, which would have made her twelve, but really, I felt like I’d known her forever. She was one of those people that the moment we met, it’s like we bonded instantly on some molecular level; like we were made of the very same stuff at the core. It’s rare that it happens, two people who simply know each other like that, two magnets pulling toward each other, instantly attached, but when it does, you can’t forget it.
And I didn’t.
Everyone loved Stef. She had this shine about her, something rare in a teenager, that made you want to be near her; like if you stood close enough, some of that sparkle, that inherent goodness that radiated from her would rub off on you, and for awhile you would be better for knowing her.
I am better for knowing her.
Stef was one of the first people I knew that loved me for who I was, warts and all, and even now, seventeen years later, I think she may be one of the only people who genuinely will ever love me. Maybe it’s because she understood me in a way that most people don’t. Maybe it’s because she was my first real friend. Maybe it’s because that was her gift; her shine. I don’t know.
She walked tall, confident in her shoes, while the rest of us awkward teenagers struggled to figure out who we were, Stef always knew who she was. I learned that from her.
When my boyfriend slept with my friend, she was the only one who chewed him a new asshole. In a world where I had never had a soul on my side before, Stef was always firmly there, Team Becky all the way. She would have cut a bitch for me, no questions asked, because she was my friend and she loved me. Maybe other people had families that would do that for them, but I never had that. It had always been me against the world. I learned how to be a friend from Stef, too.
She was there when I’d gotten pregnant with my first son, holding my hand when his father, too, cheated on me. Again, she was the only one who stood up for me. I never told her how much that meant to me.
Shortly after my son was born, she got pregnant, too. Excited, we planned for this baby, a boy. When her son was born, the sparkle she’d had went out and was replaced by a sadness I couldn’t touch. Always a party girl, she took it to new levels, trying to drink away her pain.
No one knew what to do.
We tried to reach her, but nothing seemed to get through. She tried rehab, three times. She was hospitalized. Tried medication. In the end, she kept returning to the bottle, drowning her sorrows in a fifth of vodka. The only friends she had left were the late-night sort, the ones who didn’t care about the Stef I loved so dearly, the ones who didn’t know my friend as she had been.
She left me a message at the end of December from a pay phone, having no phone of her own, just out rehab again. Stef sounded good, optimistic, even, offering to get together for some coffee and a playdate with her two boys and mine, sometime in the near future.
That message came too late.
I got that message two days after I buried my first real friend. One of the only people who may ever really love me.
February 10, 2008, I got a call from Stef’s mom, telling me that Stef had died the night before, in her sleep. Liver failure, cirrhosis.
Stef was 26 years old and left behind two young sons.
I’ve never been able to write about her, although I’ve tried hundreds of times. I’ve deleted thousands of words because they were simply not enough. There are no words eloquent enough, true enough, real enough to express the kind of person she was. And getting her wrong is not an option.
I loved her. I love her.
I miss her so much that my heart hurts some days. I’ll probably always feel like there’s a part of myself missing now that she’s gone. That magnet, the part of me that was connected to her, that’s still looking for that other half and it’s gone forever. I’m lucky to have found someone like that in the first place.
Sometimes, in pictures captured when I am truly happy, I can see a certain expression on my own face that is pure Stef, and it makes me smile and laugh a little, because it reminds me of the e.e. cummings poem: i carry your heart(i carry it in my heart)
This site is dedicated to you, Steffie. When we meet again, and I know we will, I can’t wait to tell you all the things I never told you when I should have. For knowing you, I am better.
May your shine always be warm, like Stef; like the evening sun.
Lyme has done some awful things to me. I think the worst are the feelings of despair, anxiety, loneliness. The physical symptoms are not permanent. And although it is sometimes hard to believe, the emotional and psychiatric symptoms are not going to linger forever either. No one can understand how disabling this can be if they haven’t walked this path. If I said I had cancer or MS, I think people would relate (“oh, so and so has that”). We’ve made those illnesses a part of our vernacular. Chemotherapy is almost universally understood. As a society, we know what to expect when someone gets those diagnoses. We are compassionate, sympathetic. I know when my dad was diagnosed with cancer, people came out of nowhere with cards, meals, time.
Lyme is not yet seen the same.
Late-stage Lyme is debilitating. But it is invisible. There is a great website called “But You Don’t Look Sick” that has some great stories about perseverance through invisible illness. I’ve been called a hypochondriac by people who claim to love me. That’s heart-breaking. I sometimes don’t have enough energy to get out of bed to make dinner. I certainly don’t have the energy to convince someone that my whole body hurts and that I have fatigue that can only be temporarily overcome by several large cups of coffee. I’ve realized that putting on that front though only makes it less obvious that something is wrong.
I don’t want to be a burden to those I care about, so I try to minimize my complaints. But truly, I feel very alone. When my dad was sick, I felt there was no other choice but to move in with him, make sure he was cared for, that healthy food was on the table, that he didn’t have to worry about driving home from chemo. Where is my caregiver? I don’t mean for that to sound desperate or clingy. I guess I just don’t understand. I would do anything for friends and family. Quite frankly, I have, sometimes to a fault to where I haven’t left anything for myself and my family.
I am ready to be healthy again. I want to have non-caffeinated energy. I want to be able to work out without feeling crushingly fatigued from lifting ten pounds. And I want a social life back. I know it takes time to maintain friendships, and I feel like I have lost my ability to do that. Mostly I’m just tired of being alone.
And being sick is just one more reason for me to feel distant from others.
Being a caregiver to a loved one is one of the most gut-wrenching things a person has to do.
This is her story:
I’ve been contemplating blogging for quite sometime. I’ve been afraid to for several reasons, but to rattle off a few: anonymity, vulnerability, and pure avoidance. I have a fear that if I actually put the feelings/circumstances/questions out there, it means I actually have to deal with them. Thank you Aunt Becky for starting this blog…so I can get my toes wet.
From what I can tell of this space, many are dealing with loss, mostly stemming from the unfathomable experiences associated with childbearing/loss/postpartum/depression and the host of other issues those of us who are now “adults” face. I would like to add another sad layer to party – dealing with caring for someone whose mind and spirit are being slowly ripped away through Alzheimer’s Disease.
My mother, the beautiful, talented, smart, amazing hero of my world, is slipping away. I cannot say things like…she has had a full life, this is part of getting older etc. You see, she’s only 61 years old. We are at least 5 years into this battle (it took most of those 5 years just to get a diagnosis) and it feels like this freight train is traveling full force. Every day, for my mom, is the best it will ever be. Tomorrow, some different aspect of the person she is today will be gone. For now, she knows me, she knows my kids, she know she is my mom. She doesn’t remember where she lives, when the last time she talked to me was, whether or not she fed the dog (yes, at least 5 times now) or how old the kids are, let alone that she just told me the same story for the tenth time in a single conversation. It can be so frustrating, but I have to constantly remind myself…today is as good as it gets.
I need an outlet…and hope this can be one. Caregiving, whether its for an infant, child, spouse, sibling or parent, means giving more of ourselves than we ever thought we could give.
And that comes at a price. I look to you, fellow fighters, for insight, laughs and support. I promise to give it all back.
Nobody has ever said that pink walls and pastel artwork helps those with cancer cope.
This is her story:
Have you ever wondered who chooses the artwork hung in your doctors’ offices? The first time it occurred to me was when I had an ultrasound on my breast–having already been diagnosed with breast cancer (my daughter was 8 months old, my son was 3). The walls were pink, the paperwork was pink, the robes were pink. And on the walls held ungodly Georgia O’Keefe knock-offs. You know what I am talking about…the “blossoming flower” (wink wink).
In the “Women’s Imaging” center that day, the color scheme and fallopian-tube flower work was as if to say “Hi, you have cancer, but if you gaze long enough upon theses soothing feminine images, you won’t mind as much.”
Good Lord.
Two months later, I visited my mother at the at a prominent cancer treatment facility 90 miles away. She had been diagnosed Stage IV colon cancer only a few weeks before my breast cancer diagnosis. I walked into a wide, long room hosting at least thirty patients in big, lazy-boy recliners. Each person was “under the bag” (cancer-speak for getting chemotherapy), faced toward the center of the room where sat the biggest fish tank I have ever seen. I mean, it was obscenely big—jutting out into the middle of the room in all of its aquatic resplendence like a big middle finger flipping off every cancer patient.
All of those people, their lives distilled down to hours spend under a chemo bag force-fed aquatic serenity—as if they were children in a pediatrician’s office—easily distracted by shiny bright objects floating in water. Something tells me not one of those people felt better about the fact they were getting chemo because they were looking at a fish.
When I stepped into one of the private rooms to see my mom she, too, reclined in a chemo chair—sick. A whisper of the woman she once was. And above her, one badly painted picture of…a lily pad. I went on over the next few months to my own cancer treatment. I took notice of the floor to ceiling photographic murals of “peaceful scenes” in my oncologists’ minuscule examination rooms.
When I lay down on the table my toes nearly touch the nose of a fuzzy bunny in a field in Exam Room 1; a doe grazing in the dew of a spring morning in Exam Room 3; or the tepid water of the pond holding LILY PADS. Right next to the medical chart of the female reproductive system is an 8foot x 8foot wall of LILY PADS!!!!!
I kid you not.
I thought it mere coincidence until I was received further treatment at a nationally renown university cancer center. Waiting room? Fish tank. Exam room? LILY PADS!
By this time I’m pretty sure these lily pads and fish tanks are some sort of secret code for kind of insurance we all have. Or portals into a fourth dimension. What is the art work like at HIV clinics, or pediatric cancer units, or prostate cancer centers? Thrusting erect shapes in dominant tones? Exactly how is someone else interpreting our fears for us and prescribing certain images to calm us?
I don’t know about you, but when I walk into my oncologist’s office I need to either see Lenny Kravitz working behind a Starbucks cart or Johnnie Depp, shirtless, handing out Valium if they want me to get my mind off of why I am there. Fish tanks, lily pads and Procrit squeeze balls key holders to the women’s room don’t cut it.
Can you imagine if every woman diagnosed with cancer walked into a doctor’s examination room and given paint and a blank wall? I doubt we would find one freaking lily pad…ever. What would you paint on your doctors’ walls? What would your mother have painted on the walls of her doctor’s offices?
And don’t get me started on the images for pregnant women…I have been a birth professional for nearly a decade, and I have NEVER seen a woman dilate more when gazing upon a protruding petunia.
Screw the pastels—we are women for god’s sake, stronger than any other element in nature.
Growing old is optional, growing old gracefully even more so.
My mom did not have it easy in the last 5 years of her life. Her first problem was with her sciatic nerve, which first caused pain then weakness in her legs and eventually left her dependence on a wheelchair. I tried to keep in mind that she was in pain, scared and unsure during the times when she seemed to be going the extra mile to be as difficult as possible, but I wasn’t always successful.
After my father passed (Mom went just 4 yrs later), my mother became a shut-in. This was pretty much by choice. We lived 4.5 hrs apart, I’m an only child and we have no relatives who still speak to us living nearby. She refused to consider moving and her house looked liked something you’d see on “Hoarders,” but that’s yet another story. She wanted to live completely independent of help, especially mine, because this was the first time in her life that she was on her own, so I think she wanted to prove to herself that she could.
Did I mention “shut-in?”
She was defiant, she was determined to be independent and she was lying…I had a 74-year old teenager on my hands.
She ordered food through Amway. She bought her clothes via catalogs. She banked via the mail. She had a few friends who would come over and check on her most days, but the situation was far from ideal. Her mind was not the best, but she was sharp enough to lie to me about anything that didn’t show her situation in the best of lights.
For instance, she never told me about the time she fell and had to call the neighbors to help her up. She never told me about the time, in a very confused state, she called 911 in the middle of the night because -best I can piece together- she had a dirty diaper and was having trouble changing it herself. The cops busted the front door open and were not at all pleased to find her in no actual danger.
She did tell me about the time she called 911 for a ride to her doctor’s appointment, only because she felt a grave injustice was being done. Something had happened with her scheduled special needs ride, and she reasoned that if the doctor needed to see her then she needed to take an ambulance. She had received a bill for $700 for that non-emergency ride and didn’t think she should have to pay it. I did talk her into paying the bill, hoping she’d learn her lesson.
I tried mentioning the idea of assisted living, but she wouldn’t hear it.
“They beat you and lock you in your room!” she screamed. Eventually, I convinced her to get some in-home elder care and a woman would come by three times a week for three hours at a time to cook, clean, and run errands for her. Finally, I could get the low-down on her condition from someone who would be honest with me.
This started out well, as Mom enjoyed having someone to talk to and she was now getting fresh, home-cooked meals instead of the packaged crap she ordered via the mail. But, it didn’t last. I got a call from the coordinator to tell me my mom was hitting the workers. She was also being verbally abusive. At one point, Mom chased a worker out of the house, screaming at her from the front door.
I got emails from a friend of Mom’s who had visited her, only to find her crying hysterically, saying “I hate my life!” and hitting herself in the head. When asked about it the next day, Mom acted surprised and said nothing like that had happened.
Then, Mom came down with a bad cold that required someone to stay with her while she was ill. The elder care folks were great and worked out schedules so that she was tended 24/7 until she got better. Problem was, despite appearing to hate these helpers, once Mom got better, she didn’t want the 24/7 visitation to end. In fact, now she was refusing to let them leave. I’d have been fine with the additional help, but we could not afford the $10,000 per month for very long.
I had to talk with Mom and tell her it had to stop. This did not go well, and there were tears, but in the end, she cut back to 1 visitation, 5 days per week.
The pain and weakness in her leg was getting worse, and it was spreading to the other leg. We talked to a number of doctors, but she didn’t like most of them and liked even less what they had to say. Finally, after yet another fall that she still would not admit to, she was in the hospital again. Her doctor convinced her to have back surgery, and at last she agreed. She was hell on wheels both pre- and post-surgery. She had a fear of falling that was off the charts.
When the nurses tried to move her in the bed, or, heaven forbid, try to get her to stand up, she’d scream. I’m talking hear-her-down-the-hallway screaming. I’d leave the room and stand outside biting back tears whenever anyone tried to work with her.
When she was well enough to leave the hospital, she went to a rehab facility to help her get back on her feet as much as possible. It was there that some medical genius, who I’d kiss on the lips today, put her on anti-depressants (yeah, I know, “what took so freakin’ long?!” – she refused them before because she didn’t want to “take dope”). Mom became a bit more reasonable and a little easier to deal with. More like heck-on-wheels. When I asked her why they put her on the happy pills, she said “so I’d stop screaming.”
Hallelujah!
During rehab, her doctor spoke with me, informing me that she could not live on her own. Preaching to the choir, sir. So, through hook, crook and threats of Adult Protective services, I got her to agree to move “temporarily” to an Assisted Living facility near me. I found a really nice place a mile from my home and they assured me that the beatings would be kept to a minimum. (Joke!)
We moved some of her favorite things up and set up her two-room apartment to look really nice and homey. When she got out of the hospital we drove her straight to her new home. Despite hearing how horrible it was, we watched her start to enjoy life again. She was making friends and playing Bingo every day. God forbid you came by during Bingo hours, only did THAT once.
Mom *loved* the call buzzer and actually wore the one by her bed out, because she used it so much. She still managed to keep things lively. I got a call from her one Easter morning, telling me she couldn’t move her leg and perhaps she had had a stroke. “Should I go to the hospital?” Well, the normal answer would be “Hell YES!” but I had learned to ask. “Why didn’t the nurse call the ambulance for you?” I ask. Mom said that they wanted her to check with me first. None of this was adding up, so I told her I’d be right over. When I got there she was wheeling around her room, fully dressed and looking fine. I asked which leg it was that she could not move. “This one!” she said, bouncing the leg up and down.
Her behavior continued to become more erratic, and I got a call that I never thought I’d get. Mom was flashing her boobs at the male help and at some poor, unsuspecting wheelchair repairman. Oy. A doctor was brought in and a diagnosis of dementia was made. This only pissed her off. She accused the facility and the doctor of telling horrible lies about her. “I’d never do that!” she yelled.
In the end it really was a stroke that took her. The weekend of Thanksgiving she had a massive stroke affecting half of her brain. She had her 78th birthday in the hospital, but was not aware enough to know it and she passed just a few days before Christmas.
I’m still working on cleaning out the house, but it is getting close to being done. I avoid driving by the assisted living place, still too many bad memories. I can laugh about Mom flashing the help. It’s two years later and I’m finally getting to the point that I don’t jump when the phone rings.
Perfection isn’t always attainable and the cost may be too high.
Living with Lyme Disease can be a brutal burden.
