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.
I am in celebratory mood. Divorce can be a sad and stressful time for may people, but for this particular fruitloop it’s a cause for much celebration.
Hands up anyone who’s tried to divorce a narcissistic psychopath. OK, so in the absence of my being able to actually see you right now, I guess I should give the heads-up for anyone who suspects that they’re married to a narcissistic psycho and wondering how to achieve such a mind-blowing coup.
Rule Number One:
Just remember, you can’t divorce a narcissistic psycho because they won’t let you. Use reverse psychology. Apply for a divorce. Wait about 8 weeks before they slap an anti-suit injunction on you. Haha! that’s a good one, because they don’t want you to divorce them, they have to divorce you.
Rule Number Two:
Be damn sure you have money to burn. I’m talking eye-wateringly, serious amounts of money that could be used for something far more constructive like your children’s education or your shrink bills. You’ll need the best lawyer you can afford. Firstly, because you have to deal with someone who is more cunning than a friggin weasel and has the charm of one of those guys who do tricks with a snake in a basket. You simply must have a lawyer who’s got teeth and balls. Frisk the bugger’s crotch and ask him to open his mouth. I’M SERIOUS. We all know though, that lawyers with a full set of teeth and mammoth balls don’t come cheap.
Secondly, remember… the psycho will always try to out-do you. They simply have to have the best lawyer. It’s a matter of entitlement. So, you can’t be caught with your pants down and relying on the legal skills of a toothless, impotent, eunuch when he wheels in the big guns.
Rule Number Three:
Patience. Be prepared for the longest, most acrimonious, frustrating, expensive, divorce and settlement in f**ing history. The narcissistic psycho will get these expensive lawyers to communicate about all possible minutiae from weekly letters regarding access to the dog, to a spreadsheet showing who owns the contents of the bloody refrigerator. I jest not! Oh, and you’ll need to sort out that anti-suit injunction.
Rule Number Four:
Keep your marbles intact. There will be times when you get to read and respond to their 100th solemnly sworn affidavit, and you’ll wonder if you’ve lost the plot. These things are amazingly convincing works of fiction, and reading them will make you want to vomit…you’ll probably want to slit your wrists too! DON’T. Sure, they’ll contain a grain of truth, but the truth will be so twisted that you’ll doubt your own sanity. Reach for the diary, the photographic evidence, the forensic accounting report and the bloody Valium….but keep your marbles intact.
Rule Number Five:
When the decree absolute comes through, and he sends you a pompous message reading “I find it so very pleasing that I have finally stopped your divorce and divorced you” …….f**ing well CELEBRATE! You will be finally free of the bastard.
Today, I celebrated with a spot of fly posting around the village. This weekend I am having an enormous party.
BECAUSE DIVORCE IS EXPENSIVE….. BUT FREEDOM IS PRICELESS!
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.
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.
Living with Lyme Disease can be a brutal burden.