If you are a friend, you’ve no doubt heard me refer to the young Prince and my daughter, Sam. You may not have heard me discuss My Dude, who will be 20.
My Dude has lead a life of struggle – he’s no angel, despite his problems and all of our efforts, we could not help him. We tried our best, we failed him, but when he is ready we will try again, and again, and again, and again.
This left his mark on each of our souls in this family; they say when one person has a disease, the entire family is sick. (Whoever the hell “they” are, that’s about the only thing “they” ever got right.)
He also left his marks on our house. Walls written on, slammed doors, the broken dishes. They’re really silly little things in the grand scope of things, when you consider how many times we’ve had to start over: house floods, hurricanes. When his lows were so low and the anger beast would rage out of his fists and into the walls, nothing was safe.
For years, the holes would multiply, weekly, monthly, until eventually, I learned it was silly to fix them because they would come back, bigger, with more vengeance.
So we stopped. We stopped fixing the holes, we focused on simply surviving the best we could. We made horribly hard choices that parents shouldn’t have to make. He grew bigger, stronger, and his disease became more pronounced while he became increasingly distant.
Two years ago this week, what little was left of my world crashed down.
My Sam-I-am, left for the university; she’s my only daughter, my first born, my best friend, the first thing I had ever done right, and my biggest confidant. I wanted her to escape the madness, to spread her wings and go, but the selfish child in me wanted my friend, my baby, my daughter to stay. Two weeks before she left, I received a medical diagnosis that I kept secret for three weeks so she would go, as she’s the kind of girl who would give up her life to stay behind and help.
The diagnosis was so shocking, the amount of research was mind boggling while coping and adjusting our lives and goals around it. But we did. A couple months later, Dude had a break down, freak out, and then he left.
I have spent one and a half years without him, though he did briefly return twice. It didn’t go well either time, and both times he left on bad terms. Once, after a physical altercation with me.
Every night I go to bed not knowing where my son is, if he has eaten, if he is safe, if he is alive. When my phone rings from another state or an unknown number in the middle of the night, chills run up my spine and I feel like I will vomit, as I prepare for that phone call that no parent wants. Because I don’t know. I beg him to get to a doctor. A hospital. A police station. A shelter. Anywhere.
He’s never had a job. He’s never driven a car. He receives no welfare, no medicaid, no anything, he’s not a drain on your tax dollar, but does have mental illness and he is walking around this country. How has he survived? I have no idea. He is good looking, very good looking. He’s also very smart, and a great con man. I love him dearly but I’m not looking at the world through rose-colored glasses. I wouldn’t want anyone to cross his path because honestly I have no clue what he is capable of: he hasn’t been on medication for over a year and I can’t legally make him take any, as he is an adult.
So for this past year and a half, when I don’t hear from him for a week or longer, and I worry, or I get a call of him just talking crazy I can sit on my stairs and run my hand over that hole in the wall and try to absorb some of his pain. Because I am his Mom. It’s my job. Kiss the booboo, make it all better, right?
But, I can’t. I have never been able to make it all better. He goes from loving me to wanting me dead in one deep breath. So I leave the holes in the wall to remind me of his pain, to remind me of how I can’t fix him, how I can’t help him. All I can do is love him, remember that he is real, even if he isn’t here.
Over the last three weeks he was calling 10-15 times a day, and full of tiger blood and all grandiose, like Charlie Sheen. For some reason the stars lined up and a guy who did drywall came by, so I hired him and paid him. My dad went in the hospital last Friday. I spent the entire day in the emergency room until he was admitted. I got home and at midnight I got a call from another State that my Dude had been picked up, they wanted to know about his mental health and he had asked them to call me. I had to say horrible things about him, to strangers, who think I that am a mother who doesn’t love her son. What they don’t know is I love him enough to say those things so they will get him help.
In a strange twist of fate. The law being what it is, I can’t find out if they have my son, if he is alive, where he is, how he is. Nothing. Tomorrow will make six days since I have had an update and it’s eating at me, yet I have to go on, with work and life and baseball games for the Prince, Sam-I-am turns 22 on the 11th and graduates on the 13th. Still, I know nothing about my Dude. I kick out jokes, posts, tweets, pictures, but why isn’t my phone ringing, DAMN IT? I am his mother, I need to know he’s okay.
I went to the stairs today, put my hand on the wall where the drywall had been fixed. I just sat on there and felt I couldn’t have betrayed him more if I had tried. I’m so sorry, Honey. I hope one day you will understand that I love you to beyond the universe and back.
To all the parents who feel like they are failing, messing up, being judged, on the edge or losing it: you will survive. While I can’t guarantee your sanity, you will survive.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.
I don’t do resolutions. I have never been able to keep promises I made to myself, so I quit trying. However, I can’t say no to Aunt Becky, so I’ve been trying to figure out what “I will…” do this year.
I was coming up blank until my conversation with my mom this afternoon, and it hit me.
I will be OKAY.
That doesn’t sound like much, and yet it’s huge. There was a time when being okay seemed an impossibility. I recall it vividly.
It was April 2, 2005. I was two days out of treatment for addiction, and I was annihilated. That night, I reached the point of perfect misery. I didn’t want to live and could not die. I finally knew that I could not live that way anymore, and I took the first step. I surrendered, and the next day, I began attending Narcotics Anonymous meetings like my life depended on it.
When I first got clean, I didn’t think I’d still be clean 14 years later. I certainly didn’t think I’d ever be okay. But I kept coming back. I got a sponsor. I started working steps.
The idea that I might someday be okay never really occurred to me. There were other N.A. members who I thought would be okay. Some of them are. Some of them relapsed. Of those who relapsed, some made it back. Some didn’t. I never really thought about which category I’d fall into; I couldn’t think that far ahead. Getting through each day, each moment, was too much of a struggle.
Even when I found that each day wasn’t a struggle, I didn’t really think about whether or not I’d be okay.
Until today, when I was laughing with my mom about something that happened today. The event is irrelevant. The awareness it brought me today is what’s relevant. I realized that I just might be okay.
I don’t mean I am cured. I just finally understand that if I keep doing what I’ve been doing to recover from the
disease of addiction, well, I just might be OK.
For somebody who didn’t think she was worth saving when she reached out for help, that shit is huge.
I wrote a lot on this site about the drama I have in my life, but this time I wanted to write and share something that is made of pure glitter for me: dance.
I started dancing when I was really young, but it wasn’t until I was eleven that I found Irish Dance. I was obsessed with Riverdance growing up, and Mama found a school that just started up in my hometown, so I tried a class. I was instantly hooked. I have done so many other types of dance in my life (ballet, modern, jazz, ballroom/Latin/swing, etc.), but Irish always held a special place in my heart. I loved going and competing in competitions all over the nation and Ireland. I was addicted to the thrill of the performances we would do all over the state, and I never thought I would stop. Fate had other ideas.
When my knee blew out, I thought that I needed to leave all dance behind to be able to put that part of my life away and start a new one as a photographer. I tried to leave it, joking that “dance was my passion, but photography was my love. You never marry your passion, you marry your love,” but soon I found my life missing a huge piece of something. I never could figure out what was missing, but I kept moving forward.
In my classes, I would always practice old steps I choreographed or competed in my head while I worked on other things, and I would always end up choreographing new dance numbers to random songs in my head. But it wasn’t until after my Mama died I finally figured it out.
I was living at my best friend’s house when a fire caused my town to evacuate during the summer, and I went to dance, the same dance class I use to live at, with her little sister. I thought “Well, I’m here, I might as well dance,” and I found myself hooked again. It was coming home after a long time away. Now, I know where I belong and what I am: I am a dancer who is studying photography.
Dance is either magic or pure glitter, depending on what you want to call it. It makes all the world quiet, all the problems just vanish for a few hours, and nothing matters but your body and the music. I love being able to lose myself completely in the movements, the music, and the small, little movements that others find boring. I spend hours remembering how to move my body, how to turn out, how to balance, and how to jump again. It sounds easy, but being able to take my time and just fix my old problems is amazing.
Dance is something I can and know how to fix. This is a place where I am safe. Dance doesn’t lie, it is the truest way to see someone’s soul. It is an essence of the person him or herself. I don’t even know if this makes sense, but when your world starts to spin out of control, the best thing I think you can do is dance. It helps you… feel. You don’t have to wear a mask or hide, you are truly free.
It is pure glitter to me, and my resolution is that I will dance! I will remember the simple joy of moving, of perfecting each step, and being in the moment completely. I hope some of you will join me: dance is not just a studio and lesson, it’s all around us. Just turn on music or listen to the wind outside and dance! I promise, you will feel better and most likely will be smiling and laughing, even if it’s just a moment, and you’ll feel better.
The Band Back Together Project is a group weblog and nonprofit organization that provides educational resources as well as a safe, moderated, supportive environment to share stories of survival.
Through the power of real stories written by real people, we can work together to de-stigmatize mental illness, abuse, rape, baby loss and other traumas so that we may learn, grow, and heal.
All are welcome.