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 have been fighting writers block for the last two weeks. I closed down my first two attempts at starting my own blog and started a new one but haven’t even posted anything to it yet. I need to figure out where to start – where to begin.
And I want to post here. And I want to comment on the posts I read that make me smile or think or emote. But I don’t. Or I haven’t been anyway. I’ve been lurking… reading a lot but not posting, that is.
The truth is I don’t feel good enough or interesting enough to join in the fun.
Let me clarify: I DO NOT believe I would be, or will be, judged for posting whatever is on my mind at any time. At least not here. I trust Aunt Becky and her merry band to keep us safe from the Mole People. I’m not scared of what might be said in response to what I write.
The truth is I am absolutely terrified of opening up the can of ghosts and demons inside of me. I’ve shared a little of it with my boyfriend, who is the closest thing I have to a best friend too, but even with him I’m scared to share any more.
Honestly, the sheer quantity or ghosts and demons I need to face and fight and get through is staggering me blind most days.
Partly, I am afraid of rejection. Rejection by my wonderful boyfriend, the “friends” in my life, people on Facebook, even here. And by rejection I don’t mean mole people hating for no reason.
I mean losing people. No one caring about me. Or people only caring enough to help a little bit and when the burden gets to be too much they stop trying to help anymore. I’m afraid of alienating people or hurting someone else. Part of me is terrified to even look at this shit myself, so how can I subject anyone else to it?
But at the same time, I know I need to face these things. These ghosts and demons haunting me – some for years and years. Some things as tiny as committing a social faux pas in elementary school all the way up to things as huge as trusting the wrong person with a secret – and losing my job after she shared that secret with my bosses.
The truth is I’ve been on a downward trend for years now. I thought I hit bottom when I went into the hospital last year (psych ward). I thought I hit bottom when I was fired six weeks later and the bills for the “coinsurance” portion of my hospital stay started showing up. I thought I was recovering from those and getting some shit together again. But no. I’m unemployed again. And barely keeping my house clean enough to keep CPS at bay. And relying on my boyfriend and my brother to cook and clean the kitchen. And relying on my parents to pay my bills.
When I start to hit bottom, I start to hide. I haven’t called a single one of my friends in months – granted none of them have called me, either – but two or three did reach out on Facebook to me and I failed to follow through on calling them back too. I’m hiding hard. Even with a fully anonymous email account attached to my as-yet unwritten blog.
I need to start doing something proactive to change.
So I’m reaching out into internet-land, sharing something just to prove to myself I can.
And I’m making a pledge to myself to do three things during the hours upon hours I spend every day with my laptop on my lap each day.
1) I will post SOMETHING either here or on my blog everyday. Something that is honest.
2) I will comment on someone else’s blog (at least 1) every day, just to show some love to people.
3) I will try to share something on Facebook with the people I know IRL.
Someone once told me that we don’t grow unless we do something that scares us. I’m scared shitless right now just typing this. I haven’t even thought about hitting the submit button yet. But I’m going to click that button when I’m done typing (and probably some editing, but if I’m too scared I might skip that step) because I need to put myself out there. I need to be honest for once in my life and share what’s going on inside my brain and body and life with SOMEONE or I’m pretty sure it’s gonna kill me one day.
So here I go off into the unknown. I’m gonna face some ghosts and some demons. And I’m going to share honestly and openly. And as Aunt Becky and her Pranksters so eloquently put it “Fuck the Haters”. I’m not doing this for them or for anyone else. I’m doing it for me.
And that’s scary as hell too…
PS. Thank you Aunt Becky for your post today about your upcoming procedure. Your honesty helped me to make this decision. You’re doing something scary to get better and so am I. You’re my hero.
(ed note: I’m honored and blushy and even crying a little. I love you. Fuck the haters. Most of us have been here before, too. Being brave is hard as fuck, but it’s also strengthening. I promise. Loves you. Be brave. Scare yourself. You can do it).
The last time we talked, you had so much blame. So much disdain for my decisions and actions. You had guessed my motives from the biased stories told to you from people who were angry with me at the time.
At no point did anyone say to me, “Katie, these things we’ve tolerated from you are no longer acceptable to us. It needs to stop or you need to leave.”
I respected the boundaries Casey gave me without any realization that my behavior was triggering Hali. Why would I think that Billy’s appearance would trigger her into a panic?
After several weeks of living peacefully – with both Lee & Hali’s permission to live in their backyard, coming inside only to shower and heat up microwave meals… suddenly, I received notice that I’d violated their boundaries.
I’d been coming by to shower in the dark of night, and I always announced myself when I arrived during the day. Rationally, I explained the reason for each person that I’d invited in. You thought that I didn’t deserve the opportunity to fix it so that I could ease Hali’s mind. I did not even garner enough of his respect to let me know by text, call, or taking a moment to walk into the backyard to tell me to my face that my presence was creating panic in his mom. He acted without taking into account my feelings, situation, or ability to show respect WHEN ASKED TO.
He says I disrespected him and his parent’s house. Did I? Partially, yes.
I acknowledge that I did not understand that my actions within my surroundings (and the authority to bring guests (even short-term ones) in) were triggering others, but I was NOT incapable of rational understanding. My behavior was deemed unacceptable by Casey who never told me.
I am deeply hurt that everyone around me was so offended, angry, and unable to deal with my choices, yet too afraid for my sanity (or lack thereof) to confront me from a place of care, love, concern, and protection.
I am hurt by your actions and inactions as well, Sir.
You talked to people who knew me without explaining my version of those events and should have told them that my motives shouldn’t be impugned, as I wasn’t being malicious.
And when you diagnosed my “irrationality” to Casey, you didn’t tell him that we had had a conversation a while later (after my rational ability to understand had been restored by the State) when I explained my ACTUAL intentions and acknowledged that I could see now that people did not trust my ability to make sense at all.
I was hurt that you made no effort to tell Casey that I had given reasons/excuses as my actions were based on a skewed and warped sense of reality at the time.
EVERY ONE IS THE PROTAGONIST OF THEIR OWN STORY AND HAS A BIASED PERSPECTIVE.
I cannot accept that you understand me “better than anyone” because NOT A SINGLE SOURCE OF INFORMATION YOU SOUGHT HAD ANY CONTACT WITH ME AND AT NO TIME DID ANY OF THESE *IRREFUTABLE* SOURCES actually understand my motivations.
They cast me into a pile that they deemed “unacceptable to have any contact with” and I was left even more alone.
You resent that I – from your perspective – manipulated Mom & Dad into giving me money that I should have been ashamed to ask for?
You actually have the nerve to tell me that you love me and care about me SO much that you MUST protect yourself from any contact with me. Those two statements are BOTH true I understand that, and I’ve respected that – you’ll notice that I haven’t asked for anything from you since.
You are NOT a professional psychologist trained to diagnose whether or not I was, at the time, able to understand reality. You said that your experience shook you so badly and made you believe that I cannot appreciate any viewpoint but my own. This is not true.
What I find ironic is that you actually believe that you have SUCH a powerful brain that you – taking Casey’s word for what happened – are the SOLE AUTHORITY of your Sister. That is SICK AND OFFENSIVE.
You have no understanding of any person’s story but your own. This summer, I tried to understand the motivations of people around me and compare motives with actions.
Was I naive and taken advantage of?
Yes, however, I learn from my mistakes.
Unlike the people I was hanging out with, I had no problem acknowledging my mistake, explaining the reason for it, and promising that would not do so again. I truly believed that ALL people have dignity and value in this world and I believed that everyone’s decisions MAKE SENSE TO THEM at that moment.
I’m able to see others’ actions, disagree with them, but acknowledge that their perspective makes sense to them, even if I find their logic or assumptions wrong. Validating their actions were reasonable to them and then offering a minor change of perspective or asking a question to clarify their motivations and feelings at the time. Unfortunately, people began to think I was manipulating them. They distrusted who I was; they began to treat me as a a threat to their understanding of the universe.
I was very much hurt that my *only* natural sibling was incapable of contacting me for the 18+ months that I found myself homeless.
You offered no indication of care – or acknowledgement of gratitude – that you’d lived with me for 2 years without any income, you understood and appreciated my explanation for wanting you to stay – that I couldn’t live with my only brother homeless – while it was in my power to prevent it. I’ve strived to make you feel as though you were family and I’d always do all I could to ensure that you were safe and loved. You threw my generosity into my face. When I expressed ANY expectation that you contribute to the well-being of the household, in the form of dishes, other cleaning, money (when you had it), or an indication that you had any interest in adding to the comfort and happiness of the people around you, all I got was silence.
How did your sense of “honor” survive when presented with the *exact same* circumstances, but reversed? When I became homeless, you found yourself incapable of allowing me anywhere near you for longer than a few minutes at a time; you insisted upon resenting me for my inability to take responsibility for my life.
Throughout, you happily took Matt’s side. Your sister’s understanding of reality was so far removed from any you could comprehend based upon your limited experience and NO training or treatment experience. You disregard any external wisdom I have learned from talking to others about their experience.
You are so terrified of mental illness that you hide in your monastery of ceramic and Sony PlayStation and justify that being without any responsibilities to anyone – not even those (you say) you love and value – somehow makes you a superior judge of the human condition and supremely qualified to pass judgement upon those who fail to meet your standards.
I accept that my actions have landed me in this situation, and I am aware that your response to stress and drama is escapism and distress-avoidance. You run the fuck away from a situation you cannot fit into the neat little compartments that you believe all humans should conform to. Any deviation from those neat little boxes you quickly label, categorize, then promptly disregard terrifies you. You become a shadow of who you want to be, and my insanity terrifies your sense of the destiny you believe you control.
You are disappointed in me; that I did not meet your expectations for what you “expected” from me. It’s as if you felt no guilt about fucking off all of the family because Mom & Dad could fall back on me – a child they could be proud of.
Somehow you believe that I’d had some kind of idyllic life for a small moment. This meant that you were absolved of any guilt for your own lack of ambition and sloth, because you avoided confrontation and uncomfortable emotions your entire life, and sunk into early drug use to escape your feelings.
You don’t understand my life and my choices. You’ve never asked me (without accusations) about my life.
The only real message I got last month is that you do love me and were aware of my existence and the lifestyle I had fallen into. You had so much anger and disappointment in me, but honestly, you weren’t acting like caring family member reaching out to see if he could help, without approving of my choices I’d made, but that my behavior was so frightening that you avoided me. You wanted an acknowledgement that I hadn’t made good choices and an apology for the pain you’d been through because of it.
You take my choices very personally, Mike, though I’ve never held you responsible for my fuckups. I have respected your desire for distance and no contact. I had no desire to make you uncomfortable. I’ve only experienced your encouragement and care after I’ve made a mistake and you believed it wasn’t your place to say so, though your mindset is truly remarkable. It’s too bad you’re a coward for not speaking up.
You’re a smart person, Brother, but you don’t show respect to me.
Respect is believing what I tell you – or at least giving me the benefit of the doubt that I am not lying. Your experience of living through my mania is valuable to me, especially. However, you expect me to understand events EXACTLY the way you do.
I had my reasons and I went through enough hell – without any indication that you cared. You took over ten years to find a full-time job and never asked for anything that would inconvenience anyone else. That is your code. But you have NEVER even ASKED me how I define right and wrong – because your understanding of the world is rigid, all or nothing, black and white, and while you understand that other people have different needs and desires, you have no respect for my choices because I don’t adhere to your rigid belief system.
You have no interest in understanding me or my story, Mike. You’ve never asked me for my motivation behind a choice you didn’t like, you only told me I was wrong after I’d done it. Life isn’t easy and I don’t have all of the answers.
You say I destroyed you. If this is true, I sincerely apologize that my crazy was so traumatic that you feel I have irreparably damaged you.
What I don’t understand is how you continue to internalize and make my choices ALL ABOUT YOURSELF.
Do you understand that my choices were made without you?
You are not my victim, Brother. And I am not yours. People do change over time – we heal and grow or we stagnate and stop learning because we are comfortable and complacent. I don’t know at what point you stopped believing that you were capable of change, growth, or positive change for yourself.
i don’t know when you decided that YOUR experience was the only one with meaning or value. I don’t know when you decided that you were too far removed to add any perspective or for your insight and opinion BEFORE I made decisions. We are evolutionary ultra-social creatures designed to live in community with one another. But researchers are wrong, in your opinion, because the fittest survive what?
Hell. And come out stronger.
The strongest people I have come across over my plethora of identities and lifestyles, the strongest are those who’ve been through the kind of hell that I put myself through. But they made a choice not to be victimized by their life story. They found the lessons and found ways to contribute – I have struggled with this.
Leslie asked me on the phone in January, which was “what does Brody (my boyfriend) give you, Katie?”
I paused briefly and answered: he gives me an interest in the future and a vision for what kind of life I want. He gives me a reason for the struggle and value for the journey that brought us together. He’s the smartest man I have ever known and the only man whose perspective I use; his viewpoint is a barometer of my ability to interpret reality.
He gives me safety and respects my viewpoint. He’s the only man who’s EVER told that me I was wrong and why. He cares about me and loves me – not in spite of my crazy, but BECAUSE of it. He has no reservations or “despites” in his love for me. I love, accept, and understand him in of fundamental way that NO ONE has ever done.
But you don’t care about that.
You believe that you’re “destroyed,” but that was not my doing, Little Brother.
The only control we have is in our response to the things we perceive. You’ve never had an interest in anyone else’s perspective. You don’t care what anyone thinks. You don’t get value from painful reflection.
You are dead.
Because you don’t value any other person’s existence, and because you have declared yourself the sole arbiter of Morality and Honor without any interest in what others might think, you are, indeed a God to yourself.
And I have my own understanding of how the Universe operates. You have no use for my concept of God and your memory of me is not what you heard or were told about.
Sorry to disappoint you.
I’ve learned and grown and changed and I have more understanding than you EVER will of the way people DESERVE to be treated. I find value for their experiences and perspectives. You aren’t interested in my experiences and I think you’re terrified that the role you’ve put me into isn’t accurate, that you cling the me that you valued but never treated with any dignity.
I will always hope and pray that you find some growth, happiness and/or reason for your existence beyond your pain and escape from it. I will always hope that any report I get of you will be positive. You don’t believe in Luck either, so I hope you find what has eluded you.
There is a picture of me, somewhere out there, probably still on my dad’s phone unless they’ve turned into Christmas Card people, in which case, the picture is most definitely out there in the world for all to see.
I hope it is not.
I didn’t see the picture until I was 5 months sober, staying in the unfinished basement at my parents house, grateful that I was no longer homeless, while I hunted for a job. Before this, I’d been staying there after a stint at a ramshackle, rundown motel, the kind of place you probably could dismantle a dead body, leave the head on the pillow, and no one would think anything of it. But it was my room, and despite the lice they gifted me, I loved it. Until money dried up and suddenly I was, once again, homeless. I’d moved in there after I was discharged from the inpatient psych ward, in which I was able to successfully detox after a suicide attempt. Got some free ECT to boot.
Despite what you see on the After School Special’s of our childhood, I didn’t take a single Vicodin, fall into a stupor, and become insta-addict – just add narcotics! No, my entry into addiction was a slow and steady downward spiral of which I am deeply ashamed. It’s left my brain full of wreckage and ruin, fragmented bits of my life that don’t follow a single pattern. Between the opiates, the Ketamine, and the ECT, I cannot even be certain that what I am telling you is the truth; what I’ve gathered are bits and pieces of the addict I so desperately hate from other people who are around, fuzzy recollections, and my own social media posts.
About a year and a half before I moved from my yellow house to the apartments by the river, Dave and I had separated; he’d told me that while he cared for me, he no longer loved me. While we lived in the same house, we’d had completely separate lives for years, so he moved to the basement while I stayed upstairs. I’d been miserable before his confession and after? I was nearly broken. Using the Vicodin, then Norco, I was able to numb my pain and get out of my head, which, while remarkably stupid, was effective. For awhile.
Let me stop you, Dear Reader, and ask you to keep what I am about to say in mind as you read through this massive tome. I’m simply trying to make certain that you understand several key things about my addiction and subsequent recovery. I alone was the one who chose to take the drugs. No one forced me to abuse opiates, and even later, (SPOILER ALERT) Ketamine. This isn’t a post about blaming others for my misdoings, rejecting any accountability, nor making any excuses for the stupid, awful things I’ve done. I alone fucked up. My addiction was my own fault. However, in the same vein, no one “saved” me but myself. There was no cheeky interventionist. No room full of people who loved me weeping stoically, telling me how my addiction hurt them. No letters. Nothing. It was just me. I was alone, and I chose to get – and remain – sober.
The delusions started when I moved out, sitting in my empty apartment alone, paralyzed by the thought of getting off the couch to go to the bathroom. Always a night-owl, I’d wake at some ungodly hour of the morning, shaking. It wasn’t withdrawal, no, it was pure unfettered anxiety.
It was the aftermath of using so many pills, all the fun you think you’re having comes back to bite you with crippling anxiety and depression.
Which is why I’d do more.
Yes, opiates are powerful, and yes, I abused them, but things really didn’t become dire until I added Ketamine to my life.
Ketamine, if you’re unaware, is a club drug, a horse tranquilizer, and a date rape drug. You use too much? You may wake up at some hipster coffee bar, trying to sing “You’re Having My Baby” to the dude in the front row who may or may not actually exist. In other words, it’s the best way to forget how fucked you are.
The delusions worsen as time passed. I could see into the future. I could read your mind. I was going to be famous. I was super fucking rich. In this fucked-up world, I could even forget about me, and the life that I’d so carelessly shattered. I remember sitting in Divorce Class at the courthouse, something required of all divorces in Kane County, weeping at all that I’d thrown away – using a total of three boxes of the low-quality, government tissues. I left with a shiny pink face and completely chapped nose and eyes that appeared to be making a break from their sockets. I went home, took some pills, took some Ketamine, and passed out.
I retreated ever-inward. I didn’t talk to many people. I didn’t share my struggles. I was alone, and it was my fault.
The hallucinations started soon after Divorce Class ended and my ex and I split up. He’d left my house in a rage after a fight and went to live with his sister. I got scared. His temper, magnified by the drugs, the hallucinations, and the delusions, grew increasingly frightening. Once he’d moved out, the attacks began. I’d wake up naked in my bedroom, my body sore and bruised, and my brain put the two unrelated events together as one – he was attacking me. It happened every few days, these “attacks,” until I found myself at the police station, reporting them. I was dangerously sick and I had no idea.
My friends on the Internet (those whom I had left), sent me money for surveillance cameras. I bought them, installed them – trying to capture the culprit – and when I saw what I saw, I immediately called the police and told them the culprit.
The videos in my bedroom captured an incredibly stoned, dead-eyed, version of myself, violently attacking myself, brutally tearing at my flesh. In particular, THAT me liked to beat my face with one of my prized possessions – a candlestick set from our wedding, take another pill or hit up some Ketamine, then violating myself with the candlestick. It lasted hours. I’d wake up with no memory of events, sore and tired and unsure of how I’d gotten there.
I’d never engaged in self-injury before – not once – so the very idea that I’d hurt myself was unbelievable, but right there, on my grainy old laptop, was proof of how unhinged I’d become. Charged with filing a false report, I plead guilty.
In early September of 2015, I decided to get fixed, and made arrangements with work to take a few weeks off to do an inpatient detox, and, for the first time in a long time, I woke up happily, rather than cursing the gods that I was still alive.
It was to be short-lived.
Several days later, sober, I was idly chatting with my neighbor about her upcoming vacation (funny the things your brain remembers and what it does not), standing by my screen door, when karma came calling. It sounded like the shucking noise of an ear of corn, or maybe the sound that a huge thing of broccoli makes when you rip it apart – hard. It felt like a bullet to the femur. I crumpled on top of my neighbor and began screaming wildly about calling an ambulance, yelling over and over like some perverse, yet truthful, Chicken Little: “my leg is broken, my LEG is broken!”
I don’t remember much after that. I woke up in (physical rehab) and learned that my femur (hereafter to be called my “Blasfemur,”) had broken, fairly high up on the bone, where the biggest, strongest bone in your body is at its peak of strength. Whaaaa?
The doctors and nurses shrugged it off my questions, with a flippant “It just happens” and sent me home, armed with a Norco prescription, in November, to heal. I added the Ketamine, just to make sure.
A couple of weeks later at the end of November, I was putting up the Christmas tree with the kids and my mother. It was all merry and fucking bright until I sat down on the couch and felt that familiar crunch. Screams came out of me I didn’t know were possible, but I’d lost my actual words. My mother stood over me yelling “what’s wrong? what’s wrong?” and I couldn’t find the words. I overheard her telling my babies that I was “probably just faking it” as she walked out the door, my screams fading into an ice cold silence. They left me alone in that apartment where I screamed and cried and screamed. Finally, I managed to call 911 and when they asked me questions, all I could scream was my address.
I woke up in January in a nursing home. When I woke up, I found myself sitting at a table in a vast dining room, full of old people. For weeks to come, I thought that I’d died and gone…wherever it is that you go.
This time, I learned, my (blas)femur and it’s associated hardware had become infected after the first surgery, which weakened the bone, causing it to snap like a tree. They put me all back together like the bionic woman, but the surgery had introduced the wee colony of Strep D in the bone into my bloodstream, creating an infection on meth. I’d been in a coma for weeks. Once again, I learned to walk, and once again, I was sent home in late January with another Norco prescription. The nursing home really wanted me to have someone stay with me to help out, but I insisted that I was fine alone. In truth, I had nobody to help me out, but was far too ashamed to tell them.
The picture I referenced above was taken some time in May, as far as my fuzzy memory allows me to remember, after my third femur fracture in March. This time, I’d been so high that I fell asleep on the toilet and rolled off. Glamorous, no? Just like Fat Elvis. Luckily, my eldest son was there and he called 911 and my parents to whisk him away. I remember my father on the phone, telling Ben that I was a liar and I was faking it. I was swept away in the ambulance for even more hardware, and finally? A diagnosis:
It’s an autoimmune disease that leaches calcium from the bones, resulting in brittle bones. It is managed, not treated. There is no cure.
But, I had the answer. Finally.
After my third fracture, I once again was sent to the nursing home, and quickly discharged with even higher doses of Norco, when my insurance balked, I’d used up all my rehab days for the year. By this time, I’d lost my apartment, my stuff was in storage (except the things that we’re thrown away, which my father gloated about while I was flat on my back) and my parents let me stay with them, which was about the only option I had. They couldn’t really kick me out if my leg was only freshly attached. I feel deeper into a depression, self-loathing, and drug abuse as I realized what a mess I’d made with my life. How many bad choices I’d made. How many people I’d hurt. How much I’d hurt myself. How much I loathed myself. How I once had a life that in no way resembled sleeping in my parents dining room. How I’d been a home owner. How I’d been married. How lucky I’d been. How I threw it all away. My life turned into a series of “once did” and “used to.”
The only one who hated me more was my father.
While we were once close confidants, in the years after my marriage to Dave, his disdain had become palpable. My uncle had to intervene one Christmas, after my father mocked me incessantly for taking a temp job filling out gift cards while I was pregnant with Alex. It may seem normal to some of you, this behavior, but in THEIR house, NO ONE was EVER SAD and NOTHING was EVER WRONG. WASPs to the core, my family is.
When I moved back in, broken, dejected, and high, our fights became epic. For the first time in my life, I stood UP to one of my parents. Then, I was promptly kicked out.
Guess I’m not so WASPy after all.
I want to say that the picture was taken around May of 2016, but my estimate may be thoroughly skewed, so if you’re counting on dates being correct and cohesive, you’ve got the wrong girl.
This is a picture of me, though you probably wouldn’t recognize me. I am wearing the blue scrubs that you associate with a hospital: not exactly sky blue, not teal, not navy, just generic blue hospital scrubs. These are, I remember, the only clothes I have to my name. I was given them in both the hospital and the nursing home, a gift, I suppose, of being a frequent flier, tinged with a bit of pity – this girl has no clothes, we can help. Whomever gave them to me, know that you gave me a bit of dignity, which I will never forget. Thank you.
I am wearing scrubs, the light of the refrigerator is slowly bleaching out half of my now-enormous body, as opposed to the darkness outside. There is a tube of fat around my neck, nearly destroying any evidence of my face, but if you look closely, you can make out my glasses, my nostrils, my hair cascading down. My neck is stretched back at nearly a 90 degree angle from my body, my head listlessly resting on the back of my wheelchair. My mouth gaped wide, which, should I been engaging in fly catching, would have netted far more than the average Venus flytrap. I am clearly, unmistakably, and without a single shred of doubt, passed the fuck out.
It is both me and not me.
High as i was, I don’t remember a thing about the photo being taken. But there I was, in all my pixelated glory.
By the time I saw the photo, I was once again in my “will do” and “can do” space. I’d kicked drugs in September 2016 and had found a job that I enjoyed. I stayed with my parents while I began to sort out my medical debt and save toward a new car and an apartment of my own. My spirits were high, my depression finally abated to the background, and I was tentatively happy. I’d apologized until my throat was sore, but my fragmented memory saved me from the worst of it, but I was not forgiven. I don’t think I ever expected to be. And now, I never will.
It’s okay. I can’t expect this. I know I fucked up.
My father, who’d actually grown increasingly disdainful of me, the more sober and well I became, confronted me when I came home one day after work, preparing to do my AFTER work, work.
My mother shuffled along behind him, Ben, the caboose. All three of them were in hysterics, tears rolling down their cheeks as I sat down in my normal spot on the couch. After showing them a video of two turtles humping a couple of days before, I eagerly waited to see what they were showing me.
What it was was that picture. Of the not me, me.
They could hardly contain their laughter, my father happier than ever, braying, “Isn’t this the best picture of you?” and “You PASSED OUT, (heave, heave) IN FRONT OF THE FRIDGE!” punctuated, with “I’m going to frame this picture!” The tears welled in my eyes while my teeth clenched, they laughed even harder at my reaction.
Like I said, if they’ve become Christmas Card sending people, this will be the picture of me they show, expecting others to laugh uproariously. Before I moved out, in fact, my father made certain to show the picture to anyone who came over. “Wanna see something hilarious?” he’d ask. Expecting memes or a funny cat playing the piano, they’d agree. I could see it when they saw it, my dad chortling with laughter, nearly choking on his giggles, the looks on their faces: a mixture of confusion and pity. Even in my drug-hazed “glory,” I’d never felt so low.
Maybe that picture is splashed all over the internet, in the dark recesses I don’t explore, and maybe it’s not. Maybe it’s hung on their wall, replacing all of the other pictures. Maybe it’s not.
Mary sat there with her eyes rolling back into her head; her mouth foaming a bit. Her newborn baby was sleeping in her arms while she jostled him each time she would nod out and try to keep focused.
She looks up at me and says, “you just want to take my baby away from me. All of you Social Workers are the same.”
I stare blankly. I am new at this, but I can’t let Mary know that. I am just 25 years old, and she is well into her 40′s. She is not new at this, not by along shot.
Little does she know it isn’t her newborn I am after, it is her disease.
“Do you have any other kids Mary?” I ask, as I fill out her assessment.
“Yeah. 4. They all were taken away from me because people like you don’t think I care about my kids. People like you think I have no heart, and all I care about is drugs.”
I clarify for her that people like me what to see her clean, healthy, and safe.
After an hour long assessment I learned Mary has been using for more than ten years. She doesn’t even remember how old she was when she started, but she does remember the first time she sold her body for a hit of heroin. She tried rehab too many times to count, and currently she is high on the doctor-prescribed methadone mixed with a hit of heroin.
The air is thick with concerns, and I am forced to send her back out on the street with her newborn wondering if she has a warm place to stay tonight. I asked her and she laughed at me and said, “yes where else would I bring this baby?”
She still thinks I want her baby. She doesn’t know I want her disease.
I want Mary to claim war on it. I want her to fight with me. I want her to have the ability to see herself as more then just a drug addict. I want her to see herself not as a prostituting drug whore, but as a loving Mom.
It is clear she is an addict, but it is also clear to me she is a loving Mom as well (the baby is swaddled in a blanket, fed, and she is cooing at him. She bathes him in kisses, and opens her diaper bag for a pacifier). That baby deserves his Mother to fight the war. That baby deserves a better life then getting passed around the drug world, because if he stays he will never get out.
I really don’t want to take her baby.
After a few more meetings and evaluations, Mary refuses my advice to go into family residential treatment. It is the only way for her to keep her newborn son, and for them both to be safe. She isn’t ready for the fight. Her disease is telling her that it is more important then her kids. Her disease is running Mary.
Mary isn’t fighting because she hasn’t “hit bottom” or reclaimed the right to her body, her life, her choices.
By now I am sure you know the outcome, Mary lost her baby to the state. Her 5th child to the system. I was just another Social Worker that had to report it. I was, what she said I was, a baby snatcher. I wish I could explain why, but nothing I said comforted her. She refused treatment, and I, ethically, could not let her continue to take care of her 1 month old on the streets she sells herself and buys drugs on.
You may be reading this and thinking “I’ll never get this low,” “This isn’t me” “my story is different” or “it hasn’t consumed me” “I have control of it”.
Don’t fool yourself, Mary thought all of these things as well.
Addiction is all the same disease.
It will consume you if you don’t choose to consume it. It will make you give it everything. It can push you to do things you never imagined you be willing to do. It will cost you not only years of your life, but your loved ones. It will take all of who you are, and what makes you “YOU”, and give it a slow and painful death.
As a professional in the field of Addiction I can tell you this: You can not do it alone. You shouldn’t have to do it alone. If you needed surgery to remove tumor, do you take the scalpel and do it yourself? No. It is the same thing my friend, the VERY same thing.
A disease is a disease is a disease.
We (professionals) aren’t here to take your babies. We aren’t here to pass judgment and tell you how bad you are. We didn’t get a degree in this to make fun of you, or to watch you pee in a cup.
We did it to help you fight. We are here to reclaim you.
I am no longer 25 years old, and I may not be in the business of rehab anymore (instead I am a stay at home, blogging Mom). However, Mary, and all the other people I sat with in various rooms at various locations will always be in my heart.
I will always feel like I am a warrior against Addiction.
I will always want to win the war, support addicts and their families. And I am here to tell you….
you are not alone with that monster.
Don’t let the Addiction win.
Reclaim yourself, your life, and what you rightly deserve.
Note: some of you may recognize parts of this story. I ask that you please respect the thin veneer of anonymity I’ve created by posting this here and only reply in the comments here, on this post. Thank you.
Why am I always the reliable one? I’m tired of people depending on me.
When my ex and I first got together, I announced that I was going to be teacher as a means to support my novel-writing. She thought that sounded swell, so she was going to be a nurse to support her art. That lasted a year or so. She finally had a little mental “snap” and quit school, just two classes short of a degree in English and art.
“If it’s what you want,” I said, “then do it.”
A friend later claimed that my now-ex had “supported” me as I went through grad school. Wrong. I worked full-time through grad school just as I had through college. I brought in at least half of our income. I paid my bills. On time, no less.
My ex’s little “snap” got worse. There were times she was catatonic on the couch. I pleaded. I begged. As a last resort, I yelled and that seemed to be what she wanted at that moment. Not something I could do ongoing – so I pleaded and begged her to get counseling. “Sure,” was the response, but it never happened. She met someone else. He convinced her to get help. So she did. For him.
She showed me a journal entry not long after she started therapy. The first blow was when she said that I was her financial stability while the other guy met her emotional needs. I thought this was her way of announcing she wanted a divorce. Apparently, however, she didn’t see anything wrong with this and pointed to the most disturbing part of the entry – “This, THIS is what I wanted you to really see!” This was the part about how she was so full of love that she loved everyone, and more than that, that she could bed anyone. Including her mother and grandmother.
We went back to her counselor to answer the question that had been posed the previous week: why are you married? My answer was: I want a divorce. There was just no coming back from that journal entry. Not when she couldn’t see how screwed up it was. Not when she only thought of me as her financial stability.
My next wife couldn’t believe I’d put up with so much from the ex, much less for ten years. But I don’t believe you leave just because someone is ill. I stick to the commitments I make and I take that responsibility seriously.
My current wife moved in with me because, well, because she was falling apart and because I keep things together. It’s what I do, what I’ve done since I was very small. We fell in love. And then we got catastrophic news – I had cancer. No health insurance, not even breaking $20,000 a year, despite having a coveted professional job at a very prestigious place. My new wife worked, but didn’t have a career and was not sure what she wanted to do next. We were dead broke.
But just as I fought my way through childhood sexual abuse, I beat the shit out of the cancer as well. About then, I was offered full-time employ at another prestigious organization. I thought I had a career. I began to relax into my life.
We fussed over the hours I kept. We fussed because I have difficulties taking breaks and tend to work myself into a state of exhaustion. We fussed over keeping the house picked up. We fussed over what to do on vacations.
We never really fought or had an outright argument, not really. We were good at dialoguing and compromising. I’m not saying sometimes there weren’t sometimes emphatic words, but we worked hard at being reasonable and at not actually yelling.
Until I woke up one day and realized that I felt like I’d made all the compromises.
Please note that I said I felt like I’d made all the compromises. I don’t think that’s strictly true; I’m sure she has her list.
I lost my beloved career. Part of me thinks it’s because she complained about the hours I kept. But I have the feeling that’s not true – there were political reasons for getting rid of someone like me, many of them. But I can’t help that feeling ….
I found a new job eventually. It was dull and boring and I said I was only doing it until she was done with school and ready to head to graduate school. Then I could – perhaps – afford to be more picky with my choice of employ. So I waited. And I grew to love my job. The longer I worked there, the more they fitted tasks to me instead of trying to fit me into a particular little round hole when I’m so obviously a triangle. She asked me to quit talking about it because she hated her job.
She had one class left. The one class I was most fit to help her with. But she put it off. Dropped out. Took it by correspondence class, but then didn’t keep up with the work. And somehow, still got her diploma in the mail.
But she didn’t apply to grad school.
She continued at the job she hated. Insisted that there were no jobs in her field. Her workplace is making her sick constantly, but rather than look for any job just to get out of there – even a temporary job instead of something in her career field – she continues with this one. Fusses about it.
The job I’d started out hating but had grown to enjoy and was launching a new career for me, abruptly and unexpectedly closed just before the economy really tanked. I eventually found a new job at the most dysfunctional company I can imagine and have spend the last three and a half years trying to find something else locally.
And now she has completely folded in on herself. It’s been painful to watch in every single way. Neither of us are outgoing people but she used to go out with friends. I realized the other day not only do I not have any friends (long-standing issue having to do with my shyness and social confusion, not with her), but she no longer has friends either. It’s like pulling teeth to get her to agree to go out without me, even just to the grocery store to pick up something that she needs. (Don’t assume I don’t go to the grocery store – I do. I’m talking about a run for the one vital ingredient she forgot or the one medicine she ran out of two days ago and keeps forgetting she needs until it’s time to take it again.)
Like my ex-wife, she, too, has ground to a halt. Stopped functioning in any meaningful way. She wants praise when she remembers to do a load of laundry. (Again, please don’t think I don’t have chores – I take care of the dishes and kitchen, she does the laundry. We have split all of the household chores.) I appreciate having chores done – but I don’t see the need to congratulate her every time she does the things she is supposed to do. I don’t want to be thanked for doing the dishes or scooping out the cat box. Those are my chores; I am supposed to do them.
Now, if we’ve been really busy and she makes an extra effort to do 18 loads of laundry in an evening (I exaggerate!), then I do tell her thank you. That genuine, kind of surprised, wow, honey, that was a lot, thank you!
But I’ve felt like she’s disappearing. I’ve pointed it out, cautiously, gingerly. I’ve talked around asking her about counseling, but she has always insisted that talk therapy does nothing for her. She finally announced six or so months ago that she decided she needs counseling. But she never followed through.
And now? Since the middle of August she has been to work twice. TWICE.
She went a week and a half before telling me. Turns out work called and left a message on the machine telling her that she needed to contact them and get put on short-term disability. Or -the implied threat- lose her job. She finally did contact her doctor. She was put on short-term disability. Had a slew of doctor appointments. The “stress specialist” said given her symptoms and her general twitchy demeanor, she is genetically predisposed to panic attacks. He’s giving her exercises to do. She’s also been prescribed medicines to take to help when it gets bad. The stress doctor would rather she stay off work for a total of four weeks since he started seeing her, but for some reason, she was to go back last week, after just two weeks. She made it two days (I think. I fear it was only one day, but I don’t remember and I’m afraid to ask.)
She sits at home and honestly, it’s become a cliche. She reads romance novels and pets the cats. I have to ask her if she will please do the smallest amount of one of her chores. She is home all day, doing nothing. She doesn’t do whatever small chore until after I get home from work. (Except for the day in which her chore was to make a phone call.) I have had to do several of her chores just to make sure they get done – on top of my chores, on top of my work week, on top of my work-from-home extra job. I have cringed when she makes a commitment at the church, fearful that she will fall down and I will have to keep that commitment for her (or put up with the fallout) – and been amazed when she keeps a commitment made to others … but not the ones she makes to me.
I am wracking my brain to figure out what I’ve done wrong. Did I just fall in love with women who happened to have similar issues? Did I do something wrong to trigger such behaviors? Am I so toxic that I poison them somehow?
I fear that she will lose her job soon. There are a lot of plans we made together which were time-sensitive which will die completely if this happens, including one that I have wanted with all my heart and soul since I was a very small child, but if it doesn’t get put into motion within the next year, the window of opportunity will slam permanently shut. She’s the one who told me we could do that, not to give up hope.
And I can’t help but feeling that this breakdown is tied to the timing of that plan. That her heart is not in it, but she can’t tell me and so the breakdown. The problem is, I had given up on that plan. I had put it aside completely and given up on it. And she brought that plan back to life two months ago. Dragged it out of its moth balls, dusted it off and set wheels in motion so that I believed with all my heart that it would happen after all.
And now I fear it will not. And I fear that we will not survive as a couple if her breakdown kills that plan.
I don’t understand inactivity. And so I have a difficult time understanding how she can just not walk into work every day. I am trying to be supportive. But for God’s sake, people are relying on you to go to work every day. I am relying on her to go to work every day. I do it. I hate my current job, but I go every day. I don’t understand how she can not only not go to work, but then not accomplish anything at home either. There are so many projects that need to be done. And she reads trash fiction all day.
I am trying to be supportive. She needs me to be supportive so she can get through this. And as long as she is working to get better….
But I am so very tired and this scenario just feels so very, very familiar.
And I am so tired of being the responsible one upon whom everyone relies.