Forty-five years ago, I came into this world after the expected length of time with all 10 fingers and all 10 toes. New-baby plump, pink, and hollering out my displeasure at being squeezed out of my warm, comfy spot. I was the fourth child in my family; the first two girls were fine, the third did not survive past his premature birth.
The fifth, my brother, arrived some three and a half years after I did, hale and hearty.
I was born broken.
Only no one could see it: it was on the inside. Within hours it became apparent something was wrong. I was not keeping formula down, I couldn’t tolerate my mother’s breast milk, formula, formula substitutes of any kind. I did not have a single bowel movement.
Tests were run, x-rays were taken.
Turns out I had the congenital defect, “Hirschsprung’s Disease.” A major part of my intestine, to put it simply, did not have nerves and therefore didn’t work.
When I was two weeks old I had my first surgery. Between a third and a half of my large intestine was removed and a colostomy was performed. There are a multitude of photos of me with both a diaper applied the standard way and one wrapped around my tummy over the colostomy opening. My mother became very adept at doing massive amounts of laundry. This is before the era of disposable diapers.
Over the course of the next several months, I had multiple abdominal surgeries.
At the ripe old age of 7 months, it was time to put me “back together.” They operated on me once again and did a re-anastomosis. A re-anastomosis is a surgery that re-connects the remaining colon to the portion of the colon near the rectum. A re-anastomosis was performed so that the colostomy can be closed and I could begin to have regular bowel movements.
My first memory is from when I was seven months old. I have shared this memory with my mother, with whom I haven’t really talked much about things other than the above. I remember lying in a crib, my legs spread and ankles tied to the crib bars, and my wrists tied as well. I remember laying there just looking at my mother through the bars of the crib.
Not upset, not crying, just looking at her.
She’s told me that this exact moment did, in fact, take place. That I was calm and accepting of whatever happened. She explained that I had to be kept perfectly still after the re-anastomosis surgery because, back then, they had to apply clamps to the “seam” where the intestine was put back together. These clamps were inserted through the anus and could NOT be removed or dislodged or the seam would come apart. The clamps would fall off when the seam was sufficiently sealed and the tissue was not as swollen anymore.
Thankfully, this is no longer a necessary part of re-anastomosis surgery.
For a few years after this, I would continue to have follow up surgeries for scar repair, another infection and incisional hernia. And it took years – well into elementary school (which is another story) – for me to learn how to control my bowels.
I don’t know what it’s like to not have a roadmap of scars on my belly. For one surgery they even opened me from the back, putting the incision in the crack of my bum. This is just my reality.
I’ve had additional surgeries, mostly related to the massive amount of scar tissue from my surgeries as I was an infant. I ended up having a complete hysterectomy (I was only 24 years old – I’m honestly still dealing with that loss).
But I’m alive. My parents told me the doctors said it’d be a miracle if I lived past 10 years of age. They didn’t tell me this until after I was well past 10 years old… and now I’m 45. I guess it all worked.
To top it all off, I was born in southern New Mexico to a dirt farmer and his wife in the 60’s. Imagine the empty rattling when one shook the coffers. My family reached out to the March of Dimes, and they were wonderful to us. There wasn’t a children’s hospital in southern New Mexico so all these surgeries and medical care took place at the nearest one – in Denver, CO! The March of Dimes covered many costs for my mother and I to fly back and forth, the costs at the hospital and the surgeries.
Thankfully, my level of Hirschsprung’s was a fairly mild one. I was lucky. Most babies with this disease have much more severe issues and more extensive damage/surgical needs.
Some babies with Hirschsprung’s even face mortality at birth or soon after.
I’m still broken in other ways, but in this, I am a survivor.
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.
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.
Yet, all of them have always been under my control. I just didnʻt know it.
All this time, I thought they had complete control of me, but the truth is, and has always been, that my demons for me, like yours for you, are ours to tame, name and obliterate (maim). Once they are tamed and named, they can no longer control you.
They can only be your bitches.
While this might seem very simple, I know it is anything but. I know that it is a demon son of a bitch to deal with the thoughts we think, and it is worse when the PTSD kicks in. I know, too, that people think you are pretending, but, I know that you cannot possibly pretend to be the thing that you have been fighting your whole life long – that thing that other people think and believe is your identity, or, sometimes, they think it is your mask.
It is the monster that no one thinks about becoming real in the lives of domestic violence survivors, and the irritating little mother fucker of a demon that likes to rear its head just when you thought you had the shitty little thing tamed. You find out quickly that these demons donʻt want to be tamed. They want to be what you want to be, which is free and wild. They want to be free to run wildly amok in the hallways of your memory, fucking with you until tears fall, and not only do others stop seeing the real you, even you stop seeing the person you always knew yourself to be.
My own demons like to play with me, they like to knock the fuck out of reality and truth, and they like to tell me that I’m not at all what others think me to be. My demons tell me all the time that I am not capable of doing things the right way, because I do things my way, and my demons like to remind me that I am not the prettiest, or the smartest, they tell me I am the most irritating person and that even the people who love me the most also and equally loathe me.
My own demons fight with me, argue the truth until there is nothing left of it, the proverbial pile of mindfuck particles left scattered around my psyche like some sort of diabolical confetti comprised of the memories that made me feel better, or made me feel awful, or made me think things that were not the truth, or made me believe that I was not ever in control of who I am…but that they were.
Then one day I figured out that those demons were askinʻ for it. They were literally, by right of their continuing to pop up in my life at the most inconvenient times, asking to be seen to, to be heard, to be told what to do and how to behave. They needed me to see to them, to stop feeding them the bullshit that, for so long, had made them sick and ugly and loathsome, and just completely miserable, and that kept me under their control.
Lots of times we do not see that we might be dealing with someone elseʻs demons, and ones that they show to us, and only us, for the purposes of healing them, through the power of love and truth all at one time.
Sometimes, the demons respond favorably, and other times, they fight back, wanting to live and be heard until they no longer have voice to scream at us with, or anger to flail through us with, or any other way of being or thinking that lives within us, because instead of letting them become like flying monkeys, we make them into the little fuckers who, no matter what, we have control of.
We canʻt see ourselves as anything but works in progress, and as such, sometimes we need to help those parts of who we are that are not that great. We need them to compare them to what we want to see, what is already there, and what just requires a little coaxing….
She tried to die by suicide. I received her text that she was in the hospital while I was tutoring.
“Call me ASAP.”
“I need you to come to hospital and spend the night with me.”
My response: “I know. Still working with a student.”
She: “Ok please get done soon! I need you.”
I: “What hospital?”
She: “I’m at ******. I had a suicide attempt. The nurses know me and hate me here, so they’re doing small mind tortured. Waking me every five minutes–saying duragatory things. They told my parents I’m hallucinating–I’m not, please come stay with me–I don’t feel safe.”
Meanwhile, I am trying to do my online tutoring job. I can see the look of horror on my face on camera while the texts are displaying on my phone. I tell my student I have to talk to his dad. I inform him that I have to leave immediately due to an emergency. I explain while his son is out of earshot. He gives his sincere emotional support. I give a quick run-down of what his son needs to complete for the assignment, then I start packing. I text my husband to let him know that I have to help my friend, then I tell one of my twins that I’m leaving for the hospital.
My brain is racing at the speed of light. I am trying to cover all the bases: what would she need from home that she did not get since she was directly transported to ER? I text her to ask if she needs anything from home before I leave. She would like headphones. I grab my earbuds, but first I have my son help me find an extra set because I would like my own set. After trying a few sets (why is it that teenagers blow through so many earbuds?), I decide to bring my own to share. She might be too tired to listen to music.
I text her to let her know I’m finally on my way. I arrive and remind myself of several things: put on your own oxygen mask first, stay strong, and be her advocate.
She is in the ICU. She has a central port PICC line as well as two IV lines because the medical staff had a hard time getting an IV started. She’s bruised all over. She overdosed on a plethora of medications at her parents’ house while she was housesitting there, including painkillers and her father’s injectable insulin. Her kidneys shut down and the medical staff had to pump her stomach. The medical team pull her labs every two hours to make sure that her levels are improving. Thankfully, the PICC line is a saving grace.
My friend makes comments about the nursing staff. She says that they make comments about her, saying that she OD’d to get attention, that she is a princess and she is going to call her daddy, but when she confronts the nurses about it, they say that my friend is hallucinating. The hospital has a one on one person for suicide watch. This person has to document every little thing that the patient does while under their care. On Saturday night, the one on one person documented all of the unprofessional conduct. While I was there, she said that the nurses were commenting about her again, as well as me. I went up to the nurse and asked her about it. She denied it and said that my friend was “hallucinating and making things up”. I said, “You may say that, but when you talk about patients, others can hear it and that is breaking patient privacy. Everyone else can hear it, and that is not acceptable. It is not professional. You need to stop it.”
The nurse called her supervisor and she came down to talk with all of us. My friend finally voices how she feels. The nurses, of course, covered their butts and say that my friend had been hallucinating from her OD. I interject and say, “Even though that did happen, it is not professional for you to discount how she feels. Nor is it professional of you to talk about her while other people can hear. She does have recipient rights.” The minute I mentioned the term “recipient rights”, the two immediately changed their tune and started apologizing. My friend apologized as well for things (even though in my opinion, she didn’t have to, but it is part of healing the relationship). I asked if my friend could be moved to step down critical care since her levels were improving, and the nurses agreed. Two hours later, my friend was moved to a quieter, private room with a more caring team. Ironically, the bitchy nurse stays after her shift end to help us move.
We get settled in, and my friend finally has the best sleep she has had. Her levels improve so much, her kidneys are normally functioning, and the medical team clears her. The next day, she gets her PICC line removed. My friend keeps telling me to go home, that she is OK. All of a sudden, we learn that Community Mental Health (CMH) is on their way to start the intake process to find her a facility. Things start accelerating at an astronomical rate, and my friend has no idea how to process this. I stay to help her process things and to be her advocate. Her parents come to the meeting, as well as her husband. I ask the CMH representative if it is OK if I stay during the meeting to be her advocate and he said if it was OK with her it was OK with him.
Here is where I see mental health stigma magnified. Thankfully, the CMH person is neutral, asks all the appropriate questions, and takes my friend’s requests seriously. I was floored when my friend’s stepmom was blaming my friend for what happened. She said, “Your dad is so angry at what you did to him.”
I couldn’t hold it back anymore. I said, “I’m sorry. With all due respect, when you make comments like that to her, you are blaming her for her illness. We need to help her instead of telling her what she did wrong. She didn’t do this to you.”
The stepmom got angry at me and said, “Well, with all due respect to you, you haven’t been here for the past eleven years.”
I responded, “You’re right. I haven’t. But, you need to understand that constantly telling her how bad she is isn’t helping her heal.”
When her parents left, my friend said, “That is the first time that anyone stood up to my stepmom.”
I pack up to go home because my friend’s husband is there. I feel that she is stable enough now. Her husband made the comment, “Well, I would have come earlier, but I had a half talk of gas and no money.”
I looked him and smiled with my sweetest Southern smile and said, “I had only the change in my pocket, a quarter tank of gas, cancelled my tutoring job that I was doing, cancelled my other two tutoring jobs and packed up to stay the night with *****.”
He looked at me, laughed and said, “What is wrong with you?”
I said, “Nothing is wrong with me. My priority is taking care of those I love, and I love ******.”
I was hurt for my friend. It is hard enough battling mental health demons, but when you are alone with no emotional support from your family, it is almost insurmountable.
Once I got to my car, I video chatted with one of my friends, and I finally cried. I let it all out. I cried body rocking sobs for my friend, the pain that she is shouldering on her own, the fear of the unknown that she is facing, and the aching of wanting to heal. I sobbed in anger against mental health stigma, the blame people put on those with mental illness, and the broken system that is failing so many. No one should be blamed for his or her mental illness. It would be akin to being blamed for having cancer, diabetes, or asthma.
I received a text from my friend’s husband. It read: “Thanks for being such a good friend to ******. I don’t think I have ever witnessed such devotion from a friend of hers. I will try to keep you in the loop as much as possible ok” I responded, “Thanks for keeping me in the loop. I appreciate that. We all need to rally around ***** and help her to recovery and wellness.”
This is my prayer. I pray that we work on our recovery and wellness, be our best advocate, and remember to put on our oxygen masks first.