This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
It’s already been a rough year for me. Just seven days in, my five-year old son was diagnosed with Leukemia. It has floored me. I am still in shock. Daily I struggle with the WHY WHY WHY of it all.
Still, I can make this year my bitch. I cannot – and WILL NOT – let the whole year be a sinking ship.
I will take care of myself. This means giving myself a break, letting myself off the hook, taking days off work when I need to, continuing my healing through therapy, taking naps… It also means getting dressed every day, showering, and not letting myself slip into a depression. I will continue to do things that bring me joy – like travel – and try to let go of the worry.
I will be there for my son. I will advocate for him and help him create good memories to balance out the less palatable ones. I will continue to give him a stable home life with structure despite the bomb that has gone off in our life.
I will keep working toward my goals – personal and family goals. My husband and I have plans for this year and next – plans we’ve been working toward since we met – and I will not let them get derailed. It would be easy to push everything aside, but the RIGHT thing is to show our son how to live in the face of adversity.
I will nurture my primary relationship. I’ve been stressed and overwrought and altogether tapped out emotionally lately. It’s okay to have low points, I know, and my husband and I are helping each other as best we can. Our relationship is important and provides a foundation for our life as a whole. If we take care of our marriage, the rest of our life will benefit.
I will allow myself to stumble. I will give myself permission to be less than perfect. I will celebrate my victories. And I will make it through this year.
We all have letters we can’t send for a zillion different reasons. Maybe the person is no longer around, maybe you can’t actually speak your mind to them, maybe you’re just not ready to admit it.
Band Back Together encourages you to share your letters with us. You never do know how soothing someone else’s words can be. Click here to write your own letter.
Dear Littlest Sister,
I wish, for so many reasons, that we were closer. It seems that all your life I’ve watched you hurting, and I’ve never been able to help you. Either it was out of my hands or you wouldn’t let me close enough to be any good.
I know I’m a disappointment to you, and that there are times you wish we didn’t share a name. I’m sorry. As difficult as our relationship has been, I have always been proud to call you my sister.
When you were five and our parents were divorcing, I should have been more sensitive. I should have seen the Little Sister who needed reassurance. Looking back, I don’t know why I minded it when you followed me around – you were so darn cute!
When you were playing softball, I wish I hadn’t been so wrapped up in my teenage-self. I wish I’d praised you for all your hard work, told you how great you were. Had I praised you, would you have felt shadowed by our middle sister’s spotlight? Would you still have given up sports?
Maybe it would have changed your future to hear how proud I was of you.
When you were experiencing your own teen depression, I wish I hadn’t been thousands of miles away. I’d have held you as you cried. Maybe then you wouldn’t have tried to overdose. If I’d been there to listen, would you have started cutting?
When you enlisted in the military, did I tell you how my heart swelled with pride? When you came back from your basic training and tech school, I was, once again, wrapped up in my own stuff. Did I tell you that I loved you? Did I tell you that I missed you each day you were gone?
And now, when you’re hurting – when your life is spinning – the distance between us is more than the five-hour drive. I want to call you and listen to your tears. I want to tell you that broken hearts hurt worse than childbirth, but that you’ll heal and be stronger.
I want to comfort you and give you the compassion and support that I know you won’t get from our mother or our middle sister.
It’s silly, really. We’re so much alike, you’d think we’d be closer. But, as I look back, I can see all the wedges I drove between us.
And so, I’ll write this letter to you, a letter you’ll never see. I’ll keep you in my thoughts as I wait to hear news of you. And I’ll pray that this isn’t the thing that causes you to hurt yourself again.
You are such a beautiful person.
You give so much of yourself to everyone. You, who never wanted children, are my son’s favorite aunt. He glows when he talks of his time with you and he tells anyone who will listen that he wants to join the military, just like his heroes. Do you know you’re one of his heroes?
Do you know you’re one of mine?
I love you to the depths of my soul. And no matter what, you will always be a part of me.
During the month of August, Band Back Together is going to be publishing posts about loss and grief. These losses can be perceived or real as we know that loss is universal. We welcome you to share the stories of what and who you’ve lost – parents, children, animals, sisters, brothers. Please share your posts with us by clicking here.
This morning on the way into town, I had a flashback of a phone call. A phone call I’d had with hospice, seven months ago.
I remember it well. I was in the back room at my parents house where I’d been staying for the last week or so to help take care of my mom. She was sick. She had taken a turn for the worse. She’d had Stage 4 Colon Cancer for four years. It had been four years of fighting: first chemo and surgeries, and then natural medicine and a special diet.
She’d lived far longer than the doctors thought possible. She’d outlived the projections of every website and message board I’d visited in my obsessive need to understand what we were up against. Her CEA (tumor marker) numbers stayed low and nothing showed up in her monthly exams for a long time.
Then, the numbers started to creep up. After three years of nothing, they’d found a new spot on her liver.
It only took four months to go from finding that small spot to being in that back room on the phone with a lady from hospice.
Mom had been getting intravenous fluids the week before. As weak as she was, we would help her get dressed, get her to the car, one of us on each side to keep her from falling, drive her to the hospital and wait the two to three hours to get the fluids and then repeat the process to get her home.
We’d done this every day for a week, but the benefits of the fluids were starting to be countered by the difficulty of the journey. She was getting too sick to make the trip anymore. We’d talked to her doctor, the hospital, to anyone we could think of to figure out how to get the fluids to come to her. We felt certain there had to be a traveling nurse, or someone else who could administer the fluids. If the problem was that insurance or Medicare wouldn’t cover the cost, we were all more than willing to pay for it.
We just needed someone willing to do it.
When I asked the lady from hospice if that was something she could help us with, instead of answering my question, she asked some of her own: What did I think was really going on? What did I think the fluids were going to do for my mom? Would it be better to keep her going as long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves?
We discussed that Mom’s body wasn’t benefiting from the fluids as well as we’d hoped. Her liver and kidneys had already begun to shut down, and we knew she was experiencing fluid retention. In fact, the fluids we were fighting so desperately for may have been doing more harm than good.
I had one of those moments when the blood thunders through your ears, the air is sucked from your lungs, and time slows down.
She was so sick. Every day she was getting sicker. Of course we knew she was going to die. But until that moment, I’d been in fight mode.
This was the first moment I realized the fight was really over.
The lady on the other end of the phone waited until I stopped crying, and we made arrangements for her to come over to talk to the rest of the family. We’d been fighting this disease aggressively for over four years. It was going to take some professional help to transition from that all-consuming fight to helping our Mom let go and…die.
She came over and we all gathered around the couch where Mom was laying, and we talked about the fact that she really was dying.
It was singularly the saddest discussion I’ve ever been a participant in. Everyone left my sister and I alone with Mom. We talked about how this was really it. We told her how much we loved her, how we would be there with her through it all, and how we would be there to see her on the other side.
I wonder how she felt at that moment.
I think about that moment a lot. I regret that moment sometimes. I wish we’d stayed in denial about her death so we’d never have had that discussion. Once it was out there, it seemed like any fight she had went away. She was ready for it to be over.
My sister, my grown niece and nephew, my aunt and I all took shifts staying with her and Dad. At first we gently tried to get her to eat and drink, but in retrospect that may have been a lingering need to fight for her life. Eventually, even that stopped.
I’d stay for two days, then leave for one or two. I would go to work on the days I was away. Work became a sanctuary where my mind was otherwise occupied. As I drove the hour and a half back to my parents, I felt the heaviness increase until I had to drag myself up the steps and into their house.
We’d brought a hospital bed into their living room so I’d see her the minute I opened the door. Every time I opened that door, I wanted to recoil in horror. Our mom was laying in that bed dying! It couldn’t have felt more surreal.
By then, she was drugged and asleep, and unable to talk much even while awake. It was a living nightmare.
A strange numb detachment descended upon me. I’ve never been like that my whole life. It was like my brain just shut parts of itself off. I felt made of stone.
We held her hand. We brushed the hair out of her face. We put chapstick on her lips and swabs of water in her mouth. We told her how much we loved her over and over and told her we were going to be okay. We promised that we would never stop talking about her to our kids so they would always remember her. We talked about our hope for the future when we would all be together again and she would be healthy.
I hope that she felt some comfort from us being there with her. I know she was scared; her brow and face would be scrunched up with anxiety and pain, even though she couldn’t voice it. The best we could do was give her the shots of pain and anxiety medication that hospice had left for her.
The last time I saw her alive, the truth is, I knew it would be the last time.
I should have stayed. I should have stayed. I should have stayed.
But when my niece came over for her shift, I left. To escape the horror, the impending doom, and the despair, I went back to my house. The next morning, I talked to my niece and she told me that Mom’s hands were getting colder, and I knew I should go back. I knew the signs of impending death by heart; I’d read them over and over in hopes of preparing myself.
But I didn’t go back. I went to work instead. My sister called me at work to let me know she was at Mom’s. She held the phone to Mom’s ear so I could tell her that I love her. She couldn’t talk, but I could hear her breathing loud in an attempt (I choose to believe this) to communicate with me. My sister then called my brother and they had a similar interaction.
My sister was on one side of Mom holding her hand, and my Mom’s baby sister was on her other side holding her hand when it started. They told her it was okay to let go.
Sometimes I wish what I had was as real and tangible as alcoholism or drug addiction: there is something real to battle and win. Instead I have this intangible illness – this personality disorder – that affects everything I do. I can never be cured of Borderline Personality Disorder, that hurts everyone, and I just have to deal with it until it eventually kills me.
I wonder how many people who have Borderline Personality Disorder die of old age? I know it isn’t impossible, but I wonder what the odds are. Even if they don’t commit suicide, borderline habits can lead to early demise.
Don’t worry: I don’t intend to turn to alcohol. I can’t mix it with my medication. And I won’t turn to drug addiction. I rattle enough as it is, with my daily meds. No, those aren’t the only reasons. My illness hurts those around me enough as it is – why purposely add to that?
All I’m saying is that “15 years sober” sounds better than “15 years off my rocker.”
It’s the type of thing you hope you can forget someday…then spend half your life thinking about it. It’s always in the back of your mind – like a song that stays with you after you turn off the radio; no matter what, the song repeats itself in a loop in the back of your mind.
Recently, I was asked a question, and while thinking about the answer, I was suddenly overtaken by the memory of that day. It came upon me like a hungry tiger tearing me to shreds and leaving me a disemboweled lump of myself where only moments before I was a thinking, feeling, functioning man.
Cotton candy.
The smell of it floating through the air, sweetening each breath. This, in no small part, is making the day better. What else could I ask for? Not only did I get to ride The Bullet this year (a big kid ride if there ever was one), but I also got to walk in the parade, too!
I am eight years old, and my father and a group of his “friends”(other men who lived their lives in the bottom of a bottle) are members of a Veterans group for people who saw combat in Viet Nam. They have been asked to bring their families to walk in this year’s parade during the regional Franco-American festival.
We have known about this for weeks so I hardly slept last night. We each have on a little t-shirt with the logo of the Veteran’s group on the front. I couldn’t be more proud. Some of us have little flags while others pass out bumper stickers, but we’re are all having fun. There is something about everyone looking at me, waving, and just generally having a good time that puts a smile on my soul.
Next, I’ll run for Senate and become an Astronaut. I am on top of the world.
Now, we are being addressed by the Governor of Maine. He is speaking of things I can’t and have no interest in understanding. I have better things to think about at my age: baseball cards, my next birthday, how to stop that stupid girl at school from pulling my hair everyday. I start to imagine pushing her down the next time she does. My imagination runs wild while the speech continues.
I wish Knight Rider would come out next.
That would make this day complete.
In the middle of my fanciful daydreaming, my father taps me on the shoulder and says, “Let’s go.” I don’t know where we are going and I have little time to ask before he starts walking.
Walking with him is always hard. He walks with fast, long strides that eat up the ground in front of him in big gulps. Today is especially hard because there are people everywhere, milling lazily around looking at the trinkets being sold by the vendors and watching the children on the Merry-Go-Round. I am small and not exactly built to push my way through a crowd.
We walk only a few short blocks when we come to this house. It looks like every other apartment house in Lewiston. Run down and begging for paint; sheets in more of the windows than the shades that are popular now. There are huge chunks of the asbestos siding gone to the years of harsh winters with bitter cold. There is a bicycle chained in front that is missing both tires, and the chain has discolored the concrete of the sidewalk from years of sitting there rusting. The body of the house is yellow with a dark brown on the windows and one door that once had glass in the top third of it. A condemned sign wouldn’t look out of place here.
My father knocks on the first door we come to after entering the building. We enter after a yell from inside. I know already what is in store for the rest of the day. I can smell the distinct odor of old beer that has been sitting in the can and getting hot and stale, a smell I loathe.
I see that the room holds the men from the Veterans’ group, and I can also tell within moments that few, if any, had stayed as long as we did after the parade. The slurring of their words, apparent in their voices, says that they have had a few drinks already. Five, maybe six, men and a woman who must be one of their wives. They are sitting around a glass-topped table with legs made of what looks like bent pipe – four separate pieces, connected, shaped like a large squarish C. The walls are dirty from years of cigarette smoke and not being cleaned, making what should be white look as though it were river mud; yellowish brown with hints of green.
In the adjoining room there are two other kids, so my brother and I know that these are our friends for the day, and we run off to see what games are currently afoot. This room is the same color, but much smaller, containing a couch which I am sure has come from the side of the road. The smell of cigarette smoke and body odor lingers everywhere, and I know it is safest not being seen or heard for the next few hours if we can help it.
The afternoon progresses like most of this nature; there are beer runs and arguments, the voices get louder as the hours pass by, and the thoughts get less coherent. I have been in this situation as often as I have been in a room with a window, so I am playing and not really paying attention when it happens.
Why? To what end? Have I looked too much like I am having fun? Was there an instant where I looked too much like my mother? I do not know. What I do know is there isn’t a warning – no loud crash or even an instant where I can feel the malevolence building. One second, I am playing happily, waiting for word to get ready for the few miles home with my father weaving on the sidewalk, and the next there is a hand on the back of my neck and it is squeezing. Hard.
I instinctively try to duck and run, but it’s too late. I have been caught unawares, and the fear grips me like a blanket wrapped around me in a restless sleep, getting tighter with each attempt at escape.
“Come ‘ere, I wan-na show you summten.”
His breath hits me in the face, and my stomach turns, making the terror that has settled in me even worse. It smells of cheap beer, Marlboro reds, and the not-unfamiliar stench of hate. It’s a seething anger that I know well; he had it rough, and I was ungrateful for all his sacrifices. I am just a spoiled little brat that doesn’t know how to be a good little boy – stupid and too much of a sissy-boy for his tastes, in need of a little mettle in my blood.
As I am being dragged across the floor, trying to wrestle myself from his grip, and getting nowhere, nobody seems to notice. There is no apparent lull in conversation. No people crying out for my father to release me; nothing out of the ordinary going on here at all.
“If you don’t quit squirming you little mother fucker…” the threat left open, allowing me poetic license to finish as I see fit. The things that my brain offer are no less frightening than anything he would have managed.
Where, I don’t know, but from somewhere there appears a set of handcuffs. The metal ones, not exactly police issue, but not the cheap ones with a lever that will unlock them if you can manage to get your finger on it. He reaches down, seizes me by the wrist, and clicks the first bracelet on me before I see what he has. The other people in the room have stopped talking. They have all noticed that something is happening and are transfixed by the spectacle of a man dragging his son across the room. They watch, fascinated as it unfolds; rubber-neckers to the car wreck that is in front of them.
Before he clicks the other bracelet in place, he runs it under the leg of the table so my wrists are together with the three inch chain under a leg of the table. Had he been compassionate and put the other bracelet around the leg, I would have had some movement. He is desperate to blame someone or something for the ruin that is his existence, and it is my turn.
Again.
My struggles to free myself prove fruitless very quickly, and I start to cry. Not a whining wail or a screech – just tears, silent and accusing, dripping from my chin, streaming down my face and washing streaks of red into the pale color of my face.
I am too young to tell if this is uncomfortable laughter or if the hate has spread to the others through osmosis.
I get tired fast, and my struggles start to come in spurts. I sit and try to find a comfortable way to position myself in order to rest between attempts to free myself. I try everything. Picking up the table. Pulling helplessly against the pipe. I am just too small and weak to get anything accomplished. My father insults me and pushes me down with his foot while the other men laugh at his words and even a chuckle or two at my tears.
It always makes these type of men feel better to see someone suffer and writhe in pain. It makes them forget that they are miserable human beings, each lost in their own tragedy.
After I have been sufficiently humiliated and defeated, I become boring, and they lose interest. They resume the conversation as though I am not even here. The woman that is here waits until it is obvious that she will suffer no ill will for doing so and gets up to find the keys. I have been under this glass table for almost an hour, and the men are no longer even glancing through the glass to get a look at the kid trapped down there. The woman comes back with a bobby pin, because there are no keys in evidence, and says something about how mean they are. This is greeted with some vulgarity and a warning to mind her business lest she finds herself locked there in my stead.
My wrists are hurting from all the pulling and moving about, red and scraped from the cheap metal of the handcuffs. My shoulders are burning from the struggle with my father as well as the exercise of trying to lift the table.
I run into the living room where I was playing so quietly only an hour before. There will be no more playing for me. Not today. Not for a few days. Once again, I have been reminded of my station in life and the reality of it all.
The woman comes in behind me and eventually does release me from the other bracelet of the cuffs. It takes her a few minutes, and the men start calling to her to forget it, get it later. Eventually, she tires of their remarks and risks their wrath by saying something back. I do not hear it against the thunder in my eardrums that is my heartbeat. I internally beg her to stop. Scared that her mouth will make this day worse for me.
I watch as she walks away after freeing me from the second bracelet. She sets the handcuffs on the table and grabs the beer she left there to help me. She sits down and tries to steer the conversation away from herself by saying something light and funny.
I sit on the couch, scared to move for fear of being noticed again. The tears are slowing, now but a trickle down my face as if they’re not sure I am finished needing them. Each one releases more of the emotions I have paralyzing me where I sit – washing away the pity and the anger that consumes me.
This time when it happens, I hear his chair. It drags across the floor ever so briefly. It sounds like nails on a chalkboard – not fingernails, but nails. I am afraid to hope he is going to the bathroom. Too frightened to turn my whole head and watch him, I try to use my peripherals to see, but the question is answered when I hear the clink of the handcuffs as he picks them up. I try to make myself smaller. Try to climb into the couch as if I were really the cockroach he makes me feel like.
The tears start afresh as his shadow comes near me. This time the sobs over take me. They are so powerful and deep, the world swims around the edges from oxygen deficiency. I do not fight him this time. Years of life with him taught me to know that I am better off not resisting him too often. It doesn’t matter, though; his grip is a vice around my wrist and the nape of my neck.
He is saying something that I can’t hear. The anxiety and fear have deafened me to anything other than my thoughts. I wonder why he hates me; why his love always hurts. What I do hear is the click of those handcuffs as he starts putting them on me again. Snatching me around like a doll to put me under the table once again. This time he puts them on so tight I think they are cutting into me.
I don’t hear the second one click. I hear my innocence being severed from my eight-year old soul. I hear my sanity as it grips the edge of the cliff and struggles not to fall into the darkness that awaits it. I hear the sobs of the little boy that I once was as I enter a maturity I won’t catch up with for almost twenty years. One I still struggle to keep in front of me.
When I think about it now, I can’t remember how long I was locked there the second time or how I got out. I can’t remember going home or if my father tried to be nice to me later. I can’t remember anything after the snap. If you ever ask me what I once wanted to be when I grew up, you will see me think about it, but I won’t remember. I can’t. I don’t remember ever wanting to grow up. I can’t remember anything about that child – who he was or what he dreamed about. He is a far away little boy that couldn’t be invisible.
Couldn’t not look like his mother. Couldn’t find love in a world he never asked for and never wanted.
That little boy is still handcuffed to that table. Still struggles to free himself. Still hasn’t hated himself. Still doesn’t think of death when he wakes up in the morning. He still hasn’t found the release of drugs and alcohol. He will never be mean to someone because he thinks that is how to deal with disappointment. He will never love anyone, ever again. That little boy still sobs in my heart late at night as I try to fall asleep and reminds me that I deserve what I got coming.
That little boy will never hurt anyone because that little boy is trapped in a room somewhere in Lewiston, Maine.
