Tag: self care

Posted on

The Doctor’s Visit. A Scene From My Life

*This script is based on real-life events from the year 2018

Int. Neurologist Office – Day

Morning Appointment with Kerri, Dave, and Mitchell to discuss Mitchell’s seizures and increased behavior/emotional outbursts. The office is new and brightly lit. It is clean with a mural of a child in a tiger costume playing in the grass covering the wall above the chairs for parents. The energy is quiet and tense. Kerri and Dave sit in chairs facing the door, waiting for the doctor. Kerri is lost in space picking her lips, and Dave is on his phone. Mitchell sits on the checkup table slumped against the wall with his IPad.

The Doctor enters. Kerri stands to hug her. Dave looks up and smiles. Mitchell barely says hello.

Cut to the end of the appointment. Close up on Kerri and Doctor who are standing close together by the door. Dave is in shadow behind Kerri. We do not see Mitchell. Kerri is upset, frustrated, and scared. The appointment has provided no answers to Mitchell’s worsening condition. We see Kerri’s shoulders slump and her body droop. Kerri has just, once again, told the doctor that Mitchell can’t even get out the door without a meltdown, that he’s not living a “real” life and she doesn’t know what to do, that she is “losing” it.

DOCTOR

Kerri, you should not be getting him ready for the day, you shouldn’t even be getting him dressed.

KERRI

What do you mean? I’m his mom. That’s literally my job.

DOCTOR

Yes, you’re his mom. But right now your job should only be to love him. You should not be helping him with homework, and you should definitely not be the disciplinarian,

KERRI

(Dead Silent, then stuttering, then shaking, suddenly silent again with tears beginning to escape down her cheeks.)

I don’t even know what that means? That’s not real life. Dave has to work, or we have no health insurance. I’m it, and I’m supposed to be able to do this. How is he going to live a “real” life? He can’t function, He’s coming apart at the seems. And it’s tearing him apart too. It’s my job to make sure he’s OK! He can’t live like this, what’s going to happen to him?! We can’t live like this? How do I do this?

DOCTOR

Take care of yourself so you can be what he needs you to be right now. Just love him. And maybe right now, you’re asking too much of him and yourself. It’s not your job to save him.

KERRI

That’s exactly my job. I’m his mother! He hates me. He’s sad all the time. And these…episodes?! He has to learn that it’s not OK to be mean and violent, no matter what he’s feeling. But he can’t control it, and no one knows what’s causing it. Is this just him now? He hates me, and we’re both at each other all the time.

(Breaking for a second)

I have to help him. I want him to love me again. He gets further away from me every day. I want my little boy back!

DOCTOR

I know. But you can only take so much, Kerri.

KERRI

What if this gets worse? What if he grows up and hurts himself? I have to prevent that! (closed mouthed suppressed sobbing) If he’s not OK, then what the hell do I matter? I can’t take care of myself until I take care of him. That’s what I supposed to do, take care of him! (voice rises in desperation) He still needs to be a kid; He has no life. But he needs to go to school! If he falls too far behind, he’ll never catch up. And this behavior! (throws hands up in frustration and panic.)

DOCTOR

(With tremendous kindness but also firm. )

Kerri, this is happening. You have a very sick child, and all we can do right now is go through the process.

(puts hands up in a sign of making peace)

I know we’ve been through this before, but we have to keep trying. Daily life routines will help, but you shouldn’t be the one to put them in place, Kerri, he can only do what he can do right now, and so can you. It’s too much, and if you fall apart the whole ship goes down!

KERRI

(Hopeless and angry. Feeling faint and weak, but at the same time feels like shoving the doctor. Speaks in a low raw whisper.)

It’s my job to teach him to become a functioning person! I can’t work, I don’t have a life. This is the only thing I’m supposed to be doing, and I’m failing!! I’m failing my little boy. He’s so sick!

(fully sobbing)

It shouldn’t be that hard to get through the day. I’m his mother!

DOCTOR

So be his mom and love him. Take care of yourself so you can be there for him through this. We don’t know how, but it will change. Nothing stays the same forever. Get someone to help you! You can’t be head of the house and be his mom right now. They aren’t the same job. Be his mom and love him. Let someone else be his caretaker and help take care of you too.

KERRI

(Silent. Head Down. Crying. Defeated)

END SCENE:

Except, it wasn’t a scene. It was real.

I don’t remember leaving that appointment. I don’t’ remember what tests or referrals we got or what else we discussed. I don’t know what Mitchell was wearing or where he was when his doctor and I had this conversation. I know Dave was there, but I don’t remember that either.

I do remember my mom was in town because it was Thanksgiving weekend. I do remember thinking about how much I wanted a regular holiday weekend like a regular family and feeling resentful that one of my favorite holidays was being ruined by epilepsy and my inability to cope. I remember feeling frenzied trying so hard to force the festivities, and exhausted from the futility of it all. I remember Mitchell having his bazillionth “wonky place” episode as we were getting ready to go the Thanksgiving Day Parade. He was hitting me and yelling and telling me he wanted a new mother, among other horrible things. Buddha was not himself; hadn’t been for months. I remember wondering if the Mitchell we knew and loved might be gone for good this time; if he could ever come back. Between the meds and the seizures and everything else, there was never an answer. It’s always just trial and error, and I remember wanting to scream at the sky, or anyone for that matter, just to give me an answer. One way or another, I needed an answer. The fear was killing me. The pain was too much.

I remember thinking, This is it, this is our life now. It had already been months of this, just me and Buddha going round and round between seizures and fights, and tears. I remember sitting down in his little blue beanbag chair under the grey loft bed we had no business buying him, totally defeated. I remember the physical feeling of not being able to get up from that chair for hours. I remember crying and feeling empty and stuck. I remember the family leaving for the parade and then coming back and me still in the same beanbag chair feeling as if no time at all had passed. I remember my mom saying that if I didn’t get someone to help me with Mitchell, she would see about getting me into a hospital.

I remember breaking.

And then, I remember thinking I would die before I would let anyone take me from my son. The thing is, I wasn’t sure I could do it. I wasn’t sure I could be what he needed me to be. I wasn’t sure I was strong enough to be his mom.

But thank God, I wasn’t alone even if that’s how I felt.

A few weeks later, I remember Dave found Alex and I agreed to see yet another therapist.

That was the day; things began to change again. But this time towards self-care and healing instead of defeat.

Alex came in to get him ready, keep him fed, and do my dishes. She helped him with homework and created a routine and point system for every action of his day, including a cooldown system for his wonky place episodes. She was the one who encouraged him to name the episodes, and that’s what he liked “wonky place.” Before then, it was just terror and aggression. We didn’t know what to call them.

I remember crying alone in my room…alot…for weeks, as Alex got him to do things I never could.

I remember Mitchell’s breaking point in February when we finally had him admitted because of his erratic, aggressive behaviors. We were at Lucky Strike, and he didn’t want to leave. After screaming in front of everyone, running away and almost out into the street, it took two of us 20 minutes of holding him down to get him into the cab and to the ER. We were finally admitted, and they were beginning to talk about some pretty severe measures. I remember being so deeply scared. I remember him crying. He was sad, and sorry and angry and so so very lost.

I remember feeling a little bit more able to handle the situation.

That’s when we pulled him off the latest med even though his seizure control was the best it had ever been. I remember deciding to give him a better quality of life over his improved physical health. I remember the weight of that decision but knowing it was the lesser of two evils and what we had to do. I remember the seizures ramping up full force all over again.

I remember being better able to handle the situation. I remember slowly letting Alex bare the brunt of the bad times so I could finally be the good guy.

I remember trying so hard, through so much pain, to accept the help I needed so that I could be the mom Buddha deserved. I remember all of a sudden having time and emotional space to concentrate on working through my fears and control issues.

I remember realizing how much of a toll this was taking on my husband and that he needed me too. My poor husband was a shell of himself at that point. He had a new job and needed to focus on that, and he was trying to be there for me. I realized we both had to be well to be there for each other. And so I let go a little more while Alex worked on Mitchell and my therapist helped me begin to process the trauma and grief. I was starting to accept compassion from my friends. I began to take care of me. And slowly, I began to like the way it felt to take care of me. I wasn’t feeling as guilty for what I couldn’t do, but grateful for what I could. I once again began to feel grateful to be Mitchell’s mom instead of fearful that I was the last thing he needed.

Then, all of a sudden, it was summer, and I remember feeling a little relief. I was relishing the happy, and I was feeling gratitude and love. I remember so many fun days from that summer. Fun days that were still interrupted with wonky place times, but were manageable. Or rather, I remember feeling like they were more manageable because I was stronger in myself. I remember the first time I didn’t have a big emotional reaction to one of his episodes and could walk through the steps with him calmly. I remember Alex standing up for me. I remember getting a little more sleep. I remember the warmth of the sun on my face and more peace in my heart. I began to feel proud of myself as a mom.

We got to be OK with defining a new normal, and I had more and more strength to be what Mitchell needed me to be. I wasn’t just recovering from my break, but I was building myself up stronger than before, more confident than before.

I remember beginning to get more snuggles and focusing on the love and connection rather than the daily charts and behavior control. I remember thinking how hard this was but how blessed I was (and am) to have this amazing, brave, loving boy, and to be his mother.

I remember Mitchell being happy and feeling proud too. And what a boost that was!!

I remember starting to work out again, and I remember the day I woke up and didn’t dread what the day might bring. I remember the day Alex and I started Lost and Found Moms and my amazement that I could not only be Mitchell’s mom but work again too. I remember Dave and I started going on date nights. We even spent the night away without Mitchell, over a year later, of course, but we did. It was the first time since before Mitchell was diagnosed that we had done that. And I remember sleeping like I hadn’t in years…and not feeling scared or guilty.

I remember starting to forgive myself for not being able to save my son. And I remember Mitchell being able to look at me with brighter eyes and telling me he loved me.

It was a very long year, but I made it through stronger than ever, and Mitchell did too. I remember feeling like I wasn’t failing at being his mom. It felt like I was beginning to let go of some of the control I needed to have all the time, the control I thought I needed to have to save my son, and I remember feeling more able to go through the changes of this crazy life with more acceptance and gratitude.

I remember telling Mitchell, “Buddha, I love you more than anything,” and him saying it back!

END

*This was, of course, not the end, but a moment in time. The moral of this play for me is to remember that accepting help is not a weakness, but a sign of strength. That I am more able to be the person, the parent, I want to be when I accept what I can and can not do. And that I am the mom Mitchell needs me to be, because I will never give up on him…or me.

 

Posted on

To Be Found, Get Lost

No matter how much light I carry within me, there will always be times of feeling lost, being confused, seeking direction. It is the way of the human heart.
~Joyce Rupp

It’s easy to get lost. It’s easy to live each day reacting, unconscious of our patterns until we realize, too late, we’re stuck. Creating muscle memory that keeps us lost is easy. It’s easy, even normal, to assume that lost means forever less-than, forever unconnected.

I spent much of my life lost, trying to escape a maze of my own creation. Desperate to find a way out of my own defenses but unable to escape, I wandered the same paths, hit the same dead ends. I wondered why I always picked the wrong boyfriends or left jobs just when they were getting good. I would gravitate toward abusers and wonder why I was getting abused. No matter what I did, I couldn’t break the pattern. Then when Buddha got sick, my maze became alive with true deadly threats and the sky came barreling down. I was not only lost but trapped.

When we first navigate the world we are unaware we have a choice in picking a path and are instead led. Led by our parents and their unconscious mazes, an underdeveloped understanding of destiny, and an insecurity about our rightful place in the world. We are taught we are not enough. We are built to survive, to erect walls of protection rather than thrive with open confidence.

At least that’s what happened to me.

It is an ironic habit of human beings to run faster when we have lost our way.
~Dr. Rollo

My mind creates a subjective story so convincing there is nowhere else to be but lost. I begin to crave the safety of its familiarity, the consistency of it’s promised punishments, and I don’t see another way. I believe I am getting exactly what I deserve.

The greatest lesson and biggest irony of my life is that the thing I thought for sure would kill me is the thing that freed me from my maze. Buddha’s epilepsy.

My way to freedom began when I finally realized that feeling betrayed, wounded, and violated wasn’t the worst thing that could happen. That it wasn’t going to kill me, at least not yet. Watching my son’s life wane, his essence fade, his brain retreat is a pain unlike any other. I wanted to die. It was a fate worse than death, I thought.

But now I know what’s actually worse than death.

Living like you’re already dead.

That was my maze. I realized I was living like I was dead. That in some ways I had been “dead” most of my life. I was lost because as a child I was always waiting to be disappointed, then when Buddha got sick, I was waiting for death.

Every obstacle was one more thing I couldn’t handle. Every school meeting, doctors appointment, lost job, missed lunch and friend who didn’t call became another dead end. Living got too hard, the fear got too big, and the next drop was sure to be my last. Until the next one, and the next one. Even as I kept getting up, I complained about how lost I was. I was living like the dead.

I was lost but I wasn’t really trapped. Mostly, I was scared and hurt. I wanted it to all end in a timeline of my choosing.

I was (am) afraid my baby will die in his sleep. But that’s not today. Letting go of death is freedom. It’s hard earned and scary. It’s not always possible, but it is achievable none the less.

Some days are so hard I don’t know how we’ll get through them. And sometimes those days add up and bleed into each other until I am sure they will never end. But that hasn’t happened yet. Today he is here and I am here. Today is not yesterday and tomorrow is a long night off.

So, until the day I don’t get up, I’m not going to live like the dead anymore.

Not until we are lost do we begin to understand ourselves.
~Henry David Thoreau

And then I realized something else about being lost. Something I forgot. Not all paths need be paved, not all journies need a planned destination.

Since epilepsy began, and even before when my childhood maze seeded young adult choices, I forgot how much fun it can be to get lost. How freeing and fortifying it is to find your way on a path you didn’t pick. How satisfying a trip to Princess Bride romance land, or sneaking off to camp in the desert can be. The inner strength dance gave me, how powerfully healing music is or how healthy puppy memes are. We are built to survive, but also to love and connect and replenish in the sunlight of fantasy, forces outside ourselves, and mistaken roads.

When I stopped getting lost is when I began to lose my way.

I never get lost in music or story anymore. I don’t go to the movies or watch TV. (Unless Dave and I are doing research for the apocalypse and studying zombies and robots taking over the world. Probably not the healthiest use of my time.) I read books about trauma and alcoholism and epilepsy. I never catch live bands, I critique theatre and am startled by any sudden jump in noise or movement. Everything irritates me because I don’t allow myself to be lost. I surrendered that space in my soul because I thought that’s what it meant to be a good mom. And because I thought if I opened myself up to that freedom I would lose my little boy.

But he’s here and all I’ve lost is the capacity for fantasy, for dreams.

As a young woman, I was not afraid to be lost. I figured I’d find my way eventually, that life was meant for dreaming. But then experience let me down one too many times and my maze grew too tricky, my patterns became unbreakable and my life settled into ultimate unworthiness. As if the journey had already ended.

I mistakenly thought dreams were the problem. That I had to face facts and accept my life. Well, that’s true, I did have to learn to do that. But I was wrong that it was a trade. I never needed to trade fantasy for reality. I just needed to live in its duality. I can’t believe how long it’s taken me to figure that out. I can’t believe how hard it is to do.

But as of today, I have survived reality so far. I’ve survived some pretty hard shit, so I must not be that unworthy. I’m still standing. I keep finding new ways to heal, new ways to love. I keep getting stripped to the core but rebuilding. I’m a mismatched transformer at this point, but I’m even getting to be OK with that.

I do have to keep my wits. My son needs me to be on the ball and keep the pieces moving so he gets the best possible chance at life. I can’t just take off for the desert or run from my reality. My body breaking down and I can’t dance with the same physical abandonment. I have lost pieces of myself along the way, but that doesn’t mean I’m done for. It doesn’t mean I’m not allowed to dream.

At this point, I am uncomfortable with letting go. I don’t know how to anymore. It feels awkward and the muscle memory is forgotten. It’s all conscious and a lot of effor. It’s hard. So, I’m going to rebuild that too. Happiness is a muscle like any other. So, bring on movies and the music and “let me dance for you”.

I will no longer be afraid to dream, to feel fanciful…if in very small doses at first. I will commit to giving myself as fulfilling a quality of life as I have committed to Buddha’s. I will live like there will be a tomorrow.

I will get lost and learn to live again.

I got lost but look what I found.
~Irving Berlin