It’s Sunday! And as you know Sundays are for blogging.
My daughters are seventeen, seventeen?! Where did those years go? They are beautiful beyond my wildest imagination and lately I’ve been able to travel back through my memories. Prior to this I never could really. I was traveling forward at the speed of light. Now I am glimpsing, staring out over the horizon.
We went to The Melting Pot yesterday. My little family plus a boyfriend (not mine obviously) and a friend. Each girl had a plus one. It was such a lovely time. I was present and the kids were happy, and that in and of itself is amazing. It felt good. They enjoyed everything so much. Just pure joy.
There was as always a couple of empty seats at the table, that should have been filled. Holes in my heart. I thought about it a lot as I always do, how the little one would delight in playing at dinner. But it didn’t steal my presence any longer. Nothing is worth that, no amount of pleasure or pain, to lose yourself and your luster for life. Not an option.
This morning I read a post on the complex ptsd group on Facebook. Someone wrote about how they shiver and shake in social situations and wondered if anyone else gets like this. I was so strong and resilient I had no idea what I was experiencing all of those years was complex ptsd. All of those physical ailments, intrusive thoughts, fear of dying, and complete terror ridden thoughts nearly constantly. Feeling like I didn’t belong, wasn’t good enough, and then betrayed by my own body. And not one single person put that together. The link.
Truly the world was just fine with letting me be strong and captivating as long as I could maintain it but god forbid I struggled. I got teased and truly just internalized that I had a problem. Absolutely brutal. All the while gratefully helping anyone I came across because I was just thankful to be alive and safe-er than I had been.
No one saw. I was such a good little soldier. And now I am going to spend some time honoring my journey and my story. I’m not sure what that will look like, but I know as the chaos calms I am organizing my thoughts better (at all) and so that helps me to know I’m on the right path.
There was something going on with me that I didn’t have the language for.
The only language I had was shame. Some people deal with this in ways that make them look even more efficient and attractive, but underneath the surface something very different exists. As I let myself be congruent with what I was feeling I lost a lot. Anyone who would judge me or take it personally, and everyone who couldn’t see the pain that was inside.
I think now and wonder how no one ever bothered to connect the dots before.
You think I’m just this island and doing fine? You think my physical symptoms, my sweating, racing heart, tingling limbs, trips to the emergency room, being spaced out and not able to focus that those were on purpose. Why didn’t anyone see? It always became my fault. Always judged for it. What’s wrong with YOU. And I better get this under control I thought or no one will ever love me.
If I couldn’t concentrate on what you were saying or even driving somewhere didn’t you ever wonder why? Beyond I didn’t care?!
Why can’t you focus, why can’t you remember how to drive places you’ve been there many times, why can’t you just be more quiet and need less attention, why can’t you suck it up, why must you have so much pain that you packaged away as to not bother the world with it?! Why do you need so much attention, any attention. Can’t you just manage that. As it turns out I could for most of my life.
Well I’m about to get loud.
It’s never been productive trying to have to shout to someone to get them to understand, to stay, to see. I always wanted to stay, but you were always going to need to see me too, and act like it by showing up.
And you…..I don’t want your promises of grandeur when you know damn well you won’t even answer my call unless you’re out of the house. Disgusting. I never deserved that.
I never deserved a lot of things. One being a paranoid delusional mother who was volatile and selfish and empty in her eyes. Or a cold womanizing father, predatory, who was only willing to have a relationship with me later in life if I had no questions and no emotions. Neither ever became a parent to me. They could have. They had a choice.
Everything is always a choice.
I never deserved that the safest place to land was with a martyr victim quietly co-dependent grandmother, and a harsh authoritarian grandfather, that at least was a little less dangerous and cruel with me. The real danger was his daughters jealousy at that. I was not supposed to receive anything they never did, after all I was not supposed to be born.
They would be nice when lonely or wanting something from me, while simultaneously telling me all their woes about everything and how much better I had it. Then when angry they would lash out say horrible things to me, physically chase me, or ignore and stonewall me. Getting any kind of attention that was pleasant was like a game of chess. I became the perfect player. My wits needed to be sharp to get the most out of that life, and I sure as hell tried.
He could even be warm sometimes. There were moments they both had genuine affection for me, and while completely burdened with the mentally ill children they created, those good church farers pulled themselves up by their boot straps and raised this granddaughter. Raised seems a generous term.
What I didn’t know was after getting out
alive how scattered my brain would be. How confusing it would be to be able to determine what was safe and what wasn’t. There was nothing about knowing who I was or my dreams. It was a game of survival.
A hunger games without the flashy costumes and weapons. It was mind war fare. It makes me skin crawl talking or thinking about it, that’s why I rarely do.
When I finally did go to college I was plagued by anxiety, and I didn’t even know it was that. That too more evidence I wasn’t normal and I was bad and wrong. Never once all that time did I realize I had illness I never asked for. That I was a victim not acting like one.
No one put it together. No one. No one except me now.
So you saw me functioning right ?! Trying to make a life with everything I ever studied to try and make that happen. But do you know most of my life I felt pain and fear and gave out love anyway. I gave it anyway so no one would have to feel like I was.
I have tried my best with what I was given. I’ve tried to keep the damage I was inflicted with off of anyone who comes into contact with me, and at bay. But I never knew I was allowed to claim my whole story and heal. And by god I fucking will.
I’ve had to crawl out of more shame than you can ever imagine and just talking about it is almost impossible. I took the responsibility for my whole healing on all by myself and I was trying to keep anyone from having to be uncomfortable. I wanted to make all the discomfort around me stop. I comforted all of them. I rubbed my moms back, listened to her pain constantly, even as she lashed out on me constantly. I spent time with my aunt I tried to be good and when I couldn’t I shamed myself. I was bad and wrong and not enough. And I carried all of this into the next steps of my life, all the while looking enthusiastic.
A pretty….. lost….. person.
So when you see me staring out in space maybe just maybe I am dealing with these memories. Not lacking presence or wanting to be connected. I wanted those things more than you can ever imagine.
If something doesn’t feel right it probably isn’t. Bottom line. We have had a terrible experience with Yale Reproductive Center. I don’t even want to walk back through those doors. And despite what this will be chalked up to this is not just an emotional meltdown grasping for something to blame in grief. I know all about that. I’m a mental health counselor. This is about trust. You trust a doctor because you think they know more than you, but what was missing here is that they did not care nearly (if any) about us. I’ve felt this way for a long time, but since I wanted to keep my eye on the prize and “stay positive”, like everyone tells you…. I stayed quiet. I stayed quiet through the many alarms going off in my head. My hunch is even our IUI’s could have been planned better and paid more attention to.
I think if they communicated and paid attention then we would have a baby right now. I believe that with my whole heart because of the many evidences of them not knowing what was going on with anything.
And I already know what they can and will do. They will cover up for negligence by the fact we are clearly just emotional. That’s what will happen here. That’s how large medical practices get away with things all the time.
So here is our story:
Worst experience I’ve ever had with a medical institution. You are a number. You see a different “fellow” every time, and your “doctor” one or two times. In my opinion we would have been pregnant long before if anyone in this place communicated with one another. I’m sure you could and then will chalk this up to being in a painful emotion. But that’s minimizing what actually happened here. How many irresponsible things happening with our time, our money, and our hearts.
From not knowing our correct protocol, and if I wasn’t on top of it we would have started taking incorrect medicine. To the fact that the offices terrible communication led to a decision about frozen or fresh transfer to be made immediately while I was seeing clients back to back. The woman called back and asked my wife (I’m a woman we are gay) if she wanted to talk to her husband. We have been patients of yours for over a year, you’re handling the future of our baby and our joy here, and you don’t know who we are?
Then let’s get into the back and forth over frozen or fresh transfer. It’s appearing now that we should have done frozen and we think someone set it up because that was best, but another person said it was borderline. In the end the morning of it took a long time for everyone to get on the same page. We never spoke to our actual doctor at all about this, again a melange of 1st, 2nd, and 3rd year fellows.
I am not a doctor and I was concerned about the high thyroid levels that spiked with the fertility medications, the ones that we tried so hard to get down prior to trying to conceive. Our thyroid checks were not stayed on top of throughout, because no one speaks to each other.
We get a report in the beginning of mono diamniotic twin pregnancy, we are cautious as it’s early. And nervous because it’s higher risk and we know that. We go back in and it appears there is one sac and a hematoma on the other side of the membrane, we are possibly a twin down and we went in for heavy bleeding. At this time we see a tiny heartbeat and are given hope, sent home with a picture of our baby. No one said what I was thinking the whole time. If one twin goes because of a chromosome abnormality and they are identical the other is going. Was it too early to know these things. Sure. Should we have been fully spoken to by our doctor, a full experienced doctor about the risks. The heartbeat was 110, the bottom of the scale, it was on its way out too and yet we went home excited and the staff encouraged that. No one said be cautious and specifics about the mono di.
In fact no other resident even mentioned the twin situation. An actual doctor dr Pal, did the first ultrasound and gave us real info, including how early to tell. We aren’t stupid, but it’s the most questions I had answered the whole time. She did not check on us when we had bleeding, she did not check on us at all.
At this time we were told to come back 3 days later on a Monday to check things. My wife called to make the appointment and they said they didn’t have anything til Thursday. Again if we were told to come for bleeding where is the follow through.
This fertility clinic is the do it yourself variety. This is the target self checkout and if there is an error you better know how to fix it yourself. I have so many questions, so many anxieties, my wife and this baby we want to have are my world. I’m not a number. I’m a human.
So the set up was one baby was ok with a heartbeat and the bleeding stopped fully and we got excited again. And when she went to the ultrasound I was on FaceTime because I’m trying to provide and it’s just an early one. I had been at every other appointment no matter how small. But this one my wife’s twin went with her and I was on FaceTime. I got to hear our baby has no heart beat and probably hasn’t in a week from another different doctor over a screen before my 3 pm client. Again no word from dr Pal. We should have stopped progesterone a week ago so my wife and I could get on with our grief, and we would have known that if they talked to each other and prioritized our Monday appointment. We had just had bleeding. No one cared whatsoever.
Yale gets picked for its name. And I think they have forgotten real human values. It’s a machine, and contrary to their words to dismiss my many concerns they are not “a well oiled machine.” I will never affiliate myself with this group again.
My wife was sent home with a hat to collect our dead baby in and a specimen cup, and a two sided pamphlet about support groups. No word any of the way through our miscarriage from the actual experienced doctor.
The only comfort there are the few gems of nurses we will remember fondly in our hearts. The ones who get it. Doctors became arrogant and lost, and I just plan to learn from that. That I’m not too important to sit with a human and talk to them fully about what they are feeling and going through.
We will be just a statistic to them, an angry customer clearly clouded by grief, but they have a legacy with us.
We will be seeking out a space to share our very intimate fertility journey with people who genuinely show us the attention we deserve when they are getting thousands of our dollars, and holding our hope in their hands. There is a way you treat people and this was not it.
We will not be walking back through the doors of Yale fertility! There is a reason their reviews are terrible. I am so disappointed and hurt with the lack of care we have received.
I will never again put our care in the hands of someone who is an expert in medicine that isn’t also an expert in caring about the individual.
I am relieved to find that as I began to read this morning, all of my own words began to take precedence over the page. A lot of times that’s how it happens. I’m also a little surprised because I feel too weak to even write. Reading felt somehow more resigned from my usual 1000 watt glow. Just after I wrote that line I felt immense gratitude for my mind and my self. Not everyone has this drive. There’s a dark underbelly to it though, and that’s a whole separate blog post, that isn’t quite ready to emerge from the Koi Pond that is my mind. Picture an over populated one with the fish frenzied and panicky and you might have an idea.
I had a Crohn’s attack last night. I have to get this out first so I can move on from it, otherwise it will impart a tone of sadness or less sparkle to my post, and you, the reader won’t know why. It’s been so long since I’ve had one I almost forgot I have this fucking disease. I think the fact I am able to forget for periods of time is a genuine blessing, and I also attribute it holistically to the peace and happiness I have found in this half of my life.
The attack goes like this this time. They can be different, and come on without warning. I typically limit myself to one drink these days as alcohol works very poorly with my system. This fact makes me feel socially stunted in certain ways. I’m at times jealous of my pals that can “have another round”, and not pay some price. But I’m finally getting over my id, and being able to accept my special instructions. I used to get really down about it. Severely worried I could turn a fun evening or getaway into a pity party for me, and inconvenience people by needing to leave quickly and without warning. I’m overwhelmed easily enough in those situations, without my body rebelling against me as well.
I had a cavatelli pasta with lobster in an old bay cream sauce. I also mixed some of my friends salad with it, because it was just sitting there. She was selling solar at the dinner table, and I was reading a debut blog post that I’ve been anxiously anticipating. Not the present dinner I would, normally go for, but I match affect almost naturally at this point. And there was live music, so struggling to hear one another was annoying me anyway.
The salad was probably the nail in the coffin. But I’ve realized by this point it’s not fair to me to try and figure out what I’ve done wrong in the scenario, sometimes I’m just fine. But any creamy sauce mixed with salad usually marks death, but I had been spared for so long that I forgot. I had one martini with lots of food drawn out over the whole evening. So when I became very dizzy when I got home, I couldn’t understand what was going on. My heart began to race and I thought maybe it’s just exhaustion let me lie down.
Next thing you know it’s 2 am and I wake up with my heart beating around 120 bpm, feeling like my stomach is simultaneously on fire, and also being squeeze and writhing like a boa constrictor trying to make its way out. I break out into a sweat all over. I barely make it to the bathroom, and while I’ll spare you the more gory details, the fact that much of anything can come out of one human made me actually feel like I might die. I felt as if all of my insides were being purged, not just the contents of my bowels. It hurt so excruciatingly badly that for a few moments I debated calling for my wife (what only to disgust her and embarrass myself, what could she do anyway), calling an ambulance, and then went down the path of wondering what they could do or would find. It started to radiate all through my back, aching, twisting, and the sharp chest pains that used to send me to the ER.
After a bout concluded and I was given sweet relief for a few brief moments, my heart rate would be down in the 70’s and I would begin to shiver violently. I got back in bed with my wife, she was loving, covering up my cold parts and becoming comforting, rather than annoyed she was dead asleep. She is a blessing. She asked if I was ok, I said no, but I refuse to begin panicking because once that starts it’s really hard on my body. So if I got her all up and concerned I would feel even more anxious.
I was hoping I could settle into a coma induced rest after that. A sweaty, tangled, dehydrated mess, thrashing between hot and cold. But then I heated up again and felt as if my face was burning, and my heart was high again. It was time for round 2, 3 came later. And by the time I went to sleep I know I was dehydrated enough that IV fluids would have really helped. I used to feel safe at the hospital and like they would be kind and comfort me. After so many experiences and them not believing you (before diagnosis) I’ve had such poor treatment at times, that I will be on deaths doorstep before I go.
As predicted I woke with a monster headache, squeezing and pulsating behind my eyes. And a weakness that could only be described as feeling like a corpse that has been summoned on All Hallows Eve. A lead block could have become mobile easier, but nevertheless I am a slave to my writer’s mind which wakes promptly around 6 am and will not stop yammering until I get it something to do.
So here I am in my beloved bath. I was very careful this am and even thought of skipping it, as losing even sweat at this point could probably put me in a life threatening situation. So the water is tepid, and I pre-gamed with slowly introducing fluids, a banana; a couple crackers and a Tylenol awhile before. My head is still pounding, but after being through hell much of the night, the water soothes my screaming joints, and cleans the stress and suffering off.
This seems so unfair my inside self throws a tantrum, the outside self unsure she can even make it out of the tub, let alone move or make her head throb worse. I should only feel like this if I were irresponsible and drank a ton and am hungover. Who gets the hangover without the party. The self pity is a seductive mistress. If this went on as it did before diagnosis for weeks, and any food became Russian roulette, perhaps it would get me again. But it never helps. I’ve learned I just have to care for my body better and be kind to myself when this happens. To not become enraged at the time it took from me, especially in recovery. A vibrant hyper strong woman reduced to barely being able to pick her head up.
I just go back to how blessed I am in life and love, and believe it will pass, rather than running all the scenarios and what if’s as I used to. This one snuck up on me so stealthily though. I am sad and hurting, while also trying to hold to the determination I have, and joy I feel writing. I must give myself permission to lay my truth on the page, and not believe that I needed to be able to whip up something witty and charming, to be able to take up space in the world. To not fear others as me seeking pity. I am seeking solace in the act of writing. And if one soul finds this kind of determination inspiring then amazing. If not I still have these thoughts written down so I can see myself in a compassionate light. I just want to hug her, and this was not always the case.
You see here is what’s been happening in my mind and my heart. First, I didn’t know I would spend most of my post on this, I expected to gloss right past. So this post shows me how much room my feelings around having this disease need, and how cathartic to write my truth as I’m experiencing it.
Truth be told whether it’s wanting to make sure I’m determined, or whether it’s another aspiring writer’s courage, it looks like my current writer’s block might be broken. Maybe yes, maybe no. The block itself I am recognizing has been caused slightly by the all consuming nature of trying to conceive. That’s actually what I meant to write about. How I can hardly think or focus on anything else. How even if we don’t talk about it, or take the advice of others “just don’t think about it”, wouldn’t that be nice.
It hangs in the air as if it’s one of those machines that freeze everything, but myself and my wife. Our journey is in movement, and the rest of the world is frozen. And I can’t move or breathe until we get that positive. And I can’t even know how I will feel, how she feels, how my family feels, because we are experiencing a great in between right now. Right in between a before and an after.
But you know where I’m not anymore? Purgatory.
I’ll be happy everyday for the rest of my life for this new in between. And I’ll take what comes, with as much grace as my fragile human heart can muster, including the ambiguities of this disease. Because love is my lighthouse, and no matter how rough the seas are, I can always find my way back to my heart now. We are not separated.
I’ve been lost in the trenches lately. The high of finally finding a healthy love has waned into the realities of blending a family, and helping teens navigate the murky waters of adolescence. And that is ok, it’s part of the process. Wouldn’t we like to stay in the good feelings forever? Why must we also wait and feel through the hard times? For perspective of course. To wake us up to all that becomes invisible in the rush.
I’ve been riddled with ADHD lately. I am really suffering with it. As I vibrate with an almost visceral certainty that my story will be written and shared with others, the closer I get, the further I feel. What an illusion! The Universe is a great trickster, and I’m taking the joke overly seriously all the time.
I seek something to fix this pain all the time. Chocolate, food, happy hours, snuggles…. some healthier than others. My frenzied mind that constantly is telling me I’m running out of time. Always miles ahead in awareness. I can’t even hide from existential truths long enough to allow more joy. One of my greatest tasks right now.
This morning I’m thinking back to a time when I worked 40 hours, had internship and full time school. When I didn’t breathe, and I somehow managed, and now I have way more time… and yet it seems always not enough. I’m thinking this not enough bs is a filthy filthy liar. Why are we like this? Is it an innate drive meant to help us survive ? Then why is it killing us in droves? It’s killing spirits and dividing families, and it’s simply not true. We are enough, we have enough. We are usually more than we realize, and have more than we realize.
I have relationships with Clients that are valuable and I have one fully present hour a week, and even later move to every 2 or 3 weeks as they fly out of the nest more often. These are meaningful relationships and they are just one piece of the puzzle. So why do I always see mine with my children as I can never connect or do enough? It’s deeply painful. Maybe that’s also why they feel it’s not enough? I’m afraid sometimes that my kids get even less than that one present hour weekly even. Often my love is shown to them in acts of service in between things. We can’t always see a transition as it’s happening, and after are left reeling to figure out how to adjust. That’s what I am going through right now.
I stumbled across a show the other night on Netflix. It’s called Atypical. One of the best things that ever happened. First, it’s depicts so wonderfully some of the challenges children and parents with autism experience. I love that! But the part I really identify with is how as the teens grow and face growing up, the parents are also facing who they are, and what their roles are now? They are up against feeling less needed, and being pushed away. I identify so much. My last tiny one who has begged and begged for time with me is now bristly and defiant. The breaking of my heart is audible. Mostly because I realize how many times she asked for just a moment of my presence, and I didn’t know the value. I had free front row seats to Hamilton for one of the best experiences in life, and I was lost in my head worrying about providing, and my health, and figuring out how to run a business. If I had just lifted up my head out of that fog a little more. What if I screwed up? And see even now I’m doing this thing…. because weren’t there still moments of beauty in between? But my hurried mind is always trying to skip ahead, it can’t settle down enough to just be in a moment. I know I am not alone in this.
It can never just be that I am meant to be this way. It always has to be what’s wrong with me, and how can I do better. One of those questions helps, and the other hurts. I work so hard to ask my mind to just take it one moment at a time, but it wants to bite off ten. It’s painful really. We have to work with what we have though, and find outlets, and places and people who understand our brand of crazy. And we have to work harder to see enough versus not enough. It’s our only choice.
So many hard working beautiful people suffer at the hands of perception and misunderstanding, and our own innate nature as human beings. One of my greatest missions is to be a part of alleviating this. One of the best ways to do this realistically and fairly with life’s demands is simply to realize: your story as is has tremendous value!!
Hopefully in an upcoming post I’ll be talking about how wounded people, wound people, and that there is hope for this. Listening and seeing when we hurt someone, being willing to look at our own part is the key to change. It’s messy work, but on the other side it’s so worthwhile.
My life’s work has been on healing fractured attachments. I had to begin with my own, understanding my own behavior and actions, and fight to make changes. On the other side … this space where I am healing I can see where I have been, and it makes me able to help understand when others have found themselves there. A wounded healer, and an earned secure. This work is not for the faint of heart, and it’s also not impossible. Are you ready for your life to feel better ?
It’s been a weird couple of weeks. I wonder if it’s something in the Universe and others have felt this way as well, or if it’s just unique to me? I feel like when I haven’t written (on here) in awhile, I need to find my way back to my writer self. The muscles groan and protest, as if they are saying “you can’t just come and go as you please and expect us to function, this is a commitment. That’s how it feels anyway.
I’ve been consumed in not feeling well lately, and exploring the emotions that arise here. Lots and lots of anxious thoughts, and worst case scenarios. Probably not helped by the fact that I recently saw a campaign to raise money for a woman with stage 4 lymphoma. The woman was someone who traveled in circles of friends of mine at a significant time in my life. During my newly being “out” as a gay woman phase. I knew people who dated her. I hadn’t thought about her since. And here she is with a wife, two adorable children, and cancer.
As humans we protect ourselves in a variety of ways. One of those ways is a powerful, fully operational form of denial. It is constantly present. This idea that could never be you. The less degrees of separation bordering you from a truer realization or your fragility, enter more anxiety. I often function by thinking thank goodness that isn’t me, and quickly busying myself with a protective layer of every day life that holds no room for morbid thoughts. But I am the type of person who possesses a keen awareness of the whole truth and nothing but the truth, as much as my human mind can comprehend. Often I wish I wasn’t, because then my mind would not be able to drive me as crazy with its frenzied thoughts of madness. To live fully is also to be mad I think. Mad with desire and mad with fear. Because if you know how much true beauty there is to be had in even the simplest of moments, you also know how fleeting those are. Always outracing an invisible force, that only I seem aware of. Or only I appear willing to acknowledge, and when I talk about it frankly I know the darkness in my thoughts frightens others. It’s like we know but don’t say it. You’ll jinx it. What superstitious creatures we are.
The first of the not feeling well began with some odd pain in my upper back, and extreme fatigue. I remember laying with my partner and feeling the first 2 fingers on both my hands be sort of numb and tingly. This driving me crazy of course, firing all my alarms there’s something wrong here, and the story tells if worse horrors then a flare up. It always does. I couldn’t get warm to save my life. I’m often cold. As all the weird feelings took their turn on my body I steadied myself in her arms. A safe space. Thank God for my safe space these days. It’s the only reconciliation I can find for knowing that my days are numbered. All of ours are, and someday maybe, like my grandparents, we will be resigned to checking the obituaries page daily and reading aloud to one another about the latest friend who has passed away.
The episodes include flushing. A delightful thing that is triggered by being over-tired, alcohol such as red wine, and sometimes stress. It feels like you’re on fire, mostly just your face. Hot, head achy, and dizzying. All you can do is lay down, maybe and ice pack and wait to it to pass. Often this is followed by a bad stomach and then elimination that leaves you shaking and freezing in an exhausted heap after. Either too hot or too cold always, the days you feel good being remarkable in their noticeability due to rareness. During times like this it’s a guessing game of what yuck Unidentified symptom will be the flavor of the day, and how you will keep the silver linings ever present as protective cloak. After only so many days you feel your spirit being eroded away at, and the irritability sets in.
Being overwhelmed happens so easily when you’re trying inside your head to manage your invisible symptoms so no one worries or feels sorry for you. Trying to feel normal. If you fall into the trap of thinking about them too much, or too much validation you run the risk of letting it take over your spirit. I refuse to do that ever. But then I think of how draining this is, and cannot imagine fighting cancer to keep my life. It’s hard now. I fear I would not be up to that task.
After the couple of draining days follows a moment of hope, a good day. I bask in it, soaking it up to carry me through the rest. And then the back injury, ironically it happened when I wrote my last blog post. Sat too many hours in a tall kitchen chair without lumbar support (apparently). Because when I got up my back was sore and I couldn’t figure out why. But with as many ailments I thought par for the course and carried about my day. What was supposed to be a quick trip to The grocery store to drive my son to work, became a nail in the tire and 3 hours at a shop with bored twin teenagers. We ate McDonalds, gross no wonder I’m sick 😉 it was 16 degrees and the only walkable distance to bide our time. By the time I sat and got up a few dozen more times into that evening I was nearly paralyzed. Could not walk without agonizing pain. Since I’ve also been down this road I called a physical therapist I know and trust and got in right away. This story could become so long… so let’s just say I finally won the round for much needed pain medication. I may have won the round, but it feels like I lost the game. Going on two weeks of limited everything. Co-pays, heating pads, one wrong move and spasm again after so much hard work… the back let’s up and I get 1/2 a good day and the migraine strikes. Pulsating, furious, making me nauseous. I take the migraine medication and feel weird like I may not actually be breathing, like my heart may have stopped altogether, like if I go to sleep I may not wake up. All this has been in between work and life and dogs and snow and ice and teenagers.
So here I am today at the beginning of two much needed days off, and I’m so afraid they will need to be spent resting, because the migraine remnants have left nausea and a sapped spirit in their wake.
Amidst all of this writing is my breath of fresh air. This is me when I can find hardly the will to do anything still fighting for what I love. I have wanted so badly to write, and yet my mind has been consumed with pain. It’s nearly impossible to think when your body is racked with one symptom or another and you’re just trying to catch your breath in between. This is my way of honoring my experience. When I see it on the page I judge myself. I sound so dramatic, it’s not as if I have stage 4 cancer. This perspective becomes a slow dance with denial, so I can live as fully as I want to. I was blessed with an iron clad will. My gift from the Universe. It must have known I would need it. I choose my reality regardless of my circumstances. I have chosen for it to always be this way.
This is an experience I am having currently with chronic illness. Right now it refuses to be ignored, and constantly sucks at my writer’s soul. Stay tuned because I refuse to give in. Stay tuned because between the night sweats, pain medication roller coaster, confusion of “the correct approach at healing”…there is wisdom between the lines, and between the symptoms.
*this blog became by unrefined process very disjointed. So here’s a little help. If you are interested in parenting and the struggle involved, if you are a Highly Sensitive Person, if you struggle with Chronic Illness. If you are seeking balance in your life in any way. If you have a blended family, or are struggling with co-parenting with an ex partner. If you enjoy reading other people’s story, and delicate weavings of past, present, and dreams for the future, then you may enjoy this. If you are willing to sit through a writer who goes off on tendrils of branches, and who is currently finding her rhythm and tone.
So here I am in the midst of daily struggles with teenagers. I want to share with you a raw accounting of my personal experiences, again so you may resonate and find something helpful within. I do this for myself and for my readers: gorgeous reciprocity. I know intuitively and from my daily work in my career that I am not alone in this battle. I spend the largest chunk of my time trying to sort through the insurmountable task of ever keeping the big picture in mind versus getting caught up in moments. This feels nearly impossible. I believe in fact we are wired to respond and react to what is right in front of our face in any given moment, and it takes a considerable larger amount of effort to sort through how we choose to act on any given impulse or reaction to the entire process. Exhausting. I am exhausted a lot of the time. So let me first lay forth the extra complexities of my personal situation at hand.
Factors to consider: I am divorced, their Father is involved and pays his share, which lessens my burdens considerably. I am always aware of this, and how much better I have it than others. Since scales of comparison are rarely helpful I usually don’t use them. But I am careful because parenting is the hottest of all topics I think. We are ever wanting to do it well, and mostly in situations that feel like we are failing.Everytime we figure out the system and make a grand jump over a hurdle clearing it with strength and agility, the course switches up on us, landing us on our faces.
Back to the factors: Despite his support and involvement in the kids lives that I am ever grateful for, our working together to parent has intense complications. He remains at a certain point in our lives that I have moved much further beyond, this means that he has an idea of me that is constantly creating complications. Think believing in the worst possible version of someone, and this is of course MY interpretation and I am aware of that as well as the fact like we all do, I have blind spots. I think it’s being revealed to you this is a loaded topic. So for the purpose of not losing sight of the original plan of this post we shall summarize as the logistics currently are probably the most difficult part. This means that due to his career in the Coast Guard he has mostly lived far away during their lives. Ohio, then Boston, and now Staten Island. He comes for all things important for the kids and shows up, which is lovely. BUT he has no space near here to have them at overnight etc. This is further complicated by the fact that Tyler now has a job and needs rides to it, and he can’t just go to his Grandparents in upstate NY on the weekends. So the time I was able to have just for me while they are with their other parent is really only decided last minute, and often with just hours spent with him, but not overnight and all of them away. This allows for tensions to build between us and difficulty to arise and not much of a break to get insight and recharge. I understand that with families not in divorce perhaps they get no breaks, but also this is their set up. Each of us have unique struggles. I can only write so intimately from my pool of truths, and subsequently learn from those.
I am definitely going into detail to the degree that I might be losing “the point”. I am learning about how my writing process works or doesn’t haha. I try to be concise and summarize, but perhaps in the feeling space, that is more difficult to do. You are getting unrefined writing here. Perhaps the flavor is not nearly as good as something that has been perfected, but we are not there yet. We are just beginning.
So factors: An ex who isn’t my biggest fan and navigating his military career and how that changes the choices, and map of how we handle divorce and co-parenting. The careful tip toeing of honoring another parent’s journey with their kids in the face of criticism and bitter old wounds, that the smallest of things seem to resurface, even all of these years later. A non-traditional, non-consistent custody schedule, a new partner that they are learning, after several partners they became used to who departed, (severed connections are no joke on the heart) their personalities, my personality, their wiring, my wiring. Add in a healthy dose of misunderstandings, high sensitivity, strong strong personalities and character which I love, but is impossibly difficult in practice….
I used to go eat out at buffet’s when I was little. My grandparents loved buffets. Always buffets. JJ North’s Chuckwagon and Home Town Buffet, low in quality and large in quantity and variety, food excursions. They disliked needing to tip (which I think that you are still supposed to, what can I say they lived through the depression), being limited to one type of meal, and not “taking care of it themselves I think”. Also they appreciated the affordability. And my Grandmother bless her church going soul, loved to pack as many cookies as she could possibly nab from the dessert area into napkins and into her cavernous handbag. I recall snickerdoodles and peanut butter being favorites. I chuckle at this memory. He most egregious of sins being all the VHS tapes we rented that she copied with glee and a touch of shame (as the warnings exclaimed that this was a federal offense), and her stolen cookies from the buffet. I imagine she experienced much guilt over this, and yet another part of her was exhilirated with the mischief. Anyway the point of this story was that if life was a restaurant I would choose a buffet (even though I won’t eat at them now, yuck) and I would fill probably 5 plates full of every possible food, and try to eat them all. Yep that’s what I do. And then I end up sorting through the indigestion and gastrointestinal distress of it all. Which is quite the fitting metaphor for someone with Crohns Disease.
Maybe I should have just called this blog post factors? Maybe I’ll just keep going and it will be the book. “Maybe it’s Maybelline at this point”…this popped into my head, a charming and witty line from a dear person who has been in my journey from their blog that I highly recommend. Credit Kat “the Wizard” from. http://www.seekerandthewizard.com
So here I am at present day with three teenagers whose turn it is to be allowed to learn/audition to navigate the world, when some parts of me are still so delayed in my own process. Here my partner and I are trying to establish a new connection and have enough time and resources for that, while having our main task be loving and teaching these kids well. This has gone quite poorly in the past, and my assessment of readiness and also the want to spend life in this way of people I chose in the past did not end up working out in the whole story. But in the scheme of things I have embraced each of those journeys as completely necessary and can find nothing but affection and gratitude for each of them.
We have a full home. We enjoy entertaining and offering what we have in love, food, comfort, and space to others. We both, all of us really, enjoy this. We like entertaining and cooking for others and inviting them over. We are very social creatures. However that takes a huge amount of effort in terms of upkeep. We have two dogs. One of them an overly neurotic border collie with a gargantuan pile of issues, whose favorite pastime is barking at the highest pitch you can imagine at the mail person the entire time they are on the street. We have a couch, it’s a funny story really in the scheme, perhaps I will tell it at some point. But both my person and I came with “stuff” from our past. We have a very over-priced couch she was forced to pay for in their break-up, and it has no place in our home of children, and misbehaved pets. So a great deal of time and stress is keeping this thing nice in a house that is not a museum. We even had a therapy session surrounding it once. This couch is the perfect couch for a single couple (gay of course because of it’s impeccable taste ;)), and for dinner parties and a gorgeous, clean, non-chaotic, floorplan. So both dogs attempt to scale the couch to get into the bay window to bark at anything they could possibly bark at. They are breaking down the cushions and increasing the wear and tear. And my second dog Sigmund Freud the therapy bulldog occasionally likes to mark it as his and relieve himself on it. This of course distressing my person greatly, as if nursing the wounds of the financial inequalities of that relationship were not enough, now the thing she was forced into buying herself is being peed on. To keep perspective I suppose if one of us was to fall ill the couch would become an after thought, as we should train ourselves to make it be without. Learn to have it be a funny story based on a lesson. I know personally I luxuriate over having such a piece of furniture as I probably would have gone my whole life without ever 😉 There are a variety of ways to look at this.
So we have five different personalities under this one roof. Five different people who each hold their priorities and process sacred, and need to learn to work together to acheive balance individually and as a family. How does anyone do this? My guess is with a lot of space, a great sense of humor, and not taking life too seriously? And this is a problem in our home. Highly sensitive people take everything seriously, and they also become easily overwhelmed. If you aren’t overwhelmed by reading the factors in my daily life, whether you have the High Sensitivity trait or not, I would be shocked.
Let’s list the complex factor’s without going further into each one, the blog itself will do that. I’ll just list words and see:
ADHD (most of us, if not all), High Sensitivity, Stubborn, Opinionated, all internal factors of our wiring and personality, how to fit each person’s needs and balance with their wants. Crohn’s Disease, Financial concerns, namely cleaning up after beginning my career very late, and being a “single” mother in the state of Connecticut for many years. I have debt that is impeding the larger than life dreams that I have. Which includes the possibility of another child, wanting to travel and explore, actually more of late really wanting to move to another Country, but seriously. Knowing with evermore certainly that some windows on my dreams are closing in that I cannot have them all. I have to CHOOSE. I have to choose which dreams to give life, and this is a Sophie’s Choice for me. This is deeply painful for me. Apparently I can’t list without elaborating, that has always been present, now how can I capitalize on it rather than thinking it is wrong? In addition to this I want to author books, I want to organize and produce theories from all my labors of love and learning as a counselor. I want to tour, and to talk to others, and to teach. I want to share my gifts on the largest scale possible, not for the wealth and the fame of it (in fact I think I would hate that), but for the purpose of it. I want to help. I want to contribute to society, and my process of needing to heal myself before I had room to do so has been lifelong and taken up so much space. I am aware and grieve that. I can’t help but indulge the what if’s of that.
I burn with desire, sometimes I burn up, and it’s not good at all,…..I burn to create. It is a drive, a compulsion, a non-choice it always seems. It is a brooding and painful thing all of these thoughts, that if I could just untangle I could help. My mind is painfully cluttered, and as I try to de-clutter it, more piles just topple over into the space I have cleared, and on top of it I just continue to add more ALWAYS rather than staying with what I’ve got and putting down roots. This task before me now is to SLOW DOWN and STAY with things, see how much more richness can be produced by choosing three things in particular and sitting with them and seeing them, and allowing my eyes to graze over my greatest works of art. And the fear in this? In this noticing? Is that it could hurt that much more if the connection is ever severed. And severed connections have been a thing most of my life, they are more consistent than safe ones. It’s all I know in a way. Being severed from these: unthinkable. I stop breathing even thinking about it. So I stand at a careful distance at times, from my own life. It is terribly painful knowing my kids can feel that, and may perceive it differently, personally as a way I feel about them, or don’t. And part of my life’s work is at least trying to put down in words enough that they will be able to read and understand who I am inside, and the why’s of my choices. That was something with both of my parents that I will never know. If I do nothing else right in my life: I will always show up for my kids. They may not always understand this or interpret it the same. Sometimes they will have to sort through the pain of their experience, without it being unthinkable to me or a threat to my ability of parenting. We are not there yet. I am a work in progress. But I will never stop trying. I’ll always show back up. These are connections that only death will sever, and perhaps not even that. This is the thing I’ve been so thirsty for in my life, and yet I so often am blind to the ones I already have. Or I move too quickly to stop and see. This is my current task as a person to slow down and develop my relationships I have now, and find a way to still do that while helping others along their journey.
My writing continues to take on a life of it’s own and go on a direction I never planned at the beginning. This is like all of life though. This is something we can count on. So I’m going to try for that to be ok for now, until my next victory opens up before me. They sneak up on you, you know. For one thing I’m writing so much more in so many more ways than I was last year. I write more, and more comes. It is unfolding.
I lost sight of the blog that was meant which was to describe a singular situation that happened with my daughter this morning, and to explain the different choices and outcomes of how it was handled. To illuminate what I have learned. Let’s hope I can learn to come back to this and also make that post. Or maybe it will get lost in the land of ADHD and life in general.
Thanks for listening….I wrote this in the midst as you can probably tell. The midst of real and everyday life. Not at a writing retreat, not on top of a quiet mountain. In the midst of scheduling, random questions (many), my daughter being up set over an overwhelming project, the dogs, the phone… LIFE… I write in the midst of life and I have ADHD, and I am trying to find out how I can produce great works of art without sacrificing my childrens childhood. Without us both missing out. How to be a driven thinker requiring quiet space, and a fully present mother. It is difficult. I think of Pema Chodron and her admissions on parenting at the end of Fail, Fail Again, Fail Better. This was comforting to me.
When I was a kid (I kind of chuckled at this, the joke is I never really was a kid) I used to love roller coaster’s and all thrill type rides. Later, probably after watching any of the Final Destination movies, it began to occur to me that these large machines were as capable of breaking as any, and I could be putting myself in danger. Let’s be honest I hit a point in my life where my imagination ran my world, and what it often told me is that death was somehow after me. So I recall after this occurred I would still try and push myself, but by the time that conglomeration of nuts and bolts reached it’s peak, inside I would want to scream “someone let me back down before something bad happens.” I would want to turn back and the only thing that usually prevented me from doing so (was probably my ego) was the fact that other people behind me were waiting and I would cause a scene. If it weren’t for fear of inconveniencing others I would have marched right back down the line and out to safety, never having plummeted.
*A present time update is that I do not ride those rides. I get dizzy, and also feel like the chiropractor is necessary after a single ride. I am officially “old” 😉
In my life currently with regard to parenthood I am going slowly up and up, imagining my impending doom, and feeling sometimes as if I want to scream, let me off this ride. When you’re a new parent you spend lots of time imagining what the heck people mean when they playfully warn you about the teenage years. I feel like I did not take those warnings seriously enough. What I have learned in my 16 years of parenting that IS comforting is that MOST everything (at least so far) is a phase, which means it does pass, you get a brief breath of fresh air, and then a new struggle will be laid out before you. Just as soon as you feel you have the parenting game figured out….. it changes.
I used to get so scared and bewildered when caught in the moment that I could only intensely emotionally react to each part of the phase. When it was in its worst I thought I would never make it out alive, and when it resolved finally, I felt I would be safe forever. Both of those illusions can be very dangerous. The reality is that all things in life will ebb and flow, there will be good and bad moments throughout. It’s about making it through the difficult ones and how we manage that, and about enjoying the good while still knowing it will not be some constant state to try and grasp and keep forever. It’s like a flower that you can’t pluck and take with you for it will die. You appreciate that moment, take a snapshot in your mind, and buckle up for the next hurdles.
Currently my hurdles are compounded by my self-components : ADHD (this is a big one), being highly sensitive, Crohn’s Disease, Anxiety, running a full time practice doing a job that while very rewarding, can take a large tax on my available resources, which brings me to “being the type of person who constantly is spread too thin because of their sheer thirst for experience in life and inability to sit still, even for a second”, PTSD (also a big one), an ex-husband who does not really fall into the category of supportive (understatement), personal struggle with self-image including still feeling inside like I look like my 20 year old self and becoming terrified when I see my “nearing 40 self in the mirror”. I am sure there are more, but these serve the purpose for now.
At any given moment I burn at 1,000 KW hours (this probably doesn’t even make sense and I’m not going to fact check it, because if I do my thought train will leave the tracks, and my inspiration may be lost). I burn bright ok, strong and bright and I go and go UNTIL I drop. When I have dropped you WILL KNOW. If you see my drop you are most likely to be my partner or my kids. The drop can appear as ugly snoring on the couch curled up with Sig, but more often the drop appears with me being able to hardly focus on anything, and being very SHORT. Here I sit knowing I can show up day in and day out warm and friendly, an ALLY for my clients, and knowing that my children get what appears to be “the shit end of the stick”, the very worst parts of me. Writing this line even almost brought me to tears. They get me running on fumes, and we all scratch and claw and bite at one another at the end of the day.
And here is the epiphany fellow parent travelers who come across this: The great trick here is this is also what I get, “the very worst parts of them”. I said to my partner the other day in an adult temper tantrum moment, “but I don’t want to be the mom”. I came across a lovely woman on my travels to Texas. She is from Iowa and has a beautiful family that sounds like a dream. When I shared some vulnerabilities with her she said something to me, that I will keep, treasure, and now share with others. She essentially told me that our kids are for other people and not ourselves. We are home base, they come home and refuel, and pack up and go out into the world to others. I think I didn’t know, that I didn’t know, if I was ready to be home base yet or not.
When we feel safe and loved really well, our full selves are able to be present. This means also our selfish and mean selves, selves we have to learn to manage. I want to show up for my kids journey with this. *disclaimer this is not an excuse for blatant poor behavior and if you come up with some code for how to know exact lines around this please share it with me. Discerning how much wiggle room to give, and when being a parent takes priority over being a friend is a costant battle.
Children when they are young are very gratifying, they love the daylights out of ya. They give and give and give, and would fix everything if they could. Their warm light brightened the path for me to come back from years of a neglectful and confusing childhood. My children saved me. I’ve struggled with, is this ok?, should I be guilty for this? Are they too parentified? So many things. The reality is though they are my greatest motivator, for which I would never have traveled this far. I need to keep this in perspective as I journey these treacherous paths.
So now I talk to myself as much as I talk to anyone reading…. now is my time to fully bloom into adulthood (my path with this has been affected by my personal story, and does not appear on a traditional timeline, if anybody’s really does) and to be their harbor and be patient with them while they go through the phase of selfish discovery, the phase I went through very latently. I went through it while they were young. This happened because I didn’t have the space they do with me. I have to always remember that fact. When I am lost I have to always remember that fact.
I need to find a way to reconnect with my 13 year old daughter. Some of that journey has begun by reconnecting with what my 13 year old self may have left unresolved. Some of it has a life of it’s own I can’t control. Some components I believe are genetic and temperament and some things are beyond the scope of being able to figure out. But I’ll be here keeping on… trying. Because it is what I know how to do. I don’t know how to give up. That is my one true gift. I didn’t give up on becoming a parent. I continue to become one every single day. There are always new lessons and growth to be had. The most I have ever learned in life is from being a parent.
