learning to navigate the world, j-bear style

Tag: off topic (Page 1 of 2)

15 Years

Our mornings began as dawn was barely breaking over the beach near her house. I always had to creep in for worry of waking the house though looking back, I wonder why. She was always awake when I arrived. Sleep was a fickle friend to her, often eluding her at night but taking her by surprise during the day. Her body was weary but her mind, that never tired.

“Good morning, pumpkin,” she would say, speaking just loud enough to be heard. The words were so soft but always rich with warmth and love.

“Good morning, Nana,” I would answer, quietly too so as not to wake my very tired uncle. He held down the overnights and I held down the weekdays, you see. This was how she was able to remain comfortable in her own home.

nananna

Nana Anna and Papa David on their wedding day.

This was how every day began for two months. They were two long, difficult, scary, funny and incredible months. They were two months I wish I could have back to live again and again, no matter how scary they got.

You see, Nana had cancer. It was in her liver. She was diagnosed in early 1999 and rather than aggressively attack the cancer, she considered her life and the quality thereof. She elected to simply live. She was 77 when she was diagnosed and her doctor estimated she would have about a year from that point. He was almost spot on with that estimation. She travelled, going to Ireland a last time to spend time with family there. She spent time with her family here. She simply enjoyed her time and when the cancer began to take pieces of her freedom away, a lot of her family came together to make it possible for her to live at home in comfort until the inevitable came.

And of course, it did.

I was not there when she passed. I could have been, I imagine, but that did not seem her wish. She shielded me a lot. The worst of her symptoms would come at night. My poor uncle saw the worst, her own son, yet during the day somehow it never appeared. She would not tell me the worst of what she felt. The worst I would see would be how awful the medication she needed to function made her feel, for she would cringe. We instead passed our days peacefully, sharing laughter and simply enjoying each other’s company between visits from nurses, health aides, friends and family. She did not pass away until after I left very late on the 19th, having I imagine finally found her peace. She knew the love of her life, who she waited over fifty years to see again, was waiting for her when she got to the other side.

There she rests now. I cannot visit her grave easily but it is a comfort to know she’s there with him, my grandfather, and at peace.

goofy

This is 100% a Nana Anna “I am up to no good just watch me” face.

It was 10 years after her passing that I could see her again. Her great-grandson was born with her smile. It was clear from his first day. As he has grown, J has developed her keen sense of mischief and her intensely hilarious inability to be subtle about it. He, like his great-nana, broadcasts everything he’s about to do. He has a face like glass and so did she. He has the gorgeous shape of her eyes and their beauty, but not their color. Oh no. The color is all his own, a bit of her aquamarine-ish green and my mother’s family’s blue shaken down into a startlingly pretty grey shade.

I tell him about his great nana. I tell him about her a lot. He would have loved her, as he loves his Grammie down in Virginia. Their gentle and patient natures are the perfect match for his needs. I wish he could have met Nana but that’s now how things were meant to be. Instead, she and Papa will watch over him as I hope they watch over me. I’d love to say that in the course of so many years the missing fades or hurts less but that’d be a lie. Death does not heal. It transforms those it leaves behind. You aren’t who you were before it happened… Grief is a journey that changes you. You learn to live with this part of you missing, never to return. The only way to get that part back would be to never have known the one you loved and lost it for. That’s not a price many are willing to pay, I would hope.

I love and miss you, Nana Anna. I still see you everywhere and for that, I am glad. Keep an eye on J for me and even though I know you were never too fond of animals, I know you too would have loved Brooklyn. Send a sunbeam to warm us when you can.

Dear Medical Staff

This is for you, the techs, the nurses and the support staff in medical offices and hospitals. I need you to understand something.

Compassion is what will save both sides a lot of stress.

Hear me out, please?

Yesterday, I spent the day in an emergency room. Again. This seems to be an almost yearly event and thankfully despite a very long day yesterday I actually have an answer as to why I keep having such similar problems year after year. This is good. Great, even. The visit sadly highlighted something else that needs even greater attention than what brought me to the ER.

I have bad veins. It’s a well noted fact, I have always and forever been a tough stick. There have been a few blessed phlebotomists who have quickly and relatively painlessly drawn blood or placed IVs on me but more often than not I leave situations like this appearing like I can barely retain water due to so many holes. It’s a mess. Fifteen years ago a particularly uncaring tech decided to dig around in my wrists for veins despite my protests. She rendered me unable to use my hands for several days, the pain was so great. I could not brush my hair. I could not do simple things for myself. It was upsetting that I was disregarded and rendered what felt like injured for so long and has stuck with me ever since.

Now, enter yesterday. A tall man my age or maybe a little younger approaches me. He’s with the IV team. He’s there to place an IV for fluids and blood draws. I submit to his efforts, already in pain hence my being in the ER to begin with. I ask what I always ask: Please avoid my hands if possible. I need to be able to function after all. He outright ignores me with a huff. Three sticks later, he goes for my wrist. I screamed. He cleaned up his stuff and huffed out of there declaring me impossible to stick.

I sat there and sobbed. A kind woman who works in the lobby brought me tissues.

This is for that fella, who later came back when I consented to do one last try for an IV and mocked me openly because I screamed:

You don’t know what PTSD is like. Your disregard for my simple request kicked off terror. You cannot help that you’re male and sadly, I cannot help the reaction of terror I had so acutely at your actions. If you had talked to me, treated me like a human being you would have known this. The ultrasound tech did just this and had me at ease and chatting amiably all through my test despite the fact I am usually wildly uncomfortable with strangers touching me.

You never took the single solitary moment to realize that most people aren’t drama queens, they react as they react for reasons. If it had been my son in your care, he would have done all I did and more because you’re a stranger touching him and not only are you touching him, you’re doing something he doesn’t entirely understand and it hurts! It’s a rare child that doesn’t freak out over needles, after all, and he is no different… there is just little to bring him back from that horror besides his dog right now. I cannot imagine the ugly things you’d have said about that, probably blowing off the fact he’d hear every word and understand you.

Just like I did.

Talk to your patients. Set them at ease. Show them care and understanding. It changes everything. There are nurses in that very hospital who I let one night spend the entire evening trying to get an IV in me for a test. I was covered in medical tape and holes, but they succeeded and even though it hurt and I was miserable, I could smile and laugh about it. Why? Because they all approached it with understanding, respect and when they realized humor helps me, humor. When you’re a good sport it really helps the person you’re working with be the same.

The funny little epilogue to this rant is that not ten minutes after this person left me declaring me impossible a young lady came along, got a blood draw done on me rapid fire and I never ended up needing an IV. Still got a diagnosis, still got taken care of, still survived to tell the tale.

The Dark Night

Sometimes, it feels like you’re stuck in this unending dark night. There are no stars to guide you. There is no moon to light the way. You are stuck in a painful, soul rending darkness that no one else can see. The world is moving around you like you are not even there, alone, stuck in torment.

You feel not worthy of life. You feel unworthy of love. You feel a burden upon any who know you and like they would be so, so much better off in the long run if you were just gone.

It’s tempting. Walking so far into that night that you never return is so, so tempting. It seems a solution for a pain that will not ebb. It seems the best way to handle that which you cannot adequately put into words. You feel like no one will listen, no one will care, and no one will understand.

You’ve reached out. You’ve been called crazy. Unstable. Broken. Wrong. You’ve had people roll their eyes at you, shove you away, blow off your words when you try to express your pain; your needs.

The moments come where you feel like there is no choice. This is it. All else is hopeless, you might as well let go by any means possible. Just end it. There is no fanfare, no loud cry for help… The moment just comes.

It came for me twice.

The first time it came, I sat in a bathroom convinced that the abuse would never end. I would always be knocked down, beat up and for all intents and purposes no more than a tool for those in my life. I was to be used, and that was it. I held no worth, I deserved no dignity. But my friends, dear friends I hold precious and close to this day, didn’t know exactly what the situation was yet still they reached out. They shined a light into my dark night, and slowly the guided me first to safety and eventually to a place where I could see, breathe and be again.

The years that lead to that first episode and the years that followed did damage. This damage accumulated, weighing down the fragile system I had for coping with the world around me. The year following the birth of my son, I could not find up. I could not find any which way out of that dark night once more. It was so much worse this time. It was so painful, everything around me was filled with terror; with the anticipation of violence soon to come. My son would be taken away. I was not deserving of him. I was not a good mother. I hurt my son. I should never have had my son. How dare someone like me ever have a child.

My mind was, and sometimes still is, my most vicious enemy.

The little boy I feared so much surrounding was the one to save me. It was early into my pregnancy that I swore I would never leave him to feel abandoned as I often did. He would always feel loved, wanted and cherished. It was so hard to find my footing, to know how to be a good person for him.

So I called my doctor. Of all people.

And I got help.

I got help despite those who spoke ill of it, and that appointment was the day the light came back once more.

It would be a lie for me to tell the world that life is perfect. It is not. I struggle with complex PTSD every day. It’s part of my natural operating system now. It comes with heavy depression sometimes, but I have a shining little face that drags me back even when I feel like I might not want to be. I am lucky.

Not everyone is. Not everyone can find their light again. Depression is a vicious, terrible mental illness which is often blown off in terms of how severe it can impact a person. Suicidal thoughts, no matter what the condition is that leads one to them, are no joke.

You are worth it. You are worthy. There really is at least one thing to live for, if not so many, many more. There is help. If you feel yourself slipping into that dark night, please call 1-800-273-8522 – It is the National Suicide Prevention Lifeline. Let their staff help you, or reach out to someone you trust that can direct you towards assistance. You aren’t alone. People will listen, and they will care.

Rest in peace, Robin Williams. In the words of Aladdin: “Genie, you are free.”

Trust, Fear and Forgiveness

This is entirely a Mama post here, so it’s very off topic. This blog is nearly all about J and I’s experiences but it’s also my go-to for talking things out in a way. Please bear with me. 

We’ve all done it in our lives, trusting the wrong person and realizing way too late that we’d done so. When you grow up in an abusive home, trust is something you kind of learn third hand. It’s not something that was taught as being innate. I did not grow up with a natural trust of my parents, or of situations, or of … well, much. Trust was learned as a process as though it were a foreign language. I understand it better now, but my understanding will always be imperfect so when someone comes along and commits what amounts to a vast crime against it it does feel as serious as a deep physical wound.

I have struggled with this. I still am struggling with this. This person added to their crimes against the trust given to them the use of “forgiveness” to equal “absolution”. They would constantly demand to be forgiven, believing firmly that forgiveness meant what they did was okay.

That’s not what forgiveness means. That’s never what forgiveness has meant. Forgiveness means acknowledging something happened and chosing to move on from it. It is not leave given by the person doling out the forgiveness for the person receiving it to repeat the same actions that required forgiveness in the first place.

That is abusing trust. That is abuse, to continue to make someone believe they must forgive you for your bad actions or they are a terrible person even though you just use their good nature as an excuse to keep repeating the same offenses or worse.

I let this person into my head so much that they had me believing I was a terrible person, that I was a monster, that I was abusive when I would stand my ground and demand to be treated with respect and dignity. The amount of times I was sworn at or torn into verbally over just plain sticking to my guns and not doing as I was demanded is absolutely ridiculous. It should have stopped after the first, but this is my sin. I was stupid. I wanted to trust; to believe in the goodness of someone it turns out never deserved it.

So here I am.

The ache is less, but I do not believe it will ever be completely gone. It will not hurt in the way that some other things do. My heart aches over the loss of my Nana and others, for example, in a very different manner. I am sad to know I cannot hug them again or hear their voice, yet I have the solace of knowing they’re still always there around me. This pain, from what this person did, is deeper and sadder. I cannot regain the years and energy lost to this person. I cannot go back and re-see that which I should have seen at the start and prevented so much pain with.

But I can move forward. I know the truth of who and what they are now and in knowing, I also know it is they who have to live with it. Not me, now. Not ever again me. I get the gift of continuing with my life knowing the truth and being able to heal from the wounds caused of years of hearing what a terrible person I was. I trusted this person with too much truth you see, and I am learning not to give that out again. They took me at my weakest points and sharpened them into fine blades by which to try to keep me down; to try to make me controllable.

If my own father couldn’t manage that, there was no way in hell this person was going to pull it off, especially not now with too much in the balance.

I’ve always been able to stand for others, to yell when they could not and to support them and help them through what they needed me for. I could never stand for myself, not with true strength and conviction. Then J came along.

Now I have to stand for myself and be true to what I need, what I want, and what will make our futures the best.

I think that scared this person. Independence always did.

I will never say whether I forgive this person or not. That’s a matter that belongs known to my heart and my heart alone until they might, on some unlikely day, learn what the word truly means. I will move on, as I have been, and I will love my son every day all the more for the strength that little boy has given me. I’ll close the door on this person once and for all and should they try to snake it open….

Well, opening things they weren’t welcome to didn’t work out well for Pandora, so I cannot imagine it will work out for them either.

Please forgive the lack of comment section. Not sure I am ready to open this one up for discussion. – N

Mama Unwinds

Well, I try to.

The latest thing I have begun doing in a desperate attempt at respite is playing video games. I know, dorky, right? But it’s mindlessly fun. I was initially playing an older game off and on but found the crowd there increasingly strange, so I went back to World of Warcraft.

This is a game I have not played since I was pregnant with J. I am pleasantly surprised to report that it has grown infinitely more fun in the years I was away!

You see, when I would play it what feels like forever ago, I would play it with someone I thought was a friend, someone I thought I trusted and could have fun with. A lot happened during game play that should have opened my eyes to the truth of this person. They would grow hostile, abusive and extremely volatile… over a game.

It was like dealing with my father. It was bizarre. I should have paid attention but I did not, and I eventually paid the price for dealing with this person. They are the one person banned from this blog, and truly black in their heart and soul. Pretty sad.

All of those experiences made me think I was daft in going back but I did, cautiously, and I am honestly glad I retried this silly thing. An acquaintance set me up with a guild so I wouldn’t be bombarded with weirdos any more than necessary and I can play whenever I want and plug along in my own clumsy, ineffective way. No one mocks me, no one harasses me, above all no one has a hissy fit at me over a video game… Best of all, if J is being particularly feisty I can sit him down beside me and we can chase animals together. He’s always happy to do “running” as he calls it.

Has my geek-ness gone off the charts? It feels weird to have one little thing that is just… kind of mindless, but it is sorely, sorely needed. Sleep has been a terrible battle of late more on my side than J’s, the ever-changing weather has led to more meltdowns that need to be contended with, it’s IEP season, and there’s just a lot going on that causes stress, which causes anxiety, which causes the intense desire to hide in a hole until it blows over.

It is tempting, that hole, but I remain above ground for now. Now to find myself more energy and get more projects done. The more projects I get done, the more time I can have to flail around playing a video game, right?

It’s all about the carrot at the end of the stick some days.

Bad Days

There are times where it’s really easy to hurt; to ache and cry without reasons you can neatly explain to others.

March is generally mine.

Maybe I am a little too involved in Roman history but mid-March seems to be an incredibly coincidental time for betrayal and/or pain in my life. From uncovering deep deceits from people I had once trusted to being walked out on as my grandmother lay dying to sitting by Nana’s side as she prepared to say goodbye… It’s not a good month for me.

I really do beware the Ides of March.

It’s hard to explain this pain away, and why it runs so deep and so raw. I don’t think it will never not do so. It’s like a yearly purge, but for some reason the universe likes to drop things on my when I am at my weakest. The physical body  is willing, the emotional… Not so much. Not so much at all.

And yet, living life as this apparently terrible person who is believed to deserve so much pain, I was given this… this overwhelming gift. When I least expected him, here stormed J, determined to change everything I knew, believed, or felt. There are so many reasons why I likely never should have had J, from the physical to the emotional to the mental to the well, you name it. I am sure there are people in sight of this post who would give you a laundry list if you so asked. Heck, up until my first ultrasound, I was one of those people.

But then I saw him, teeny tiny him, looking like a circus peanut on the ultrasound screen and wow.

It is cliché to say my life changed in a moment but little else could describe it. It was a whisper in my ear from a voice I missed so badly saying “you can do this”.

There are a lot of ways in which I do not deserve my sweet son. There are a lot of days I would likely tell you I am at the end of my frayed rope and will be listing him on Craigslist*. Yet he’s here, and he’s … stunning. Beautiful in every way a person can be beautiful, a walking glimpse of all who came before and who will come after… A wise young woman would talk about “the good stuff” and holy cow he is every inch what she was talking about! Everything good from the past is right there in him.

And I try to remember that on the bad days. I try to remember it on the good days too but it’s on the days I am the lowest I need it most.

Ice

The subject says it all. We have entered the season of my arch-nemesis, ice.

You see, I am not a graceful person. I can fall all too easily on dry land, so you add ice to the equation and I am a hospital bill waiting to happen.

This is compounded by being constantly escorting my fearless little bear. Oh, there’s snow on the ground? Let’s go for it! Oh, there’s ice and I’m slip sliding everywhere? Whatever, it’s still go for it! Meanwhile, we live on an extremely busy intersection, then drive to a very busy school parking lot…

Can you see how I am high in the anxiety department about ice? Wrangling him in just rain can be a feat of will, but come ice… Wow.

I need me some Yak Trax or something.

This blog will, at some point, have interesting content again. I swear it. Right now I just needed to shake my proverbial fist at the heavens and yell “damn you, ice”!

Somewhere my dearly departed Nana Anna Ryan O’Brien is wondering just how many times my parents dropped me on my head, I just know it. And that’s okay.

Weird-iversary

Taking a break from talking about autism, service dogs, 4 Paws and fundraising here. It should be a given that most of my posts will be rambly at this point and this one is no exception.

25 years ago today my father and my first stepmother got custody of my brothers and I. It’s a strange kind of anniversary to think about.

There will always be a lot of “what if”s that surround my childhood. This is one of the glaring ones. The day my father got custody should have struck fear into my ten-year-old heart that a rough life was going to turn into a life that was just as rough if not worse but that’s not a natural way for a child so young to think. My father, stepmother and her family mocked our world mercilessly and made us feel less than human in those first hours that we were to become a “family”.

When I was a child I always thought my father would somehow “get better”. I had been seeing his worst since my earliest memories and yet, when you’re a child you hold out hope. You believe fairy tales exist and that somehow, you’ll get to a point where you have the loving sort of family other people say exists. That never happened, for us. Things never changed, no matter how much there were times we were fooled that it might. They got worse, they levelled off, then they’d get worse again… Life was a constant round about of abuse then peace then abuse then peace.*

My first stepmother… Wow. If this woman is still out there, I sincerely hope she is disallowed somehow from having contact with children. Every single day for years she made it a point to remind me how awful I was, how useless, how fat, how ugly, how pathetic, how I’d grow up to be old and alone. She shamed me because of my body, because of growing up, because of so many things no human being deserved to be shame over. With 20+ years perspective on all of these actions on her part I can see she was just taking out her probable self loathing on me. It was still nothing any child ever deserved.

And my father saw no problem with bring women that were bad for all three of us into our lives. We were annoying accessories.

And this was my childhood. And 25 years ago set the stage for so many struggles. I will always wonder… what if, what if, what if. I cannot change the past, but I am human. I will always wonder.

———————

*= Not all of my childhood was terrible. I had two wonderful grandmothers, even though one left my life through no fault of her own long before she should have. I had the wonderful parents of my bestest friend and other adults who stepped up where the people who should have cared for me most failed. By the grace of God I got two women who came into my life who suffered my father but who were always true and honest to me. I had some amazing friends, and their families too. Nothing is every completely terrible.

The comments are not turned off because I do not love my readers but because this is pretty vastly personal. If you feel the need to reach me hit me up at mamabear@jbearandme.com.

Never Forget

Every year I have posted these same pictures on other sites. I got them from a magazine not long after 9/11 and there was no explaination with them other than they were taken near Ground Zero. I wish I knew the story, or who these men were, or how this dear little lion came to be wearing a lifevest.

I was 23 years old on 9/11/01. I worked at the Museum of Science as a telephone services rep assisting visitors with information, ticket purchases and assisting educators with planning field trips. I always got to work extremely early because of the brutality of the commute from Bridgewater, MA, to Boston, MA. It was so, so very peaceful that morning and so very beautiful. The skies were clear, the sun was shining, the temperature was perfect. I remember looking out the library windows at the Boston skyline and admiring it, wishing my friend Nick who was in the area visiting from Australia could have seen it. He was up in Maine, you see. He’d flown out of Portland a day before the terrorists did.

It was people I spoke to on the internet who told me what happened. It was “just a small plane”. Oh. Scary, but not as scary as it could have been. When the “could have been” started to come true, it was terrifying. People down in the museum had access to television but in our office we did not due to the nature of our work. We had what we could get textually on the internet. Fark.com and other sites became essential as they had the best updates and were the most stable. We fielded few calls that day, mostly from schools cancelling or rearranging trips and such in the aftermath of such terror. We reassured people our doors were open and eventually, the admission fee was waived. People still stayed away, and I understood that. An eerie quiet settled over our world.

Driving home that night, the roadways were empty. Logan was closed, all her aircraft lined up neatly at the gates and on the tarmac. The only sound was an occasional military jet. Everyone was jumpy; skittish. What shoe would fall next?

But we emerged. Our generation was dragged into the realities of a military at war. We saw young men and women head off, some to never return. Today, those wars have either ended or will end soon. Our military is coming home.

Maybe next year, I can say we live in a more peaceful world, a fitting tribute to those we lost that day.

Stupid Depression

Another off topic one. I’m starting to wonder if I should just stop calling them that and figure if it happens anywhere on the planet, to anyone, it’s free game to be an on topic matter for the blog.

Anyway.

Depression is a bitter, rotten, awful and frustrating part of my life. It’s not major depression. Despite what some people in my life have believed, I am not even close to unhappy all of the time. I hit these funks, usually surrounding an episode with my PTSD, and they’re just dehabilitating. They feel mentally how my body felt physically post surgery.

It’s like one day you’re moving along, everything going as things go, nothing too bad or too great but everything seeming calm and peaceful. Then, in the blink of an eye, something happens that you may or may not be able to notice and boom, there’s this massive weight pinning you down. You can’t escape it, you’re bone tired all of the time, your experiences feel muted and dull… Everything seems sad and lonely and heartbreaking despite the fact most of it is likely anything but.

I hate it. I hate every minute of it.

But it’s not something one can flip a switch on. That has to be the single most frustrating thing, having people be like “cheer up” or “be more positive”… I can glue on all the smiles in the world and lie through my teeth feigning a perky demeanor all I want, it’s not changing what’s going on in my brain. It does, in fact, make it worse. It makes me feel even more broken, having to lie to the world and make everyone else see a falsehood as truth so they don’t get their feathers ruffled.

This sucks, but this is part of being me. This is part of who I am. It’s hard wired into my brain much like some pretty wild things are hard wired into my son. I can’t conveniently edit it out or hide it away because the rest of the world around me might feel awkward about it, I have to just live with it and ride it out when it happens. Sometimes, it’s a few days. Sometimes, it’s longer. Sometimes, it’s barely any time at all. Just as there can be little warning for when it will occur there can be just as little warning for when the weight lifts and the elusive sense of “normal” returns.

Meanwhile, life must and does still go on. Tomorrow, I take J to get his cast removed hopefully. Next week, he begins his first school year. The 14th of September is our Charity Yard Sale. There’s a lot going on and whether or not my body and mind can keep up I have to keep trucking onwards. It’s just a lot harder some days than it is others.

—————–

Just a note to those who read and who know me out in the real world: I am okay, I promise. As Shrek says, stuff is “better out than in” sometimes and this blog is my cheap therapy. I am always touched by the care and concern you show me but never want  you to worry. 🙂

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