Living As All of Me

[HannahOne]

Marcine, TheBigBlue, NarKiddo, Kizzie, Chart, SanMagic7 Thank you so much for commenting and the encouragement.

I have not and will not share what the forum is with anyone. I want privacy. Even from the therapist. But I did tell her I have found a group of people who've been through similar as me, raised by various types of wolves. And that it's the most healing thing just to find them. Just to not have to pretend to be "normal" or that nothing is or ever was wrong, to be able to tell it like it is, keep it real. She was shocked at first as I don't share with anyone... and it was a happy moment. Thank you all.

Chart, love does not disappear. Thank you.

the BigBlue, yes that's it! I could rest because I was seen. And yes---the doctor not arguing with me! I swear. There's a meme I saw once, "Your one day of learning about my disease in med school doesn't compare to my fifty years living with it" and in the case of most doctors that's the case about more rare diseases, unless they specialize in it. Let alone how little most learn about menopause!

NarcKiddo, thank you for reminding me what we all deserve.

Thank you Marcine!  Your support means so much.

SanMagic7, I hope such a doctor appears for you. We need a database of trauma-aware doctors all around the US Canada and the world, we can crowd source a google doc!

Kizzie, thank you so much for your advocacy. This is essential! Today at the oncologist he wanted to do an exam. And clearly the note in the medical record worked because he said, "What can I do to make the exam more tolerable?" He handed me a list. A printed card! The nurse would be in the room. I could choose my level of recline, have him describe what was happening or not speak during, have the nurse wherever I wanted, hold a squish ball or not... It was extremely brief exam and I forget the other options. To be honest none of the options helped and seemed a bit silly, but what helped was HAVING OPTIONS. And having a mutual understanding that there was a "thing," there was a trauma, there was an issue so that I didn't have to hide it, I didn't have to "act normal" so he wouldn't know I have CPTSD. For me that is the most triggering part is having to act like there is no trigger. Is that weird? Having it be acknowledged between us with the list paradoxically allowed me to act perfectly "normal," I had zero symptoms of PTSD in the moment and the exam was a nothingburger. HOORAY!!!

I'm sure it helped that I wore loafers and a fabulous blazer with pockets aligned diagonally, with silk pants in a muddy khaki. The receptionist had on a cowprint skirt. "I love the skirt!" I said. She lit up. She had seen it on an influencer, then found it in a Marshall's the same day. What a coincidence. "Cow print is in, but I'm not so bold," I told her. "And the turban!" I said. "Pop of color!" she said, touching the hot pink head wrap. As I got on the elevator she called, "I love your bag!" I looked down, ah yes the zebra print bag! I have animal print too! Just in my hand and not wrapped around my hips. May I soon be so bold as to wear it on my hips. Clothes continue to be a way to connect with others and myself, help me show up as the middle aged person I am, in all my complexity, gifts, wounds, hopes and fears.

[HannahOne]

I was due for some good luck. I'm so glad I found the primary care doctor just when it did and will have help to navigate all this.  Overall excellent news from oncologist. Of course, I'm saddened and fearful of the medication I'll be taking and I am feeling punished, like "doom fulfilled," a sense of foreclosure and grief, "I knew it, I wouldn't get away without suffering more, I deserve this." "My life will be ruined."

But that is really premature, I may do fine on the treatment. It's just the brush with mortality even though again I am assured I will not die of this. Getting older is strange, as inside parts of me still feel so so young, almost like I haven't even started my life---and now it's more than half over, and I'm having to balance complicated medical issues that oppose each other. Parts of me are very upset, disappointed, feel I haven't begun yet, I've spent most of my life just trying to survive, and then to recover.... I don't even know what I want to be when I grow up yet and it's almost time to retire, or I'm going to be medically retired the rest of the way shortly.... ah well, I am officially old. Maybe I've worked enough. Maybe there is yet time to begin again. It's a new thing to begin to focus most of my energy on myself, what I feel, need. I am going to work through it.

I have to remind myself my age, that it's ok to be this age, it's ok to not be perfectly well, it's ok to need medicines, or a diet, or exercise, or more self care, to have to focus on being well and not on getting stuff done. I've done plenty, I did much of what I wanted to do. And while parts of me feel they haven't gotten to live yet, I have lived a very full life. One of the benefits of CPTSD is I had a foreshortened sense of the future and so I really did live in the moment, I never thought I'd live past 30, let alone 40.... I traveled when I wanted to, I quit jobs when I Wanted to, I made babies and stayed home with them when I wanted to, I worked with animals when it didn't pay, I made art, I wrote poetry, I sat under trees when I should've been putting green into my 401k. It's how I survived, to balance out the pain I sought joy, presence, nature, beasts, babies, art. And so I don't have regrets on that score. I have some feelings about the limits of what I accomplished, but that's part of the tradeoff, I made a lot less money than I planned to or expected, I left behind certain ambitions to pursue what I thought was more important, and I don't think I judged wrongly. It's just you cannot have it all. I loved what I've had. I hope to get more of it, to be well enough to enjoy, travel, be present at the kitchen sink and in the barn.

Meanwhile I have to get a bunch of scans and tests done to decide exactly which treatment would be least problematic. I am so relieved to have a primary to steer this ship. I am so glad my chart now says "medical trauma." I feel like I'm going to be able to do it. I feel some dread. But I don't feel like I need to disappear and hide from the appointments.

I'm so tired. Tomorrow more PT for the torn knee ligament. I am hoping to get much stronger in the months ahead. I am planning a trip to California to some national parks and hope to hike and tent camp with my sibling assuming I feel well enough---but it won't be the knee that stops me. It would be so healing to be outside. I have about 7 weeks to get my knee back to snuff. I packed my suitcase tonight. Wool, wool, and wool, a metal spork. I am glad I can still plan to go. This is what I live for. Moving through nature, I especially love the desert. you can see for miles and miles. The red or yellow rocks are sculptural and shape the blue air differently than anywhere else. And around them little green scrubby leaves. Everything there is hardy and living on the edge, living on the bare minimum, not flowering or leafing one iota more than necessary yet showing up fully. May I thrive similarly in my oasis, where there's water plenty now. Now sleep.

[NarcKiddo]

 

[TheBigBlue]

 

[sanmagic7]

wow, hannah1, just wow!  i've lived in the desert for a while, and i know what you mean about the beauty it holds in its harshness.  i'm not a hiker, per se, but i've often walked thru forests, big and small, and they were my peace makers.  i do hope everything heals as you need it to do so you can enjoy camping and hiking once again.  sounds fabulous!

"the most triggering part is having to act like there is no trigger. Is that weird? "
 
to me, that makes perfect sense.  not weird at all.  to my mind, our world has been similar to alice's adventures 'through the looking glass' where we've had to run as fast as we can to stay in the same place, and if we wanted to move forward, we had to run twice as fast.  that's what it's always felt like to me, and it helps explain to me why i'm so exhausted most of the time!

 love and hugs

[HannahOne]

Thank you NarcKiddo, The BigBlue, Sanmagic7. SM, your description of it as Alice and Wonderland rings true to my experience. Things were so upside down!

[HannahOne]

When I don't know what to do, when I'm pacing back and forth with a tight throat but can't cry, when I've cried and nothing changed, when I realizing I've been staring at the wall for more than four hours. I come here.

It seems to help. It gives me something to focus on. It puts me in touch with other people. It reminds me this is just a very human experience. We are human. Human beings feel things. Struggle. Suffer. I'm not alien to this planet. I evolved here over millions of years. My nervous system was built for this place in all its tooth and claw, and is plastic and can recover. That I'm a tribal being, not a lone wolf. Even the lone wolf is a bit of a myth. No wolf is truly lone. And I get to read the experiences of others and cheer them on, people healing, growing, trying, reaching, having the courage to exist. It's so heartening!

The oncologist presented me some choices. I'm having trouble sorting. The medication is not really an option for me for a variety of complicated reasons having to do with the pain and disorders I already have. It also only cuts risk of recurrence in half and my risk is apparently very high. So I think I need to do surgery and cut the risk to nearly zero. Very well.

But---so many worried parts.

The parts of me that were neglected feel like this is a repetition. That my back is against the wall and I can't really consider all my choices because I don't have what I would need to make them possible. Because I don't have a partner who can help, because I'm responsible for kids, have no family, just a sib on the other coast, and have lost most in person friends... it's all up to me and I won't be able to take care of myself.

The parts of me that become a mother at age 7 when my sibling was a toddler is resentful, overwhelmed, panicked at how I will handle all of this, doesn't want to do this while I have kids in the house. feels like the Edward Munch "The Scream." A seven year old can't do this, can't be down from surgery and also caring for three other people and a menagerie of creatures..... But I'm not seven.... right?

The parts of me that got out at all costs are furious that this is how it's going, that another future is foreclosing, that I ended up here, with so few choices, without the financial independence I had before 2020, that was so hard won. I'm so angry at myself. I told myself I would never end up dependent financially, and I did. I did it because I had to save my child's life. It was a five year legal, medical fight. But I swore I would never end up here. I remind myself I'm NOT my mother, I have several masters degrees, I have a work history.... but I feel like my mother. Ashamed and trapped. Having the surgery doesn't mean I can never leave if I want to.... but it may make it harder. I don't know if I want to leave, I didn't want to decide yet. I feel like I'm having to foreclose on a future before I am ready. 

The parts of me that took the abuse feel that this is a punishment. It seems poetic to have a doctor cut off the physical parts of me that were abused by a doctor. Who does a breast exam on a nine year old? and without gloves? I look at photos of people who've had the surgery online and think they look well, strong, free. I look at Tig Nataro, she's so bad-$$$. Yet when I think of myself in their place, I don't know how to feel well about it, how to feel healed or whole about it. I feel such a sense of doom, punishment, karma. The threat was actually made to me at once point, to cut off parts of me. And now that will happen. It can't not feel like mutilation to these young parts, it can't not feel like a punishment, the scars a scarlet letter saying I am bad, worthless, only good for one thing, now not even good for that. Discarded.

God, brutal. My parts are brutal. They had to be. I know, I know.

Some parts also think I will have complications. That I'll be in pain forever, I'll get nerve damage or phantom limb feeling. My disorder leads to odd scarring and makes me more likely to get CRPS/AMPS and other neuropathies. I fear I will be haunted by sensations and pain, that it will be a never ending trauma trigger.

In reality the great thing about the surgery is that it's one and done. No more scans, no more biopsies which are torture, no more surgeries, no medications, no more worry about recurrence. If I have pain from surgery that lasts, that's still easier to treat than throwing all my body systems into chaos with a medication that causes so many side effects.

I may yet try the medication, the doctor thinks I should. What does he know, LOL? Meanwhile I have to get a bunch of OTHER tests, meet with a new surgeon, etc etc. This is going to take time and I'm lucky to have time. I know illness never comes on our timetable. It's been a brutal five years since 2020, I was just beginning to really recover, and then this. I wanted a few more years for my kids to be out of the house, to have some mental space to decide what I might want for the rest of my life....

This IS my life. This is your life, HannahOne. There is no other. And in this lucky, lucky life I am lucky to have "the rest of my life," to for now be able to presume to have it. I am lucky to have a choice of medication or surgery. I am lucky this was found so very early that I have time to consider the choice. I am lucky to have health insurance, a stable home, and a family, even if my family won't or can't take care of me, I'm not alone. I am lucky just to be here, sanity mostly intact. My cousins are all dead, in prison, prostitutes, or lost, unsolved cases. I'm here. I'm the lucky one. I am lucky to have a very flexible job that I can take time off from as needed, or just stop working if I need to, we would survive, I am lucky to have a partner who can shoulder the money. I am lucky I've already had my children and fed them from my breasts. I am lucky I got to see my children grow.  I am lucky my children are teens. I am lucky, lucky, lucky in so many ways.

Somehow I have to let these parts of me know that. That while they are justifiably afraid, I am lucky. I am an adult. I am safe. This is my decision. If I do it, it will be because I think it's my best option. That I will be with them through it. I will find a doctor I can trust. I will not punish them if I have complications, I will not blame them if I end up with phantom pain or nerve problems or wound healing issues. If they feel horrible about me after surgery, I will comfort them. I will tell them, this is not that, that was then, this is now. I will take care of myself. This is me taking care of myself. This is not a punishment. I don't deserve punishment for things I had no choice in, things that happened, what was said, done. This surgery will be my choice if I do it, a very bounded choice without other good options, but it is a choice. Not a trauma. Painful, sad, scary. But I won't let them be retraumatized.

As I write, Frank has been RUNNING back and forth down the hallway, thump thump thump thump THUMP..... THUMP thump thump thump thump. Not like him. Does he feel the stress? Now he is paused, sides heaving. It's amazing how fast he can breathe. He examines me with one eye, then the other, raises and lowers his head, and sticks his back foot out to groom. Down regulate, Frank, down regulate. I go into the living room. And what do I hear behind me? thump thump thump. The wood floor is Lava for Frank, his nails slip, he never comes this far. Frank! Why are you on the wood floor? He chins each dining chair. Chins the couch. Why, Frank? Why are you marking everything? Is it so your bun-wife can find you? All your life, you've been only waiting for your bun-wife to arrive? I sing, he stares. Blackbird, by the Beatles. "Franklin thumping in the dead of night! Chinning all the chairs, I don't know why..... all his life, he has just been waiting for his bun-wife to arrive!" I get it. I too long for a bun-wife. Or hus-bun. All my parts long for what I didn't have, and can never have, because you can't reverse time. There's only here and now. Now there's a man in my house. My hus-bun is opening the garage door. What am I going to tell him? I've told him nothing. I don't know how to tell him. Where are the words? Where are the words. The words I want to say.

[Marcine]

Dear friend HannahOne,
It is with love, from me to you, that I share my thoughts, unsugar-coated. This is no time for frosting over.

Breast cancer is not your fault.

And it is your unwanted challenge to deal with.

Treatment options require you to spend precious focus and time weighing the trade-offs and making best guesses of outcomes without all the information. To build a healing team and gain confidence in their methods quickly.
To face mortality. To dig deep yet again, and again, then again...  and again when you think you have nothing left to draw on, for a journey no one else can make for you.

All the while fighting the battle against trauma history and fears of future pain. There is no respite during such a time of onslaught. And no tidy timeline. No guarantees. And the loneliness is real.

Intellectually knowing that this time in your life will one day fade into memories— is of no help now.

I'm not even going to mention your warrior strength and optimism, because you already know how much I respect those qualities woven in you.

I would like to gently point out that carrying it all on your shoulders alone is massively difficult... And asking potentially too much of yourself.

I went through breast cancer treatment 9 years ago and my kids were young teens and toddler-age. It was difficult for them, to say the least, to not know if their mother was going to be ok. My heart breaks knowing I could not comfort them at the same time I was going through surgery, chemo, radiation. But the fact is that I loved them and they were my motivation to survive. So as hard as it was on them, they would have felt betrayed and abandoned more if I had tried to keep the situation a secret from them.

We did not pretend with each other. We learned new dimensions of love and humanity through the process. They felt anger. They experienced helplessness. So did I. And I needed them to understand I was fighting strong as their mom.

It was a challenge to rely on friends and neighbors when I felt so vulnerable. Some did small, meaningful things. Others stepped up massively and unexpectedly. Some of them are still in my life, some faded away.

I wish I had a magic wand to give you all the time you need to make the ideal choices and to process the trauma as it comes up, one wave at a time. I don't have that power. And you probably don't have that luxury.

I can remind you that your kiddos are stronger than you might think. Why? Because you raised them.

Making the next, single, good step is enough. More than enough.

Consider sharing the load whenever humanly possible. Your healing will benefit. You don't have to go it alone. You deserve the support and all the blessings, my friend.

Reach out anytime.