Select Page

Losing My Religion

Yesterday afternoon, shortly before 12:30pm, I nursed my sweet baby girl for what I can only pray was not the last time.

I sobbed silently, my tears dripping onto her curls while a swarm of my closest friends and family buzzed around the kitchen.  I was losing my religion in the living room and the day was only halfway over.

My mother is back and stayed with Nugget while Nugget’s Daddy worked from home. Barbara and Martha took me to chemo.  Despite having loaded up on Ativan, I cried most of the way there.

I wore a top that would provide easy access to my port, which had been slathered with theemla cream and covered in saran wrap for at least an hour.

Patients are only allowed to have one guest accompany them to the treatment room.  I had two, who would not take “just one” for an answer.  Marla, my oncology nurse, happily pulled up another chair to accommodate my posse.

Then a senior patient, as all the other patients seem to be, swung the treatment room door open and announced, “Well!  All the good chairs have been taken.”  I wondered if I’d gotten one of the good ones.  I hoped so!

Marla drew the curtain so she could access my port.  I told Barb and Martha that they would be watching, because I couldn’t really get a good look at the action and wanted to be sure my friends suffered along if there was indeed any suffering to be done.  There was not.  I think it was worse for them.  Then the two of them chatted about how they’d like to be nurses except for, well, all of the gross stuff.  Cute scrubs had been really, really appealing, but simply couldn’t trump dealing with blood and needles.

The dynamic duo was relentless in their efforts to keep me entertained.  As I was showing them my phone that Nugget had rendered the antenna unretractable on, Martha cracked, “Your phone has an antenna?”  I replied with a smart, “Shut your trap!” which sent senior patient #2, coughy McHacksalot, into a rage of laughter and then into a, well, fit of coughing and hacking.  Note to self – keep wiseass cracks down to a dull roar in the treatment room or suffer the wrath of coughy McHacksalot.

Treatment went fairly well.  I had no reaction to the test dose of Bleomycin.  I took the extra dose of Ativan she offered.  (duh!)  At one point I was having some pain, almost like a burning sensation when I took a deep breath.  so Marla switched my iv bags and checked my lungs.  Whatever it was, it subsided and I finished Day 1 of treatment with no real issues.

Working Through The Anger

When I began counseling for childhood physical and sexual abuse, I was broken. A broken heart, a broken spirit. I had carried the guilt and shame of my childhood abuse for so long that it was like an old winter coat. So heavy to carry around each day. So hot that some days it was stifling. And yet it had the comfort of the known. It was scary to throw off that old heavy coat of guilt and shame and face what else was under there.

I thought we would begin slowly. I thought I would share just a bit at a time. My counselor agreed to go at the pace I set. But once I began talking, I kept right on talking. I told her EVERYTHING I could think of. If I thought of something in between sessions, I wrote them down so I could tell her next time. It seems that once I felt a crack in the dam that I’d built to protect myself, the floodwaters couldn’t run fast enough.

I let it ALL out.

It was scary. I shook like a leaf in a hurricane the first session and sometimes after that. But the overwhelming feeling was relief. My need to let it all out was greater than my fear of what my counselor would think of me (of course, that was my insecurities and had nothing to do with my counselor). It was such a RELIEF to release all the secrets I had been carrying.

Once the rush of information was over, we started working on issue after issue.

At some point in counseling, my shame and guilt turned into anger.

ANGER that the abuse occurred. ANGER at those adults who knew and did nothing to protect the little freckled girl with long braids that I had been. ANGER that I carried the guilt and shame of the abuse for so long. ANGER that my stepfather never was held accountable for his actions. ANGER at the days and nights of fear and pain and abuse I endured as a child unable to protect herself. ANGER at the bruises, welts and blisters I had to hide outside of our house. ANGER. ANGER. ANGER.

My counselor encouraged me to feel the anger, but I was terrified of the anger. I remember one conversation where my counselor asked my what about the anger made me so afraid. My reply was “I am afraid that the anger is so huge and so overwhelming that if I tap into it I won’t be able to control it.”

She asked me what I thought losing control of the anger would look like.

I told her I was afraid that the anger would take over and I would just scream and scream and scream until my throat was so raw I wouldn’t be able to scream anymore or that the anger would take over and I would break every single thing in my house. I truly was afraid to let myself feel the level of anger that I knew was raging inside of me.

Then she told me she had a plan, if I was willing. She took me out to her car in the parking lot. She opened the trunk. There in her trunk and in her back seat were huge plastic garbage bags of glass bottles. She had been saving glass bottles for a month or so. Not just hers, she had also asked friends, relatives, and neighbors to save their glass bottles for her.

Her idea was for me to find a place and time where I could be alone (or have a trusted person with me if I chose) and break the bottles. I could scream, cry, or “talk to” the people who I was angry at with each bottle I threw.

Her only “warning” – wear safety glasses.

I won’t lie. It sounded kind of corny to me. But I really trusted her by this point and I was aware that I really needed to deal with this anger before it exploded in some uncontrolled way.

My husband took the kids for a Saturday to go to a park, out to lunch, etc. I went into our basement and set the stage for a safe anger experiment.

I wanted to be able to contain the flying glass so I could avoid anyone being cut later on an overlooked shard.  I hung up some plastic sheets so the glass would stay in one area of the basement. I lugged bag after bag of glass bottles to the basement, knowing there was no way I could break all of these bottles at once. I put on long sleeves to reduce the chance of me being hurt by flying glass and donned the ever-so-lovely safety glasses.

I felt stupid. I felt ridiculous setting all of this up. Do “normal” people have to go through all of this just to deal with some anger? But I soldiered on. I wanted to at least be able to say that I tried.

I threw the first bottle. It shattered, but I felt nothing. I threw the second bottle. Again, nothing. I threw the third bottle with some real gusto. Oooh, that felt GOOD! I started throwing the bottles as hard as I could. I eventually started yelling things like “THIS IS FOR NOT PROTECTING ME” or “YOU BASTARD, ROT IN HELL” or “YOU SHOULD CARRY THE GUILT AND SHAME” as I threw the bottles. IT. FELT. AWESOME.

Oh, I was ANGRY. REALLY, REALLY ANGRY.

But I can’t even describe how it felt to have an outlet for that anger.

Bottles were flying fast and furious! There were clear bottles, green bottles, amber bottles and blue bottles (the blue ones had the most spectacular shatter for some reason).

When I had thrown EVERY.   SINGLE.   BOTTLE. I was breathing hard and exhausted. But I realized I had felt my rage, really felt my RAGE, and the world had not stopped turning. My house was still standing. My family was fine. All was well. Better than well. Not only had I started my anger work in a very satisfying way (I can not describe the satisfaction of yelling out “YOU ARE A SICK FUCK WHO TOOK ADVANTAGE OF A LITTLE GIRL ” and then hearing the shattering of the bottle) but I had also proved to myself that I could handle the anger without losing control.

I know it sounds a little “nuts.” I know it sounds kind of corny. But I am here to tell you – this exercise opened the door for me. It helped me get past my fear of the anger and bring it out in the open so I could work on it.

So thank you SR for being such an awesome therapist that you collected bottles from far and wide for me. Thank you for showing me a way to tap into that anger safely.

I saved a little glass jar of the multi-colored shards of glass. Blue, green, amber, clear. I smile when I walk past it now. Beautiful reminders of my righteous anger and SR’s lesson that helped me release it.

The Doubters

I had an appointment with a new neurologist this week. A neurologist who, by all accounts, is pretty good at what he does. But there’s this thing that happens at each new neurologist’s office when you come in with the scars of surgery from Chiari Malformation.

The Doubt.

There is a pretty good percentage of neurologist who think that Chiari Malformatio isn’t significant. They think that it is almost exclusively an incidental finding that just happens to show up on MRIs of people with crushing headaches. It’s like they hear hoofbeats, see a horse and go, eh, I think that’s just a coincidence.

So when I told the neurologist my past medical history, before I got past the part about being diagnosed with Chiari Malformation he looked and me and said, “now, was this a real Chiari?”

No, you’re right. It was really a series of unicorns and rainbows that made it look like my brain had squirted out into my neck, thereby compressing a lot of really important stuff. How silly of us to not realize. I wonder how the 3 neurologists I saw before surgery and the 3 neurosurgeons I got second and third opinions from missed the fakeness of my condition. I mean really.

It makes me angry. It comes across as a doctor asking you if you had brain surgery for fun. It comes across as an accusation of faking it. And it makes me livid. The last neurologist I saw did the same thing. As did the one before that. And until they look at my early MRIs showing the severity that my Chiari and how it messed with my brain and spinal cord, they treat me as though I made this up, as though I wanted this life, that surgery, this year of endless headaches.

In the end they all let it go, or change their mind and move on with the exam and eventually treatment. But I feel like I spend the first 20 minutes of each exam justifying the scar on my neck, justifying the choice to have this condition treated.

I have a lot of faith in doctors. I’m married to one, I am entering into a career in the health field myself. But I am tired of being condescended to. I’m tired of doctors acting as though I am ignorant of my condition because I’m not a neurologist. As though I didn’t do the research, didn’t ask for multiple opinions, didn’t play the wait and see game until I was so miserable, so uncoordinated, so incapacitated that I couldn’t function. I’m tired of the air of doubt in my symptoms.

If I had a tumor, they wouldn’t ask if it was a “real tumor.” If I had MS they wouldn’t ask if those were “real lesions.” But somehow, because my condition isn’t well known, isn’t well researched (or frankly, researched at all), there is a constant doubt to my story, to my history, to my pain.

And it makes me doubt myself. And I hate that even more

How Badly Would I Feel?

Playing Scrabble”

“What kind of word is that, DOUR? I challenge, you know what it means?

What is that? one of those Jewish words, right – cause you are Jewish, what you call that Judaism? You eat Matzoh Balls? cause when I was little I had a Jewish friend, and we had matzoh balls. How you make those? Maybe you know him – Tenenbaum was his name, you know Tenenbaum?  No, then how about another kid – his name was like Borish or Barish, right, that is a Jewish name. How come you do not wear a yamcha? Oh, you are not observant and what about those curly things down the side of their face – what are those guys called?

OK – so DOUR here in the dictionary it says it means formidable, stern or morose, how you pronounce that m-o-r-o-s-e.

Anyway, man, you ever go to the slam first Wednesday of every month at the public library? I did it once – I came in third place. Maybe I’ll see you there sometime.

So you not coming in again this week so I may not see you again cause I’m supposed to be discharged on Friday although today they told me maybe not till Tuesday. How come you’re not coming in – you gotta work to earn the GWOP?

What?

You don’t know what the GWOP is? That’s the money man – you gotta make the GWOP you want to live.

Anyway I’m gonna be sending you a telegram, I told you I was gonna write a poem man but I don’t know yet. I thought about it but once I start it flows. I just need a title, maybe I’ll call it “This, That or the Third Thing” cause you like that – you all about this, that or the third thing, you know what I’m saying?

Nah man that’s not my expression – that’s from the street. The street man – you ain’t never been on the street, that aight man you a good guy and yeah I ain’t gonna use when I get out cause how bad you think I’d feel if after being in rehab, inpatient and all that, I go out and use again.

I mean how bad would I feel…”

How Do I Choose Me?

Disclaimer: This is written from a really dark place.  If body image issues or food relationship hangups could trigger you, please don’t continue.  This post sounds dire and desperate and awful, and I suppose it is… but despite the darkness, I am actually quite happy with my life overall.  It’s just this one head space that I can’t get right.

I haven’t been blogging… and this morning I finally realized why.  I was reading Mish’s post (I am guilty if I eat) and here was my comment:

Thank you, thank you, THANK YOU!!!  I could have written exactly this today.  I have been really struggling lately because I have lost 40 pounds, but with the stress of grad school, working from home, a toddler, a marriage and my health journey… I’m slipping.  I gained three pounds in two weeks, and so far this week isn’t looking good either.  I’m eating terrible for me things on purpose, in crazy amounts, allowing myself to consciously and purposefully choose the worst options even when they aren’t what I really want.  I don’t know how to stop it…  I am terrified that I’ve done it again, had some success only to turn around and sabotage it all and end up so heavy, unhealthy and miserable again.

While I typed out that comment, I realized… I’m not blogging because I have nothing good to say.

I’m overwhelmed. Maybe even depressed.

I’m putting myself last because something has to give and I don’t know what else can, but me.  I know how important it is to take care of myself, but when the other categories are my marriage, my daughter and my graduate classes, I’m the only thing that I can let go of without destroying some bigger dream.

(Well, without destroying some bigger dream for all of us.)

Health is my bigger dream… but now I’m terrified that I just can’t get there.  I’m purposefully making terrible food choices.  And the worst part is that it’s not really about the food, but that I am choosing the worst options strictly because they’re bad.  I’m not exercising.  I feel unmotivated, uninspired, and unhappy.

All of my old thoughts about my body have returned, and all I seeing the mirror is a fat, unattractive woman and it makes me wonder why I bother.  If this is me anyway, why bother?

I’m sneak-eating again.  I’m buying food when I’m out and eating it in the car. Then I stop somewhere to throw out the “evidence” so that no one knows. Some of my smaller pants are already getting too tight again.

I know how this works.  I’ve been here before.  I know all of the arguments.  I know how much better I look and feel now.  I know how hard it was to lose 40 pounds and how much I don’t want to gain it back.  I know how proud I am of the work I’ve done, and I know exactly what I need to do to keep it going…  so why am I not doing it?  Why do I continue to make poor choices?

How do I choose myself when it means taking something away from my daughter, my marriage, or from the job that brings in a tiny but absolutely necessary amount of money each month? How do I choose myself when I’m taking away from the graduate work that will mean a better life for myself and my family someday soon?

I know I’d have more to give, in some ways, if I made time to take care of myself… but how do you do it?  When you’re standing there, making the decision between cuddle time with your daughter and getting up to exercise, or between making a healthy dinner and caving to take-out pizza so that you can finish your homework without staying up until midnight…

How do I choose me?