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Don’t Tell Me

don’t tell me i don’t have cancer anymore or that i “just have chemo now.”

don’t tell me to go outside and get some fresh air when i can’t be in the sun.

don’t tell me that taking a shower will make me feel better when my skin hurts too much to touch.

don’t tell me that i have the “good kind of cancer” unless you’ve had it and know how “good” it is.

don’t tell me how nicely shaped my bald head is.

don’t tell me how tired you are.

don’t tell me you’ll be there for me and then not follow through.

don’t tell me your medical opinion unless you’re my oncologist.

don’t tell me how to be me, because you aren’t.

I Have No Reason For Being Here

It’s that deep, dark place I visit after spending days or weeks traveling into. The place where I’ve found myself dejected, sad, rejected, angry, jealous.

Angry at the world for not giving me what others have received.

Tears falling as I realize I’m in the place where I don’t deserve to be. I have no reason for being here. Nothing concrete has put me here.

Only in my mind have I traveled here.

The dark hallows of my mind have brought me to this place where I don’t belong.

Even in my depths, I’m outcasted.

Other people belong here. Other people who have suffered, who have been brought here not by their own mind, but by outside forces beyond their control.

Death. Disease. Sickness. Suffering.

Those people, affected by depressing situations, belong here if they happen to arrive.

Not me.

I have no reason for being here.

Yet here I am.

Sad. Jealous. Angry. Crying.

As with everything, and with every time, it will pass.

And it will not look to be this bad from the other side.

Parenting Is Not A Competition

In kindergarten, my daughter was singled out by her “crazy old lady/about to retire” teacher who said Maddie was “very inattentive and probably needed to be evaluated for ADD.”

I was all, “this women has a whole SEVEN kids to look after with a damn assistant!  She obviously is lacking and totally sucks at life to not be able to handle SEVEN kids and she’s the one who needs to be evaluated. “

Unable to even fathom such a thing for my perfect little princess, I took her out of the expensive private school and started first grade in the public school. The local school a few blocks away is really new and great and shiny!

First grade began, and she seemed to be doing well until our first Parent/Teacher conference. Once again, ADD was brought up by her very young, energetic teacher.

Again, I couldn’t wrap my brain around this possibility. My daughter was so caring and sweet and there was no way in living hell there was something wrong with her!

But I relented, and took her to see the pediatrician armed with a heavy dose of internet literature regarding the scary ADD possibility.  What I didn’t expect was to identify with most of the symptoms listed on the checklist.

So, with a heavy heart, I accepted that yes, my little angel was indeed struggling in school.  She was beginning to show signs of a low self-esteem as a result of her poor behavior.  She was showing the insensitiveness that comes with a child with ADD.  She was unable to see how others may feel. She was pretty self-centered.

I waved my White Flag and tried to stop feeling sorry for myself or guilty for something I could have done to prevent this from happening.  I gave up the idea that my daughter would be a stellar student and be the top of her class.  I mourned (seriously GRIEVED) the possibilities I had built up all through her early years of how magnificent she would surely be.  I shed real tears and experienced a heartbreak that I didn’t think was possible.

I felt extremely defeated until I buckled down and became her advocate. I fought long and hard to get her school to become involved in her special education program that would work for her. I went full speed ahead with every behavior modification the school could provide that might make a sliver of a difference.

Over the years, she was given an Individualized Education Plan (IEP) with in-school modifications for test-taking and a more thorough explanation for her assignments.  Her seat was moved in order to minimize distractions and although she continued to struggle, she was really improving.

Along with the modifications, we began trying medication.  I was overjoyed when we finally found one that really helped her without the harsh side effects.  This process was heartbreaking, but we found the one that works for her and for this I am grateful.

So now, here we are in the fifth grade.  Report card comes home and finally there are mostly B’s on it. There are two C’s, but compared to last year when she was mostly C’s and D’s this was such an amazing moment for me and her to see everything we were doing was paying off!

I was so excited that I wanted to dance around the room; this was not something that I am used to.  This was something that has taken so long. I didn’t even it was possible to see a report card such as the one she got today.

After saying all of this, maybe you can understand why, after sharing with you my pure bliss, I would be upset when you complain to me, a whopping two minutes later, about the one B your daughter received on her report card when every other grade was an A.  How I got frustrated, left the room and didn’t want to show you my daughter’s report card.

I do not make this a competition, as you so rudely accused me of.  I would never have those sort of expectations for my daughter after every hurdle we have been through to get her to this point.  That would just be unrealistic.

I know that your daughter is two years younger than mine and is enrolled in all advanced math and reading classes.  I know that she is a very bright little girl and I would never ever try to diminish that!  But I had a happy moment and you just don’t understand how complaining about that one B would make me feel. Here I was rejoicing all the B’s that were on Maddie’s report card and you were looking down on that very same grade; the one flaw on your daughter’s perfect grades.

So, just when I think we know everything about each other I suppose you don’t really know the entire story of the ADD path.  And I don’t even know how to make you understand.

When you told me I was turning it in to a competition, it felt like a slap in my face.  It showed me that your perception of me is way off.  So now what?  How do I make this better?  After three and half years together, I love you.  But I need you to be on my team with this.  Not accuse me of a competition.

I wanted you to jump up and down with me and celebrate this victory.

What Recovery Means To Me

July 1st, 2015

To me, recovery is something one person takes to heart to better him or herself and breaks away from the chains of addiction. It is far from playing with someone’s emotions and feelings in front of a group. When a person in a professional position picks apart a person’s flaws in front of the whole group, then this person is not taking that individual’s recovery seriously. Assigning 500 word essays that are not related to my recovery is no more than an abuse of power.

Here at this correctional facility, my recovery is a joke. It is nothing more than a waste of tax payers’ money. This is the wrong setting to break the chains of someone’s addiction. If you have someone in a professional position acting unprofessionally, how is that helping with recovery? All it does is push me to the point of anger and attitude, which just triggers my addiction.

I know that when I finally do leave here and go home, my recovery was not taken seriously. I will be going out that front gate worse than when I came in because of the way I was treated as a human being. I have come to realize that recovery is not the priority of this system. Instead, it is a way to condition me to be a failure. That will make me come back here, keeping the money rolling in, so everyone can receive their paychecks.

To me, my recovery is much more important than someone else’s paycheck. This DWI program is not allowing me to be honest. It is teaching me to lie, wasting money on teachings that are just common sense. I feel like this program is like forcing a horse to drink water. If I do not do this program, then I max out and lose all my good time. If I want my freedom, I am forced to be in this program, even though it isn’t helping me.

All I know is that my recovery goes far beyond this program, and I need real help.

All That You Can’t Leave Behind

The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.

Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.

You prayed with all of your soul.

Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.

You held that bag and wondered if that would be all you had left of her.

Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”

It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.

You hope she knows that this necklace is very, very important.

Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.

Your soul broke.

Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.

In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.

Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.

Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.

When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.

All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.

Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.

A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.

But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, photographic, can recall everything with the sort of clarity that makes you relive those days constantly.

You are forever delivering that sick baby.

Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.

The sadness is omnipresent and yet nowhere. It is the new world order.

Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.

You must return. New problems, a new specialist, means one thing: you must face your demons and return.

A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.

But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.

So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.

Ever.

—————

This post was written by Becky Sherrick Harks and originally published here, on Mommy Wants Vodka.

Medical Mystery Tour

Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.

This is her story:

Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.

Any other time I go to the doctor? Well… That’s an entirely different story all together.

Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain.  I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.

Imagine my dismay to realize that it was going to start all over again.

I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. :-P ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.

The day before Valentine’s Day, I decided to add passing out to the mix.

After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.

I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)

Oh! But wait! It seems my body decided to throw another curve ball into the mix!

During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.

To me, it was easier to deal with the judgment of  being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.

Except in June, I found out that I managed to get myself knocked up.

I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.

I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.

And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)

I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.

So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.

I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part.  While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?

Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told  be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that. :-P

Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?

Or am I really alone in this?