Select Page

It Wasn’t Supposed To Be This Hard

by | Nov 22, 2015 | How To Help A Friend With Infertility, Infertility, Neurological, Nerve, and Spine Disorders | 2 comments

I’m an ordinary person with (semi) ordinary desires. I was a skinny bitch before I got married, but six years later, I can’t even fit one leg into my old jeans. The youngest child of Bible-thumping Southern Baptists, I was an honors student, youth group member, and basically a good kid.

Until the boy next door.

Age 15, was determined to prove I was not the naive loser across the street, so I rebelled. I hated my life during high school. I hated the rules my family had – no one else’s family seemed so strict. I hated that I was different. I was diagnosed with a neurological disorder at eleven, I spent most of my teen years trying to be normal. I wanted to be like the other kids, not the freak who’d gained weight and slept too much thanks to her medicine. I managed to graduate from high school with honors, was accepted to an in-state, public university, and I was determined to help other freaks like myself.

Six months into college, I met my future husband. My husband wanted to start trying for kids immediately. I was an independent, stubborn college graduate who wanted a career before starting a family. But I’m only <insert age here>, and I’m just not ready for kids. I could have said that line in my sleep, I repeated it so often.

Finally (says my husband in the background – FINALLY!), I caved. Having been on various maintenance medications since adolescence, childbearing was not an overnight decision for me. Doctors had to be consulted, medications slowly eliminated from my bloodstream, alternative therapies considered.

After two months of planning, I threw away my birth control. My own little piece of feminine power was gone. After having had several pregnancy scares and supporting several friends through their unplanned pregnancies, I never dreamed it would be so hard.

31 cycles later, I’m still trying. Over two and a half years of sex on a schedule, peeing on sticks, and praying month after month after month. 26 months in, my husband finally agreed to be tested. The verdict? His swimmers are intact, mobile, and raring to go. Male ego still intact, he went with me for my tests. Blood tests, hormone levels, ovulation tests, all came back normal.

Until the HSG. One fallopian tube appears completely blocked. I have no idea why because my insurance won’t cover infertility testing and we can’t afford a specialist and exploratory testing. I have a few friends who know of and support our efforts, but no one really understands. How can they? Until you have faked a smile through baby showers and children’s birthday parties and yet another holiday during which Grandma asks when you will finally start a family, how would you know the constant emotional ache of an empty womb?

I’m scheduled for a consultation to see if an ovulation induction drug may help, but that’ll be out-of-pocket. I have no one who really understands what this feels like – the constant frustration and disappointment and guilt that I’m keeping my incredible, loving husband from being a father. In all fairness, my closest friends are wonderful and supportive, but I don’t want to be all whiney and “woe is me and my pitiful plight,” so I don’t really talk about it.

I feel the kick in the gut when yet another “guess who’s expecting!!!!!!!” post pops up on Facebook. I smile on the outside and congratulate the happy couple.

I ask myself why I didn’t start trying to have children earlier. I’m 28; he’s almost 31. If it was going to be this hard, I should’ve known somehow so I’d have more time to fight it. I should have known. Hell, I was on so many medications as a child, I’m surprised I haven’t sprouted gills. I didn’t get my period for two years as a side effect of one particularly difficult prescription.

I should have known.

The worst part is the fear that I somehow deserve this. I know intellectually I don’t, but what if this is God’s way of telling me that my genes don’t need to be passed on? Why should I force an innocent child to go through the hell I did as a kid? How fair is it to have kids, knowing there’s a 50% chance my child will be another “survivor” of my condition? What if this is punishment for being a rebellious teenager? I wasn’t a responsible kid; hell, most days I didn’t care if I got caught. What if I DO deserve infertility? What if I did this to myself? These words look so strange on the screen, but what if it’s true?

Yes, I’m asking the question that no couple struggling with infertility wants to ask and what no doctor says: what if this is my fault? How can I look my husband in the eye and tell him he picked a reproductive dud? How do I tell my parents who want a grandchild so badly?

And how do I go through the endless days in this haze of despair without someone who understands?

I didn’t know whether to post this here on Band Back Together. I know The Band is here for anything, but my life and my problems seem so…ordinary. I tell myself, you don’t have it so bad, you know. I don’t like to complain, and I don’t like to draw attention to my imperfections (hell, they do a good enough job on their own… no help needed, thank you very much).

But..I changed my life’s plans to have a family.

What if I gave up my dreams for nothing?

All That You Can’t Leave Behind

by | Sep 24, 2015 | Anger, Birth Defects, Chronic Illness, Compassion, Encephalocele, Faith, Family, Fear, Feelings, Guilt, Hope, How To Help A Friend With Chronic Illness, Loneliness, Love, Medical Mystery Tour, Neural Tube Defects, Neurological, Nerve, and Spine Disorders, NICU, Stress, Trauma | 0 comments

It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”

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.

Parkinson’s Shuffle

by | Jul 10, 2014 | Inpatient Psychiatric Care, Mental Health, Parkinson's Disease, Terminal Illness | 0 comments

I have read many stories on here.

I “fit in,” believe it or not, in many categories. I fit in, for once in my life.

Terminal Ilness.

Mental illness.

I don’t feel like I’m the outcast here. For once, I feel like maybe my problems are not so big that I do not have enough strength to handle them.

I had it all.

Great life.

Great job.

Great family.

Then bam!

It was all gone in a flash.

Like a head on collision.

I was severely injured by a patient at the psychiatric hospital I worked at. I had to have my spine, from my head to my butt, reconstructed. I was asked to press charges against this person.

But why ruin two lives?

It was not his fault.

He was not on the correct medications.

That is why he was there.

I could very well now be the “psych” patient that attacks someone without meaning to. I would hope they would some how find it in their heart to forgive me…

Three Weeks

by | Nov 29, 2010 | Dementia, Grandparent Loss, Grief, Help For Grief And Grieving, Hospice, Parkinson's Disease | 8 comments

3 weeks ago my grandma fell and broke her neck.

3 weeks ago she was rushed to Peoria to see if they could fix her.

At 82 with severe Parkinson’s Disease, degenerative bone disease, (from which she’d lost a whole 12 inches off her height) dementia, and multiple other health problems, we didn’t know what the options were.

The surgeon suggested surgery to repair the fracture. He was hopeful that it would work. Do nothing and she could become a paraplegic if she so much as coughed too hard. Or she could live with the neck brace, which she hated, her lungs could fill up with fluid and she could develop pneumonia. In such poor health, that’s not good.

We opted for surgery; really the only option. Grandma was scared but we all told her we loved her. I told her we would go dancing after she was done as she hasn’t walked in over two years.

She smiled and held our hands, said she loved us and off she went.

Surgery went well and they were able to fix the break. That was not the major hurdle though. Even in good health, Grandma has never done well with anesthesia. Two days before her fall, the dentist didn’t even want to give her a local to fix a couple teeth as she’s allergic to Novocaine.

After surgery, she was put into a regular room and about an hour later, her vitals crashed.

She was gasping for breath. She looked so very scared. She gripped my hand as a wonderful nurse held the oxygen mask on her for close to an hour until they were able to get a bed ready in the Surgical ICU. Once she was settled in the ICU, we each took turns going to see Grandma. She was on a ventilator to help her breathe and give the swelling a chance to go down after surgery. This was against her wishes and she was miserable. She had the vent in for 3 days until it was removed. She did so well.

They observed her for a day in the Surgical ICU (SICU), then transferred her down to another room for a few days.

When she was ready, she was discharged.They didn’t send her back to her assisted living apartment, but to a skilled nursing facility with hospice. Everyone came to visit. Friends, grandchildren, family, everyone. Someone was by her side 24/7. She would talk a little, barely a whisper. Grandma looked at pictures and had us to sing to her while we sat by her side. She told us that she saw my grandpa who passed away in 1978.

She told us all of the beautiful things she was seeing and hearing. It was amazing to listen to her. She told us so many stories. She told us there would be no more pain there and no more wheelchairs. We all laughed and cried and held her hand.

On Tuesday November 16, Grandma took her last breath while my mom sang to her. My mom said it was very peaceful. Grandma wasn’t afraid like she had been in the hospital. I am so very thankful for that. I miss her, maybe more than I can ever express.  My kids miss her too.  They are hurting.  I have given them songs that help them feel better, or so they say.  I don’t know where to go from here. I don’t know how to fix their hurt, or mine.

This holiday is especially going to be hard for me.

Last year I was upset because I wouldn’t get to spend it at Grandma’s house. At least I got to spend it with her.

Now I don’t even have that.

Just Talk

by | Nov 10, 2010 | Shame, Stress, Stutter, Tourette Syndrome | 6 comments

To speak. To form sounds, syllables, words, that when combined, convey a specific meaning to the listener.

A lot of people I’ve met take this ability for granted. They don’t contemplate their ability to articulate a certain sound in the brief moments before they are expected to respond or answer the question looming in the room. Others appreciate the hard work and seemingly miraculous events that occur to allow them to talk.

I’ve never known such bliss. For as long as I can remember, I’ve had a stutter. It is what my childhood neurologist referred to as a “hesitation stutter” in that I have difficulty moving past initial sounds.

Throw in a few ever-changing involuntary muscular tics, and you have a diagnosis of Tourette Syndrome, which is a genetic condition consisting of both verbal and motor tics. I rarely admit this as the root cause of my stutter because of the next question I inevitably get – “so why don’t you swear all the time, then?”

Well, I do, but it is completely intentional and not related to the 10% of Tourette’s patients who have coprolalia (involuntary swearing or inappropriate comments and usually how the media portrays Tourette’s).

It feels like a giant lump in my throat, paralyzing my vocal cords and restricting sounds from emerging. Stress makes it worse, as does lack of sleep, or too much sleep, or sometimes just the changing of the winds.

I have struggled with the mundane aspects of life, the things my husband does without a second thought. For me, they require meditation and at least 10 minutes to psych myself up.

Calling to schedule an appointment? Awkward. Answering the phone with the professionally appropriate, dictated script? Impossible. Going through a drive through window? Painful for all involved. Successfully navigating a phone interview? Screw it.

I’ve tried being honest and upfront with employers and customers (I have a very public-facing job. In this recession, I took what I could find. Call me a masochist), and sometimes it helps.

The sympathetic ones understand that my stutter does not define me, nor does it indicate a lack of intelligence. I can’t say that has been the universal reaction from everyone.

The ones who laugh and mock are the most painful. I’ve learned to have a thick skin, at least outwardly. I’ve learned their insults and degrading comments are indicative of their shortcomings, not mine. I thought it would get better once I was out of high school and into the professional environment, where “adults” would know better.

10 years later, I’ve found that’s true about half of the time.

I’m 28 years old, but I still long for just one day where I can say what is on my mind without struggling to get the words out. It sounds so stupid when I put it on paper, and it almost seems ridiculous in comparison to other people’s issues.

In the last 6 months or so, it has gotten worse, likely because of the stress of my current job. I’ve tried medications, but the zombie effect is counterproductive to successful employment, and my doctors took me off all of them two and a half years ago at the start of our child bearing efforts.

I’ve tried alternative therapies, yoga, acupuncture, long hot baths. Nothing helps for long.

I’ve learned to fight past it. Keep doing the things I want to do, and screw anyone else who doesn’t understand. I don’t normally talk about it except when absolutely necessary because I don’t want to be the whiny chick who feels sorry for herself. I keep my head down and go through life as best as I can in that moment.

I’ve noticed a common theme on this site – a lot of the posters say they don’t like to complain or talk about the issue in their post, myself included. I am so grateful for this forum and the creators for providing a safe, open environment for all of us to gather and support each other.

Sometimes we need encouragement, a listening ear, thoughtful words, or a place to vent without judgment.

Sometimes we just need to know we’re not alone

The Doubters

by | Oct 23, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness | 2 comments

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