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Ask The Band: I Don’t Know What I Am Going To Do

I live in fear.

Lots of different fears, but this is the one getting the most airtime right now.

You see, I present a lovely picture of control and happiness to the outside world. The truth, however, is that I struggle far more for control than I should, and happiness has made only brief genuine appearances in the past year or two.

Because of my lovely picture (which is in constant need of maintenance), I cannot talk to many people about the constant weight on my shoulders. This situation is not helped by the recent loss of the two closest friendships I have, which happened as these things do, with only small amounts of shared blame.

I’ve been limping along for a while now, managing occasionally to feel like life is worthwhile and these wonderful times of hope are mostly because of my wonderful husband, the one person in the world that I am not afraid to cry with, the one person I know will not think less of me, or dismiss my pain.

This wonderful husband just got a short-term contract (four months) in a city six hours from here. It is a wonderful opportunity for him, one which I happily encouraged him to take, but I cannot go with him for various reasons.

During the day this seems like something I can manage; after all, he’ll still be here on the weekends, and it’s only for a little while.

But at night, the darkness invades my heart, and I cling tightly to him, terrified by the thought of being apart from him for even one night. Because along with being my best friend and soul mate, he is frequently my salvation.

It is because of him that I have not dropped out of grad school under the overwhelming apathy that threatens to prevent me from finishing assignments.

It is because of him that I can sort through my often tangled feelings and come out the other end feeling like I might be okay.

It is with him, and only him, that I can say that haunting word “depression” and not feel like I have to have a treatment plan all mapped out for his perusal.

Five days a week without him is five mornings I have to get out of bed and go to class. It’s 80 waking hours that I cannot debrief in his arms. It’s five evenings of dread, knowing what’s coming when I get too tired to fight it off, and it’s five nights of hugging my pillow, praying sleep will come before the melancholy attacks.

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I don’t know what I am going to do.

Fear, A Poem About My Eating Disorder

I hate the way I look when I’m in front of the mirror.

Its a constant battle, always running on my greatest fear.

Who is going to love these rolls and cellulite?

Can’t wear this or that because it feels too tight.

Baggy sweats and sleeping alone at night.

Have to restrict or live with guilt after a meal.

Food is the go to, to change the way I feel.

Eating until my stomach is going to burst.

Punishing myself after, my choices are the worst.

Tomorrow I’ll do better, I won’t do it again.

Hop on the scale and I’ve gained another ten.

Shame and self loathing begin to spiral,

I get on my knees on the bathroom tile.

I have to purge this feeling, immediate relief

Now the enamel is wearing off of my teeth.

Run the water so no one can hear.

That being unlovable is my biggest fear.

Ask The Band: And Yet

So, I got my medicine adjusted like I said I was going to.

After a hilarious rigmarole of being referred to a doctor who only saw seniors, then one who only saw children, then one who didn’t take my insurance, I finally ended up with a really sweet doctor (who is the tiniest woman I’ve ever met).

She added another antidepressant to the one I was already taking, and it seems to have helped the symptoms in question – I’m still sleeping odd hours, but it’s only for 8-9 hours at a stretch, not 12-14, and my default state is “bored” instead of “bored and sad and mopey and lonely.”

And yet…

(There’s always an “and yet” with mental illness isn’t there?)

(ed note: Yes. – AB)

And yet I’ve not managed to quite nail things down. I’ll stay up late without realizing how late it is, then sleep until 4 or 5 the next afternoon. The new medicine causes insomnia, so I was warned to only take it in the morning. But if I don’t take it when I wake up at 4 PM, then I’ll just sleep even more. If I do take it, I’ll be up all night and sleep late the next day. If I do manage to wake up early and take my medicine, I’m so tired that even the medicine can’t keep me up and I pass out around noon and wake up at 7 PM (which is what happened today).

I just want to wake up in the morning feeling at least somewhat rested and get tired at night being able to fall asleep. Since when is that such a massive thing to ask? If I could just do that AND have my medicine killing off the sadness and apathy, then all I’d have to do is muster up the motivation to do laundry and clean my room and make it look like a human being lives here!

To top it all off, I’m moving to North Carolina within the month. My best friend is moving back into her childhood home, which she inherited when her dad died, and she’s offered to let me live there rent-free if I cover half the bills. Her area has a much better economy than mine, so I could find a job more easily. And there are nearby schools where I could get either an associate’s or a second bachelor’s degree in the field I want to move into.

It’s too good an offer to refuse, so I’m cashing out my savings and heading up there as soon as she gets moved in and ready.

And yet…

What if it all falls apart?

What if I can’t find a good psychiatrist nearby? I don’t even know what my insurance situation would be before I got a job.

What if I get on this same fucked up sleep schedule again and my room stays this messy and I’m awful to live with and she hates me?

What if I still don’t find a job and I burn through all my savings?

What if I get the degree, and take out a bunch of loans to do it, and still can’t find a job even then?

I don’t know. I was so sure for awhile this medicine had made things a lot better, but I sure don’t feel any less afraid.

Ask the Band: Grieving After Abuse

Dear The Band,

I was sexually abused as a child from age 5 to 8 by my babysitter’s son who was 10 yrs older than me.

I didn’t tell anyone until I was 10 and blocked the bulk of it out until college.

I just found out that the babysitter passed away earlier this week.

I don’t feel anything about her passing

I am sorry for her daughter and all of her grandkids. But there’s really nothing there.

Am I wrong for feeling like this?

Diagnosis Maple Syrup Urine Disease: Memories of Fear and the Unknown

Fourteen and a half years ago, our lives changed forever.

We had already suspected that something was not quite right with Anna. She had stopped nursing after a few days. I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding. She did well with that for a few days, but then it seemed like a challenge just to get her to drink an ounce. We called the nurses on the maternity floor where she was born and were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.

I was still worried, but we had our first postnatal pediatrician appointment the next day (July 25), so I knew we would get answers then.

In the meantime, I received a phone call from someone from the state of Michigan. I’m not sure – my memories of that are vague. I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn to confirm it.

I was concerned, but still focused on our doctor’s visit.

When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors.

I guess she wasn’t sure how I would react to what she would tell me next.

When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD), it was very serious, and she was very sick. T

he only specialist in the state who saw patients was located at University of Michigan: we were expected down there and we needed to leave as soon as possible. I remember that her southern accent was soothing and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog. I didn’t understand… Anna was born healthy. Both of her Apgar scores were 9. That meant we were supposed to live happily ever after.

Right?

Right???

At the time, Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch. And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.

After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.

On the drive to U of M I poured over my “What to Expect” book. MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.

When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell. He then took a swab of her earwax for them to smell. We were completely flabbergasted… what did he think he was doing?

We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.

You see, there were signs that Anna had MSUD, but we never picked up on them.

She had a very high-pitched, shrill cry, but we joked that she’d sing opera someday. By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over. We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.

We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good.And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.

By the time we were in PICU, she had an IV in her scalp because she was so dehydrated that it was the only blood vessel they could use. She had an NG tube giving her nutrition. She was hooked up to heart monitors and pulse-ox monitors. She looked so tiny and helpless there in the bed. We’d never felt so helpless as parents as we did then.

That day is one of the few times I’ve seen my husband break down and sob.

What information we were given about MSUD over the past few days was overwhelming. Most of the official definitions included two very frightening likely outcomes: mental retardation and death.

The prospect of having a child with a restricted low-protein diet was daunting as well. Would we need to become vegetarians, too? If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? Those fears seem so trivial now, but they were so real to us then.

Over the next two weeks, Anna got stronger.

After she got out of the PICU, she was moved to a regular room. After she regained some weight and was able to take feedings by bottle, we were able to come home.

She was sent home with the NG tube, as she was still taking about a quarter of her formula that way. Shortly after we got home from the hospital, she grabbed the NG tube and pulled it out, flinging stomach acid all over me. I should have known then that it would serve as foreshadowing for how the next thirteen years would go!

Thankfully, we were able to remove the tube after a week.

As I think back to those days, I also look ahead to what faces us.

When it comes time for her liver transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers. The big difference will be that this time, we will be filled with hope.

Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past 14 years.

Hope.

The Squirt Bottle

Unable to have children of our own, my then-husband and I had the opportunity to have a foster-to-adopt situation with a precious little girl.

Just before her adoption, we were asked to also foster her little sister, who was about to be born.

I was hesitant. I didn’t want to take on a child who had a high chance of returning to her birth parents. But I couldn’t let my little girl’s sister go to strangers, so we said yes.

As time passed, the birth parents weren’t doing their part, and I felt more and more like she was my baby, and I would have her forever.

I should have been happy. I had everything I’d ever wanted!

The money the state paid us to take care of foster children made it possible for me to be home with those two pretty little girls all day. I had always wanted to be a stay-at-home-mom. And now I had not one, but two children to take care of! The girls were happy, and the best sound in the world was their laughter as they played together.

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I wish I could say my husband felt the same way.

He was resentful of that baby as soon as she entered our home.

He hated all the time I was spending with her, instead of him.

He was jealous.

Of an infant.

This one particular night breaks my heart. I wish I could go back and change things, but he had trained me for years not to question him. Fear of his anger kept me frozen.

The baby had learned to stand. She was so proud of herself! There was no stopping her now!

From the time she was a newborn, she had always hated going to sleep, and getting her to settle down for bed was a long, drawn-out process. But with her newly developed skill of standing, it became much worse. I would lay her down, she would stand up. I would put her down again, she would stand right back up.

One night, he had enough. “I”ll make her learn she has to lay down when it’s bedtime,” he said.

He came into the girls’ bedroom with me when I put her to bed.

I laid her down in her crib, telling her goodnight, same as I always did. She stood up, and he sprayed her right in the face with the water bottle we used on the cats when they were doing something wrong. I was horrified!

But what was I supposed to do? He was my husband, and I was afraid to question him.

The battle of wills between a man in his 40’s and a less-than-year-old baby went on for a while. I would lay her down, she would stand up, he would spray her in the face.

Finally, he pushed me too far. She was soaking wet, dripping on her sheets. I knew even if she did go to sleep, she would end up getting sick from trying to sleep in her wet clothes and bed. I took a chance and said, “That’s enough!”

Amazingly, he walked out the door without saying a word.

I took her out of her bed, pulled her wet clothes off of her, dried her with her little hooded towel, then put clean, dry pajamas on her. Then I changed the bedding in her crib and started the bedtime process again.

When I walked out of the bedroom, she was back to standing in the crib. I walked out to the living room where he was watching TV. I looked him dead in the eye and said, “Your way didn’t work, and you’re never doing that again.”

He didn’t argue, and he never tried that stunt again.

I think he figured out that there was only so far he could push me when it came to the children.

He could belittle me and mistreat me all he wanted, but don’t mess with the Mama Grizzly Bear.