Friday, August 29, 2014

The Normal Heart, AIDS and what we should have learned but didn't

If you haven't seen The Normal Heart yet, go watch it now. It was deserving of every single nomination it received at the Emmy's this year.

I had been meaning to watch it for a while now, but was fighting with our satellite provider. I finally got it recorded and had a few hours to myself yesterday to sit and just be with it.

I mentioned watching it on the almighty book of face, and most people talked about how sad it was. And it was. God, it was.


Mostly, though, it made me angry and reminded me of all the things I saw, the places I went, the people I tried to help, the stories I heard.

I grew up in the 80s, about a decade too young to fully grasp what was happening in real time in the early years of the epidemic. I remember hearing things on the news about people who were sick, about strange cancers and mysterious diseases that otherwise young and healthy people were dying from.

Then Ryan White hit the scene. He was a kid with this disease that, up until that point, had mostly been one that infected gay men. He was a kid, shamed and attacked because of the assumptions people made about him and who he was and what his family was like.

All because people didn't know.

No one really knew what was going on at the time.

What had been happening, for years by that point, was that gay men all over the country were becoming sick and dying. Their stories didn't make it into the news. They were refused treatment by far too many within the medical community. They were shunned by their families.

Misinformation spread like wildfire, but at the same time the story didn't really hit the mainstream until a little boy in Indiana got sick too.

Thousands of gay men were dead by then.

It wasn't until a couple years later that President Reagan finally said the word AIDS in a press conference. Years.

Then he pledged to help find the cause and a cure, but cut the meager funding the disease had been given.

By the time Magic Johnson announced his HIV status in a press conference, we knew more about the disease, but the stigma was still there. It was still largely a disease of gay men, but we knew by then that it was transmitted by blood and through sexual activity. We knew that hemophiliacs like Ryan White were at risk. We knew that IV drug users were high risk. We knew that women could get it and transmit it too.

By then, there were some treatments, not for the virus itself so much as for the side effects. AZT was the first and it often did more harm than good. Later on down the road there would be antivirals and more medications aimed at not just lessening symptoms but extending life. There are now people (those with the financial means to afford the treatments in the early days especially) who have lived for many decades with the virus.

I remember standing in the garage with my father watching Magic's press conference. I knew then, at the age of 14, that I had to do something.

I'd attended fundraising walks and done tons of research on the condition in college, reached out to AIDS Project Los Angeles. I volunteered in area hospitals caring for babies born to HIV positive mothers. Even then, in the mid 90s, there were volunteers who were afraid to touch the babies.

It wasn't until I was in law school though, that I really began to understand what this disease had done. I started working in a pro bono capacity with an AIDS clinic. To qualify for our services, clients had to be HIV+/AIDS diagnosed and meet income requirements. While most legal clinics helped with specific issues, we helped this specific population. By then, that population included women and men, young and old, gay and straight.

Most of our clients were still gay men. They taught me so much more than I could have ever hoped to help them with.

If I had to guess, the average age was about 40.

They had for the most part been modestly wealthy, or at least financially stable before this disease invaded their lives.

They'd spent every penny they had on treatments, on traveling to Mexico seeking alternatives.

They'd spent whatever was left of their life savings on the assumption that they were going to die.

They ran up credit card debt because they figured their days were limited.

They were fired from their jobs, they were shunned by almost everyone who knew them.

If they hadn't been fired, they quit because they were too sick to work.

If they applied for Social Security Disability, they were fairly often denied.

They were denied the chance to rent property, landlords tried to evict them.

They were disowned by their families.

They were unable to stay in the closet when the lesions started to show up, because everyone assumed that they were gay. Even if they'd been hiding that for their entire lives, the lesions outed them.

They'd lost friends, lovers, companions. Some had lost almost everyone they knew.

By the time these men came to me in the late 90s, this disease had stolen just about everything from them, left them financially ruined, without families, without the friends who'd already died, without jobs, without housing.

We helped them with all of it, the aftermath of what this virus had done up to that point. We fought landlord/tenant disputes. We referred employment discrimination cases. We filed Social Security appeals. We had lists of medical resources. We dealt with a ton of debtor relief issues, helped them file bankruptcy.

We helped some of them as they tried to get back up on their feet. Healthier now because of the treatments, they wanted to be able to work again. They wanted out of debt. They wanted to find jobs. And no one would hire them. They were so far in the hole that they couldn't get out.

A few of them told me they wished they had just died when everyone else did.

We wrote advance directives and wills. So, so, so many of them came to us for that. I couldn't even tell you how many interviews I did, how many wills I drafted. The vast majority of them had nothing left, almost no one to leave it to, but they wanted to take care of whatever they could ahead of time.

I'd get calls to revise wills when those who were chosen to inherit things died first.

I brought a will to a man, a boy really, on the morning of his death. He was 22 years old without a penny to his name, but I did what I could to ease his worries in those last moments. I'll never forget his face, his eyes.

That scene in the movie with the Rolodex. That awful scene. The phone call telling you someone else was gone. Damn. That one brought out the deep visceral sobs in me because I've taken those phone calls.

It happened. By then the deaths didn't happen constantly, but they happened often enough.

My most memorable client was a man, in his mid 30s. He was HIV+ and had managed to keep his viral load low through meds. He wasn't sick, he wasn't dying, but he wanted to get his will done because he just wanted to make sure it was taken care of.

I sat him down to do the intake interview, and within minutes he was sobbing. He didn't have much, but he didn't have any family to leave it to. He came out when he was diagnosed. They'd disowned him, saying some horrific things in the process. He'd not spoken to his father in years and it broke him. He was carrying this burden and he hated every moment of it, he knew that it wasn't his fault, but it still felt like it was.

He said something to the effect that he wished he'd been born to a different family. I told him that although I couldn't make that happen, there was something that I could help him with. If he was interested.

I was totally talking out of my ass at the moment, if I'm being honest, because I had never done a petition like this before and didn't have any clue how to do it or what it entailed.

I told him that he could change his name. Legally. He could reinvent who he was, be a man of his own. It ended up being a fairly simple process, actually. There were a couple of forms, a notice requirement and a hearing and it was done.

He was so grateful and in that moment I really began to understand what life was like for these men. I'd visited them in their homes, seen them in the hospital, talked to them for hours and hours. That day, though, it really hit me.

He'd lost everything from this disease even though he wasn't sick yet, but I'd helped him get a little bit of it back.

Seeing the movie yesterday brought it all back.

I haven't been working in that capacity for years, and I wonder all the time what things are like for those living with HIV and AIDS now. Is it different? Is it better? How many of my clients are still here?

When the news of Ebola started to hit the news, I saw the same irrational paranoia begin again. The transmission methods are very similar between the two diseases. The stigma is there all over again now. The misleading reports on the news. The people who live insulated lives convinced that others present a threat to them.

It broke my heart because we should have learned. We should have, and we haven't remembered those lessons nearly as well as we should have.

Partly, in fact primarily because of HIV and AIDS, we have universal precautions now...the very strategy that will serve as the best defense we all have from Ebola. We're better equipped to fight Ebola because of AIDS, not in spite of it. 

I hope that we don't make the same mistakes over again. I hope that we can use our hearts and our minds to help others who need it, not lash out against them in irrational fear.  I hope that the government directs the necessary resources in a timely fashion, that it refuses to brush this under the rug for years and years. I hope that things are different this time around.

I hope.

Thursday, August 28, 2014

Conscious Avoidance

At some point in this whole adding another member to the family process, we realized that we were going to have to rearrange almost all of the house. The kids have moved rooms, we've walled in the loft, regaining some of the spaces we had lost to them before. It's been a long undertaking, and it's almost done.

One of the final bits of it all involved moving the entertainment center and television back into what should be the family room, but has mostly been wasted space for five years or so because it was beneath the loft...the loft that we were using as a bedroom even though it didn't have a wall. Consequently, we always had to be quiet after the kids went to bed and the room became the place old toys and furniture went to die.

Somehow in the process, my husband sweet talked me into a new tv. Which we needed, and I know that we needed. The old one didn't have the proper connections for any of the devices or blu ray players we use these days, so it really was a rapidly aging dinosaur.

We got a new one. The enormous old tv that doesn't work with anything anymore is still sitting in my family room until I can figure out a way to get rid of it. The other tv that had been down here, even older than that one, migrated up to our room.

We finally have a grown up tv in our room. We've been married for 16 years. Not in a hurry around here. Nope.

The problem with moving it up there is that it was too big for the space we had in the armoire. To make it fit, my husband had to take out the shelf that was in the armoire.

That shelf.

The one that collected all of the things that I couldn't deal with.

Some of them had been there for a very long time.

This shelf, full of things that I put there because I couldn't read them or sort through them or look at them, it's sitting on my floor at the moment. The contents piled up in the cradle because he had nowhere else to put them.

This shelf, it was full.

There are the trinkets the kids have made over the years, tiny baggies of lost baby teeth. Notes from friends who'd been in the places I'd been, carrying words of wisdom and understanding. Containers of things my mother sent when she was frantically cleaning out the house after my father passed away, when she was in this bizarre phase of purging and buying and purging and buying. Every bit she discarded or mailed to me was replaced and then some, so she never made any actual progress. Containers I haven't opened in over three years.

There is a stack of cards from when my father died, some of which I still haven't been able to read. The rough draft I hand wrote of the eulogy I gave at his funeral is in there. Notes from the people who came to the funeral tucked into my hands as they said their goodbyes. Boxes from his dental lab full of random pieces of who he was. A gift bag stuffed with pictures...

The bag of pictures.
Moments like this make me so insanely
grateful for the existence of digital photography.
God.

Leaking out little pieces of the things that happened, I am. Bit by bit, it comes out.

When he was in the last days, we all sensed it, him more than us. We followed his lead. We let him sleep when he needed, we made him all the margaritas he could have wanted. Ran to get whatever food sounded good to him. We rearranged furniture almost constantly and adapted medication schedules every single day. We knew the time would be soon, though I don't think any of us had any real idea of how close it was.

Mom, though, she was lost. Manic is really the only word that could describe it. She couldn't deal with the fact that he was dying or that she couldn't dictate how it was going to happen. Perhaps if we hadn't been there, things might have been different. I don't know and guessing about things like that does me no good.

She compulsively had to occupy her time in whatever way she saw fit, even if it wasn't productive or useful. Even if it was destructive.

In those last days, she became very destructive.

There are moments from that last week that I've tried to block from my memories because they were so awful.

This bag of pictures, part of it all.

At some point in the last month of his life, she decided that she needed to make a scrapbook. I'm not sure who it was for, honestly. He could not possibly have cared less. He was too busy dying to be bothered with anything like that, and he knew that he wouldn't be around to ever see anything completed anyway.

She said she was making it for him, but I think that's just how she rationalized it all.

We all knew she was doing it for herself. To stay busy.

In the process, she was making a huge mess almost constantly. Scraps of paper everywhere. Tables completely taken over by it all. I don't know how many of you have scrapbooked, but it's not a contained and tidy hobby. Combine that with a house full of medical equipment, people coming and going, a dying father, and the general chaos of all that she was...it wasn't pleasant.

We tried, oh how we tried, to just let her be. Clearly this was her coping mechanism, even if it didn't make any sense to any of us, and so we tried to let her be.

We tried. We tried until one night when we saw what she had begun to do in the construction of this scrapboook. She'd started to disassemble all the photo albums in the house and cut up old pictures.

She was cutting up wedding pictures and the only remaining copies of pictures of them from when they met in high school. She was cutting people out of pictures, destroying the images left from our childhoods. She was even, gasp, cutting polaroids. You can't cut polaroids without completely ruining them.

We all stood there, shaking our heads in disbelief.

And so when she went to bed that night, we sorted through what wasn't glued into the scrapbook already. We chose carefully, selecting the most important pictures to us, taking enough but not too much. We didn't want her to realize that some of the pictures were gone, but we had to try and salvage some of it. We couldn't let her ruin it all.

Those pictures. They've been sitting in that bag ever since.

I'm not even sure what I grabbed anymore. I have never been able to bring myself to look in the bag.

And now it is time.

I have to sort through it all, I can't avoid it anymore. The shelf that used to hide all these things from me is gone, and they're filling the space that I need to clear for the baby to come home.

I don't have a choice anymore.

I can't avoid it.

This has been bothering me since the weekend, bothering me more than I realized. Last night, several vivid dreams of everything that happened back then. It's coming back and I have to deal with it now.

Conscious avoidance has served me well thus far, but I can't do it anymore.

Confronting the past is awful sometimes, but right now it's my reality.

These are the things the living are left with when the dead are gone.

Wednesday, August 27, 2014

Post Partum Depression and Placenta Encapsulation

Yesterday, I finally asked the question that I've been meaning to ask my obgyn for months and had been putting off. I needed to know whether the hospital I will be delivering at releases placentas to patients. I need to know now so that I can get the things ready to take it with us and set up a person who will be processing it for me.

In the days leading up to the appointment, I had to actually tell my husband about my plans too, assuming that the hospital would let us take it home.

You should have seen his face. The abject horror.

I think maybe he thought I was going to make him eat it at first.

He's heard me talk about things, you guys. The dangers of living with a doula.


While I marvel at the magnificent wonder of the placentas I've seen, while to me they are easily the most fascinating organ that exists, while I could stare at them for hours with each opportunity I get to see them...he sees them as the same thing that most people see them as. A byproduct of birth that goes in a bowl over there, and then they throw it away or incinerate it or whatever they do with it because it's bloody and gross and looks like a slab of raw meat.

This is why I'm the doula and he isn't.

Incidentally, when I told him why I was having it done, he was 100% on board with the idea. I would process it myself, but I don't have all the necessary equipment here to do it.

Anyhow, I'm bringing the placenta home from the hospital, and I am having someone (not sure who yet, still working on that part) encapsulate it. Essentially, it is processed by drying it and grinding it into a powder that is then put into capsules that I will have to take as needed after delivery.

Every batch of capsules, necessarily specific to each mother/child combination.

I'm not frying it up in a pan or planting a tree or any of that stuff. I absolutely do not have any issues with anyone who does any of those things with theirs at all. I know women who have eaten them. I know quite a few women who still have theirs sitting in their freezers.

Placentas are not gross. They are ridiculously cool. End of story.

Let me tell you a little bit about them, and hopefully it'll be enough to turn some of you out there reading into true believers.

The placenta is the only organ that ever spontaneously arises. It has one goal and one goal alone, which is to connect one life to another. It doesn't actually belong to either the mother or the baby, it belongs to their union. Somehow our bodies figure all that out, and escort the placenta right on out shortly after birth barring any complications.

If you ever have occasion to attend a birth where you aren't the one delivering, ask to check out the placenta afterwards. I can promise you that it is way cooler than you think it is. Umbilical cords are just as awesome, and they come in all shapes, sizes and colors. A dear friend of mine delivered a child with a true knot in the cord, and we all gasped in the delivery room when we saw it, knowing how lucky she and the baby had been. A client of mine once had a twin gestation that ended with only one baby. The placenta, though, it held all the evidence we ever needed that there had once been two babies attached.

Fascinating.

The reasons for placenta encapsulation are a few. For my purposes, I am having it done in the hopes that it will help me to avoid and/or manage any symptoms of post partum depression. I have a history of developing the condition, and have chosen to be pro-active about it this time. I don't want to sit here and wait to see if it manifests, I want to know that I'm doing what I can to avoid it.

Placenta capsules can help increasing both the volume and quality of a mother's milk supply, can help ease the transition from pregnancy to motherhood. They are said to assist with pain relief and anxiety, to help rebalance hormone levels, help with physical recovery, reduce bleeding and more.

Many cultures around the world recognize these benefits far more than we tend to, and in most instances women will consume the placenta immediately after birth.

Encapsulation allows the benefits to be spread out over a longer period of time, on an as-needed basis.

In addition to trying this strategy, I'm also working on being a lot more open about my history. Part of that means telling all you guys that I've dealt with it before, that I'm afraid of it coming back this time, that if I start to sink into my hole, hopefully someone out there reading will pick up the subtle cues if I fail to admit it again.

Part of it means that my husband is totally aware of what is going on with me now. PPD was something I managed to keep from everyone, including him, for over a year. A flipping year. I fully anticipate that he'll be all up in my business this time around, mostly because he has learned the hard way just how stubborn and secretive I can be, and how dangerous that is.

Part of it means that I have a therapist all lined up in case I need to go there.

Part of it means that I have to talk about this stuff, not just with medical professionals, but with friends, with family, with other moms who've been to this dark nasty place.

Part of it means that I have to force myself to face it, because I know how bad it can get if I don't.

So, yeah...I'm bringing a baby and a big bag of human meat home from the hospital. On purpose. Then it's going to help me heal.

Don't make that face. 

Honest. As a doula, part of what I do is educate people, women in particular about the benefits of all this stuff. Our bodies are pretty freaking amazing and they can help in so many ways that we may not even know about because of societal biases against them.

Birth isn't supposed to be sterilized and clean and neat and tidy, even if we've been conditioned to believe that.

Birth is messy and real and bloody and gross.

It changes us, and it isn't something that ends the moment the baby is born. The postpartum period is as important as whatever happens before then. We need to come around, as a society, about this truth. We need to teach moms to take better care of themselves, and we need to start by doing it ourselves.

Maybe that means we encapsulate our placentas, stick them in the fridge and pull out a few on a rainy day.

Postpartum healing.

This time around, I'm going to kick it's ass.

Tuesday, August 26, 2014

Things That Piss Me Off Tuesday - the welfare drug testing, NFL bans and medical research edition

Seems like there is a lot to be pissed off about this week. Could just be me I guess.

I do generally avoid the internet during the weekends, and even with a few days of that, I still have a very long list.

I guess we should just get to it.


All The Wasted Money
It never ceases to amaze me that there are all these states filled with all these people who are hell bent on drug testing welfare applicants even when the evidence keeps coming back very clearly that it is a waste of money. 

These programs are failing miserably to reveal what those who advocate for them seem so sure they will...the testing isn't at all allowing programs to refuse aid to people on the basis of drug use. It's revealing that welfare applicants use drugs at a far lower rate than the general public and the amount being spent on the testing programs is vastly more than any savings that can be identified.

The naysayers are quick to find some fatal flaw with the programs. That people are cheating on the tests or lying or they're all smuggling in clean urine or whatever. Why? I don't know. I honestly think it is because people have become so convinced that those in need are mooching off the system and abusing it that they can't wrap their heads around the truth that might not be the case at all.

Are there people who abuse drugs on welfare? Of course there are. Are there people who abuse the welfare system? Of course there are. Are those people enough of a reason to humiliate every person who comes into the system? Hell no.

We'll forget for the moment all the constitutional arguments that render these testing systems illegal, we'll forget for the moment that the vast majority of adults on welfare are caring for hungry kids, we'll ignore the fact that many of the elected representatives pushing for these tests can't keep their own noses clean....let's just rely on assumptions that keep being proven incorrect to embarrass those in need. Sure. That makes sense. While we're at it, let's waste tons of money too.

Bangs.Head.On.Wall.

Profiling is a real thing.
The events in Ferguson and St. Louis have placed the issue of profiling and how race is handled by the police in the spotlight again. A story that I first saw a few days ago is picking up more traction now, and it's one that everyone who tries to claim that profiling doesn't happen needs to read.

Seriously, go read this.

How mental illness is handled (or not) by the police
There was a shooting in St. Louis that brought up not just profiling but how mental illness should be handled by police last week. If you've not seen the video, I have to tell you that it is tremendously disturbing. In it Kaijeme Powell is seen behaving erratically. He'd been stealing from a small store in the vicinity. Police showed up on scene, shot him to death and released statements about what happened. They initially said that he was coming towards them in a threatening way with a knife over his head and that he was within a couple feet when the shots were fired.

Then the video came out. It did not line up with that story at all. His behavior was unusual to say the least. His arms were not raised over his head. He was at least 6 feet away from the officers. They shot him ten times.

It seemed pretty clear to me that something was "off" about Powell. The unfortunate reality, though, is that in cases like this one, the police don't seem to be equipped to try and diffuse the situation without the use of lethal force. What happened to tasers or disarming suspects? Why are they just being killed?

The issue isn't something that is happening only in Missouri, either. It happens far more often than most people realize, mostly to young men, all over the country. It happened again in Kansas this week when police shot an unarmed white suicidal teenage boy 16 times.  

My personal opinion here, one that I don't believe anyone has to agree with, is that these incidents are being exacerbated by the militarization of the police. I have friends and family in law enforcement, many of them in the generation ahead of us. They were trained to use their voice as their first weapon. They were trained to take down suspects. They were trained to diffuse situations. They were trained that for every action taken by a potential suspect, there was probably a reason.

They weren't trained to shoot first and ask questions later. Some of them, with decades of experience, almost never drew weapons. Ever. Even working in some of the most violent areas of the country.

As a society, we need to figure out how to stop these gut reactions and start talking to people again. We need to diffuse volatile situations instead of making them worse...and it's not just the police I am talking about anymore.

There is absolutely a time and a place for police force. There are absolutely situations where there is no other option, but I refuse to believe that those times and places exist as often as we are seeing them.

Medical Research Funding
One of the unintentional side effects of the ice bucket challenge has been that it revealed the drastic cuts in federal funding to the NIH. Budgets have been slashed year after year. The ugly truth is that we'd need ice bucket challenges to be this successful constantly to even have any hope of making up for the amounts cut.

I shared a story about this harsh reality, and realized that I needed to write a little bit more about research funding because it is something that I don't think most people really understand. Some think that we can reasonably rely on the private sector and the goodwill of people like those involved in the ALS fundraiser to adequately fund medical research.

We can't, and I'll tell you why.

There are several reasons.

The first is that biotech companies, pharmaceutical companies, and all the related incarnations, are only going to bother doing research on conditions they have a chance to churn a profit from. Meaning, they want to make a profit because that is their ultimate goal. We may want to believe that they are do-gooders and want to cure disease to save the day, but it couldn't be further from the truth. They want to make a pill, preferably a really expensive pill that they can score a patent on, that they can sell to a lot of people and make a boatload of money on.

The profit incentive is what makes the industry go around, which is why it is so rare to see any research in the areas of rare disease. There aren't enough people with ALS or (insert any other rare disease here) for them to bother. So they don't. There has been ONE cancer medication approved for children in the last 30 years. ONE. There have been an abundance of drugs for all kinds of lifestyle issues and for conditions that people live for decades with, though.

Diabetes is one of the areas that hits home for me, because every time someone shares a story about possible cures, I read up on it. It's not usually a cure, but some new treatment or medication, possibly something that can buy T1 kids a few years at a time without insulin. It would be huge progress, but it's not a cure. Because no one has a financial incentive to find a cure. They have a financial incentive to manufacture new treatments and drugs for all the patients with these conditions because they make a fortune off of us caring for ourselves and our kids.

Remove the profit incentive, and you get essentially no research at all for most rare diseases, which is exactly why the federal government needs to do the underwriting of it. And, for a long time, the federal government did just that. They sponsor what is primarily known as basic research, or huge undertakings that have multiple applications. Think human genome project stuff...and there is a huge wealth of information as a result of that program, which is then made available to all those who want to take that basic research further to find treatments, discover causes, etc. It was an insanely expensive undertaking that no private company could have or would have ever underwritten...and if they had, they would have tried to protect proprietary rights to that information.

Pull that basic funding, and all that is left are the profit motivated conditions.

So, we get meds to grow longer eyelashes while people dying of ALS get nothing.

Before you get mad at anything about the ice bucket challenge, email your representative and tell them to go back to funding research. We ALL need the basic research to be funded adequately and we absolutely cannot rely on private industry to do it.

The NFL and it's assbackwardsness
Matt Prater, kicker for the Denver Broncos, was suspended by the league for four games this week. The reason? He violated their substance abuse policy...tenuously. He has a prior DUI and they found out he'd had a few beers on vacation. (oh! the horror!) Apparently, the powers that be wanted to suspend him for the entire season, but settled on four games as a compromise.

Prater is pissed, and rightfully so.

Most of the suspensions handed down so far this year have been for substance abuse violations, but most of which have to do with off field behavior, not use of banned performance enhancing ones. That's a whole new can of worms, and they just don't want to go there...

What has people like me the most upset right now, though, is the fact that Prater is being forced to sit for four games for reasons that don't actually seem to make that much sense. I mean, yeah, he's had problems in the past. He didn't this time. He was on vacation.

Meanwhile, Ray Rice was forced to sit only two games, in a suspension that actually generated MORE controversy when he was charged with domestic violence. Rice was seen on video dragging his then-girlfriend out of an elevator, arrested and charged.

Let's just make this clear.

Drinking a few beers on vacation is worse than beating your girlfriend.

Bangs head on wall again.

Monday, August 25, 2014

This Body of Mine

This body of mine, we've had some hard times together.

I wrote a post over the weekend, a short status about how people seem to have commented on "how big" I am throughout this pregnancy. How I shrug it off and laugh and pretend like it doesn't bother me. How I know that their words aren't intended as a criticism or commentary on me per se, but are based on whatever their observations are at that moment without whatever filter they'd ordinarily have.

Something about being pregnant makes people feel compelled to comment on things about you they never would otherwise. It's as though there is this flashing "OPEN" sign to the world inviting comments from everyone who sees you.

I have tried as much this time as I ever have to not take these words personally. For the most part, it has worked, I've been able to keep the words from working their way into the recesses of my brain and setting up camp. There have been times though that they have tapped into that long standing self doubt, the voices in my head that told me for years that my value as a person was contingent on a number on a scale.

I was anorexic. 

Technically, I still could be, although that probably doesn't make a whole lot of sense since I've never been thin. 

One of the greatest misconceptions about eating disorders is that they only happen to people who are already thin, or who become that way. There are all the people like me, who never achieved those unreasonable goals, but still starved ourselves in some attempt to get there. 

The other great misconception about eating disorders is that they have to do with food or exercise. The food and the exercise are a means to an end, not the root of the problem. They come from anxiety, from a feeling of needing to control something, anything about our lives. 

I still drift that way when things spin out of control. I've learned to catch myself when it happens. When I begin to welcome the gutteral pains, when I start skipping meals, when I push the food around my plate, when I'm just "too busy" to be bothered with eating, when I start obsessing about the number on the scale...that is when I know it's back. 

So, I'd suppose then that I wasn't anorexic. I still am, and probably forever will be, though it may not be active at any given time.

Like now. 

I will be 33 weeks pregnant this week. I'm doing a very delicate balancing walk on the thin ice of gestational diabetes. I have to be super disciplined about what I eat and when and how. I have to manage my medications and my other conditions and adapt and adjust with each day to make sure it all stays in check.

When you are pregnant, everyone assumes that you want to eat all the time. That you have cravings and can satiate them. That if you want to eat a piece of cake or four slices of delicious French bread, that you can. That it's a free pass to eat, to gain weight freely, to enjoy eating for once.

I can't. 

It doesn't even phase me though because I am so conditioned to food restrictions, even if they aren't self imposed at the moment. 

I can eat like a robot, a robot who dwells in this constant state of lingering hunger, never ever permitting myself to overeat because I can't. And I can do it because I have been anorexic. 

I'm well trained.

I have cravings, but I'm well equipped to ignore them. Pretending to not feel the grumbling in my stomach is something I've refined over the years.

People ask me all the time if it bothers me to have a diet this limited. They try to find me some kind of alternative or tell me it would be okay to just have one of whatever they want to feed me.

It doesn't phase me because I've been doing it for so long for a different reason. I don't want to even talk about food because it's not worth it to me. Nothing tastes good. Anything I'd ever want I can't have. And it doesn't even phase me.

It's a strange and twisted set of abilities and circumstances, I know.

It's with all of this that the words others say come into my ears and dwell in my mind. Sometimes I can fight them off, sometimes they linger and burrow.

Never mind that I will deliver this child at the lowest weight of any of my pregnancies. 

Never mind that my blood sugar is better controlled than it ever has been in the past.

Never mind that I haven't had trouble with swelling like in prior pregnancies.

Never mind that my blood pressure is perfect so far.

Never mind any of that.

Part of what is bothering me the most right now are the assumptions that my obgyn seems to be laboring under. She, maybe because it is what she sees in her practice, seems to be convinced that no matter how stable and well I am at this moment, that it's all set to go to hell and that it will and that she's certain about it and that she will be shown to be right. She's become trite about it, commenting on how much I've grown, except that the baby has only ever measured in the 50-60th percentile range from the beginning. 

It's as though she is almost hoping I deliver a gigantic baby or suffer some serious complications just so she can say I told you so

She wants me to doubt this body of mine, and I refuse.


I refuse.

This body of mine, it isn't perfect but it isn't broken.

This body of mine, it doesn't fit into our society's parameters of beauty.

This body of mine, it struggles sometimes.

This body of mine, it is working beautifully right now.

This body of mine, I'm taking the best care of it that I can.

This body of mine, has birthed four children and will soon welcome a fifth.

This body of mine, it is stretched and tested right now.

This body of mine, it's doing just fine.

This body of mine, it's doing what it is meant to do right at this moment in time.

This body of mine, it doesn't need your criticism.

This body of mine, I am celebrating it for all that it can do and has done.

This body of mine, we can't hear you.

I don't have much time left with this pregnancy. The days are passing quickly and soon it will have completed this, its last gestation. I will never be pregnant again. I will never have this opportunity again to sit and marvel at the movements in my striped and scarred abdomen. 

So just let me have this. 

Let me embrace the magic of this time without your harsh words. 

Let me enjoy these final days. 

Give me a chance to appreciate this body for all the amazing things it can do.

xo

Friday, August 22, 2014

Summer School of Rock - Guns and Roses

There are several albums in the world of music that belong firmly in my personal soundtrack, the running background music of my life thus far.

Appetite for Destruction is one of them, without doubt.

Oh, hi. We're doing the Summer School of Rock today and Guns and Roses are up.

I have a special place in my heart for them because they hit the scene at the exact time that music started to speak to me as more than just notes and words, but as stories told, heartbreak lived, angst documented. Axl was edgy, he was raw, he was the consummate bad boy.


He was pissed. He was angry. He was passionate. He was sexy as hell. And it all worked. The guy was clearly meant to be a front man for a rock band. Having Slash beside him only helped.

That man, a single spotlight, a guitar. Magic.

The band originally formed in 1985 in L.A. with Duff McKagan on bass, Izzy Stradlin on rhythm guitar and Steven Adler on drums. Slash, of course, rocked the lead guitar and delivered some of the most easily recognized solos in music history.

They've gone through a great many lineup changes, and as of today the only remaining original member is Axl.

That first album, Appetite of Destruction, contained their biggest single song ever, Sweet Child O'Mine. They arrived on the scene at a time when rock music had been dominated by hair bands, when pop music was all the rage, and are credited with helping to reestablish a pure rock sound again.


The album, the whole damn album, was just so good. Here. Get sucked into the vortex with me.


They followed up with G N' R Lies in 1988, which went to 2 on the Billboard charts.  That album didn't churn out as many singles, but did contain one of my personal favorites of theirs, Patience. You know, one of those songs that I still find myself coming back to at times when I need to hear it again.


Use Your Illusion I and II came out in 1991, immediately hitting the top of the charts. We all had these albums, right??? I think Metallica's Black Album and this duo were the first CDs I ever purchased.

The biggest hits from those albums were Live and Let Die and November Rain, the video for which became a piece of our culture on its own merits. And yeah, you have to watch the entire thing. The whole video. The shortened radio edit version just doesn't count.


The last album recorded with Slash and Duff was The Spaghetti Incident in 1993. It was not a wild commercial success, filled with covers and signaled the end of the band's greatest days. Chinese Democracy was released since then. They'd never again see the raging hits of their first years.

In their prime, they were controversial and made news all the time. They wrote songs about topics that pushed boundaries. They managed to piss off just about everyone at one point or another, which comes with the territory when you have loud, opinionated and outspoken members. They've been accused of being racist, of being homophobic and more. They've had serious struggles with drug abuse, with violence at shows, with showing up late, with rants and more. Axl is well known for carrying on about critics on stage.

Slash's departure was a volatile one, and Axl still refuses to deal with him at all. The tension is so bad that when the band was inducted into the Rock and Roll Hall of Fame (in the first year of eligibility) in 2012, Axl refused to attend. Slash, Duff, Adler and later members Gilby Clarke and Matt Sorum were there for the ceremony.

They've never been short on passion or drama, that's for sure.

I suppose that we can always hope that Axl and Slash will at some point agree to be in the same vicinity of each other in the future, but I wouldn't hold my breath. Lightning doesn't strike the same spot twice, so they say.

~~~~~~~~~~~~~~~~~~~~

The other bands and artists profiled already, in no particular order.

Thursday, August 21, 2014

When Your Friends Parent Differently Than You Do

I was asked to write about this topic a couple of weeks ago, and I've been tossing it around in my head ever since. In fact, it is something that I have toyed with writing about for years but thus far avoided...and the reason should be fairly obvious, at least to all my fellow non-anonymous writers out there.

People take whatever we say personally, even (and seemingly especially) when it isn't about them.

In the years that I have been doing this, there have been more than a few occasions where people have been personally insulted by something I wrote. Not a single one of those times was anything I wrote aimed at them, directed at them or had anything to do with them. Didn't matter.

I've been called out on Facebook.

I've been emailed, texted, phoned.

I've even had people yell at me in person.

I have, quite honestly, lost friends over things like this.

Consequently, I tend to tread lightly.

This topic, though, is one that I find myself coming back to over and over again even though I know it will be hard to write about and will probably come with some consequences. I keep coming back to it for the same reason that I was asked to write about it...because it is something that we all will have to deal with as parents eventually, multiple times throughout the years we are parenting our children.

It's just part of the deal, and it's one that likely started back before our children were even born.

As soon as you tell the world you are trying to get pregnant, you start to get advice from other people, the vast majority of which is unsolicited, much of which is premised with the "I would never..." statements.

There are a lot of "I would nevers" in parenting that people really and truly believe exist, until they suddenly see themselves confronted with the particular situation they were so sure about how they would handle. Then reality comes along, slaps you upside the head and tells you that you really had no clue what you were talking about back then in the land of hypotheticals.

It's not just the hypotheticals of course, because once you have your kids, there are actual issues to deal with. Constantly.

Unless you are going to homeschool your children and wholly prevent them from having any interaction with the outside world, eventually you are going to have to deal with the fact that the world is full of other kids and their parents, and they all operate just a little bit differently than you do.

Some more than a little bit.

When your kids are young enough that you can control all the elements that go into the exposure to other kids and parents, it's simpler. You can scoop them up from the park or the playdate or whatever, say to them whatever you want about whatever transpired and go on with your day.

If a parent is a yeller and you're not down with that, you can just leave.

If a parent doesn't care if their kid is stealing you kid's toys or hitting your kid, you can just leave.

If a parent is a spanker and you choose not to do that, you can distract your children and just leave.

You can just leave.

There is a TON of judgment in the pre-preschool set about just about every aspect of parenting these days. Everyone seems to care if you are breastfeeding or co-sleeping or making your own baby food or vegan or cloth diapering. Everyone seems to believe that whatever they are doing is best or better or superior in some way. I saw it in mom playdate groups when my oldest was a baby 13 years ago, and I can't imagine it has gotten better. In fact, I am sure it is worse than it ever was.

You name the issue and someone will argue with you about it. Car seats, bedtimes, meals, literally anything.

In those early years, though, it's the adults having the issues for the most part, not the kids and the adults and the interaction between them and other people's children that you have to worry about.

Once they go to school, it's all on the table. All of it.

Your kids are going to be around other parents when you are not there. They're going to start having friends over and they're going to start going to other people's houses to play and you've got to start paying more attention.
Yeah, we're those people.
The truth is that there are as many parenting types as there are families in the world. There are all these cute surveys online that seek to categorize us as the "strict" parent or the "fun" parent, but the reality is that there are so many more variations than could ever be made so simple.

As your kids get older, they will spend more and more time away from you, more and more time being exposed to the parenting styles of other people.

Some of those other parents will be people you don't know very well. Some of them will be your friends, whether you were friends before kids or because of them. Some of them will be neighbors. Some of them will be family.

The dynamics of each parent relationship, vastly different.

For me personally, I'm sure I would be categorized mostly as a strict parent.

When my kids have spent time with what I feel are overly permissive parents, I've placed limits on the times, locations, experiences they are allowed to have under the supervision of the other adults. I'll be the bad guy. I'm okay with that. My kids know they are to follow certain rules, be held to certain expectations, regardless of who they are with. My kids know that I don't tend to negotiate (though, god bless them, they still try) . The argument of so and so's parents let them do so and so has never once worked. And it never will.

When my kids have spent time with parents who are super competitive, I've had to work pretty hard to remind them that the only thing that matters at the end of the day is whether they tried their best. I set high standards for my kids, sure...but I don't fault them if they can't always perform at a level that I think they should. Certainly not if they fail to live up to the expectations of other people. This especially comes in once you have sports and coaches and other team parents to deal with.

When my kids have dealt with other kids who are rude or mean or bullying my kids or others, my approach has varied depending on how well I know the parents. Mostly, I stopped telling my kids they "had to be friends with everyone" a long time ago, even though the schools seem to push that concept on them these days. Not everyone is going to be friends, and some people are just mean. Period. It's better to avoid them than to force any interaction. Besides which, the kids who are mean quite often have parents who don't see it. Many of them think their kids can do no wrong, and have no clue how their little angels behave when mom isn't looking. I've always said that I'd prefer my kids be rotten for me than to do it out there in the world. They can frustrate me because I can deal with it, but they must be kind and considerate and well mannered to the rest of the people out there. Not everyone parents that way, and I've been pretty damn honest with my kids about that truth.

Most of the rest of the universe of conflicts, I try to let go. If people routinely feed their kids junk food or let them stay up super late or whatever, I just remind my kids that we don't work like that here. I've told the oldest he isn't allowed to play violent video games, regardless of where he is and what someone else's parents allow, and you know what? He doesn't.

I'm strict, sure, but I don't hover. I give my kids long leashes. I let them go do things. They have phones, but they don't have data plans. They have internet access at home and I don't regulate what they do too much, but you can bet your sweet ass I check up on the sites they are visiting and I know exactly what they are searching. I expect them to behave the way they are expected to behave at home, regardless of where they are and who they are with.

I am not delusional. If something happens, I don't assume they are innocent and being wrongly accused. I assume the opposite, in fact. I don't call their teachers and try to bail them out of missed assignments. I don't argue about grades. Do I know parents that do? Absolutely. I don't happen to think they are doing their kids any favors, but that's their prerogative.

My kids don't get whatever they want. They have to work around the house. Do I know kids that are teenagers and still wholly catered to by their parents, spoiled constantly? Sure. I don't work that way and my kids know it. They might whine about not having the newest phone or clothes or whatever, but it is what it is. I'm not changing how I do things because a 3rd grader they know has an iphone.

We don't keep up with the Joneses. We don't parent like them either.

Believe it or not, we haven't had too many huge conflicts. There have been a few, yes, and those that have happened have been fairly significant ones that resulted in breaking ties with the families at issue. Every single one of those situations had to do with threats of physical harm or emotional abuse that was actually happening to my children that the parents refused to see or handle.

Honestly though, people like that weren't real friends anyway...and their kids sure as hell weren't friends to my kids.

Sometimes being a parent means that you have to cut those ties, no matter how much history you have with people.

I'm okay with that...but then again, I am a mean mom and everyone knows it. ;)

Wednesday, August 20, 2014

Mental Illness - are we really in control or are we at the mercy of our minds?

It's been a rough few weeks in the news when it comes to mental health stories, and anyone out there who relates in any way to the demons Robin Williams struggled with has felt it.

The reason his death has affected, and is still affecting so many of us is a simple one really...it could be us.

Chew on that one for a while, nonbelievers.

There is so much rhetoric and argument in the wake of a high profile death, there are always those who chastise those who mourn, there are always those who question the motivations of the person involved, and there is always a vast abundance of people speaking openly about something that they so clearly don't understand.

For a few days, I had to make a conscious decision to step back from the updates and the news and the blogs and the rants. I had to make self preservation a priority for myself, which is something that I came to learn the hard way as I've walked the path I have walked in my life. Stories like his are so overwhelming to some of us that it is difficult if not impossible to shut it all out.

Our minds don't work like those who enjoy the luxury of complete mental balance and stability. We can't just shut off the computer or television and be done with something. We can't just distract ourselves and ignore that looming thing over there.

It follows us. It gets into our heads. It toys with us.

It all was really starting to get to me...so I did what I had to do, which is essentially to remove myself from wifi connections as much as humanly possible, throw as many balls up into the air as I could to try and distract myself and do anything within my power to think about something, anything else.

It isn't easy, though there are a great many people out there who believe it should be.

Which brings me to this post here today. The one that has rattled around in my brain for days now. The one that I feel compelled to write even though I have no answers relevant even for myself, let alone anyone else. The question is simple and uncomplicated, the answer anything but that.

Are we, the people who struggle with mental illness at the mercy of those diseases or do we have a choice?

I know, right?

Talk about a loaded question...

What made me really start to think about this were all the people who made statements about how Williams chose to commit suicide. I don't know that anything that happens in those darkest moments could legitimately be construed as involving actual choice, if I'm being honest.

http://www.gratisography.com/
I've been at the mercy of my thoughts, wholly incapable of controlling them at times, and it is absolutely terrifying. I can't say with any degree of certainty that decisions I made in those moments were rational ones. They were anything but. They weren't based in any realistic perception of my circumstances, they weren't thought out, they weren't any of that. They were irrational. Period.

Post partum depression soundly kicked my ass and taught me some lessons I never wanted to learn. I hid it for over a year before I just couldn't do it anymore, flirting dangerously with psychosis at times. Ultimately, I did get help and admitting I needed it was what pulled me out of that place...but not everyone gets help, and even those who do aren't always saved in time. Some mothers kill their children. Some mothers kill themselves.

Is any of that a choice, per se? I don't personally think so, only because I've been there myself. 

When I have had panic attacks, reason and rationality fly out the window and I go into full blown fight or flight mode. I'm focused, quite literally, just on breathing each breath and then the next and then the next. There is no amount of education or help or focusing or whatever that will get me out of it. Medication may work, though it just knocks me out. I have to ride it out for however long it takes, no other option.

Is any of that a choice, per se? I don't personally think so, only because I've been there myself.

When PTSD set up residence in my brain, it screwed with my life in almost every way imaginable. The triggers, the nightmares, the insomnia, the irritability, the paranoia. All of it affected me every single moment of every single day. I couldn't make any of it go away on my own, lord knows I tried. Trying just made it worse.

Is any of that a choice, per se? I don't personally think so, only because I've been there myself.

The idea that we are at the mercy of these conditions, at least at times, is unsettling to say the least. We live in a society that assumes that we are all in control of ourselves at all times. We dwell in a health care system dominated by HIPAA, a law that presumes that we are. We are so focused on independence as a society, so very threatened by the idea of that independence being threatened, that people are reluctant to seek help far too often because of the possibility that any of that could be jeopardized.

In my own situations, I made choices that helped me. I sought help for PPD. I sought medication for the panic attacks and have worked to find ways to manage my anxiety in the hopes of avoiding them. I deliberately sought specific therapy to work through my PTSD. I made choices. I had choices.

Those choices did not, by the way, cure the things wrong with me. They enabled me to live a semi-normal life again. A life with them, but not dominated by them.

Which is the best that we, the people who struggle with mental illness, can ever really hope for. We can hope to quiet the doubt and the shame and the self talk, we can hope to be functional, we can seek therapy and medications to help that process...but we can't ever just make it go away.

We can't.

No matter how hard we try, no matter how much we will it to be so. No matter how badly we want it, how much we want to be better for other people, be better for ourselves.

We can find balance, we can manage things to whatever degree we are capable, but it's always there.

In any discussion about mental illness like this one, I always come back to the parallels with conditions of the physical being, those widely recognized and accepted by not just the medical community, but by society in general.

When a cancer patient is given a terminal diagnosis, we don't tell them to just cheer up and things will get better. No. We understand that these are the cards they have been dealt.

When a person with diabetes struggles to control their blood sugar, we can offer encouragement to them in that fight, but we know that no matter how hard they try, it will never go away.

When a person is diagnosed with multiple sclerosis, we don't encourage them to suck it up and just make the best of their situation, we don't question the legitimacy of their diagnosis.

But it happens every single day with mental illness.

And it needs to stop.

My name is Kelly. I am a writer, a wife, a mother. I am wandering around this planet without my parents now. I am intelligent and articulate and a complete goofball. I am a doula and a photographer. I have endured post partum depression, anxiety and PTSD, but they do not define me any more than any of the rest of the things about me do.

I am a person, not a diagnosis. I am worthy of support and love and patience and understanding. I am deserving of a health care system that cares as much about my brain as the rest of my body, and I will fight for a society that does just that for as long as I live.

Tuesday, August 19, 2014

Things That Piss Me Off Tuesday - the there's a lot pissing me off this week edition

Quick, before I start typing, everyone turn around counterclockwise and chant Beetlejuice. Or something. I got the blue screen of death yesterday and though my computer appears to be working at the moment, I have no idea if it will continue to do so. Let's just hope.

Technology and I don't get along. Our disaffection for one another is not anything new, mind you, but it is pretty much a constant source of frustration in my life. There's a lot to cover this week, so I'll just get right to it. I am covering Ferguson today for Lefty Pop, please make sure to check out that piece. I'm analyzing the legitimacy of police authority and how it's all gone terribly wrong there. 


The ALS Challenge and all the drama about it
I'm going to do this quick and dirty style, partially because I have a lot to say, and partially because I have a sneaking suspicion that this is just one of those things that people are destined to argue about. Ready?

Wait, first, I have to do some education because that's how I roll. ALS stands for Amyotrophic Lateral Sclerosis, a degenerative nerve disease. It affects the brain, spinal cord and all nerves in the body. It eventually leads to paralysis and death. There is no cure. Life expectancy from the time of diagnosis is usually 2-5 years. About 5,000 people will be diagnosed with ALS this year in the United States.

  • People are more likely to donate to charity if they are getting something in return. That something doesn't necessarily have to be anything tangible like a coffee mug or license plate frame...it can be likes on Facebook. Should people just donate and skip the stunt? Maybe. Maybe not. Those who say it's a waste of water, time, money, whatever...clearly haven't ever attended a charity event like a golf tournament or a gala. Even the super wealthy give much more if they get something in return. This really isn't that different in some respects.
  • This movement has done wonders to raise awareness for ALS, a horrible disease that has taken people from those I love. Awareness is never a bad thing, particularly in the world of rare diseases.
  • This movement has raised a boatload of money for ALS research, which is huge. There aren't many treatments at all, there is no cure and more research is needed.
  • Whoever thought this up was basically a fundraising genius, and I can promise you that the rare disease community in particular is envious, trying to figure out something to do like this that can reach as many people. I'd give anything for Type 1 Diabetes to get this kind of visibility.
  • People are wasting water doing it, yes....but water gets wasted in countless other ways every single day in this country and most people don't complain about it. If you're gonna dump some on your head, stand on the grass. Two birds, one stone. Boom. If you're gonna whine about water in this case, go protest the water usage by golf courses in Vegas first. Or swimming pool owners. Or long shower takers. Or chronic car washers. Or whatever.
  • It's entirely possible that many of those doing it aren't actually donating to the cause, but still believe that dumping ice water on their heads is a good cause. If it increases awareness, it is. Honest. Those who can should donate as well, but the act of spreading information about a disease like this is a good thing in and of itself.
  • The whole calling people out thing is a little bit annoying for a few reasons. First, not everyone can donate. Second, not everyone can or should be dumping ice water on their heads. Third, plenty of people have devoted their extra money to charities already, have another cause close to their hearts, and that is okay. What isn't cool is publicly shaming those who don't dump water on their heads or donate. I'm sure they have their reasons, so let's just leave it at that, okay?
It's super hard to get mad at this. 


If you don't need a cold shower of your own after that, I'm not sure we can still be friends. Just throw some ice cubes on top and give a few bucks to research and we'll call it good. By the way, you are welcome.



Let's not get distracted.
It was revealed late last week that Robin Williams was in the early stages of Parkinson's disease, speaking of rare diseases. Parkinson's is another progressive neurological disease, this one affecting movement. Tremors are the common visible symptom, but it also causes stiffness and difficulty in movement. It can be treated with medication to reduce symptoms. There is no cure. It is related to, exacerbates and may cause significant troubles in other areas, ranging from sleep deprivation to depression and more.

The medications used to treat the symptoms of Parkinson's all bring their own sets of side effects as well, some of which can trigger or worsen depression.

What some are afraid of happening in this case is that this revelation that Williams stuggled with this disease will become the fall guy for his depression and suicide, that it will explain away what happened that night. Though it most likely was a factor, it is but one factor involved here.

Williams' struggles with mental illness predate his struggles with Parkinson's. Parkinson's may have absolutely worsened his personal situation, without doubt, but it is not the simply packaged answer that many are looking for it to be.

Let's not get distracted here. Let's not for one moment believe that because he had something else in addition that we can place less importance on the conversations that need to happen about mental health.

Let's keep talking about the hard stuff. Please.

Diabetes is a fucker
Oops, I let the swears out. My bad.

Sorry. I just spent all day yesterday dealing with it. I thought I had everything together for school to begin, not realizing that I neglected to pick up an extra meter to leave at school. Nothing like a huge thing to overlook on the first day of school, right??? Now that Little Boy is in school full time, he needs to be tested at school...which means I have a bunch of hoops to jump through, papers to file, letters to write, conversations to have.

And, ultimately, it means that I have to place my trust in the hands of other people to manage this condition in a newly six year old boy.

Terrifying isn't really sufficient a word to describe it all.

Fortunately, none of this seems to phase the above mentioned newly six year old boy.

There is something else that I feel compelled to rant about regarding diabetes though, and it's the story in the news about the drive in theater owner who kicked a teenager with Type 1 diabetes out for bringing in food.

The kicker??? The owner of the drive in is a pediatrician.

I so wish I was kidding.

Sure, I get the profit motive here and the right of a business owner to refuse to serve anyone and all that jazz. I get that he really really really wants to sell his overpriced popcorn and candy to the captive audience. I get it.

But seriously??? If anyone should know better than to boot a T1 kid, it's a pediatrician....except for the harsh reality that those of us who deal with this every day live that almost no one (even doctors) seems to understand.

That reality?

No one understands. Period.

Unless you have to take a mental inventory every single time you leave your house to make sure that you have a meter and strips and lancets and insulin and fast acting carbs, not just out of habit, but because YOU NEED THEM TO SURVIVE, you just don't get it. Even doctors don't get it unless they live it.

Frankly, I'm a little surprised that he did it, and he may have to deal with legal consequences as a result. There is absolutely an argument to be made here that diabetics should be permitted to bring whatever they might need with them wherever they go, regardless of whether there is a snack bar or not. This isn't about a kid trying to pull a fast one on a theater owner, this is about survival.

Get the fuck over yourself, Dr. Theater Owner. I hope his family comes after you for an ADA violation.

Monday, August 18, 2014

To my kids, at the beginning of the school year...

I started writing these out a while back, mostly as a way to document the life changes for my children, but also as an homage to what my blog used to be.

This here blog didn't start out with legal analysis and rants and medical information and all that. Nope. It started off with mundane stories about my family. Of course, back then, the only people reading it were the friends and family members far away. It was a way to keep them up to date on everything.

Then I found my voice. Gradually, I wrote about the kids less and less, in many ways intentionally. My most important job has to always be mom, not writer as far as they are concerned. As a result, I am pretty deliberate about what I share about them.

There are a lot of changes happening in our household this year, even more just on the horizon. These are the things I wish for them this year.

To The Oldest
You are starting 8th grade tomorrow morning, which doesn't even seem possible. We'll be picking out a high school in a couple months and I ask myself all the time how this happened. You were just getting on the bus for Kindergarten, I swear.

This is your last year to goof off before it all starts to count. Do it at least a little bit, but not too much. Please start writing stuff down, or if that won't work, find some kind of organization system that makes sense to you. No one likes deadlines, but they're going to start to matter, and this world doesn't usually care how capable you are, how interesting you are, how intelligent you are or how talented you are....they need you to show them in exactly the manner they demand it.


Be passionate about the things you love, but get the rest of your work done even if you don't love it. Try new things. This year is a new blank page of opportunities, so find something new. Sleep in all the days that you can, try not to scowl at me too badly on the others.

You are learning US History this year. I hope, hope, hope that your teacher will teach you all the things you should know about history, not just the sanitized version history book publishers tend to prefer. Trust that if she won't, I will. Perfect the five paragraph essay, because lord knows you're going to need it in high school.

Stay goofy. Stay genuine. Stay kind. We like you this way.

To Freckles
As I am writing this, you are swimming in the bigger pond for the first time. Middle school. I know you and I know how you are, and I know that there are about a thousand butterflies in your stomach right now, but you can do this. And you will. And it will be amazing.

Just like you.

You know how when you were playing soccer and there would always be that wave of worry that would sink in right before a practice or a game and you'd tell me over and over about how you didn't want to go and you hated it and then your tummy would hurt and then everything would hurt? Remember that? Remember how after you went to that practice or that game we couldn't wipe the smile off of your face? And how YOU LOVED SOCCER even though you hated it just an hour earlier? Remember that?


This entire year is going to be like that. I promise.

This year will be filled with so many new opportunities, new chances, new friends and new experiences. Take chances, meet new people, find things that interest you. Sometimes those might be things that none of your friends are interested in, and that is okay. You'll find people who share your passions even if they don't happen to be people you already know.

Stay interesting. Stay strange. Stay focused. Stay organized.

Don't let anyone change you, you're pretty awesome as is.

To Mini Me
My little ball of what ifs, my little worrier, my tiny firecracker. This year is one that should be a bit calmer, at least as far as school is concerned. That fire in your heart for reading has finally been lit, and now we just have to keep it going. I think we found a strategy that works, and if it takes me reading all the things after you do and seeing every movie ever made about a book, then that's just what we will do.

You're back with some of your besties from years ago this time around and I hope that brings you some calm. You don't love change, but then most people don't I suppose. This is the first year that you'll be the big sister at school, the first one without someone who came before you still around. I know that might seem overwhelming and scary in some ways, but in others it is amazing.


You just get to be you now, not so and so's little sister. Isn't that awesome?

I think so. You're growing up so fast, urging it along even faster than it is already going. If it were up to you, you'd already be in high school, I think. You're so much like me in that way. When I was your age, people always told me to enjoy being a kid. I'll say the same to you knowing that it'll likely never happen, that you'll always be looking ahead...but try, even if it's just sometimes, to remember that you're only 9.

Run as fast as you can, jump and throw and swing on the monkey bars. Don't worry about who is friends with who today, because you already know that tomorrow it will all change anyway.

Just be you. Just worry about you. Just remember to be a kid sometimes. We love you.

To Little Boy
Oh, child. You make me worry. You make me crazy. You make me laugh. You terrify me and amuse me. I know that you'll be okay even when you aren't, honestly I do.

You have so much more to deal with than your siblings ever did at this age, but it doesn't even seem to phase you. You have to go through speech therapy, and it's never bothered you at all. The fact that your speech therapist is pretty gorgeous doesn't hurt either, I suppose. (shhhh, I won't say anything)


I brought an extra meter into the nurse's office today, hating every step I took on the way there. I hate this disease. I hate that you have to worry about it. I hate that I have to negotiate every little detail about how to take care of you with a bunch of other people and that I have to trust them to do it.

Then there is you. You just walked in, asked for the poker and checked your blood sugar without any issue. You're the calm here, the center, the strongest and bravest little boy I know, and to you it's all irrelevant. This is just who you are.

I think this will be a big year for you, not just because of all that silly diabetes nonsense, but because of all the things you care about. Reading. Friends. Sports. You love, love, love school...almost as much as you love to spend time with your classmates.

Keep that passion for learning. Keep pushing yourself. Keep wearing your heart on your sleeve.

We'll worry about the rest.

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