Of Leeches and Heroes

I get a lot of emails. Especially now that I’ve gone public with my illness and the hardship it has brought on my family.

Some emails lift my spirits in ways I can’t explain. Others who understand how difficult it is to manage a chronic illness and a family, yet keep on laughing

Some emails break my heart. The stories upon stories of just what getting sick can do to one household. It is why I fight so hard for Obamacare. It is why I make sure I scream from the rooftops that those of us who need things like assurances that our pre-existing conditions won’t be taken into account when we apply for insurance are heard.

Because it’s not a joke when we say it really is a matter of life and death. It is not rhetoric. 

We worked hard to turn the Affordable Care Act into law. No, it’s not perfect. It is a start. We will NOT turn back. The current debate in Congress over Food Stamps? We’re not turning back there either, because in case you haven’t noticed…many of us who have gotten sick now need help due to the absolute disaster of a healthcare system we have in this country. We are drowning in medical debt at my house and we have great insurance.

This is just one of the many emails, just one of the many stories. This is your neighbor, your friend, your family.

Read what was sent to me below and then go to HealthCare.Gov to learn more.

You will not DEFUND ME. You will not DEFUND US.

-Erin

I Am a Leech

by Anonymous 

I may have an auto-immune disease. I am a woman. I am also poor. My insurance is supplied by the state. I have five children – they are also using state funded insurance. I get food stamps. According to the GOP, I and my family are leeches.

Let me tell you a little something about living as a leech.

For years I worked as a nurse aide, then after an injury at work I began working as a freelance writer and blogger. My husband worked in the rental industry and worked other jobs. His last job involved leaving home before six in the morning and getting back after eleven in the evening. I was pregnant with our first son. We did not have a lot. We made due, like everyone else. Our oldest daughter has autism and we worked to place her in the best programs possible.

My husband was injured on the job while working in the rental industry, but he kept working until jobs began to dry up during the Great Recession. I kept writing, bringing in extra to try to make those ends meet. He worked with a friend painting homes, then one day he came home with his injured knee swollen and something bulging from the side. That was the end of being able to walk without pain or swelling for him.

I took on as much work as possible. Trying to make ends meet when clients want to pay you one dollar for five hundred words? That burns you out. Non-paying clients, low paying clients, and then advertisements that end up being a spam scam? Yeah.

For years we made due with very little. We refused to ask for food stamps, no matter how low the pantry was. He and I went without eating to ensure the children always ate. One day I began falling ill with mysterious symptoms. The day I couldn’t lift my fingers to type was the day I went to the emergency room. The doctor there told me she believed I could have Lupus.

At the time I had no insurance. No primary doctor to fall back on. No tests to go for. Nothing. We saved our tax return and moved out of the city, I hoped living in the country would help my symptoms and give my children a better place to grow. After almost a year we decided we would need to apply for at least Medicaid and food stamps (SNAP). We qualified.

Let me tell you, if you think that SNAP recipients are just handed a huge amount, you’re wrong. We qualified for $450 a month. That is for seven people. We utilize meals plans, careful shopping, and coupons in order to make it last. This leeching family spends more time ensuring that our benefits are well spent than most people ever imagined. Processed food? No thank you. Our meals are made from scratch. If my children eat cookies and cinnamon rolls, they’re homemade.

It bothers me to accept assistance. Even though I’ve paid taxes and should be thankful for this safety net. It bothers me to the point that I hide my EBT card in a way that it cannot be seen when paying for food. Even though our cart is full of nutritious food for our children. Because no matter what you do, you’re bad when buying with food stamps.

Don’t believe me? Look at arguments online. If a food stamp user spends money on ‘junk’, they’re bad. Anything that is considered sugary or processed is wrong. But wait, if you spend your benefits on natural, healthy foods like fruit and vegetables, you’re still shoving your benefits in people’s faces by buying what they can’t or won’t. Honest – I could buy nothing but flour, sugar, vegetables, and everything else to make meals from scratch but the moment someone saw the one six pack of Pepsi in my cart? I’m a Food Stamp Queen.

What does my health have to do with this? Well, we applied because I was having a hard time writing. Heck, I was having a hard time walking from my bedroom to the kitchen for morning coffee. I was in severe pain. Imagine your bones burning. Literally burning away inside of you. Your muscles weak and shaking from the sheer exhaustion just getting out of bed caused. Typos all over your articles because lifting your fingers was too much.

That’s why we have these ‘benefits’. I’m smiling as I write the word benefit because, really, there are people that believe there is a benefit to being sick and poor. The reality is that when you have state insurance your doctor runs only the basic tests. If those tests show nothing severe, you’re not sick. You’re sent home and told to take some ibuprofen and cut your stress levels. Have a knee with severe dislocation and torn, deteriorated cartilage? Bone worn down until the grinding is audible to anyone listening?

Go home and take some ibuprofen.

This is my benefit. This is my husband’s benefit. Being stared at as if we are criminals, made to feel ashamed for making sure our children are fed. Not allowed more extensive tests to help us get better so we can get off of the system. To top that off, because we stooped to ask for help, there are many that would deny us the right to health care at all. Thanks to ObamaCare we can have the most basic of care, but there are those that would deny us this. Why? Because the sick and poor do not deserve to exist. My benefits do not pay my bills fully, because of this my propane company is pocketing a big $87 a month that they refuse to put toward out back bill and won’t deliver anything else until all $1800 is paid. This is after paying them faithfully every month for a year – they misquoted us on the full amount, but it’s still our problem.

We don’t have a car, social services refuses to help with transportation, even though that’s the law. Shortage of funds in our county. The bus route in our rural area was cut, so that’s out of the question. Without transportation to social service mandated tests or reporting, we will be ‘sanctioned’. Even with all of these so-called ‘benefits’ we are worse off than before. We can’t afford to pull out of the system but we can’t afford to stay in it. The stress from it causes my symptoms to rear their ugly head and that causes more stress until I can’t work.

Every time my body decides to flare up symptoms, some part of my body is being attacked. It is being damaged. Without the tests and care to determine the cause, the damage progresses. Without medication to control this, I will die early. My family will be left without a mother. A mother that loves them enough to work through the pain, the exhaustion, and to bite back her pride enough to apply for assistance. My husband will still be disabled and without me, he will need to find a way to supply their needs, even if that means being a prisoner of the system. Being shamed for swallowing his own pride.

We are sick. We are poor. We are leeches. Yet still, we fight. We fight to find work. To keep our family above water. We will continue to do so until our bodies are broken. Why? Because that is what an American does. Regardless of your party – you fight to survive. If that means asking for help when you’re broken, so be it.

I am a leech. But, I will live until I die whether anyone likes it or not.

Today is That Day

Today is one of those days you have a hard time explaining the world to your children.

Today is will always remember two men who didn’t ask questions, didn’t blink…but did their jobs for me when I called on them and asked. Even though they were in grave danger and ended up running for their lives. Yet there they were, doing what they do best in the midst of the chaos and informing the world of what they saw.

Those two men will forever have my admiration. They both choose to remember today in their own way and for every year that has passed I’ve never tried to push a celebration of their lives or shower them with public accolades. I’m just forever glad they are alive and forever glad they tolerated my calls during the horror.

Today is also the day I, somewhat like the Grinch, had a body part grow three sizes that day. Except it was my spine. Never again did I just do what I was told. Or take an assignment and go where I was told. Upon reflection of the day’s events I should have said no to sitting below the two tallest buildings in Los Angeles, awaiting their destruction so I could report from the middle of it…if I survived.

Today is the day I turned my career from a young reporter, to an investigative reporter to be reckoned with in one of the largest cities in our nation. I’m proud to have forced the city to spend millions to shore up security at our ports and our local water supply and proud to have the awards and special momento (given to my news director) as a reminder. May that lock  sit on her desk forever.

Today changed so many lives forever, not all are as kind as mine. Today I am grateful to still have so many of you in my life who nearly were gone forever and my heart still aches for those lost.

Today is the day I use up a lot of my wishes, the same as I did so many years ago.

Lunchtime love

Living with Lupus: Reclaiming Me

Taking back my life from Lupus is no easy task.

But I’m doing it. Slowly. Piece by piece. Part by part. Brick by brick.

I’ve learned to manage the ups and downs of the pain. Which, truth be told, has been the hardest part. When you don’t want to get out of bed in the morning or fear what level of hell awaits when you open your eyes every morning…then you know what it’s like to live with an auto-immune disorder that makes your body hurt day in and day out.

But I’m finally used to that now. I can get out of bed and handle myself like a nearly normal person. I can make myself tea, take my pills, make lunch for the kids and pack their backpacks. All while grimacing in my head. As the doctors and nurses always ask ‘Are you at a 10 or a 4 or a 7?’ in my pain levels…it doesn’t matter. I can be at a 10 and still go about the morning routine. Because I have to. This is life now.

And because I won’t let it ruin my day and I won’t let it RUN my day any longer.

Then I had to take back the scheduling of my life. Yes, basically I spend my days in a doctor’s office or in treatment with an IV hooked to my veins.

I’ve now learned to schedule everything so it works with everyone else’s schedules. I go when the kids are at school and my husband is at work and no one is the wiser. I’ve taken back the part where everyone would have to move their day and lives around to take care of me.

And onto my bold step. The big one that will test how much this Lupus ‘fog’ has taken over. While I have taken some community college courses online in the past, I’ve kicked it up and re-enrolled in the school where I started: Michigan State University. I had to write a short essay explaining why I wanted to be re-admitted. And for some reason, they took me back.

#Sparty

I’m officially a Spartan again, although I’m not sure I ever really stopped being a Spartan. I’m hoping to finish my degree in journalism by remaining a parti-time, disabled student, taking courses online from my home in California.

I’m excited. I’m very nervous. Bust most of all I am proud of myself. I found a way to keep my mind busy while I figure out my next big step: taking back my body.

Stay tuned.

Foam Fingers vs. Peanut Butter and Jelly

My daughter tries to show me she’s a “big girl” all the time. She makes her own peanut butter and jelly sandwiches. Gets herself dressed, even when her choices may not match. She even tests just how much she can do on her own by trying things that she may not, exactly, be ready for…

#allhailhala successfully bedazzled her face #gravityfalls #subway

Last night Miley Cyrus tried to show the world she’s a “big girl” too. But instead of sweetly accomplishing the culinary pb&j, she masturbated with a foam finger on stage with teddy bears and Robin Thicke.

We get it Miley, you’re not a little girl anymore. Unfortunately Ms. Cyrus you also showed us you aren’t a woman yet. At least not a responsible one.

I’m all for music and art shocking and pushing limits. But I don’t think that’s what Miley was trying to accomplish at the MTV Video Music Awards. She was no Madonna rolling around in a wedding dress, shedding her virginity. She was no Lady Gaga showing off her avant-garde art schooling.

She simply looked like a little girl trying very hard to show us she was a big girl. Just like my daughter tries to show me every single day. The difference?

My daughter is eight.

The good news here is we all can relate. Remember when you were younger and you so desperately wanted to be seen and taken seriously and NOT treated like you were, well, 20? Miley really wants us to know she’s to be taken seriously as a “big girl” and not a little kid…certainly not one who could possibly be associated with Disney or anything young and pure.

Unfortunately she failed miserably to show us she can be a responsible “big girl.”

We get it, we get it…you’re not a little kid anymore. But Miley hun, you could have just as easily of shown us that by rocking out in a sexy outfit, complete with teddy bears, and by throwing in just a touch of class.

Instead you used that foam finger to stroke your vagina and give the middle finger to all the kids who looked to you as a role model. You made it very clear you do not want that title any longer. And as a parent, no worries there, you’re not getting it.

Luckily in my house we don’t idolize celebrities anyway. However we do enjoy being entertained by good actors and singers. Notice I said good actors and singers. After last night’s performance I’m not sure you fit in that category either. But hey, you are young. And as we all tried to show the world we were “big girls” we’ve screwed up a bit. So I’m willing to give you another chance. After all, the world gave me more chances when I was trying very hard to be taken seriously in my early 20’s.

Just take it from those of us who have been there- if you want to be taken seriously a foam finger and long tongue aren’t your ticket to adulthood. Unless that adulthood consists of a trailer park, a stripper pole, maybe an abusive partner and a few addictions. Is that what you want? Is that what you want the world to see you as? The former Disney star turned white-trash entertainer, doing shows at the local watering hole while dirty old men stick dollars in your teddy bear thong? Is that “big girl” Miley’s dream?

Next time, stick with pb&j sandwiches and mismatched clothes.

Glimpses

I caught a glimpse tonight, watching a children’s movie of all things.

I just glanced over at my daughter, who was casually sprawled on the top part of the couch drinking out of a cup.

I could see her. She was a teen. A full-fledged, young woman. Her features were so pronounced. High cheek bones, long dark hair. Those big, dark eyes.

She was sitting on the couch chatting with her with her friend who is here for a sleep over, only I was looking at grown women for that fleeting moment. I was in awe and terrified at the same time.

She was stunning and witty and she still did that thing with her hair that she does now at 8 years old  where she pulls a strand over, pulls it against her cheek leaving a line, and then releases it over and over.

She’s becoming a woman before my eyes and there isn’t a single thing I can do about it.

There are so many things I want her to know. So many things I’m trying to teach her as she grows older.

She still gives me that look of shock when I tell her women are not treated the same as men. Not paid as much. Not listened to in a board room, not given the raises, promotions, or even the venture capital to become successful entrepreneurs. It’s as if I’m telling her fairy tales and she’s awaiting the heroine to swoop in and whisk away all the bad guys and insert a world where all women code, are encouraged to do math,  and are treated equally. She truly doesn’t believe me. Or doesn’t want to believe me.

It’s as if she was blocking it out. She didn’t want to know just yet. She wanted to stay innocent just a little while longer.

#allhailhala

But something tells me that glimpse of a woman I saw on the couch knew. And with any luck, was working with the rest of us to help change the ratio.

Who am I kidding, Hala already has.

A Little Rebellion is a Good Thing

Sometimes I totally forget we’re a bit different around here.

Honestly.

And it doesn’t even occur to me until we’re in a situation where we’re surrounded by those who aren’t like us. (i.e. recent trip to North Carolina)

Let me give you a few examples so as to better paint a picture:

I currently have pink hair.

Mama's hair

My husband just spent his Sunday getting two tattoos.

Inked!!!!

I have eight tattoos (only one is visible to the public).

My husband does not wear a suit and tie to work, or carry a briefcase. He doesn’t even wear a button down shirt. We’re talking jeans, t-shirt, flip-flops or Chucks.

We are atheists and/or agnostic (at least I am) at very best.

We discuss the human body, sexuality, private parts,  politics, current events, issues that require deep thought and even global crisis in age-appropriate ways with the children.

We have no trouble pointing out the evils of the world and the injustice and encourage our children to stand up for what they believe in LOUDLY and with real action behind their words. (Our kids have raised substantial amounts of money for causes they believe in- like $1500 for Sea Turtle Relief during the gulf oil spill)

So as my son and I lounged around on a hot summer’s day, he asked me why teenagers are always mean and weird on tv shows. He wanted to know why they fought with their parents or were always ‘grounded.’ I then launched into a rather bad explanation of rebellion. And how we all feel the need at some point in life to show our independence and rebel against our parents.

He cocked his head and looked at me really funny.

Well, how do you think you will rebel when you’re a teen?

What do you mean?

I mean, what do you think you will do to rebel against your Dad and I?

Why would I do that?

Well I’m not sure, let just pretend…

I don’t know…I don’t want to rebel.

Well you don’t HAVE to, I’m just wondering how you might…

This went on and on and on. Until we realized our children would have to be rather over the top to rebel against us. And it’s true. I mean, look at us. We’re 40 or pushing 40 and tattooed, weird haired freaks. Right? Or so some would say.

So I took the same question to my daughter.

How do you think you will rebel?

I just think I’ll be mad at you because I’ll want to go be with my friends and you’ll want me to go somewhere with you. 

But will you DO anything, like shave your head or dye your hair purple (her hair is currently purple and pink) or get at a tattoo because you are mad?

Definitely not. Why would I do that? I can do that NOW and just for fun.

…touche’ my dear.

Which leaves me taking a long hard look at myself and my body. My hair. My tattoos. And you know what? I love it. I love them. I love that my husband and I could care less what the world thinks and we show our children that daily. We are living life on our terms.

He has found an industry that pays him well and supports his family and allows him to stroll into work daily in a t-shirt and jeans. He didn’t have to conform to the suit and tie rat race to ‘make it’ in this world. THAT makes me happy as hell for HIM.

I’ve always marked important milestones in my life with body art (I got my first tattoo on my 18th birthday, right after I registered to vote). I’ve still managed to be a guest at the White House four times and interview everyone from celebrities to politicians, simply because I can easily change outfits and you’d never know what was underneath. I have made a career based on hard work and damn good work. When I was a professional journalist I investigated, I worked my sources, I climbed my way to the top. As a blogger and non-traditional journalist I’d like to think I became influential and did the same. Even disabled and sick I’ve managed to keep my influence and use my voice to work hard for the things I believe in.

I hope our children take away that they can be who they are and not compromise. They can follow their dreams and not worry about sacrificing their sense of self. They don’t have to fit in a box- anyone’s box- in order to be successful.

And if they really want to rebel, they can just give us heart attacks by voting Republican.

 

 

Detroit Guilt

When news broke that Detroit would be filing for bankruptcy I braced myself for the incoming artillery.

There would be the usual Detroit jokes. The usual bashing and photos of abandoned buildings. All of the things I have come to expect whenever Detroit or Michigan are in the news.

I have yet to unclench my teeth. You guys keep bashing and now Washington is in on the act.

This is what happens when Democrats run your town for decades! 

This is what happens when UNIONS are in charge! 

My jaw is now locked so hard it hurts.

I can’t do this anymore. This fight over the place I was born and raised is now on my weekend morning shows while I sit in Los Angeles, my adopted home. That’s right, I live in Los Angeles.

Yes, let me have it. I left.

I left Detroit.

I abandoned the city and state like so many others. I suppose it doesn’t matter the reason. My husband works in the entertainment industry. His job is LA-centric and that’s just how it goes.

The House I Grew Up In
The house I grew up in.

But what you may not understand is that if I could go back, I would. If I could find a way to be part of the solution, I would. In fact, I am and I have. But none of that matters when you have Detroit Guilt the size of the Detroit River because you live in Los Angeles and can not be a practical, present part of the solution.

We ex-Detroiters…we are a hearty bunch. We find each other in states from California to Florida and band together. My husband laughs. He calls us the ‘Michigan Mafia’ because no matter where we go, inevitably I find someone from Michigan and we bond over our home state.

Detroit Guilt.

We bond over whatever reason we left and we feel the need to defend and remember. Remember all the things we love and all the things we want to help fix. The people. The food. The culture.

We may be Democrats or Republicans but when we talk about the fall of the city we talk about corruption. Something neither party can escape. And something this lifelong Dem always assumed was rampant in big city politics – especially Detroit’s. I never associated my party with the city’s leaders because the city’s leaders were always in trouble. Corruption, unfortunately, has been a mainstay since my childhood in Detroit’s City Hall.

Luckily, good ideas and smart people have always been a mainstay too. Just enough to show me the potential and the glorious past. Just enough to always leave me with hope things will get better.

That hope has never left. Not then. Not now.

We can argue if you think it’s the union’s fault if you want. I find that pointless and an attack on workers. Hard workers. People who, like my grandfather, needed the unions to make sure he could provide for his children and collect a pension. Yes, that word – pension- that has all of DC in a tizzy. The pension that all workers bargained for and received and were promised. I don’t care if times are tough and hard decisions must be made. Promises were made many, many decades ago and I don’t see millions being taken from executive pay. This is just one more way to screw the worker. And now they are finding ways to do it DECADES later. From the very people who kept Detroit going. From the very people who stayed and worked and raised families and poured money into the local bakeries and boutiques and bars. From the very people who gave to your kids’ fundraisers even when times were tough and brought a six-pack when they wanted to bring an expensive bottle of wine. Because that is what Detroiters DO. What hard workers DO.

They also honor their word.

Maybe that’s what all of this comes down to…it’s the people of Michigan. The ones that haunt my dreams and call me back.

Detroit Guilt.

There are abandoned homes and cities and areas all over this country. There are bad parts of town in every major metropolitan area. We hear about them in passing on the news every single night from shootings, to stabbings, to press conferences about revitalization. What is it about my hometown that makes me feel responsible even after leaving so long ago? People move all the time. In this day and age, people move and move and move some more. How many of them still pine for their ‘home’ and still slip and call it ‘home’ when home is clearly 3,000 miles on another coast?

Detroit isn’t a punchline. It isn’t some Democrat or Republican legislative hole where bad ideas go to thrive and good ideas are abandoned. There is certainly plenty of blame to go around and there has been for many years. I know where I place much of the blame and it has nothing to do with political party and much more to do with fear of the ‘other.’

How many of you can tell me right now where the line is back ‘home?’ And you know exactly which line I’m talking about.

When I lived in Metro-Detroit it was right around Beaconsfield. Maybe a street or two over. One side of the street looked beautiful. The other in a constant state of disrepair. Just around the corner is where the liqueur stores and pawn shops and iron bars on the windows began. Just around the other corner you had to squint to find the start of a pothole…even in winter.

When white flight completely emptied the city of a race, it also took many of the jobs. Did you know Detroit’s suburbs are some of the richest in the US?

“Oakland County, for example, is the fourth wealthiest county in the United States, of counties with a million or more residents. Greater Detroit — which includes the suburbs — is among the nation’s top five financial centers, the top four centers of high-technology employment, and the second-biggest source of engineering and architectural talent.” -Robert B. Reich, Chancellor’s Professor of Public Policy at the University of California at Berkeley, Secretary of Labor in the Clinton administration.

Not hard to believe when everyone I know moved out of the city and into the suburbs, my father and mother’s families included, and my family keep moving further north. By the time I moved out of Michigan my parents were near Port Huron. They are now in Florida. The remainder of my family in Michigan are all in suburbs and have been for decades.

So who remains? That line tells the story. It always has. The line between black and white.

They want to say it comes down to pensions. Unions. Republican Governors. 8-years of a Republican President. Decades of Democrat Mayors. No. I say it comes down to what is always comes down to: that line.

Detroit Guilt.

I watched as a kid as our school just over that line got more money than the other. We heard on the news about textbook shortages. About preschool being non-existent for the poor kids because their parents had to work two jobs and still couldn’t afford the extra it would cost. I remember getting involved, by way of working on student newspapers, at places like Focus:HOPE. I remember having a very hard time understanding why the funding was always there for crisp, white, new football uniforms at some of these schools yet not a dime for much-needed classroom materials.

That line was a tricky one. It hurt to realize you grew up in one of the most segregated regions in the country.

It’s one of the rare things I despise about the city I love.

Detroit Guilt. 

There are some big messes that need cleaning in Motown. Really big. But nothing is going to get fixed if all the nation has are jokes and punch lines or the ludicrous idea that my grandfather, as he lays in his nursing home on the West Side (of Detroit) should suffer a deduction in his pension. And yes, I said ‘the nation.’ Because while I am happy to leave many things up to a state and it’s locals…Detroit is bigger than us all.

Even if I throw away the guilt of leaving, and add in helping, this Detroit mess will take innovation and tech and creativity and well.. you get the idea. So I don’t think limiting the pool of talent is wise or advisable if we are truly serious about getting the job done.

Not to mention, showing the city off as an example when different people can reach across the aisle.

And I think I realize why all this Detroit Guilt after all: it’s because Detroit really is about the people – making Detroit like family. Nothing making you more angry, or more proud than family. And nothing makes you feel more guilty.

Family also beckons you home. You may not be able to live with them any longer, but you certainly don’t leave them abandoned. You also may not visit as much as you’d like either, but you make sure you keep up with, at the very least, the latest news through relatives.

Detroit is family. And family is forever.

Kinfolk Vacation

Vacation with family in the South day #1:

My son learned to whittle with a pocket knife (and loved every second of it, making all three of his cousins Harry Potter wands and making his grandfather very happy).

My son is in the country for sure. He just widdled whiddled widdled ? A wand

My daughter baked and played Barbies.

And #allhailhala is baking

She also avoided, like the plague, the baby that came to visit. She really does not like babies.
We’re ok with this. We hope this helps come her teen years.

My body is tired but holding up. North Carolina is wet and has large mosquitoes and Moral Monday, which I really wish I was here to attend. But again, family first.