Disability Crowd Fund “Book for a Buck”

For the last several days, I have been hosting a crowd fund via twitter and Facebook. To put it bluntly, we’re broke and in trouble. My job cut my hours down to around 20 for the entire MONTH. My son works full time at minimum wage to help with bills, but with my hours being cut so far down, we’re drowning. We have one car, and we’re still making payments on it. We had already fallen a little behind on the payments and the company gave us until this month to get caught up. If we don’t, they will repossess it. It is our only transportation for my son’s job, as there is no public transportation to the nearby suburb where he works. It is also heavily used to get us both to doctor appointments for our various conditions. We need my car.

We are also behind on several other bills (phone, electric, water) and groceries. With our current schedules, we also will not have enough money for January rent on the first. The State of Texas has decided that since I used to get unemployment earlier this year (but haven’t in months), I still should be fine. They have denied any food stamps, Medicaid/CHIP (for our disabilities), or temporary assistance to needy families.

Least importantly, my son and I will not be exchanging gifts. I know gifts aren’t important, but it stings knowing I can’t give him anything, even after all he has sacrificed this year to work full time and help with household expenses. He has given up starting college yet, participating in several hobbies very important to him, and free time to see his friends. All of his friends went away to college this year, so often, when they have been back home to visit and wanted to see him, he had to decline because he was working. It hurts that I cannot get him anything to show him how much I appreciate his sacrifices.

I had asked for help from friends and the general public before, but the response was sporadic. Also, I felt guilty for asking for help again. My internalized ableism was causing me to really beat myself up. So I hit on a plan. I am working on a collection of short stories and poems to be published in February. As of right now, I am planning on self-publishing on Amazon. So, I hit on the idea to raise money by offering a “book for a buck.” Each person who donated at least $1 to my PayPal link would receive a PDF copy of my collection no later than 02/01/17. When a PayPal notification is sent, it includes an email address for the sender. When I get notifications, I immediately send a “thank you” note and ask if that is the email address to which their book should be sent. Then, whichever email address they state goes into a database I am compiling of pre-orders. That way I don’t miss anyone.

I’ve had a few pre-orders from friends, and many retweets of my offer on twitter (thank you, everyone). But actual donations/pre-orders have been limited to close friends (many of whom are experiencing hardships of their own). Then it hit me:  The general public doesn’t know if I can even write. They are probably scared they’ll get a hot mess sent to them. To that end, please scroll down to my next post. Here, you can read an excerpt from one of the stories that will be included, The Wager. You can also read a rough draft of one of the poems that will be included, The List in another post.  If you like them and want to read more, please donate to my #disabilitycrowdfund #bookforabuck campaign. All it takes is $1!

You can donate/pre-order here.

When PayPal notifies me I have received a donation, it usually includes an email address. I will email that address and confirm that is where you want your book sent. Whatever email address you reply as your preferred method will be added to my database of pre-order email addresses. If for some reason there is no email, I will post a comment on this post and/or twitter to track you down to contact me with that info. No later than 02/01/17, I will send an advance PDF copy of my book before I submit it to Amazon. Thank you all in advance for your support!

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The Wager excerpt

It started out like any other winter day in South Texas. Gray, gloomy, not too cold but not warm – a hint of fog to add another layer of gray to an already blah landscape.

The first indication that something was amiss was the snow. Fifty degrees outside, and it starts snowing. At first it was just a few flakes here and there. Then the temperature started to drop, and the snow kept falling. Soon, wind began whipping at the flakes, sending them sideways. Before an hour had passed, the temperature had fallen 20 degrees and a foot of snow was on the ground.

All in a city that last saw snow 30 years ago, and even then it was a fine dusting that melted in hours.

In the chaos that ensued, no one noticed the lanky, tanned man standing in the middle of a Whataburger parking lot, staring in satisfaction at the sky. Drivers were too busy trying to control their cars as they skidded across streets suddenly slicked with ice. After all, in a city where drivers panic even driving in the rain, snow and ice were too much for their sensibilities. Even the snow birds, made lax by usually sunny skies and moderate temperatures, were having issues dealing with the sudden blizzard.

The man smiled and thought to himself, “Humans are so easily distracted.”

He adjusted the straw cowboy hat incongruously perched on a head of long sunbleached hair, brushed a spec of lint off the lapel of his loud Hawaiian shirt, and made his way into the fast food chain. The fact that everyone around him was hunched over in the cold, pulling forgotten sweatshirts and jackets out of their cars, while he walked erect clad only in an unbuttoned shirt drew a few glances, but for the most part, peoples’ eyes slid right past him, the oddity forgotten in the wonder and worry caused by the snow and ice now bulleting down from the sky.

Instead of standing at the counter to order, he sat at a booth in the corner somewhat isolated from the few diners inside. Neither restaurant employees or customers paid any attention to him – their eyes were riveted to the winterscape that had suddenly appeared outside the windows.

He checked his watch, frowning as he noticed his expected company was already five minutes late. He hated wasting time.

A disturbance in the air drew his attention to the seat across from him. What was an empty seat a few seconds ago was now occupied by a woman. Her long black hair was pulled severely back in a bun, and dramatic make-up accented her eyes. Blood red lips curled with slight disdain as she looked around the garish orange and white fast food decor. Only the male patrons seemed to take note of her presence. Eyes lingered appreciatively, until she turned her gaze back upon them. She may have been gorgeous, but she was also intimidating as Hell. Hers was the expression most people imagined when one mentioned “Resting Bitch Face.”

An impatient huff escaped her as she turned back to the man.

“Well?” she asked with a wave of her hand. “You asked for a meet. Here I am, what do you want, G-”

“In this form, I am known as Kevin,” he interrupted.

She looked him up and down. “Well, Kevin, you look a little far from the coast in that get up, don’t you think?”

“It amuses me,” he replied. “Besides, I’m on my way to Hawaii. I just took this detour so I could handle some business before pleasure.

“And what should I call you?” he continued mildly.

She thought a moment. “Call me Lucretia.”

He snorted and caught himself before laughing outright.

“What?” she asked indignantly.

“Nothing, Lucretia,” he retorted, putting extra emphasis on her chosen name.

“Yeah, well, at least I don’t look like a surfer dude reject.”

“No, you just look like a refugee from an old Robert Palmer music video,” he snarked, miming playing a guitar woodenly while rotating his body stiffly from side to side.

“Fine, both of us need to work on our human guises. Now that we’ve established that, would you kindly tell me why I’m here?”

He looked around to see if any mortals were watching. No one paid them any attention; they still seemed mesmerized by the freak weather occurrence outside.

“We’re here because we need to discuss The List.”

She straightened in the booth, a scowl forming quickly on her face.

“What about it? You aren’t going to renege on our agreement, are you?”

“Of course not; you know I keep my word. It’s just that there has been an… unexpected development.”

“Pray, continue,” she said with a smirk. He raised an eyebrow and nodded in recognition of her pun.

“It would seem the same name appears on both of our lists,” he announced somewhat dramatically.

“That’s impossible!” she cried, a little too loudly. Several heads rotated to see what was causing the excitement. Twin glowers from both entities suddenly made any observers less curious.

“That’s impossible,” she continued more softly. “When we set this up, we made it nearly impossible for the same person to appear on both lists.”

“Apparently, ‘nearly’ impossible was not sufficient. The fact remains, we must do something about it.”

“Of course. Leaving things as they are will throw off the entire operation. We would have to nullify the wager,” Lucretia responded with growing horror on her face. “Who is this person, and how did they wind up on both lists?”

A small notebook materialized in his hand. He flipped the cover open, revealing a single name on the top sheet. Kevin slid it across the table to her.

“A woman?” she exclaimed in surprise.

“Yes, I was flabbergasted by that, myself. I triple checked the information.”

“And you’re sure her time nears,” she asked.

His look clearly expressed “duh!”

“How much time do we have until she expires?”

“According to our calculations, she will leave this world in exactly two weeks, 5 days, 20 hours, and 13 minutes.”

“Mode?”

“An unfortunate accident caused by one of her beloved pets and a set of stairs.”

Lucretia winced.

“Was that sympathy I see? Are you going soft on me?”

Her eyes flashed crimson. “Never. I can merely sympathize, as I know just how bad it can hurt when one takes a fall,” she replied sardonically, emphasizing the last word.

“Touche,” he said. After a pause he asked, “So, how do you want to handle this?”

“You’re sure she is perfectly balanced between good and sin?”

“Unfortunately, yes. I reviewed her life, and she is the most interesting mix of saint and sinner.”

“It won’t do, not at all. We have to do something to push her to one side or the other, or else our little game is ruined.” Lucretia tapped her chin, lost in thought.

As she contemplated, she became aware of the conversations going on around her. The humans seemed most distressed by the snow and ice. When she overheard a man’s voice state that it seemed like magic, her gaze snapped to Kevin’s face.

“Magic,” she blurted.

He cocked his head to one side, studying his companion for a moment. Slowly, realization dawned on his face.

“Ah, yes, what’s the one thing that all humans crave? Power. Giving her magical power would most definitely be a good test to see if she uses it for good or ill.” His eyes narrowed.

“But how do I know you or one of your minions won’t try to step in and encourage her to use it for evil?”

Lucretia slumped a little in her side of the booth.

“Unless,” he continued, “that were part of the game. If we each had a lackey there with her at all times, trying to encourage her to use her new power for either good or ill, we could not only make this more interesting, but we could also ensure the other does not step outside the bounds of good sportsmanship.”

“And neither servant is allowed to harm the other – physically, mentally, or emotionally,” she added quickly.

“Of course not,” he conceded.

Slow smiles spread across both of their faces.

“I didn’t think it was possible,” Lucretia stated with a satisfied grin, “but our little game just got more fun.”

 

Across the city, the woman in question burrowed further under the quilts on her bed and continued dreaming, completely unaware that the fate of the world would soon rest on her shoulders.

 

Copyright © 2017 by Jennifer Hacker. This original work is the sole property of the author, and may not be copied or reprinted without express permission of the author. Promotional links to this site are allowed.

 

The List

(TW: Suicide)

 

From the time she was 8 years old

she kept a list of reasons why

she could not die that day.

When she was young, it often said

“because Mom has already lost two children

and I just can’t hurt her by taking another one.”

She often thought about how it was her fault

her sister was dead. Her fault

that life-saving marrow didn’t do its job

and save her sun, her moon, her stars, her sister.

Years passed

the list kept growing

some items scratched out

revised

reworded.

The theme remained the same, though.

Cannot hurt her mother. Cannot hurt her brother.

And then there were the pets.

Some would say they were “just animals”

but she knew better. It had been drilled into her soul

from a young age that one does not take the responsibility for another life

lightly.

Whether you promise to heal a sibling’s sickness with a part of your own body

or meet the needs of a non-human animal, the promise is the same –

“I will protect you and cherish you. I will never let you down.”

She had already failed at one; she would not leave the others behind.

So she stayed. It was less a desire to live

than a desire to not let down those who depended on her.

Time passed, the pets died of old age,

the girl went away to college.

She began to live, and in living a new life quickened inside her

at the same time the relationship that created that life ended

it created a new responsibility she had to protect.

Her list grew longer, the promises deeper.

She did not take the responsibility for another life lightly.

She whispered to the babe

“I will protect you and cherish you. I will never let you down.”

Shortly after the babe was born, Cancer came and took from her family again

stealing away her mother in the blink of an eye.

The list didn’t get any shorter though

It just had some items scratched out

revised

reworded.

The theme remained the same:

“I failed others but I won’t fail you.

Others failed me, but I won’t fail you.”

So now she protects, cherishes, waits,

she stays.

It is less a desire to live

than a desire to not let down the person who depends solely on her.

Time will pass.

She will keep checking her list.

Until one day,

there will be nothing on it.

 

Copyright © 2017 by Jennifer Hacker. This original work is the sole property of the author, and may not be copied or reprinted without express permission of the author. Promotional links to this site are allowed.

 

 

Dear Mr. Hartman – A Dream of Community

A few nights ago, I had a dream about founding a neighborhood, a true community for people with disabilities and without, with varying incomes, people with children and without, with pets and without. There were on-site stores, pharmacies, a farmers market… it was a community in so many senses of the word. But first, let me back up a minute and explain what probably led to this dream.

Back when I was in high school, my sole ambition in life was to be on Broadway. If I wasn’t in class, I was on stage – singing, dancing, acting. Not only was I active in the fall play and the spring musical, but I also competed in speech/drama tournaments across the state, one-act play, I went out for community theatre. I ate, slept, and breathed the theatre. I pushed myself so hard, I often forgot to eat or sleep when preparing for roles. A lot of my bad habits in not taking care of myself began back then. Anyway, to help me in studying all aspects of the theatre, one of the electives I took in high school was drafting and design. I figured an architecture and blue print class would be helpful in learning about designing sets for the stage.

I loved the design projects we had to do. Sure, it was only high school, so it wasn’t like we actually designed any houses or sets that were actually built, but it was fun. Long after high school was over (and long after the first blow out of my knee and the onset of osteoarthritis that was the first death knell for my Broadway dreams) I still played around with designing houses and buildings.

Not too long ago, I was contemplating what exactly my housing needs would be when the inevitable day came that my son would move out. I depend on him much more than he depends on me. It is a fact of life that the chicks must leave the roost eventually. I found a free design program online and started playing around. I played with a studio-type house, since the dogs and I mostly stay holed up in my master suite (though it is admittedly on the large side).  My doodles brought about something like this:

dream-house-floorplan-updated

Except where the couch is shown, I pictured a Murphy bed, something like this (please note the mechanism comes down and goes back up with the touch of a button. There is no heavy lifting or straining involved):

tango-sectional

I don’t see the point in having several TVs and several rooms when I already stay pretty much in one room. Good thermal room darkening curtains would ensure my privacy from any prying eyes, and also save on my bills. Also, if I had a small house like this, I could forgo an expensive central heat/air conditioning unit and use something more along the lines of an electric unit similar to what is used in Europe or Asia to both heat and cool the home. I rarely use the heat in the winter, anyway. I was thinking this single unit could be made of concrete block, which can be insulated quite well if built correctly. One could even put in a small fireplace or area for a small pellet stove in one corner for use in winter in case of a power outage in cold weather.

A home such as this would be relatively inexpensive to build – probably under $50,000. It would cost even less if one were to build similar houses in an area at once.  Of course, in my situation, it might as well be $50 Million. I don’t even have $50.00 to spare right now, or even $5.  But it got me thinking:  San Antonio, TX, is home to many forward thinking ideas when it comes to disabilities. True, most of them are concentrated on children.  Mr. Gordon Hartman has created the fantastic Morgan’s Wonderland – an amusement park created specifically with people with disabilities of all kinds in mind, and is in the process of creating a water park designed specifically around the needs of people with disabilities.  My son and I both have spent hours at Morgan’s Wonderland and greatly enjoyed ourselves there (prior to my disability onset, but when my son’s many health issues were at their height). We both look forward to the opening of the water park, so we thank you, sir!

There has been much talk about the need for people with disabilities to be able to live in the community, not hidden away in nursing homes. There has also been talk about the severe shortage of good, safe, public housing available for people who qualify for Section 8 vouchers (many of whom are also disabled). In many cities, the waiting list to get into public housing is several years! In the mean time, where are people supposed to go? I personally have been experiencing this crunch myself. I can’t wait years on some list for public housing, and I am afraid to move into the only neighborhoods I can afford. There’s a new shooting reported there almost every night.

This leads me back to my dream. I dreamed of a community full of little houses similar to the one I designed. Even though they were all made of concrete block, the outsides were stucco and painted varying desert colors, so they didn’t look like ugly boxes. There were varying models. The lawns outside were low maintenance xeriscapes that were drought-friendly. Some were studios like the one I designed for myself. Some offered more privacy in 1, 2, and 3 bedroom units.  Some had lifts in the bedrooms and bathrooms to assist disabled people in wheelchairs and other mobility assistive devices.   All had fenced in backyards where pets were welcome. For a small fee, a pet waste removal company came to all the houses enrolled in their service twice a month to remove the waste from all the houses where a disabled person lived who could not physically bend to remove the waste.  And all the houses were designed around wide wheelchair- and mobility assistive device- accessible paths that led to a park in the neighborhood. This park had playground equipment that was accessible to both disabled and non-disabled children. And incorporated into the neighborhood were pharmacies, farmer’s markets, clinics (with rotating networks of doctors and therapists who visit as a satellite office), massage therapists, dietitians, etc., in aesthetically pleasing locations that blend into the neighborhood.

And the people who lived in the houses? They were a mixture of people, both disabled and non-disabled, people who qualify for public housing and assisted living vouchers, and private citizens. In my dream, investors similar to Mr. Hartman made a deal with local, state, and federal government to share the costs to create such neighborhoods. Programs would be set up to allow low income people and families who wish to train to work in medical professions who could attend state-sponsored workforce training for such jobs as phlebotomy, CNA, medical assistant, pharmacy assistant, home health aide, etc., those  jobs that would be in demand in this hypothetical mixed use, multipurpose neighborhood. Then, those people that passed the training would qualify to receive a voucher to live in that neighborhood with their families. As their situations slowly improved, the voucher amount would slowly decrease over time, to where the family paid more of the rent themselves.  People with disabilities who are found to be able to work in or outside the home would be set up with DARS counselors to help them find suitable work either in the neighborhood shops or other employers (local/state/national), either on location or even remotely. Skills training can be arranged via DARS and the Workforce Commission, if applicable.  Families with disabled members who did not qualify for housing assistance but who have private insurance or Medicare/SSI/SSDI that paid for home health care could contract to live in the neighborhood and the cost of their in home care would be billed through the neighborhood, which would be fulfilled by the now-trained and certified people who had housing vouchers and lived in the neighborhood, as well.

I know this dream is an oversimplification of things. There are nuances that are much more complicated than what has been expressed here. But the thing is, if people put their heads together. If people who actually care about the lives of the disabled, and the elderly, and those who live in poverty, and who want to stimulate the economy, put their heads together, a community like this would work. What if San Antonio Mayor Ivy Taylor, The Gordon Hartman Family Foundation, the San Antonio Disability Access Office, DARS, Alamo Workforce Solutions, and HUD all got together to make this work? A community like this would get the disabled and elderly who don’t really need to be in nursing homes back into the community, would stimulate the economy, provide much-needed SAFE public housing, and, if it was built in an area of town that had previously been starting to decline, it would also beautify the city. Can San Antonio please show the rest of the world that it is truly inclusive of its disabled citizens? What if communities in other parts of Texas or the U.S. could move forward in their thinking about how people with disabilities can be part of the community, instead of trying to hide us away from the world?

My Disability Journey Began Long Before It Started

TW: abuse (physical and emotional), death, cancer, depression

(The following account does not use any names in order to protect the identities and privacy of family members.)

According to science, there is a very good chance the severity of my (relatively) newly-diagnosed (but not newly begun) chronic illness can be linked to more than just the genetic material handed down by my father.  Back in 2009, a major medical study was published confirming that childhood trauma creates a 70%-100% increased risk of developing autoimmune disease. That is a huge increase. I’m a bit late in the game talking about this, though, seeing as how doctors – as a whole – are not talking about this with their patients. I know if any of mine had in the five years I’d been searching for a cause for my symptoms, maybe they would have taken me more seriously and diagnosed me before my Psoriatic Arthritis went haywire in my body and completely destroyed my spine, soft tissues at several major joints, and led to severe peripheral neuropathy.

Maybe if my doctors had asked me what life was like growing up, they would have gotten a clue before then.  My father was an alcoholic with a habit of both physical and emotional abuse.  One of my earliest memories is sitting down at the dinner table and my father yelling and cursing at all of us (my mother, my older sister, my older brother, and me) for some imagined infraction or another.  Having no filter between what I was thinking and what came out of my mouth, I said, “Daddy, you’re drunk.” If my mother hadn’t positioned herself between his fists and my tiny (I was not yet in Kindergarten) body, I would have gotten much worse than being slammed into a wall.  But more horrible than the physical punishment I received was hearing my mother take the beating that was meant for me.  I tried to control my mouth better after that.

Beyond my father’s physical abuse was the stresses created by my sister’s illness.  She was the eldest child, and at 8 years my senior, and 5 years older than my brother, she often acted as our second mother.  Yes, we squabbled as any siblings do, but when it all came down to it, we loved her fiercely just as much as we loved our mother.  She was the eternal optimist in the family, whispering to us that things would get better, that our father would be leaving again soon on one of his business trips, he would only be home for a little while longer, then things could get back to “normal.”

But normal never came.  She started finding bruises all over her legs, when she didn’t run into anything that would have caused such a thing.  She was tired and run down all the time, too weak to even lift her flute to play – something she used to do for hours on end a day. She was very musically talented.  She got sick all the time, couldn’t seem to shake the simplest cold.  After months of doctor visits and tests, she got a diagnosis – Leukemia.

This was back in the 1980’s, before so many of the standard treatments in use today had been even thought of, much less approved.  At the time, we lived in Oklahoma, in a tiny town more than an hour away from Tulsa.  Medical care for a type of cancer for which there were few treatment options in that area was non-existent.  For months, she was in and out of hospitals, getting blood transfusions, IVs of whatever they could think of to throw at it, but she just kept getting sicker and sicker.  She stopped being able to go to high school.  She wasn’t able to participate in anything she used to love.  At six years old, I had the first discussion where it was acknowledged that she could die.  My other mother could die.  Thankfully, my sister’s condition galvanized my mother to divorce my father, citing his abuse.  Unthankfully, at that time the courts didn’t care about enforcing child support. My father would pack up and move to a new state each time my mother finally tracked down an address and work place for him (the courts insisted my mother had to do the legwork herself, then report the information to the court).  He was making six figures a year as a mainframe computer programmer; he could afford to keep moving as much as he wanted.  My mother was working part-time as a mail carrier, around all the hours she had to be available to take my sister to doctor appointments and hospital admissions.  We moved to a tiny house that was infested with mice, but it was still much happier for not being around my father.

After several months passed with my sister’s health declining, her doctors told my mother that there was nothing else they could do for her.  If we wanted her to have a chance to survive, we would have to seek out one of the hospitals doing an experimental treatment called a bone-marrow transplant, where the bone marrow of a donor with a genetic make-up very similar to my sister’s would be implanted in my sister’s bones in the hopes that it would multiply and “fix” the problems causing the Leukemia.  She would have to have massive doses of chemotherapy and radiation to basically wipe out her own bone marrow so that the donor’s marrow would have a chance to take over. Yes, this is a standard treatment now, but 30 years ago, it was still very risky and experimental.  My sister’s doctors thought this was her only hope.

At that time, there were only four hospitals in the U.S. participating in the experiment.  My mother had been born in Kentucky, and a university hospital in the state was one of the hospitals participating, so that is where we went. My maternal grandmother and several extended family members, so my mom hoped that they would be able to provide help with taking care of my brother and me while Mom was at the hospital with my sister.  It was also discussed that – before we left  Oklahoma – we would have to have all immediate family members tested to see if any of our bone marrow compositions were compatible with my sister’s.  They would do the sampling (a simple DNA test that looked for certain markers) in Tulsa and send them overnight to the hospital for the tests to be run. It was a given that we all would willingly be tested, and my brother and I – although we were both under 10 at the time – were both adamant that we would do anything to help our sister.  There was only one family member who was recalcitrant and put up a fuss about being tested, although in public he played SuperDad.

My parents were tested first; neither was a close enough match.  They had been warned this may be the case.  The closest match usually comes from a full sibling, as we all were a product of the same gene pools.  They then proceeded with the second stage, testing me and my brother.

When the results came back, it was a good news-bad news type situation. The good news was, one of us was an almost 100% match – extremely rare in siblings that are not twins.  The bad news was, it was me, the baby of the family.  I got the feeling that my brother was upset that he couldn’t do something tangible to help my sister.  As the middle child, looking back I can see that he got pushed aside and lost in everything a lot during this time and later, when things went all to hell.  I wish I had been older, and more able to understand what was happening with him, and how he was being affected by everything. But because I was young and had my own worries and fears to deal with, I didn’t see it as it was happening.  Everyone’s focus was on me and my sister, and how to get her well again.

We made the decision to move to Kentucky that winter (1984/1985).  Unfortunately, this coincided with one of the coldest, harshest winters in decades.  My father went up there first and moved into an RV in a little town just north of Lexington.  Because we were trying to save every bit of money we could, and had little ability to do otherwise, we moved in with him – despite his alcoholism and temper.  There were five people living in an RV smaller than most bedrooms.  Then the record-breaking snowfall came, and my father’s temper became shorter and shorter, eventually leading to yet another incident where my mother had to stand between my father’s fury and her children’s bodies.  We went and stayed with my grandmother for several weeks after that, though that situation was not ideal, either.

Eventually, we were able to rent a house. My mother secured part-time employment as a mail carrier again, my sister began consultations with the doctors at the hospital, and my brother and I started school – me, second grade, and him, fifth. We were already oddballs because we were starting more than halfway through the year.  Add to that a touch of Oklahoma accents, a small town where everyone knows everyone, and an ingrained suspicion of strangers, and you could say our schooling was a bit stressful at first.

After extensive testing and consultations, the doctors at the hospital said that they could take my sister as a patient. But there was a problem with our insurance. My dad was USAF retired, so we all had his medical insurance. But since my sister’s treatment was experimental, the insurance company would not cover it.  The hospital refused to start any treatment without a down payment of over $100,000.  My mother was a part-time mail carrier, and my father kept leaving the state to avoid paying child support. We didn’t have that kind of money.  But if my sister had any chance of survival, we had to have that treatment. My mother swallowed her pride and went public, asking for permission from local businesses to put up collection cans with my sister’s story and picture on them around town.  Then we got the media involved, asking them to cover my sister’s story on the news.

Many people were supportive, but we also got a lot of hate mail, people calling in to radio stations and writing letters to the news stations calling us freeloaders.  The news stories explained about the insurance and the hospital, but many just didn’t believe it. My brother and I got a lot of crap at school from other kids, too, who were repeating nasty things they overheard their parents say.  My brother came home from school several times with signs he had been in scuffles.  I had my share of trips to the principal’s office for retaliation against students who had said mean things to me.

Finally, we had enough money for treatment to begin.  My sister began the early stages of treatment and testing.  She was admitted to the hospital for an extended stay – up to a year or more.  Mom struggled to be at both the hospital with my sister and at home with me and my brother.  Mom had to go on leave from work, and the bills began to pile up.  We were faced with eviction from our house, and my father still wouldn’t pay his child support.  Over the telephone he told her, “if you marry me again, I’ll pay for everything. If you don’t, you and those little bastards can die for all I care.” Ah, paternal love. Ain’t nothing like it.  Backed into a corner, my mother gave in.

They remarried, my dad paid all the bills, then took off to take a job in another state, where he continued efforts to raise funds for my sister’s continuing treatment.  While there, he put back on his SuperDad mask, pretending to be the concerned, dutiful dad; in reality, he was anything but.  My sister was given a brief reprieve from the hospital, allowed to go out to eat in a restaurant one last time before they would begin the task of suppressing her immune system, making her a prisoner in not only the hospital itself, but her room. She wanted to go somewhere to eat with fresh vegetables and healthy choices.  My brother and I both came down with strep-throat, and my mom was afraid of being around my sister and getting her sick. (If she got sick, her treatment would have to be pushed back further.)  So, my father came to town for the weekend and took her out to eat.  Without even considering why she wanted to eat at the particular restaurant, my father said “No.” See, that particular restaurant didn’t serve beer. My dad was such a lousy drunk that he couldn’t wait an hour for a damn drink so his daughter could have a healthy, fresh, last meal before being trapped in a hospital room. Instead, he dragged her to a bar and grill that served greasy, disgusting food and was full of cigarette smoke.  It was the last meal my sister ever ate in public.  But that isn’t even the worst of it.  One of the side effects of my sister’s condition was that her blood wasn’t clotting very well.  My father knew this. It was so bad, she was told not to shave because a nick with a razor could be life threatening. My sister dared to try to tell my dad she didn’t want to eat in the bar so he reached over in the car AND PUNCHED HER IN THE FACE.  She could bleed to death from the smallest cut, and his need for beer was so great that he risked killing his daughter over a f#cking drink. My mother found out about this after the fact, and tried to press charges, but my father made up some story that my sister tripped and fell on her way into the bar, but was so mad at him for taking her there that she made up the punch to “punish” him. The police believed him. His SuperDad mask was back in place, and the cops there saw what he wanted them to see – an upstanding computer programmer who put up with the histrionics of his sick daughter and overbearing wife.

Life continued on, but everything changed. My sister had to be in the hospital for months before my role as donor could even start. Her immune system and blood cells had to be suppressed down to an almost non-existent level even for the transplant to take place.  After a while, we couldn’t visit her unless we suited up in head-to-toe plastic gear to keep us from contaminating her room with any germs brought from outside.  I was kept away from the hospital because I had to stay healthy in my role as donor.  I had to eat specially calculated diets to try to boost my own immune system, so my bone marrow would be nice and robust for my sister.  I was poked and prodded so many times with blood tests that I developed a severe fear of needles.  My anxiety about the actual transplant rose higher and higher, triggering the insomnia I had already been battling since I was a baby. Mom took me to see hypnotists, therapists, anything she could think of to lessen my anxiety.  But the thought of not donating never crossed my mind. It got into my mind that my sole reason for existing was to save my sister.

There was one last test before we could proceed with the transplant. The doctors had to extract a sample of my bone marrow and test it on my sister to see how her body reacted to it. Even though I was only 9 years old at the time, they would harvest a sample with only a local anesthetic. They claimed I wouldn’t be able to feel anything.  The day came, and my mother escorted me to the surgery suite.  The nurse walked in with a huge syringe that looked like it was designed for elephants, not people. The needle on the end of it made me want to faint.  It had a very large bore and was extremely long. It had to be strong and long enough to punch through my hip bone and down into the middle where the bone marrow was produced. They gave me the local anesthetic, waited five minutes, and assumed it would have taken effect.  I lay facedown on the gurney, my backside uncovered from below my cheeks to my lower back.  The doctor climbed up on the gurney and straddled me so he could get enough leverage to punch through the bone.  My mother stood to one side and held my hand. Everyone assumed it was okay to proceed. As the needle came down into the bone, it became apparent to me that a local anesthetic was NOT enough. I screamed and my hand spasmed around my mother’s. I felt the bones in her hand grind together, I gripped it so hard. I almost blacked out from the pain. My mother was whispering, “he almost has it, just hold on.” Then, just as he removed the needle and turned to hand it to a nurse so he could climb down, the unthinkable happened.  The nurse bobbled the syringe, and it slipped out of her hands and dropped to the ground. The syringe cracked, and leaked my marrow all over the floor. The doctor said, “Shit, we have to do it again.” Despite the fact that it was obvious the local did not work, the doctor ordered a new syringe, climbed right back up, and did it again on my other hip. I screamed again, the bones in my mother’s hands ground together and this time gave a little pop!, then I was being forced to sit up to move to a wheelchair to be moved to another room. My hips are on fire, my vision is sparkly and dimming around the edges, I just fractured a bone in my mother’s hand, I am nine years old, but sure, let me hop right up and jump into the wheelchair for you, Doc.

Later that night, my mother apologized for my experience, but encouraged me to see it as one more step in getting my sister well.  Then she said that, should my sister’s body accept the bone marrow the way expected, at least the actual transplant would be done under complete sedation. I would be asleep during the whole thing. It was little comfort at the time.

Soon after that, my mother started watching me with a strange look on her face – despair, resignation, worry, and hope all mixed together. I assumed it was because of my sister’s upcoming transplant and Mom’s worry over how I was handling things.  More than a decade later I discovered it was because the doctors had pulled my mother into a meeting to discuss the “medical curiosity” of having two daughters, born 8 years apart, with nearly identical genetic make-ups. Furthermore, my sister and I shared physical characteristics commonly found in identical twins – birthmarks, moles, distinctive tooth placement, etc., in exactly the same place, just in mirror image on each other.  My sister had a beauty mark on her right cheek right on the highest point of the cheekbone; I had the exact same beauty mark in the exact same place, just on my left cheek on the highest point of the cheekbone.  She had a canine tooth that was positioned in front of all her other teeth on the top right hand side of her mouth; I had the exact same thing on the left side of my mouth.  My sister had a small mole on the left side of her nose; I had the same mole in the same place on the right side of my nose. We both had double nails on our pinky toes. Our face structure and build was markedly similar, except where my sister’s hair was dark, mine was a very light brown. Where her eyes were a deep chocolate brown, mine were very light, changing from blue/green/gray depending on my mood. Although those two last items are not commonly found in twins, it just goes to emphasize how I was the photo-negative of my sister is almost every way. The doctors brought all this up to warn my mother.  They told her there was no cause for Leukemia that had been found yet; they worried that since our genetic make-up was so freakishly similar for non-twin siblings, my mother should watch me in the years to come for signs of developing it.  I was nine at the time; my sister developed her Leukemia at around age 14. The doctors were concerned that – although my immune system was robust at the time – the situation could deteriorate at I aged.

Of course, I knew none of this. I just thought my mom was starting to doubt if I would be able to save my sister. I thought she doubted if I was strong enough after my reaction to the bone marrow sampling. My doubts grew as the transplant had to be rescheduled several times because I had gotten sick at school; I had to be 100% healthy and fever free to be able to donate, or else it could fail.

Although I was scared, I was also relieved when the day for the transplant came.  I could finally get it over with. My sister had been receiving donations of stuffed animals at the hospital, but she couldn’t have them unless they were sterilized first. The sterilization process often ruined the fur, so she often had the nurses and staff distribute the gifts to the other kids in the children’s wing who didn’t have to go through such drastic measures to receive a gift. She made sure the kids with few visitors and few decorations in their rooms got the biggest, fluffiest ones. She kept one out, though, and had the nurses deliver it to me in my hospital room a floor below her the day I arrived for the transplant. She knew I was terrified and I wanted me to have some comfort. It had to sterilized before it came to me so I didn’t get sick at the last second, but somehow this little stuffed dog survived the process. I named her Ginger. Thirty years later, Ginger still sits in a place of honor on a shelf beside my bed.

It was so like my sister to do things like that. She always thought about the kids on her floor and had the nurses tell her how they were doing. She always put herself last, celebrated their successes, mourned their losses.

Ginger rolled into surgery with me for the transplant.  I was only nine, after all. Even though I was being asked to exhibit adult bravery, I was still a little girl who needed something soft to hug when frightened.  After my last experience of having bone marrow extracted, there was much to fear in my mind. I remember the anesthesia mask coming down over my face, being instructed to count backwards from 100, then darkness.  Hours later I woke up feeling as though my hips were being stabbed with a white hot poker.  They extracted the bone marrow exactly where the two little dimples are in the lower back right above the butt cheeks. To this day I have round scars in the exact center of each one. That is also where my pain begins and radiates up and down in a burning path when I have been standing or walking to long. I am not convinced this is a coincidence.

In addition to the severe pain, I found the doctors had taped and bandaged Ginger in the same way as I was, as though she had also donated bone marrow.  While part of me appreciated their attempt to provide comfort for a little girl, another part of me was downright pissed that they put tape on this precious gift my sister took time and consideration from her own sick room to send down to me.  I pulled off all the tape and bandages right there in the recovery room, careful not to accidentally remove any of her fur in the process.

I had more pain in my pelvis than the doctors had anticipated. The next day, when the doctors were ready to discharge me, I couldn’t stand up, much less walk, because of the pain. It was like the nerves from the transplant site downward were on fire, and it was short-circuiting my body’s ability to transmit the signal to walk. My mother was with my sister, who had endured a much longer and more grueling process than had I.  My grandmother was asked to stay at home with my brother, and my father was tasked with picking me up from the hospital. I dreaded what that meant.

It was hospital policy that all patients had to be wheeled out, usually by a nurse.  My father sweet talked her into letting him roll me down because he didn’t want to “bother” her when he knew she was “so  busy.” My father was a charismatic man, able to hide his true self from other people, especially women. I wanted to beg her not to do it, knowing in my heart how he felt about any perceived weakness, but he wouldn’t leave her alone with me for even a second. Helpless, I watched her simper out of the room as she told me how “lucky” I was to have a father like him.

The minute she was gone, he started berating me for being a weakling. He wanted to try to make me walk out of the hospital, but he knew he wouldn’t get away with it because of the policy. He picked me up and shoved me roughly in the chair. Then he grabbed the bag with my few toiletries and extra clothes in it and crammed it into my lap. I reached for Ginger, but he held her out of my reach, threatening to rip her head off if I so much as thought about causing “trouble” for him.

All too quickly, we were at his car, which he had parked out of direct sight from the main doors. He opened the passenger door, turned to me in the wheelchair and grabbed me roughly by the upper arms and jerked me up to a standing position before I had a chance to brace myself.  My vision went dim and I got lightheaded. He pivoted and used one arm to shove me roughly toward the car. I fell into the car more than got in, because I wasn’t quite close enough to get in without having to take a step; my feet and legs still were not obeying all signals sent by my brain to walk.

He left the wheelchair on the sidewalk and got in the driver’s side. I looked down and noticed an open beer can in a koozy in the driver’s side cup holder.  Several empties rattled in the back floorboard. Suddenly I was terrified that we wouldn’t make it home in one piece. But like most drunks, my father was damn good at hiding what he was from other people.  Even though we passed several police cars on the half hour trip from the hospital to home, we were not pulled over. I wish we had been.

When we got home, my father started to yell at me and drag me out of the car. That’s when our neighbor and my mom’s new friend from down the street stepped up to deliver a casserole for dinner.  Suddenly, my father was the affable, loving father again. He swooped me up so tenderly into his arms, like he was carrying a precious princess into the house. Of course, the neighbors couldn’t see the way he was digging his hard fingers into my ribcage, or the bruises that lingered there for days afterward.

After the neighbors came inside and dropped off the food, my father used my recent experience at the hospital as an excuse to get them to leave.  He strode to a bedroom with an attached bath and dumped me roughly on the bed. “Forget about asking for help to use the bathroom,” he snarled. “Suck it up and walk like a normal person, crawl in there, or piss yourself,” he said.  He stalked out and slammed the bedroom door. At this point, I was exhausted from the whole experience and was just grateful he left so I could go to sleep.  I tucked Ginger in my arms, got as comfortable as I could on the bed and fell asleep.

Sometime later I was awakened by someone pulling me roughly to my feet and dropping me on the floor.  “It’s dinner time. If you want food, get off your ass and get in the dining room to eat. No one’s buying your act here,” my father thundered at me. My legs still weren’t working properly. I didn’t eat dinner. I laid in the floor until my mother came home from the hospital to take a shower. She found me there and helped me to my room.

Thankfully, my father had to leave to go back to the state where he job was. We all were grateful. By this point, I hated him with a white-hot rage. I returned to school, but was still having trouble with walking. My elementary school was three stories, and my classes were on the top floor, except for recess, lunch, and two subjects that were all downstairs.  There was a clinic on the top floor where I would lie down on a cot while my classmates trouped up and down the stairs.  It took several weeks for me to be able to walk as before without pain and weakness.  It was assumed the doctors hit some nerves when doing the transplant, which caused prolonged issues.

Despite the transplant, my sister didn’t seem to improve.  Her skin took on a dark, jaundiced color.  My brother and I went with our mother to visit our sister as often as the doctors would let us.  Sometimes, she would be so sick by the time we got there that we wouldn’t be allowed to go in to see her, though. My brother and I would hang out at the nurse’s station or in the children’s play area on those days. I was in advanced classes in school, and somehow it came up that I was interested in computers. We had been learning a lot about programming. The nurses let us “play” on the computers at the nurse’s station, not realizing my brother and I were both advanced enough with computers that we could actually get into the system. I got into patient records and started looking up my sister’s blood work. Remember, I was only 9, so even though I was advanced for my age, there was a lot in the reports I didn’t understand. But I memorized what it said her white blood cell and red blood cell counts were, because I remembered my mother telling me those numbers could tell us how she was doing. Every night when we left, I dutifully reported the worsening numbers to my mother.  It took several times before the nurses caught on to what I was doing and blocked us from using the computers.

By then, the damage had already been done. I knew my sister was getting sicker and sicker.  My mother didn’t really talk about it with us. She just asked for the numbers, and her face would get pale and grim when we told her. I began to think my bone marrow was killing my sister. With the logic of a child, I reasoned that she took a turn for the worse after she had the transplant. She received my bone marrow.  Ergo, my bone marrow must be killing her. I kept this knowledge to myself, though. I was afraid my mom and brother would stop loving me if they, too, figured out that my bone marrow wasn’t good enough and I was killing her with it.  I didn’t want them to stop loving me, I didn’t want it to be true, so I said nothing, even as I became more and more convinced I was an evil, terrible person.

This feeling was not helped by my father’s comments to me over the phone and in person when he came to visit. The more he drank, the louder he would say “the wrong daughter got sick” and “Why couldn’t you be the one dying?” to me, the beer making his words slur together.

Not long after one of his visits, my grandmother, brother and I were sitting in our living room, watching TV. Mom had gone to the hospital early that morning to visit my sister. I wasn’t really paying attention to the TV, I was thinking about my sister, and hoping she would get better. Suddenly, I heard her name spoken on the TV.  A news bulletin came over the air.  “BREAKING NEWS:  We have just learned from ______________ hospital that ______ ___________, who recently underwent an experimental bone marrow transplant to try to cure her Leukemia, died at _______ a.m. this morning.”

In an instant, the world went from color to black and white, it splintered into a million different pieces. I felt like I could see the shards spinning and falling into space. Then everything went dark and cold.

Fragment – my mother coming in the door weeping. Granny told her what we heard on the news. My mother cursing them for not having the decency to wait until she could tell us herself before a nurse called the TV station to report the news.

*darkness/cold*

Fragment – Mom hugging me, telling my brother and me that our sister died because her liver failed. It seems she contracted Hepatitis C from a blood transfusion way back when we lived in Oklahoma. They didn’t used to screen for it. It had been hiding in plain sight for years. But I knew that it was the bone marrow. I had seen the reports. I saw the numbers. I killed her.

*darkness/cold*

Fragment – at my sister’s funeral, the rent-a-preacher can’t even say our last name right.  He kept going on and on about what a sweet soul she was, bungling our last name in a different way each time he said it. Something in me snapped and I loudly corrected him in the middle of the service.

*darkness/cold*

Somehow years have gone by, we’ve moved, I’m in a new school, and I don’t really remember any of it.  Apparently, shortly after my sister died, my mother divorced my father – again. Mom, my brother, and I lived in the house that had been bought because it met the requirements needed if my sister ever came home from the hospital.

*darkness/cold*

I wake up one morning, and I feel fully present for the first time in years. I’m almost 12 now. We’ve moved again, and I’m starting middle school. In the divorce agreement, my father pressed for visitation, but since he lives out of state, he only gets us for a few weeks in summer and a week after Christmas. I dread those visits.  He treats my brother like crap, calling him names and trying to “toughen” him up. When he’s drunk, he continues to tell me the wrong sister died. I believe him. In fact, I often wonder why I am still alive. I wonder why anyone should care about me – the freak who murdered her sister.

When drunk, which was often, my father delighted in rubbing my face in the fact that my bone marrow wasn’t good enough to save her. That there was nothing about me that was good, right, or pure, and that even though I looked an awful lot like my sister, I was just a cheap duplicate that didn’t have an ounce of her worth. He told me all I would ever be good for was shacking up with some man. The best I could hope for was someone would want to f*ck me enough to take me off my family’s hands.

Yet when he wasn’t drunk, he would praise me to high heaven for how smart I was. But I could never forget about the horrible accusations he made that I was a murderer.

Late middle school and early high school was about the time I started having mysterious illnesses.  Sharp, stabbing pain in my ribs that made me go white as a sheet and fall down.  Pain in my pelvis where the transplant harvest had been when I was a child. Pain shooting up and down my legs.  A lethargic, wasting tiredness that doctors tentatively called “mono” even though it kept coming back every few months. Doctors constantly ran tests on my blood because of the family history.  The tests always showed elevated inflammation levels, but they could never figure out why.

I went to college, the mysterious illness continued. No cause ever attributed.

It wasn’t until I was in college that I discovered that the bone marrow transplant had actually WORKED, and my sister would have lived if it weren’t for the HepC. The only reason why I found out was I finally got up the courage to tell my mother what I had been thinking for all those years.  She showed me the hospital paperwork that proved it, but until the day he died in 2009, my father always insisted I was at fault for my sister’s death, and the world would have been better off if I had died and she had lived.

How much of all this, I have to wonder, has contributed to now? I have moderate to severe psoriatic arthritis.  Because doctors didn’t take me seriously for years, it was allowed to destroy my body for five years before it was diagnosed. I had to leave my teaching job because the pain and fatigue were too much, and I couldn’t do all the physical things people who aren’t in education ever consider happen in a teacher’s day. When my back hurts, it always starts in two places – a sharp, stabbing pain in my thoracic spine that travels around to the exact spot where I had those sharp chest pains when I was in high school, and in my pelvis, exactly where they harvested for my bone marrow. It’s like I’m being drilled with a white hot poker right where my scars are.

The funny thing about my condition, though. My father had psoriasis. Many people on his side of the family do.  However, I am the first one that anyone can remember whose psoriasis evolved into psoriatic arthritis. How much of all this darkness, hatred, and pain from my childhood, how much unaddressed trauma, contributed to my body going haywire on me?

(Author’s note. Some of my recollections are colored by time, age, and distance from when they happened. I was six years old – I think – when my sister started getting sick. I was nine when she died. I have memory holes and gaps after she died, some spanning a few weeks, one over a year. My other family members may have slightly different recollections – they were, after all, older. While I remember many incidents with crystalline clarity, I also know that the brain can do funny things with memory. However, I feel this account is overall true and accurate as to my father’s behavior, my experiences with medical personnel, and learning about my sister’s death. Some things, however, might be how my brain pieced them together and has remembered them 30 years, exactly, after the fact.)

 

 

 

The Wrong Daughter – Chapter One

(This is an original work by the author of this blog.  Copying and distributing, whether or not for monetary gain, is not permitted without the author’s express written permission.)

Chapter One

San Antonio, TX – Modern Day

“And don’t forget your poetry projects are due next Wednesday.  Have a great weekend!”

The final bell and the sound of 25 chairs being simultaneously scraped across the tile floor drowned out Marissa’s last words.  She stepped quickly behind her desk to avoid being run over by a horde of eighth graders, aimed her eyes heavenward, and said a quick prayer of thanks that the week was finally over.  She couldn’t remember the last time she had been this tired.  A vertical line appeared between her arched eyebrows as she tried to think of a reason why she would be so tired.

“Hey, got a second?”  A head of dark, wildly curling hair popped through the swinging door that separated Marissa’s classroom from her co-worker and friend, Sophia. She kept talking as Marissa nodded and headed into the room next door. “I know it’s Friday and you want to get out of here, but my SMART Board stopped working. I’m going to need it first thing on Monday. If I call the Help Desk, they will put it in the queue and it will sit there for days before they send anyone out to look at it.”

“So, since I’ve fixed it before, and I’m right next door, I’m guessing you want me to take a crack at it,” Marissa asked with a grin tugging the corner of her mouth.

“Pretty please, with sugar on top!” Sophia was earnest and cute, with sparkling brown eyes, a petite frame, and a general sense of fun and goodness.  Marissa didn’t even have to think about it; she knew she would cave.

“Okay, fine. But you owe me.”

“Just add it to my tab for all the other electronic and tech stuff you have fixed, programmed, and set up for me,” Sophia said mischievously.

“You know, one of these days I’m going to collect on your tab,” Marissa began as she walked around Sophia’s desk to check all the cable connections on the wall.  She started to say more, but a sharp, stabbing pain in her back as she bent slightly to check the connections made her gasp out loud and grab the side of Sophia’s desk for support.

“Mija! Are you okay? You’re white as a sheet!” Sophia asked in concern.

Marissa couldn’t answer at first. It felt like someone was taking a knife and stabbing it right into the center of her spine, then twisting it around her ribs. Sweat popped out on her forehead and upper lip.

As suddenly as the pain came, it left, taking all of her energy with it.

“Marissa! Answer me!”

Marissa took a cautious breath and realized Sophia was talking to her, trying to get her attention.  A face that normally was full of fun was wreathed in concern and a touch of fear.

“I’m sorry, Sophia. I didn’t mean to scare you. Just…. Give me a minute, okay?”  She sat cautiously in the office chair behind the desk and took slow breaths.

“Do I need to call the office for the nurse?”

“No, I’m fine. It’s nothing. I just overreacted to a little twinge. No need to bother Miss Patricia.”

“Little twinge my ass,” Sophia retorted.  Her eyes were snapping with anger now, a darker brown than usual, and her cheeks were starting to flush.  “This is not the first time I’ve seen you have one of these ‘twinges.’ Last week you were walking down the hallway to your room using the wall to prop you up because you could barely stand. Now what in the hell is wrong with you?”

“I don’t know, okay? I’m sure it’s nothing. I don’t see the point in going to the doctor when they’re probably just going to tell me it’s all in my head or I’m too fat like they did a few of years ago.”

Sophia stared hard into Marissa’s gray eyes.  “I’m worried about you.”

“There’s nothing to worry about. I’m sure I’m fine. I’m just probably overreacting. Someone else probably wouldn’t have even noticed a little thing like that.”

“Just promise me you’ll think about going to see a doctor.  A different one this time.  You’re allowed to get a second opinion.”

Marissa mustered up a weak smile for her friend.  “Sure, if it keeps bothering me, I’ll go to the doctor.  A different one than before.”

“Thank you.  Now, go pick up Jack and go home.”

“But your SMART Board still doesn’t work –“

“Don’t worry about it. The kids will live. You’re more important.”

“No, I’m not. But I will admit this week has kicked my ass.  How about I come in and work on it this weekend? I was planning on coming in for a few hours tomorrow and doing some grading anyway.”

Sophia grimaced, considering.  “Only if you feel up to it, and only if you really do decide to grade.  I don’t want you making a special trip. If you decide to stay home and rest, it can wait until Monday morning before school.”

“Deal.”  Marissa slowly stood up and carefully made her way through the swinging door back into her own room.  Sophia watched her with a concerned scowl the whole way.

 

 

Marissa jerked her car to a stop in front of the high school technology lab, wincing as the movement of the car made her spine protest.  She looked down at the clock on her dashboard.  Only 20 minutes late. Considering she was often an hour or more late, she was practically on time today.  She parked in a free space and dialed her son’s number on her cell phone.

It went straight to voicemail.

She huffed and jabbed the disconnect button.  She considered maybe his phone battery died, or he had forgotten to turn it back on after school.  He was supposed to keep it turned off during school hours, except for lunch.

Marissa craned her neck to see if Jack was visible waiting inside either of the glass double doors.  She saw many examples of the male of the species Teenagerus Americanus, but no Jack.

Feeling really tired, irritable, and sore from her earlier spell, she picked up her phone and tried calling him again.

Voicemail again.

Jack was very forgetful, yet prone to hyperfocus on things of interest to him.  He was supposed to stay after school for Cyber Patriot practice – a cybersecurity competition with divisions for elementary, middle school, and high school teams designed to encourage youth to pursue Information Security jobs.  It had been of utmost importance to him all four years of high school.  Jack had been team captain the last two years.  She suspected his phone was off on purpose.

Smiling to herself, she pulled up the contact information for Jack’s best friend, fellow teammate, and Marissa’s “adopted” son, Scot, and hit the call button.

“Hello, Scot, this is Marissa,” she said when he answered.  “Is my wonderful, darling, forgetful son with you?”

Scot laughed. “Yeah.”

“I see. And are there a bunch of your friends with you guys, as well?”

“Yes….”

“So, I need you to give Jack a message for me, and I want you to repeat exactly what I say, exactly how I say it. Can you do that?”

Sensing he was going to enjoy this request, Scot started to snicker.  “Yes…”

“Okay. Tell Jack, ‘Your mommy wommy is outside in the parking lot waiting for her widdle snookums to come out so we can go home and have din-din,’” she said in an extremely annoying baby-talk voice.

Scot started guffawing, but was able to straighten up his voice enough to repeat her message verbatim. In the background, she could hear her son say “Oh my Gawd!” followed by the sounds of a scuffle and the phone line going dead.

Less than a minute later, Jack came charging out of the building, his dirty blonde hair sticking up like he had shoved his hands in it repeatedly in aggravation.  He arrowed straight for her car, threw his backpack in the back, then flopped into the front passenger seat.

“Was that really necessary, Mother?” he steamed.

“I wouldn’t have had to resort to that if you had remembered to turn on your phone,” Marissa replied primly.

“You are so freaking embarrassing sometimes!” he fumed.

“What’s the point of having children if you can’t embarrass them in public?”

“I’m not talking to you anymore.”

Marissa smiled.  “You just did.”

Jack crossed his arms and stared out the window. She could feel the waves of anger coming off of him. It filled the car, making the ten minute drive through the not-great but not-terrible neighborhoods to their home feel like it was taking an eternity.  She rolled her eyes.

“I saw that,” he growled.

“I thought you weren’t talking to me.”

“You know, sometimes I wonder who the adult is in this household,” he snapped at her.

“Oh, honey, so do I,” she laughed as she pulled into their driveway.

Jack jumped out of the car, getting out his own set of keys so he wouldn’t have to wait for Marissa. He moved to the front door.

“Wait! Aren’t you forgetting something?” She pointed at the mailbox.

“Can’t I check the mail later?”

“No, do it now. You are 50 feet from the box. It makes more sense to do it now.”

“Fine.” He stomped the whole way to the mailbox, jerked down the lid, snatched the letters in a fist, and started trudging back to the door.

“Go back and close the lid.”

“Jesu-“

“Now!”

Grumbling the whole way, he did as he was told.  By this time, Marissa had opened the front door and moved toward the kitchen to let the dogs out into the back yard to do their business.  They had been cooped up inside all day and were tripping over themselves to get out in the grass.

“Here,” Jack practically threw the mail at her, then raced upstairs and closed himself in his room.  Soon, Green Day’s “Dookie” album was blasting. “At least he has good taste in music,” Marissa thought to herself.

She stood and watched the four dogs do what was needed then frolic in the grass and sun for a while.  She couldn’t help but laugh when Ziggy, the smallest and oldest (10 lbs and 12 years), didn’t appreciate something George, the second biggest and youngest (65 lbs and 4 years), did and started barking at him.  Although George was six times Ziggy’s size, he still ran in fear when Ziggy started barking and growling at him.  It was just too comical seeing a Staffordshire Terrier running from an old, half-blind Bichon Frise!

As she laughed, she got a smaller pain in her back, reminding her that she needed to sit down and rest before she tried to cook dinner.  Despite her nonchalance in front of Sophia, she was worried and in pain, but also more than half-convinced she was just being a baby.  Her doctors hadn’t taken her seriously, after all.  One had even suggested she was exaggerating to get attention.  In fact, for most of her life, medical professionals had been dismissing her whenever she said she was in pain or sick.  It was second nature for her to doubt herself.

Marissa called the dogs to come in, then moved gingerly over to the couch to sit down.  The dogs assumed their usual positions:  Baby Girl at her feet, Buddy wriggled in between her and the arm of the couch, Ziggy jumped up on the back of the couch behind her head, and George jumped on the ottoman and settled down up against her legs.  Since she had brought with mail with her when she went to sit down, she decided to kill two birds with one stone and examine the day’s offerings.

The first three items would be stuffed in a drawer and left to be thought about another day:  A past due notice from an old medical bill for Jack’s asthma, the new electric bill, and a teacher’s union monthly newsletter.

But the last item made her heart start thumping in her chest.  It was the size and thickness of a greeting card.  Although there was no name in the left corner, and she didn’t recognize the street address, the city and state printed there made her feel like crying.

On Days When I Am Ready to Die

Today is one of those days – the days where the darkness is covering the horizon, the voices in my head telling me I am not good enough are drowning out everything else, my many failures in life are on endless loop in my brain, the soul-sucking loneliness is trying to crush me, the pain prevents me from getting out of bed – all I can think is, “wouldn’t it be so freeing just to die?”

If I were dead, I wouldn’t have to think about the fact that our lease is up next month and I can’t find a house that will take me, my son, and our four dogs, that we can actually afford. I wouldn’t have to think about the fact that I have no money saved for a deposit on a house – being unemployed for almost 4 months wiped out any savings I had. Years of living in poverty prior to becoming a teacher means my credit score is shot (mostly because of the last 18 months of medical bills trying to get diagnosed), so I cannot get a home loan, either.

If I were dead, I wouldn’t have to think about the fact that I am in pain all. the. time. There is no such thing as a comfortable position. There are no drugs in existence that can make me completely pain free. And doctors are even less likely to assist me with my pain because of the current hysteria over prescription pain medications. I wouldn’t have to think about the fact that it is just going to get worse as this incurable disease runs its course.

Most of all, I wouldn’t have to think about the fact that I have completely failed my son and my dogs – the ones who are completely dependent on me for everything. I wouldn’t have to think about the fact that I can’t teach any more because of the pain, making those college degrees and $160K of student loan debt into nothing more than a waste of time and money. I wouldn’t have to think about the fact that I am always going to be struggling like this. I wouldn’t have to think about the fact that there’s no food in the house. I wouldn’t have to think about the fact that I have more bills than I have coming in every month. I wouldn’t have to keep thinking – “living is a luxury.”

But because I am an introvert who spends way to much time in her head, I DO think. I think about a lot of things. And mainly, here lately, I have been thinking about all the reasons why I simply CANNOT die right now.

Why I cannot die today:

  • I am worth even less to my son dead than I am alive. If I had found some way to die while I was still teaching, he could have gotten a nice life insurance payment. But now, I don’t have that.
  • My son would only have more bills if I died. Even a simple cremation costs around $500-$1,000. Then there’s the cost of living. He just turned 18, so he couldn’t even count on the state to help him keep a roof over his head and food in his belly. He has never met (and doesn’t want to meet) his biological father, so that isn’t an option, either.
  • My rescue dogs would be in need of rescuing again. All four of them are damaged in some way. They don’t take well to strangers, so they would not be adopted easily. More than likely, they would either be put down, or left to die on the streets, where I found most of them. I can’t send them back there.
  • I was 23 years old when I had to sit and watch my mother die of lung cancer. I remember struggling as a young mother (my son was 2 years old), trying to be strong for her. I remember helping her plan her funeral, get her legal affairs in order. I remember being devastated when she died, yet happy that she would not be in pain anymore. But most of all, I remember the aching realization that I could never talk to her or ask her advice again. Sixteen years later, I still miss her with every fiber of my being. I cannot make my son begin his adult life by losing his mother. I cannot willingly leave him to struggle on his own the way I did.
  • Although both my parents are dead, I have a fairly large collection of “family” made up of friends who – for some reason I still haven’t figured out – love me. I don’t want to hurt them by leaving. I don’t want to leave them feeling confused and angry that I didn’t reach out to them for help. (But I also cannot reach out to them for help, because although I consider them family, there’s this little voice in my head that keeps telling me they won’t love me anymore if I bother them too much.)

This list has been on endless loop in my head for years. Sometimes, I have to repeat it to myself several times in the same day. Sometimes, I don’t have to remind myself for weeks. Here lately, I’ve said them to myself hourly, eyes closed, lips moving slightly as I go through my reasons, my own personal Rosary. I know that a day will eventually come when I stop reminding myself why I cannot die. I just know that today is not that day.

george in bed
If I died today, George would be back on the street, instead of trying to steal my spot in bed. 
mom and jodi grave
If I died today, I couldn’t tell my son stories about these two wonderful, courageous women. He would lose out on the family history about his aunt and his grandmother. Both lost their lives to two different types of cancer.
jamie shoes
If I died today, I couldn’t continue to watch this wonderful boy grow into a more amazing young man. He may be 18 now, but in my mind, this is what I see when I look at him.

Rory the Raccoon Crashed My Son’s Senior Picture Session

I have read both of Jenny Lawson’s (The Bloggess) books, and actually laughed so hard I cried because I could seriously relate. I read her blog, too. So, as I was looking at my son’s Senior Pictures from earlier this year, I was reminded of her post about Rory, the taxidermied raccoon that is traveling the world as a stand-up poster board cutout. Now, I didn’t have a poster board cutout of Rory when my son’s senior pictures were taken earlier this school year. BUT – I digitally created what I thought it would look like if he had actually been there….

Rory - Ride Free
Rory is a little scared, but discovers the joy of riding a long board downhill…
Rory - King of the World
Rory gets a little more adventurous, and thereby annoys the man-child….
Rory - Running of the skateboards
Man-child finally has enough, and suggests that he and Rory play “the running of the long board.” Rory decides he no longer wants to play with Man-child.
Rory Photobomb
Rory gets the last laugh, and decides to photobomb Man-child’s oh-so-serious pose by the tree.

On Why I Dyed My Hair Purple

Over the weekend, I finally did something I had been contemplating for years. I used a permanent dye on my hair to make it purple.  I had used a temporary dye over the summer a few years ago, and liked the way it looked, but didn’t go for permanent because I was about to start a teaching career. Schools tend to frown on teachers with hair colors that do not usually naturally occur in the human population.

However, since becoming disabled, I had started thinking more and more about going back to purple. At first, I resisted because I was job hunting after having to leave my teaching career due to my disability. Feeling as though I was maneuvered out of teaching after my diagnosis, I have been very up front on those “optional” EEOC disclosure statements letting potential employers know I have a disability. As more and more of the 150+ job applications I have sent out have been either ignored or rejected – despite my Master’s Degree, tons of experience in a variety of fields – having an “interview ready” appearance became less and less important.

More and more, I started noticing the way people stared at me when I was in public. For one thing, more often than not, I have a pronounced limp due to the damage that Psoriatic Arthritis has wrought to my spine and hips. PsA has also caused other damage that affects my ability to walk without pain (plantar fasciitis), my ability to grasp things without dropping them, often in public (carpal tunnel, peripheral neuropathy, tennis elbow, trigger finger), and has caused me to be extremely fatigued almost all the time. So, when the pain is too great, I have to use one of the motorized carts at the store. Because I am also plus-sized, that gets the most stares. I even hear muttered comments about “fat, lazy people,” which grow even louder when I also use my SNAP card to buy groceries for me and my son at said store.

Friday, after receiving a huge batch of emails stating I “wasn’t right for the position” and having encountered ableism and disdain at the workforce solutions office, I had had enough. I called my stylist and friend and told her I was done. I was ready to go purple. See, people have been staring at me for all the wrong reasons. Because of how I walk, because of how I dress (comfort is key due to constant pain), because of my size, because I keep my hair super short due to migraines (which is culturally not as accepted where I live), for a variety of reasons that have nothing to do with who I am, and all about other peoples’ judgment. I had had enough. I decided I wanted to take control. By golly, if people were going to stare at me, I was going to give them a REAL REASON to stare, one that I control and has everything to do with how I see myself, and not what judgments and bias they have ascribed to me. I wanted people to stare at me because I look fine as f*ck with purple hair, not because they pitied me or had scorn for me.

Through something as simple as hair dye, I have wrested control of how I am seen in the world from others and placed it squarely back where it belongs – in my own control.

2016-03-07 18.10.32

I had to boost the color detection in the photo to show how purple my hair is. I will take photos in better light once I am allowed to wash it again. LOL. One good thing about having lots of gray hair, my hair is multiple shades and brightnesses of purple, making it look almost like purple fire on top of my head. Yes, please stare. I know it’s all about the hair!

Apples & Oranges

So, a thread on twitter regarding #orangegate raised some points. I commented, and was asked for a clarification. I posted one, but it was not accessible for all. My apologies for not responding in a format accessible to all. I am still fighting my own, internalized ableist tendencies in the form of considering how different people will be able to interact with my content. So here is a more accessible version. (And, as I state multiple times, I am not trying to speak FOR all people whom this issue affects. I am just trying to encapsulate what I see the as differences in the issues being argued. If you would like to clarify, rebutt, or correct me, please feel free to leave a *civil* comment. Thank you.)

Background: Here is the thread that started this new-ish conversation.

@cartooninperson asked me for an explanation of why I (and by extension, all of us) were continuing to bring up points and rebuttals. Knowing my reply was too long to fit in a 140 character format, I typed it into paint and saved it as a .jpeg file. However, that method is not accessible for everyone, and it is hard to read. So I will transcribe my response into text here:

What seems to be happening here is that you are arguing one point, many of us are arguing another. Those of us who are stating the oranges should stay on shelves are pointing out that his product is accessible to us in that particular type of packaging. Many of the people who are stating the oranges should be pulled have outright stated that it doesn’t matter what is good for PWDs, anyway. We have been called wastes of oxygen, told not to breed, told we are less than human, and that what we want or need is of no consequence. That we should just suck it up and deal with not having fresh oranges. Other people are piping up that the oranges should go because the packaging is wasteful. However, this is not the entire truth.The packages are reusable and they could be made of biodegradable plastic. Furthermore, we are pointing out that there are many other products with much less nutritional value that consume more energy to be made shelf-stable and then be packaged in wasteful packaging, and no one is calling for THEM to be pulled from the shelves. I cannot speak for all PWDs, but I have a hard time opening those types of packages (meaning the yucky  oranges in syrup that are in individual plastic bowls with a film of cellophane on top that I mentioned in a previous tweet), AND I wind up spilling the juice everywhere once I do get them open. So, I do not buy them. However, many of us love oranges and fresh fruit and enjoy the independence of being able to buy oranges that we don’t then have to ask for someone else to peel for us. As I and many others have stated before, it’s not like people are always around, it is demeaning and changes the dynamic between friends/lovers if we have to keep asking for stuff like this, and it is frustrating to have to wait for it to be convenient for someone else to come peel the orange. Many of our doctors advise that fresh fruit is ALWAYS better than canned or juice (another argument others have made – that we should make do with those). The more you process an item, the more nutrition it loses. Now, we have also conceded that there could be more ecologically friendly accessible packaging for this product. However, we do not think the product should be pulled from the shelves outright until such packaging exists. That is like throwing the baby out with the bath water.

What you seem to be arguing is not the same as what many of us are calling for. It all has to do with our needs that should be considered. From all this outcry, it is obvious that there is a market here ready and willing to buy pre-peeled oranges. But what you seem to be suggesting is that the product should be pulled now, that all commercialized packaging should be pulled now, and those foods only be reintroduced once eco-friendly packaging is available. (Please, feel free to correct me if I am misinterpreting your tweets.) So, what we are hearing is, those disabled people with dexterity and fine motor skills issues be damned, you can only have your oranges once there is eco-friendly packaging. Meanwhile, all those of us without dexterity or fine motor skills issues are going to sit over here and eat us some oranges. YUMMMMMMM. This may not be what was intended to be conveyed, but this is the message we are receiving. At least, this is what I am getting from all the tweets back and forth.

If anyone else who is in favor of the oranges staying wants to pipe in on anything I got wrong or that I did not add, please do so. I do not want to seem to be trying to speak FOR all others with dexterity/fine motor skills issues. And if I misstated your meaning, @cartooninperson, please feel free to pipe up. I am trying to explain what I see is happening here, in response to your query to me regarding how what we are arguing is different.

I hope this clears up for you why several of us are pushing back at you. If you’ll forgive the pun, it’s apples and oranges. We’re arguing about apples (the whole underlying issue/ableism/disrespect) while you are only focusing on the oranges themselves (or at least, this is the way it seems). Really, the two arguments are not the same at all.