UPDATE 5 - LAST UPDATE FOR TONIGHT: WE'VE MADE THE $500 MATCH - THAT'S $1,000 IN A MATTER OF HOURS. I believe we've raised just about $2,000 in actual PayPal donations and money orders committed. We're nearly halfway to our overall goal on the first day. Thank you, thank you, everyone!
UPDATE 4: WE HAVE A NEW CHALLENGE - $500 IN MATCHING FUNDS!!! If we can match that, it turns into $1,000! C'mon, folks: We can do this!
UPDATE 3: MATCH MET! Anyone else who's planning to donate who wants to issue a challenge for matching funds?
UPDATE 2: WE HAVE MATCHING FUNDS! As of 3:15PM PDT/6:15PM EDT, donations will be matched up to $250. If we raise $250 between now and evening's end, that's $500 toward our goal for Tonya! We can do this!
UPDATE: Some folks have suggested sending money orders via the U.S. Postal Service and Western Union, because many check-cashing outlets apparently won't cash personal checks (in addition to the problem of their outrageous fees). Kossack jpmassar tells me that after checking rates, the USPS ones have much lower fees. Kosmail me for Tonya's snail-mail address. If you want to use PayPal, the address is weckworth [at] earthlink [dot] net (Kossack weck is handling it for her). At the end of this section, and at the end of the diary, is information that you need to include in the PayPal message section, or enclose with the money order.
NOTE: We also have a new way to donate, for those who need to do so by check. Kossack Charles CurtisStanley (Kitsap River's husband and my brother) has agreed to take care of bundling for anyone who needs to pay by check. You can make a check payable to him with funds designated for Tonya; he will cash them all and turn them into a USPS money order or wire transfer sent to Tonya so that she only needs to make one stop to access the funds. Kosmail me for the address and Kitsap River's phone number, should you wish to verify it.
Some of you may know Kossack
tonyahky. She's been a registered member here for nearly eight full years. She's a member of a number of Daily Kos groups, including the Kentucky Kossacks group,
My Old Kentucky Kos, and regional group
Appalachian Journal. In 2011, she began a diary series on
"practical survivalism and sustainable living," including
tips from earlier generations and a terrific
multi-part series on how to
save money by
canning your own fruits and vegetables, including step-by-step instructions and safety tips for newbies.
She's also written two diaries for the Kosability series, about the challenges she and her daughter face every day dealing with a profound case of autism, pieces that sprang out of her earlier diary recounting her daughter coming home from school with what appeared to be a bruise from physical restraints.
But she hasn't so much as posted a comment since April Fool's Day.
There's a reason for that.
Tonya's been a Facebook friend for a while now; I don't even recall how long. I'm ashamed to say that while it occurred to me that I hadn't seen her here much lately, I didn't follow up to ask whether she was okay.
That changed two weeks ago — when, entirely by accident, I happened to see her status update in my Facebook feed.
She had mentioned having just gotten bad news from the doctor: a dangerous uterine fibroid situation in need of invasive surgery very soon. An alarm bell went off in my brain, and as I continued to read, sure enough: She can get the surgery, but doing so creates a huge — seemingly insurmountable — problem for her.
She is the once-again-single mother of four children. The oldest starts college (locally) in five weeks. The others go back to school about the same time. And the second child, aged 16, has severe autism and requires a personal attendant virtually around the clock.
A personal attendant able to help physically with some very heavy, labor-intensive tasks.
After her surgery, Tonya will be bedridden for a while, and severely restricted in her physical activities for a minimum of six weeks. It's not merely that she will be unable to lift anything or engage in any labor-intensive activities: She will not be able to drive; to lift or carry virtually anything, including a purse; or to perform activities that involve stretching, bending, or twisting, such as getting a dish out of a kitchen cabinet, for several weeks.
And there is no state aid available in Rand Paul's Kentucky for a single mother of four children, without health insurance and unable to work for months from sheer pain, to provide an after-school aide for her severely disabled daughter.
Tonya's been through more ordeals already than any one person should have to endure. A much greater physical ordeal awaits her — and make no mistake, this is not elective surgery. This has reached a point where it's a matter of survival. But how is she supposed to undergo surgery that will mostly incapacitate her for at least six weeks without the ability to ensure that her daughter (and her other children) can also survive it?
Over the jump, get the full background, and then find out how you can help. If you want to skip the lengthy details and get right to the donation part, you can do so in the paragraph immediately below.
Please note: Tonya's health problems have destroyed her finances; she no longer has a bank account (details are below). One Kossack, weck, has stepped up to do the physical collection of funds for her via PayPal. When the donations are complete, week will turn the funds into a wire transfer and send it to her via Western Union. We currently need someone trustworthy who has the ability to do the same for those who can only contribute via personal check or money order. If we cannot find anyone to do this, her only option will be to collectt individual checks and money orders and take the to her local check-cashing place, which means that she will lose a significant percentage to fees. Kossack Charles CurtisStanley (Kitsap River's husband and my brother) has agreed to take care of bundling for anyone who needs to pay by check. You can make a check payable to him with funds designated for Tonya; he will cash them all and turn them into a USPS money order or wire transfer sent to Tonya so that she only needs to make one stop to access the funds. Kosmail me for the address and Kitsap River's phone number, should you wish to verify it. You can donate via PayPal here: weckworth [at] earthlink [dot] net. Even if you don't normally do PayPal, please consider making an exception for this situation; the good you will do will vastly outweigh the bad (and you don't need a PayPal account of your own to send money that way). If you absolutely cannot bring yourself to contribute that way, Kosmail me for her address for sending a check or money order.
PLEASE NOTE: However you choose to donate, please include a notation on the PayPal entry form or an enclosure with the check/money order to the following effect:
This is a charitable donation for the medical care of the family of Tonya Harris.
This is essential; under her state's framework, she can accept charitable donations for medical expenses without it affecting her ability to get the surgery, but she must be able to provide some form of receipt to that effect for each donation.
IT SHOULD BE A BASIC MEDICAL PROCEDURE; INSTEAD, IT'S AN ORDEAL
Tonya's still a young woman. When she began having trouble with her periods — irregularity, increasing pain, other symptoms — she put it down to perimenopause/early menopause, which is common for the women in her family. [As you'll see below, there may be a reason for that, too.] With a full-time job as a nurse, and four children to care for, if you can keep going, you keep going. It's just what women do. Particularly when, by all indicators, you know what it is, there's nothing to do about it, and a doctor's visit would entail expensive and ultimately useless tests that would eat up funds needed desperately for your kids.
So she kept working.
Eventually, though, it got to be too much; she had to quit working and lost her health insurance. When the excruciating pain finally drove her to her knees — and to the doctor — a month or so ago, the news was much worse than she ever imagined. An ultrasound showed a fibroid tumor. Now, lots of women have fibroids; they're usually fairly small, and they may come in multiples. For a lot of women, they're completely benign cystic masses — but for some, they're cancerous. And the amount of pain and the attendant complications from them don't necessarily bear any relationship to the number of them, or their size.
In this case, though, size matters. Because Tonya's fibroid is 6" to 7" across — which is HUGE. The doctor told her that she doesn't understand how Tonya's even managed to stay on her feet over the last year, because the pain has to have been indescribable.
They won't know whether it's malignant until they can get in there and remove it; then they'll biopsy it. And if, heaven forbid, it does turn out to be cancerous, Tonya will have a great deal more stress — physical, psychological, financial — added to the already heavy burden she's carrying.
They're also going to do a hysterectomy. They're hoping to save her ovaries, which is crucial, but again, they won't know whether that's possible until they actually get in there.
In the best-case scenario, Tonya will be hospitalized for several days after the surgery. thereafter, she'll be confined to bed rest and home while her body heals from a very traumatic, very invasive procedure. It'll be a few weeks before she's permitted to do much more than get up to go to the bathroom; basic recovery, if all goes perfectly, will be a good six weeks, perhaps more. And all this assumes that there are no complications along the way.
Fortunately, her surgery is covered. But the fallout isn't — and that's going to be significant.
"YOU CAN'T AFFORD TO BE SICK WHEN YOUR CHILDREN DEPEND ON YOU FOR SURVIVAL"
Tonya has four children from her marriage (she's divorced), ranging in age from 12 to 19. The three oldest have autism, in widely varying degrees of severity. The oldest, F, has a very mild case; she attended regular classes and just graduated from high school this year. She'll be starting college in a few short weeks — locally, which will help, but her class load and homework will put a serious dent in the amount of time she can devote to helping care for her younger siblings.
The two youngest are her son C, age 13, and daughter M, age 12. C has a fairly significant case of Asperger's Syndrome. He also has an unerring ability to focus and a profound love for science. Intensely fascinated with space travel and solar power, he's already working, as a hobbyist, on designing new technologies. In the coming school year, Tonya hopes to get his work entered into the local student science competition. M, meanwhile, is what Tonya calls her "miracle baby": no sign of autism present, and she's doing well in school both academically and socially.
Which brings us to A, Tonya's second child, also a daughter. A is 16, and she has a profoundly disabling case of autism. If you're familiar with the autism spectrum, you'll know that it's a very broad spectrum: Some people exhibit virtually no visible effects; in others, it's accompanied by such profound disabilities that it doesn't not permit even minimal unaided function with regard to ordinary daily activities; and, of course, others wind up at any of a million other points in between the two extremes.
A falls closer to the second category. What that means is that the ordinary experiences of daily life, things that the rest of us take so for granted that we don't even notice them, are an excruciating ordeal for her. They're an excruciating ordeal for her mother, too, in trying to cope with their effects. It can be an astronomical challenge just to keep her free of injury and safe from harm.
To set the stage, in Tonya's own words:
She is completely nonverbal and functions on about the level of a two or three year old. Imagine a toddler in the body of a 16 year old girl who is built like a tank. She mostly communicates using gestures, though we have had a moderate amount of success with Pecs cards.
She attends high school at Madison Central and spends her entire day in a self contained classroom. Unfortunately. funding has been cut so there was no extended school year for kids like her this year.
Because of her condition, she requires constant supervision. She has an obsession with liquids of all types. She likes the sound they make when she pours them out, and she collects the bottles she can manage to snag as a memento, I suppose. So we have to keep cleaning supplies and other household chemicals locked up away from her. We also can't keep things like shampoo in the bathroom.
That's just the backdrop against which Tonya and her family must deal with everything else. And the "everything else" is unimaginable for people with no exposure to this particular condition. One of the greatest challenges in dealing with a child with severe autism can be the sensory issues: visual impacts, sounds, smells, tastes, textures, the feel of things against one's skin — all of these are magnified in ways that cause extreme discomfort and even severe physical pain.
Here's what sound can do:
Like many autistic kids, she suffers from a number of sensory issues, which at times can trigger various behavioral issues. She is hypersensitive to noise, so in our household, we have to constantly watch for signs the noise is bothering her so we can adjust our activities accordingly. It really sucks when the noise that is bothering her is something we can't do anything about, such as the upstairs neighbors who have a habit of blasting their stereo till late at night, and will often get into fights. These sorts of situations can often trigger a full on meltdown. She will scream and cry in rage for hours sometimes, occasionally hitting herself. She just had such an episode last night, and I had to take her to the doctor today to get the bruises she left on herself checked out.
Sometimes, in respomse to too much sensory stimuli, she will start voice stimming. You have to hear her do it to understand what I'm talking about. She will sing, very loudly, a steady note that she can hold for a good 15 or 20 seconds. She has the lungs of an opera singer. She would make a magnificent mezzo soprano. She has perfect pitch, too. There's not much you can do once she has a meltdown or starts vocal stimming. You just have to ride it out with her, and do the best you can to keep her from hitting herself. There are times when I can get her to smack me instead. I know it sounds nuts, but I would rather take those licks myself as to see her hurt herself.
Re-read those last two sentences, please. Stop and think about what they really mean.
Mealtimes also raise big concerns:
She also has sensory issues when it comes to certain textures of food. She mostly likes crunchy foods. I often have to prepare special items for her at mealtime in order to get her to eat. She loves fried chicken and homemade french fries. She also loves chocolate in any form. We have to watch her about sneaking into the kitchen and trying to cook her chicken herself, since she could get burned. I sometimes let her help me in the kitchen, which she gets a huge kick out of. We all brag to her about how good her food is, and she just giggles away.
And then there are things the rest of take for granted, like wearing clothes:
She also has some issues when it comes to the clothes she wears. She can't stand the feel of certain fabrics. If you put the wrong thing on her, she will strip it right back off. Some days, she takes a notion to go streaking around the house, and it can be a battle to keep clothes on her. At least she doesn't do that in public. She has a wonderful OT [occupational therapist] who works with her twice a week. She has been trying to help her with her sensitivity to fabrics.
Tonya and her family were recently moved, with no notice by the landlady, to a lower-level apartment. In addition to the physical and psychological stresses of the move itself, it means additional expenses. It also means more issues for A, because the sensory stimuli are much worse for her in the new apartment. And in her situation, a comfortable (and comforting) routine are absolutely essential:
We have had to take A to a hotel room a few times this month because of the noisy neighbor. When we complained to the landlady she told us we had no right to complain because of A's voice stimming.
Because, of course, a child's disability is equivalent to a neighbor's violent outbursts.
[The occupational therapist] told us we should probably move because of the noise issues with the neighbor. A does best when her days follow a consistent routine. It keeps her from being as confused, and she stays much calmer and happier. Everything, from getting dressed to taking a bath has to follow Procedure. Failure to follow Procedure results in her making you do it over till you get it right. She needs prompting for getting dressed and she needs to be toileted every two hours. I also have to give her a bath. She hates doing her hair, especially right over her ears. In order to detangle her hair, I wash it and then put conditioner in it. I then brush through it to remove the tangles. This is the quickest way to do her hair.
And to think I complain about always having to relight the pilot 45 minutes before I want to take a shower. I'm so fortunate to be able to get up in the morning secure in the knowledge — and therefore not even having to
think about it — that I can go about my daily routine with no ill effects from everyday sounds, textures, or other sensations. It's actually
HUGE — and it's something most of us never even have occasion to realize.
So what's the upshot of all this? Simple:
Tonya needs surgery — her situation may be life-threatening.
If she gets the surgery, there will be no one to serve as a personal attendant to A during the hours when she's not in school.
If there's no one to assist A, Tonya won't be able to get the surgery.
Personal assistants cost money, and in Rand Paul's Kentucky, there is NO aid for someone like A for such a purpose. [Yes, Tonya has checked. And checked again. And re-checked just in case she missed something the first two times around. And A's teacher has helped check. There. Is. Nothing.]
Do you begin to see the nature of this unconscionable Hobson's choice?
"THIS STATE MAKES THINGS IMPOSSIBLE FOR PEOPLE LIKE US"
Honestly, I don't ever want to hear, from another supposed liberal, about how wonderful Rand Paul is. Not ever again. Because his slavish devotion to his right-wing ideology creates situations like this, where real people with real lives but none of his privileges and benefits are left to fend entirely for themselves or die trying. And that's a feature, not a bug. It's not that people like Tonya and her family simply fall, unnoticed, through tiny cracks in the system; it's that the Rand Pauls of this country, and their acolytes, underwriters, and political fellow travelers excavate the earth from beneath their feet and them give them one hell of a very large push.
There are very likely reasons why autism rates are suddenly so high in Tonya's extended family. The same is probably true for the rates of early menopause among her family's women. It's certainly true for the astronomical rates of childhood disability and birth defects among Kentuckians generally.
From generations' worth of mountaintop-removal mining and all the personal and environmental damage that comes from a culture dependent on pulling coal out of the ground to the chemical weapons depot not far from Tonya's apartment to the toxic legacy of wholesale environmental destruction in the parts of Appalachia that this country's political leadership conveniently forgot generations ago, Kentuckians bear burdens that rival those of some impoverished urban areas and Indian reservations.
The latest census figures put Kentucky's annual median income at a little over $42K a year. Keep in mind what that actually means: Half the population's income is above that; half is below. It's about $10,500 below that national median income. Per capita money income looks much different (and much less pleasant): $23,033 annually in 2011, the most recent year for which numbers are available. In Kentucky, more than 18% of all persons live below the federal poverty line (that's about 4% more than the national rate).
In Kentucky, 9% of all children ages 5 to 20 have a disability. For adults 21 to 64, the number jumps to 24%. And for seniors 65 and over, it skyrockets to barely shy of half: 49.3%.
And it's not just disability rates, it's overall poor health. According to Kentucky Voices for Health, citing a University of Kentucky study:
- No. 1 in mortality: Kentucky has the highest total mortality rate in the United states (987 per 100,000 population vs. 842 nationally) largely due to high cancer and heart disease death rates.
- Leader in cancer deaths: Kentucky’s cancer death rate is the worst in the nation-237 per 100,000 population, compared to the U.S. average of 202.
- Cardiovascular disease: The leading cause of death in Kentucky is cardiovascular disease. The Commonwealth ranks fourth highest for cardiovascular mortality, fifth highest for heart disease mortality, and twelfth in the nation for stroke mortality.
- Obesity: Kentucky ranks sixth in obesity, with 29% of adults considered obese, compared to a national average of 24%.
- Dental health: Oral health is also a concern, with Kentucky ranking eighth in the number of adults who have lost at least one tooth to dental disease.
- Quality of care is weak: The quality of overall health care available in Kentucky is rated as weak by the national Healthcare Quality Report (on a scale from very weak, weak, average, strong, to very strong).
- Access to care: A total of 77 of Kentucky’s 120 counties and four urban regions are designated as Health Provider shortage Areas by the U. s. Department of Health
and Human services. Kentucky has 2.5 primary care physicians per 3,500 population, lower than the national ratio of 3.7.
Why?
In large part, coal. Specifically, mountaintop removal mining [MTR]. Kentuckians for the Commonwealth is an organization dedicated to educating the public about the dangers of MTR and its effects on the environmental and public health, and it's currently recruiting state residents to help lobby members of Congress for change. The group's leadership has been hammering at these issues:
In recent years, several peer-reviewed studies have demonstrated that:
- people living near mountaintop mining have cancer rates of 14.4% compared to 9.4% for people elsewhere in Appalachia
- the rate of children born with birth defects was 42% higher in areas near mountaintop removal mining
- the public health costs of pollution from coal operations in Appalachia amount to a staggering $75 billion a year
- Surface and ground water near mountaintop removal carries elevated levels of heavy metals and carcinogens that can persist for decades after mining ceases. Scientists have found evidence that soil has also been affected, most likely by the large amounts of diesel fuel used in blasting. And airborne particles near mining sites contain ammonium nitrate, silica and sulfur compounds, to name a few.
The link above goes to the group's site, which in turn includes links to the studies in question.
Add to this toxic legacy the presence of the Blue Grass Army Depot [BGAD] in Richmond, where Tonya and her family live, and you have a recipe for a public health disaster of epic proportions. Because BGAD isn't just any munitions depot: It's a chemical weapons dump.
Those tea-bagging, coal-sucking parasites of the military-industrial complex and corporate America, Paul and McConnell, are just the proverbial cherry atop the poisoned sundae.
WHAT'S NEEDED
http://i141.photobucket.com/... So what's needed? Well, as always in this society, it comes down to money. Money Tonya doesn't have, and has no hope of getting elsewhere.
We've run the numbers as best we can, and Tonya's given me her best estimate:
The going rate around here for a special needs caregiver is around 12 to 15 per hour. I calculated that she will probaly need roughly 84 hours of care total, based upon an estimated 6 hours per day during the first 2 weeks, 4 hours per day during weeks 3 and 4, and 2 hours per day during the last two weeks. This schedule assumes that I heal normally and there are no unforseen complications.
That's a total of 168 hours for the period of Tonya's recovery. I'm estimating it at the higher rate, because there re always,
always unforeseen expenses with something like this; 168 hours at $15/hour works out to a total of $2,520.
But we don't know — and won't until Tonya's surgery — whether that's a remotely reasonable estimate of the number of hours needed. My guess is that it will wind up being at least a bit more; better to build in enough that the family is covered if the hours needed are significantly more (or if, to get someone sufficiently qualified, she's forced to hire at the top-end rate of $17+/hour). There will also be incidental expenses along the way: They're currently about $180 behind on their electric bill, because of her inability to work; she canceled her Internet access some time ago because it was a luxury they could no longer afford. Phone service is a necessity, as are rent, food, and incidentals like car insurance — and, as noted above, the occasional motel stay when the upstairs neighbor becomes violent, so that A doesn't hurt herself in reacting to the pain the noise causes her. I'd like to build in a cushion so that Tonya's got a little breathing room in case something comes up, or in case her recovery takes longer than currently projected — say, $5,000.
Now, I know that $5K sounds like a lot. It is. But do you realize that if we could bring together 200 people who each gave $25, it would be covered? We've raised much more many times over. Surely, between our relatives, friends, and real-life and social media networks, we can come up with a couple hundred people who can do without a movie this weekend, or four lattes from Starbucks, or a pack or two of smokes, or a couple cases of beer, or one meal out?
Because that's all it will take.
And then A will be able to make it through her mother's recovery.
And Tonya can get the surgery she needs to stay alive and well, for herself and her children.
DONATION INFORMATION
Please note: Tonya's health problems have destroyed her finances; she no longer has a bank account (details are below). One Kossack, weck, has stepped up to do the physical collection of funds for her via PayPal. When the donations are complete, week will turn the funds into a wire transfer and send it to her via Western Union. We currently need someone trustworthy who has the ability to do the same for those who can only contribute via personal check or money order. If we cannot find anyone to do this, her only option will be to collectt individual checks and money orders and take the to her local check-cashing place, which means that she will lose a significant percentage to fees. Kossack Charles CurtisStanley (Kitsap River's husband and my brother) has agreed to take care of bundling for anyone who needs to pay by check. You can make a check payable to him with funds designated for Tonya; he will cash them all and turn them into a USPS money order or wire transfer sent to Tonya so that she only needs to make one stop to access the funds. Kosmail me for the address and Kitsap River's phone number, should you wish to verify it. You can donate via PayPal here: weckworth [at] earthlink [dot] net. Even if you don't normally do PayPal, please consider making an exception for this situation; the good you will do will vastly outweigh the bad (and you don't need a PayPal account of your own to send money that way). If you absolutely cannot bring yourself to contribute that way, Kosmail me for her address for sending a check or money order.
PLEASE NOTE: However you choose to donate, please include a notation on the PayPal entry form or an enclosure with the check/money order to the following effect:
This is a charitable donation for the medical care of the family of Tonya Harris.
This is essential; under her state's framework, she can accept charitable donations for medical expenses without it affecting her ability to get the surgery, but she must be able to provide some form of receipt to that effect for each donation.
Chi miigwech.
