Yet again, I begin, or continue, as my wise friend Ruth writes, to find the flow. The winter and early spring were miserable times of self flagellation, a habitual eroding of spirit and bodily dysfunction and depression as I struggled with my first almost full time position in almost 20 years, grief over my father's death, and the self-doubt that I've spent lots of time and funds on to master. The last few months at my last job being made too much use of and being blamed for mistakes that I didn't make eroded my confidence. I tried, tried tried not to let it but it led to a kind of low level terror at the new gig, a fear of making mistakes that was kind of ridiculous given that I was learning a whole new industry, system, and working almost twice as many hours while still experiencing the energy sucking rebellion of this wacky body. Couple that with my attempts to be relentlessly positive and high stress ensued. That's my intellectual version of what was happening, anyway. It could have been that the moons of saturn were in retrograde or an infestation of the Asian Depressive Beatle invaded the neighborhood.
I think of these periods when I'm better as clean up and aftercare. Back on the stricter healthcare regimen, back on the medicines and ungents and treatments that seem to help, back to being more social, back to writing and other creative pursuits and dreaming, and playing with Dolce for long periods. Oh, but that all of us could be as satisfied and happy as he is playing with a piece of yarn.
I think one of the other terrors of my winter of discontent is that I'll be 50, 50 years old, next May (with the skin of a goddess in some areas. ha!). It's funny now, that that seemed so sad, in winter, when now it seems like a blessing that I made it this far. And I'm back to writing again (again and again and again).
So look for my "save the date" for next May's celebration of making it this far and still being as sexy as Sally O'Malley (see link, below.)
I'm 50 years old
Stuff--what?
Tuesday, July 9, 2013
Monday, April 22, 2013
Undid
It started setting in today physically. The muscles, the facae, the cramping and spasm of spastic nerves that somehow don't know how to turn off fight or flight. I saw a nubian princess reciting her rosary on the inbound train platform. "Hail Mary, full of grace, let me and all I know come home with all of our limbs tonight."
Today, at the time of the first explosion one week ago, we formed at the corner of Boylston and Charles Streets, and gazed down the four blocks to the incident site, observing a moment of silence and listening to the church bells playing "Amazing Grace."
"I wonder why we didn't hear it?" one of the students asked.
"Probably because we were so high up," another replied. Thank goodness we didn't hear it. It haunts us enough already and must be a continuing nightmare for the people who did witness it.
I remember this feeling, amid all the others, in the aftermath of 9/11, looking at a photograph of one of the hijacking murderers and seeing the emptiness there--what happened to you and this kid and his brother, that you turned into monsters, and how sorry I feel for your families who most assuredly didn't see this coming but will be tainted with it forever? You were innocent little babies once, full of brown eyes and promise, and now you are dead or as good as.
People want to make some kind of definitive statement about all this, wrap it up with a bow, outlined what we've learned. But I already knew how good most people are in times of crisis and we do an injustice by not allowing ourselves time to think and feel our fear, our horror, our pain. There's not a damn thing wrong with feeling all of this deeply even if you weren't directly involved. If you have a heart, you were wounded.
I don't have anything new to offer. I feel awful and will for a while until I don't. Synapses will misfire until they calm again. I'll hold loved ones close and be a little kinder for a while. There will be shop therapy, and a few hard ciders, and some serious nap time to cope.That's all that can be done.
Today, at the time of the first explosion one week ago, we formed at the corner of Boylston and Charles Streets, and gazed down the four blocks to the incident site, observing a moment of silence and listening to the church bells playing "Amazing Grace."
"I wonder why we didn't hear it?" one of the students asked.
"Probably because we were so high up," another replied. Thank goodness we didn't hear it. It haunts us enough already and must be a continuing nightmare for the people who did witness it.
I remember this feeling, amid all the others, in the aftermath of 9/11, looking at a photograph of one of the hijacking murderers and seeing the emptiness there--what happened to you and this kid and his brother, that you turned into monsters, and how sorry I feel for your families who most assuredly didn't see this coming but will be tainted with it forever? You were innocent little babies once, full of brown eyes and promise, and now you are dead or as good as.
People want to make some kind of definitive statement about all this, wrap it up with a bow, outlined what we've learned. But I already knew how good most people are in times of crisis and we do an injustice by not allowing ourselves time to think and feel our fear, our horror, our pain. There's not a damn thing wrong with feeling all of this deeply even if you weren't directly involved. If you have a heart, you were wounded.
I don't have anything new to offer. I feel awful and will for a while until I don't. Synapses will misfire until they calm again. I'll hold loved ones close and be a little kinder for a while. There will be shop therapy, and a few hard ciders, and some serious nap time to cope.That's all that can be done.
Wednesday, February 20, 2013
Erica America
 |
| My Sweetie Pie |
On June 1st, my sweetie pie niece, my baby, Erica, will graduate from high school. The day that she was born 20 Novembers ago, my brother called to tell me that she'd been born and then called 10 minutes later with tears in his throat to tell me that she had Down's Syndrome. I cried hard for 10 minutes in my bosses' office and then I did some research. Even then, there were lots of words like "retardation" and "limitations" and the whole family mourned our dashed expectations for this first child, grandchild and niece. But like so many experiences in life, I didn't have a clue. From the moment I met my little Boo Boo when she was three months old, she's had a hold o' my heart.
Like so many people who are labeled early on, Erica defies expectation. She and I bonded over songs like the Name Game, a love of toast, a passion for floating in swimming pools and sheer cheeky mischeiviousness. She learned how to play her videos on the VCR early on and memorizes lines of dialog. She's survived some congenital abnormalities including a broken neck. She won a gold medal running in the Special Olympics. She's a cheerleader on a Down's Syndrome cheerleading team. When we speak on the phone she says "Hi Jo Jo," and then listens to me chatter and laughs and laughs. She loves her long hair and necklaces and long dresses and she loves to snatch my glasses off. Because her parents are wise and strong she's developed a lot of independent skills that were probably unthinkable a generation ago.
I remember that early research which read that people with Down's Syndrome have sweet dispositions--what an understatement. Erica is the most loving person I know. When we see each other, our joy is mutual and contagious. And though it's still painful to contemplate what her life would have been like if she'd been "normal", I can't imagine it would be more full of love.
So when someone asked me recently what a Down's Syndrome kid would understand about graduating from high school, I couldn't put my finger on exactly what Erica will understand about the ceremony or it's implications. But what she will understand is that her family is gathered about her, she is being celebrated along with her friends, she gets to wear her pretty clothes (and maybe some lip gloss), and that she is very, very loved.
And we'll sing!
Erica America and JoJo
Saturday, December 29, 2012
JoJo Unchained
I still don't understand why we expect movies that take on historical subjects to be historically accurate or that the film makers have some responsibility to the groups represented. Film is art. Art is subjective, which is why it's so powerful and so necessary.
Here's why I saw "Django," Quentin Tarantino's new film about a slave hero:
1. I love Tarantino's cartoony bombast and high moralizing that usually results in some highly satisfying revenge fantasy in most of his films.
2. Despite the protests of Spike Lee and others, I believe that, even in this way, we need to communicate that slavery was an abomination that still has us in it's thrall--witness the last election and all the racial and sexist hatred swirling around this country. 'Who was that n_____?", a line from the film, is probably something some people are still saying about our President. In this film, we see an unvarnished and brutal depiction of that recent part of our history that some would have us forget.
3. "Django" boasts a African-American male as a hero, one who fights to get his wife back. Love it. Because we haven't dealt with this part of our history and because some people are sliding back into a racially divisive mindset, we all need to see Black male heros and sheros.
Now. I was a little hesitant when I heard that the plot involves a white man, played by the amazing Christoph Waltz, enabling Django to freely begin his quest to find his wife. Once again, a white dude is the answer to a Black dude's problem. But what I found is that Django, played with restrained fury and cool by Jaime Foxx, ennobles Waltz's character and involves him fully in assisting him to right an injustice that involves him only as a human being and not as a vengeful slave. He becomes invested in Django's quest through Django's determination and his admiration of a man who's survived all attempts to snuff him out.
Of course there is a big fantasy element here as Tarantino pays homage to the spaghetti westerns of Sergio Leone adding a little sip of the Blaxplotation movies of the '70's. And Kerry Washington only gets to react to being terrorized and used, her great brown eyes sometimes her only avenue of expression--but I'd also call her more than a plot device as I never questioned Django's devotion to her.
Samuel L. Jackson plays a character that I'm sure it was a little difficult to take on but I won't spoil it for you in case you want to see it. Suffice it to say that he's his usual spot on self.
It is hard on us as human beings to witness brutality, fictional and real. We've grown away from the savagery of the jungle, the horror of the Holocaust, the psychopathic notion that one race of people was put here on earth to serve another based on a bit of melanin. But we should never try to forget these atrocities but must bear witness to them and and make sure that our progeny learns the complete history of how this country came to be what it is. Only then can we revel in the triumph of love and spirit we've created and only then will we be able to nurture it and enable all peoples of all colors to flourish.
Here's why I saw "Django," Quentin Tarantino's new film about a slave hero:
1. I love Tarantino's cartoony bombast and high moralizing that usually results in some highly satisfying revenge fantasy in most of his films.
2. Despite the protests of Spike Lee and others, I believe that, even in this way, we need to communicate that slavery was an abomination that still has us in it's thrall--witness the last election and all the racial and sexist hatred swirling around this country. 'Who was that n_____?", a line from the film, is probably something some people are still saying about our President. In this film, we see an unvarnished and brutal depiction of that recent part of our history that some would have us forget.
3. "Django" boasts a African-American male as a hero, one who fights to get his wife back. Love it. Because we haven't dealt with this part of our history and because some people are sliding back into a racially divisive mindset, we all need to see Black male heros and sheros.
Now. I was a little hesitant when I heard that the plot involves a white man, played by the amazing Christoph Waltz, enabling Django to freely begin his quest to find his wife. Once again, a white dude is the answer to a Black dude's problem. But what I found is that Django, played with restrained fury and cool by Jaime Foxx, ennobles Waltz's character and involves him fully in assisting him to right an injustice that involves him only as a human being and not as a vengeful slave. He becomes invested in Django's quest through Django's determination and his admiration of a man who's survived all attempts to snuff him out.
Of course there is a big fantasy element here as Tarantino pays homage to the spaghetti westerns of Sergio Leone adding a little sip of the Blaxplotation movies of the '70's. And Kerry Washington only gets to react to being terrorized and used, her great brown eyes sometimes her only avenue of expression--but I'd also call her more than a plot device as I never questioned Django's devotion to her.
Samuel L. Jackson plays a character that I'm sure it was a little difficult to take on but I won't spoil it for you in case you want to see it. Suffice it to say that he's his usual spot on self.
It is hard on us as human beings to witness brutality, fictional and real. We've grown away from the savagery of the jungle, the horror of the Holocaust, the psychopathic notion that one race of people was put here on earth to serve another based on a bit of melanin. But we should never try to forget these atrocities but must bear witness to them and and make sure that our progeny learns the complete history of how this country came to be what it is. Only then can we revel in the triumph of love and spirit we've created and only then will we be able to nurture it and enable all peoples of all colors to flourish.
Monday, October 15, 2012
The wolf inside
I've always thought of Lupus as the wolf inside me. In a support group early on, the moderator said that I should think of it as the wolf that walks beside me, rearing up it's head, but I can't quite buy that imagery as it swells me up like an eggplant and eats away at my bones. I just read about an English actress who documented her struggle and decline from the disease in a film called "The Wolf Within." She presented with symptoms but it took 4 years to diagnose, and, by that time, her kidneys were so damaged that there wasn't anything doctors could do. Like me, she was told that her symptoms were psychosomatic, and doctors dismissed her many symptoms as too diffuse to be a
"real disease." Most of the people I know with lupus refuse to be victimized by it, and it's the same with this young lady who chronicled her death to bring awareness to this crazy ass disease.
It's interesting, too, that she and her mother, who helped her film, talked about her personality changes--how she went from happy go lucky to anxiety ridden. This could be explained by being sick with a chronic illness, but I firmly believe that it's part of the illness--that it changes brain chemistry, too, though there isn't as much research as there should be on this subject.
Of course we try to make sense out of thing we don't understand, we humans. We try to create something out of disaster and despair, and I've seen so many inspirational people with the wolf inside do just that until their last breath and beyond. I know a woman who has the worst case of lupus the world has ever seen--the disease has affected every system in her body. The wolf gallops through her as it pleases but she's never let it own her. She laughs, and flirts and keeps everything on a positive tip, and, when I first met her, I wanted to be just like her. But I've come to recognize that my showing and sharing my sadness and despair comes with it's own kind of grace. I've been encouraged to "accept"my wolf, to become some kind of willow in the wind and bend as it runs through me.
But
I
can't.
Because it's a wolf--sly, wily, hungry, feral. One day it responds to acupuncture needles along it's back, sometimes it backs off with steroids for a few weeks, a precious month, and then there are the periods like the last six months where it paws and bites, nipping and growling, and puffing up, it's ruff standing on end. Times like now when I'm awake with the pain at 3 a.m., gritting my teeth and unwilling to break into the narcotics stash. How do you stop fighting?
"real disease." Most of the people I know with lupus refuse to be victimized by it, and it's the same with this young lady who chronicled her death to bring awareness to this crazy ass disease.
It's interesting, too, that she and her mother, who helped her film, talked about her personality changes--how she went from happy go lucky to anxiety ridden. This could be explained by being sick with a chronic illness, but I firmly believe that it's part of the illness--that it changes brain chemistry, too, though there isn't as much research as there should be on this subject.
Of course we try to make sense out of thing we don't understand, we humans. We try to create something out of disaster and despair, and I've seen so many inspirational people with the wolf inside do just that until their last breath and beyond. I know a woman who has the worst case of lupus the world has ever seen--the disease has affected every system in her body. The wolf gallops through her as it pleases but she's never let it own her. She laughs, and flirts and keeps everything on a positive tip, and, when I first met her, I wanted to be just like her. But I've come to recognize that my showing and sharing my sadness and despair comes with it's own kind of grace. I've been encouraged to "accept"my wolf, to become some kind of willow in the wind and bend as it runs through me.
But
I
can't.
Because it's a wolf--sly, wily, hungry, feral. One day it responds to acupuncture needles along it's back, sometimes it backs off with steroids for a few weeks, a precious month, and then there are the periods like the last six months where it paws and bites, nipping and growling, and puffing up, it's ruff standing on end. Times like now when I'm awake with the pain at 3 a.m., gritting my teeth and unwilling to break into the narcotics stash. How do you stop fighting?
Thursday, August 23, 2012
Adventures in Chronic Illness-heroic edition
Looky here.
If you are engaged in a chronic illness battle, don't be afraid to gird your loins for a western medicine onslaught. It is difficult to advocate for yourself when you are at your sickest and feeling scared and desperate, but you can channel those feelings into becoming your own best friend and warrior, charging the ramparts of your illness in order to get the best care available.
Some practitioners will try to tell you that your depression is contributing to your symptoms when it is the other way around. They will tell you that "maybe" your initial diagnosis isn't really true as you don't test for all of the arbitrary markers of one disease as opposed to another. They will step into the examination room with an intern and act like you are a piece of meat, a specimen to be poked and prodded. They will try to cite time limits as an excuse to not answer all of your questions. They will medicate you up the wazoo, trying to take a stab in the dark to manage your symptomology. They will "forget" your other diagnoses, or questions, or name or insurance limits and will take advantage of you being too intimidated or shy or sick to advocate for yourself.
You must be your own shining knight and you can also enlist friends and family members to assist you as reminder advocates and standard bearers. Take your friend with you to appointments. Write your questions down as they occur to you. Solicit advice from nurse practitioners who are often more compassionate and knowledgeable than some of the doctors they support. Take full advantage of your health insurance--many companies now have chronic care programs where they take a holistic approach to chronic diseases which often tend to multiply into several maladies. Create your team of doctors and insist that they communicate with each other. If they don't or won't, don't be afraid to say "you're fired" more than Donald Trump does on a season's worth of The Apprentice.
The initial diagnostic process can be the scariest time in your life, especially if your symptoms are diffuse. Western medicine sees itself as an exact science and many doctors have a difficult time dealing with patients who present with a range of symptoms that don't fit into a traditional paradigm. If your doctor seems to give up or tells you "I'm not sure what to do," Donald Trump him/her and ask a medical practitioner that you trust to recommend someone who is going to work with and for you no matter what. Once you do have a diagnosis, solicit advice from online resources about support groups and doctor recommendations. Many disease websites have excellent advice about coping, what questions to ask, and what medical practitioners in your area are highly rated in treating your ailment. And don't let your fear keep you from asking for second opinions. Find out about experts in the field in treating your illness and ask your doctor to refer you to them for a consultation. Ask friends and family to keep up on the latest research and clinical trials.
Managing a chronic illness can seem like a full time job. There are emotional ramifications and disease causing depression. Enlist a therapist or social worker to help you with stress, family issues, and self-advocacy. They can also be very helpful in educating friends and family about the disease itself and about your needs. People who love you will want to help, both because they care about you and to alleviate their own feelings of helplessness. LET THEM.
And, finally, explore alternative treatments. Try acupuncture. Get tested for food and other allergies.
Explore reiki, tai chi, cranio sacral healing, swim therapy or one of the many other healing and stress reduction modalities available. Identify or continue a fun hobby that brings you joy
Dealing with a chronic illness can be a wonderful opportunity to identify what is most important to you in life. It can have a rich silver lining and definitely affords you the opportunity to become your own best friend. Take up your sword and shield, saddle your steed, and charge into the fray.
If you are engaged in a chronic illness battle, don't be afraid to gird your loins for a western medicine onslaught. It is difficult to advocate for yourself when you are at your sickest and feeling scared and desperate, but you can channel those feelings into becoming your own best friend and warrior, charging the ramparts of your illness in order to get the best care available.
Some practitioners will try to tell you that your depression is contributing to your symptoms when it is the other way around. They will tell you that "maybe" your initial diagnosis isn't really true as you don't test for all of the arbitrary markers of one disease as opposed to another. They will step into the examination room with an intern and act like you are a piece of meat, a specimen to be poked and prodded. They will try to cite time limits as an excuse to not answer all of your questions. They will medicate you up the wazoo, trying to take a stab in the dark to manage your symptomology. They will "forget" your other diagnoses, or questions, or name or insurance limits and will take advantage of you being too intimidated or shy or sick to advocate for yourself.
You must be your own shining knight and you can also enlist friends and family members to assist you as reminder advocates and standard bearers. Take your friend with you to appointments. Write your questions down as they occur to you. Solicit advice from nurse practitioners who are often more compassionate and knowledgeable than some of the doctors they support. Take full advantage of your health insurance--many companies now have chronic care programs where they take a holistic approach to chronic diseases which often tend to multiply into several maladies. Create your team of doctors and insist that they communicate with each other. If they don't or won't, don't be afraid to say "you're fired" more than Donald Trump does on a season's worth of The Apprentice.
The initial diagnostic process can be the scariest time in your life, especially if your symptoms are diffuse. Western medicine sees itself as an exact science and many doctors have a difficult time dealing with patients who present with a range of symptoms that don't fit into a traditional paradigm. If your doctor seems to give up or tells you "I'm not sure what to do," Donald Trump him/her and ask a medical practitioner that you trust to recommend someone who is going to work with and for you no matter what. Once you do have a diagnosis, solicit advice from online resources about support groups and doctor recommendations. Many disease websites have excellent advice about coping, what questions to ask, and what medical practitioners in your area are highly rated in treating your ailment. And don't let your fear keep you from asking for second opinions. Find out about experts in the field in treating your illness and ask your doctor to refer you to them for a consultation. Ask friends and family to keep up on the latest research and clinical trials.
Managing a chronic illness can seem like a full time job. There are emotional ramifications and disease causing depression. Enlist a therapist or social worker to help you with stress, family issues, and self-advocacy. They can also be very helpful in educating friends and family about the disease itself and about your needs. People who love you will want to help, both because they care about you and to alleviate their own feelings of helplessness. LET THEM.
And, finally, explore alternative treatments. Try acupuncture. Get tested for food and other allergies.
Explore reiki, tai chi, cranio sacral healing, swim therapy or one of the many other healing and stress reduction modalities available. Identify or continue a fun hobby that brings you joy
Dealing with a chronic illness can be a wonderful opportunity to identify what is most important to you in life. It can have a rich silver lining and definitely affords you the opportunity to become your own best friend. Take up your sword and shield, saddle your steed, and charge into the fray.
Thursday, August 2, 2012
Victorious
Not long ago I won a case against the government. They said that I'd been paid over $38,000 in disability benefits that I wasn't entitled to by working more hours than were allowed under the terms of Social Security Disability. I never thought trying to get healthy and work as much as possible would
result in the stress and fear of five years having this hanging over my
head. I got an excellent disability lawyer who stayed with me through 5 years of paperwork and bullshit, we went to appear before a judge and he ruled in my favor. I should have had a champagne filled celebration right then, but I was so worn out by the whole thing--imagine having the government of your country send you a bill for $38,000 every few months and accusing you of misusing a system that they make almost impossible to use in the first place--and there were other life events that came up so that I never got around to celebrating winning a case against the government, in a realm where most cases are lost.
This $38,000 charge is still on my credit report and I'm working to have it cleared as well, and ready to consider some serious adjudication if it interferes with me gaining employment. So the fight continues. Not only am I not liable for this money, the judge made it clear that I never owed it in the first place. I'm just starting to realize what a toll it took on my mental and physical health, the same health that the Social Security Disability system is suppose to give leave to improve.
Basically, the way the system is set up now, you have to be really ill for six months and unable to work in order to apply. I was lucky in that I had private disability insurance at the time and they have a whole team of lawyers who manage the application process so that they can mitigate their costs. Once you are approved it may take another six months for your benefits to begin. Among those benefits is access to the Medicare system, which would have come in handy during the first year of illness where I was paying exorbitant health insurance premiums. Most people are not approved the first time because a Reagan era rule says "most people are fakers." This is the point where most people either get a disability lawyer or give up. Imagine--you are so sick that you cannot work--and you have to hire a lawyer to manage a process whereby the system that you've been paying into for many years decides whether or not they are going to assist you to get back on your feet. It's LUDICROUS, vicious, cruel, and generates so much red tape that oftentimes paperwork is lost and the social security employees you meet are overburdened, burnt out and surly.
Once I was approved and started to receive benefits, I was subject to a quarterly review process that involved lots of paperwork for my poor but wonderful doctors to prove that I was still too sick to work. I also had to write anecdotal screeds to say how sick I truly was and what my days were like and they were bleak, I can tell you. When you are that sick, it's undermining in the extreme to have to keep proving it. You're already doubted by family members, friends, and society, especially if you have an illness that doesn't look like what people think illnesses should look like--invisible symptomology. But I dutifully complied, writing about the grossest of body processes, the depression and isolation, the utter humiliation of not feeling as though I could take care of myself.
Several times, SSDI said they didn't receive my paperwork and threatened to cut off my benefits, but I'd send everything by certified mail so that I had proof of their receipt. A good lesson when dealing with any large organization with which you correspond.
Finally, I started to feel a little better through massive effort, 8-12 medications, pain therapy and my momma's prayers. I decided that I wanted to start working part time. Around the same time, SSDI offered a back to work program that I was thrilled to discover sounded pretty humane. You would be able to work part time for a number of months and make as much money as you could while still retaining benefits. If you relapsed during this period, you could start the whole period over again so as to ease your way back into work. I enrolled in this program and was set up with a person in a nearby town who was to monitor my progress. I ended up showing up at his doorstep for 3 appointments before I gave up and enrolled in the program on my own. I was fortunate to find part time work and kept track of my wages and expenses to make sure that I was within the SSDI work guidelines.
SSDI continued to say they'd lost paperwork, hadn't received my Medicare premium payments, and once went 6 months without passing these payments along to my HMO. I gritted my teeth and carried on. There were several months that I was ill and couldn't work my full complement of hours, and I dutifully made sure SSDI knew about it and started to count the months over again.
In early 2006 I received communication from SSDI saying that I owed them $38,000 for benefit overpayments that occurred when I thought I was still within the guidelines, and they said I'd never informed them that I returned to work. Again, thank you certified mail--they'd signed for the letter I wrote them and had enrolled me in the back to work program.
I started to get really scared. I'd known there was a level of incompetence at SSDI, but when your federal government says you owe more than you've been able to earn in the past decade, it's very, very frightening. And I prided myself on keeping track of things, even in the throes of great discomfort, even after long hospitalizations. I felt like I was fighting against a warlord and all his hoards with a broken bow and arrow. And, to make matters worse, my benefits were abruptly suspended causing me to have to rely on family, to my horror, to be able to stay even moderately independent.
Oy.
A friend recommended a wonderful disability lawyer who actually took the case. Most lawyers won't take an overpayment case because they take so long, the odds are so long that you'll actually win, and the pay is minimal since they are representing people who are too sick to work full time. This lady was the exception, though she made it clear to me what a crap shoot these cases were--some folks won who plainly shouldn't have, and some people in the most dire of circumstances ended up paying miniscule monthly amounts for the rest of their lives to address to the overpayment. And this kind of debt, once adjudicated, cannot be discharged by bankruptcy. You can spend your money and time to appeal until they reverse the decision or until you expire and how grand a process that would be.
As the wheels of the bloated buracracy turned over the next 4 years I was paralyzed by fear. I was afraid to make too much money because it's better for the case to continue to be disabled, and I was afraid to make any kind of move financially or physically. The stress didn't exactly help my recovery, either, so by the time we got a court date (which was twice moved, and finally took place on the day I was to have gone on a long vacation with my family, but I ain't complaining too much) I was a wreck.
My lawyer's partner, a pert little thing with a glittering smile, met me at the courthouse and we went into the judge's chambers.
The judge was an ancient and sat on a high podium while we sat at a table in front of him. He was sat so high up that I had to crane my neck a little to see him. I'd made up my mind that I wasn't going to whine or cry, or further debase myself any more than my illness already had, so I told my story succinctly. My only objective was and is to get healthy and to work, to be fully independent again. He'd obviously gone through all of the paperwork and he asked some very astute questions. He also complimented me on sending certified mail as it showed a paper trail of many of the items SSDI said it had never received (thanks, Momm!) Finally he said to me: "Didn't you know you were being overpaid?"
"I was not overpaid, your honor," I said. "I felt I was well within the rules as I understood them."
"Okay, young lady," he said, "I'll write my decision within the week." As my lawyer and I emerged from the building I tried to eke up some relief but none was forthcoming. I'd lived under this cloud for many years and it's weight isn't so easily shed.
And, of course, it took 3 months for the decision to be rendered and sent out. And then three separate but identical letters showed up in my mailbox over a week's period, each stating that the judge had decided that I did not owe the overpayment. It was hard to believe and I didn't really believe it until my lawyer called me in jubilation to make sure that I knew. We won, we won, we won!
But the toll it took and continues to take. The fear and anxiety and stress have been hard to shake and I certainly am loathe to re-apply for benefits even if I'd need them in future. And there is the credit report to deal with.
So the cost to my health and my family and friends who worried with me is much more than $38,000.
But what I'm most mad about is not the feeling of needless victimization, of my family's money spent on lawyers fees, of the sleepless nights worrying that I'd spend the rest of my life trying to pay off a debt I didn't owe--it's that people who are sick, really sick, and certainly a lot sicker than I was, well meaning people who have worked hard and don't have the backing of the government that they pay to support in their time of need. I wish our legislators could spend just one day feeling as helpless and diminished as I did. I wish Mr. Che of the Somerville Social Security office had taken one moment to feel some empathy instead of spitting at me and others who were far less capable than I to deal with his nastiness. (He's since been let go and the office has shut down. Huzzah!) I wish Ronald Reagan had to spend one day trying to decide between buying medication or having enough to eat. If not for my family, I would have soon been homeless and my heart aches for those who weren't as fortunate.
Our government is suppose to be what we turn to when we need to make a way out of no way. That's what the disability program is supposed to be about. And I find that I'm still afraid, that I'm still waiting for some other part of the sky to fall--and that's no way for any one to live.
This $38,000 charge is still on my credit report and I'm working to have it cleared as well, and ready to consider some serious adjudication if it interferes with me gaining employment. So the fight continues. Not only am I not liable for this money, the judge made it clear that I never owed it in the first place. I'm just starting to realize what a toll it took on my mental and physical health, the same health that the Social Security Disability system is suppose to give leave to improve.
Basically, the way the system is set up now, you have to be really ill for six months and unable to work in order to apply. I was lucky in that I had private disability insurance at the time and they have a whole team of lawyers who manage the application process so that they can mitigate their costs. Once you are approved it may take another six months for your benefits to begin. Among those benefits is access to the Medicare system, which would have come in handy during the first year of illness where I was paying exorbitant health insurance premiums. Most people are not approved the first time because a Reagan era rule says "most people are fakers." This is the point where most people either get a disability lawyer or give up. Imagine--you are so sick that you cannot work--and you have to hire a lawyer to manage a process whereby the system that you've been paying into for many years decides whether or not they are going to assist you to get back on your feet. It's LUDICROUS, vicious, cruel, and generates so much red tape that oftentimes paperwork is lost and the social security employees you meet are overburdened, burnt out and surly.
Once I was approved and started to receive benefits, I was subject to a quarterly review process that involved lots of paperwork for my poor but wonderful doctors to prove that I was still too sick to work. I also had to write anecdotal screeds to say how sick I truly was and what my days were like and they were bleak, I can tell you. When you are that sick, it's undermining in the extreme to have to keep proving it. You're already doubted by family members, friends, and society, especially if you have an illness that doesn't look like what people think illnesses should look like--invisible symptomology. But I dutifully complied, writing about the grossest of body processes, the depression and isolation, the utter humiliation of not feeling as though I could take care of myself.
Several times, SSDI said they didn't receive my paperwork and threatened to cut off my benefits, but I'd send everything by certified mail so that I had proof of their receipt. A good lesson when dealing with any large organization with which you correspond.
Finally, I started to feel a little better through massive effort, 8-12 medications, pain therapy and my momma's prayers. I decided that I wanted to start working part time. Around the same time, SSDI offered a back to work program that I was thrilled to discover sounded pretty humane. You would be able to work part time for a number of months and make as much money as you could while still retaining benefits. If you relapsed during this period, you could start the whole period over again so as to ease your way back into work. I enrolled in this program and was set up with a person in a nearby town who was to monitor my progress. I ended up showing up at his doorstep for 3 appointments before I gave up and enrolled in the program on my own. I was fortunate to find part time work and kept track of my wages and expenses to make sure that I was within the SSDI work guidelines.
SSDI continued to say they'd lost paperwork, hadn't received my Medicare premium payments, and once went 6 months without passing these payments along to my HMO. I gritted my teeth and carried on. There were several months that I was ill and couldn't work my full complement of hours, and I dutifully made sure SSDI knew about it and started to count the months over again.
In early 2006 I received communication from SSDI saying that I owed them $38,000 for benefit overpayments that occurred when I thought I was still within the guidelines, and they said I'd never informed them that I returned to work. Again, thank you certified mail--they'd signed for the letter I wrote them and had enrolled me in the back to work program.
I started to get really scared. I'd known there was a level of incompetence at SSDI, but when your federal government says you owe more than you've been able to earn in the past decade, it's very, very frightening. And I prided myself on keeping track of things, even in the throes of great discomfort, even after long hospitalizations. I felt like I was fighting against a warlord and all his hoards with a broken bow and arrow. And, to make matters worse, my benefits were abruptly suspended causing me to have to rely on family, to my horror, to be able to stay even moderately independent.
Oy.
A friend recommended a wonderful disability lawyer who actually took the case. Most lawyers won't take an overpayment case because they take so long, the odds are so long that you'll actually win, and the pay is minimal since they are representing people who are too sick to work full time. This lady was the exception, though she made it clear to me what a crap shoot these cases were--some folks won who plainly shouldn't have, and some people in the most dire of circumstances ended up paying miniscule monthly amounts for the rest of their lives to address to the overpayment. And this kind of debt, once adjudicated, cannot be discharged by bankruptcy. You can spend your money and time to appeal until they reverse the decision or until you expire and how grand a process that would be.
As the wheels of the bloated buracracy turned over the next 4 years I was paralyzed by fear. I was afraid to make too much money because it's better for the case to continue to be disabled, and I was afraid to make any kind of move financially or physically. The stress didn't exactly help my recovery, either, so by the time we got a court date (which was twice moved, and finally took place on the day I was to have gone on a long vacation with my family, but I ain't complaining too much) I was a wreck.
My lawyer's partner, a pert little thing with a glittering smile, met me at the courthouse and we went into the judge's chambers.
The judge was an ancient and sat on a high podium while we sat at a table in front of him. He was sat so high up that I had to crane my neck a little to see him. I'd made up my mind that I wasn't going to whine or cry, or further debase myself any more than my illness already had, so I told my story succinctly. My only objective was and is to get healthy and to work, to be fully independent again. He'd obviously gone through all of the paperwork and he asked some very astute questions. He also complimented me on sending certified mail as it showed a paper trail of many of the items SSDI said it had never received (thanks, Momm!) Finally he said to me: "Didn't you know you were being overpaid?"
"I was not overpaid, your honor," I said. "I felt I was well within the rules as I understood them."
"Okay, young lady," he said, "I'll write my decision within the week." As my lawyer and I emerged from the building I tried to eke up some relief but none was forthcoming. I'd lived under this cloud for many years and it's weight isn't so easily shed.
And, of course, it took 3 months for the decision to be rendered and sent out. And then three separate but identical letters showed up in my mailbox over a week's period, each stating that the judge had decided that I did not owe the overpayment. It was hard to believe and I didn't really believe it until my lawyer called me in jubilation to make sure that I knew. We won, we won, we won!
But the toll it took and continues to take. The fear and anxiety and stress have been hard to shake and I certainly am loathe to re-apply for benefits even if I'd need them in future. And there is the credit report to deal with.
So the cost to my health and my family and friends who worried with me is much more than $38,000.
But what I'm most mad about is not the feeling of needless victimization, of my family's money spent on lawyers fees, of the sleepless nights worrying that I'd spend the rest of my life trying to pay off a debt I didn't owe--it's that people who are sick, really sick, and certainly a lot sicker than I was, well meaning people who have worked hard and don't have the backing of the government that they pay to support in their time of need. I wish our legislators could spend just one day feeling as helpless and diminished as I did. I wish Mr. Che of the Somerville Social Security office had taken one moment to feel some empathy instead of spitting at me and others who were far less capable than I to deal with his nastiness. (He's since been let go and the office has shut down. Huzzah!) I wish Ronald Reagan had to spend one day trying to decide between buying medication or having enough to eat. If not for my family, I would have soon been homeless and my heart aches for those who weren't as fortunate.
Our government is suppose to be what we turn to when we need to make a way out of no way. That's what the disability program is supposed to be about. And I find that I'm still afraid, that I'm still waiting for some other part of the sky to fall--and that's no way for any one to live.
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