Note: I began writing this post on Monday. Then in the middle of it, I learned that Robin Williams had killed himself, and then nothing made sense any more…….
“Perhaps—I want the old days back again and they’ll never come back, and I am haunted by the memory of them and of the world falling about my ears.” ~ Margaret Mitchell, from Gone With the Wind
Monday afternoon. Cloudy and probably rain, 84 degrees.
Last night’s super moon was spectacular. I’m so glad that the clouds didn’t overshadow it. When I got up to let the dogs out, the entire backyard was awash in moonlight. So incredibly perfect.
The other day, I saw something I’ve never seen before: a buzzard was hanging out in someone’s front yard, munching on something . . . well, dead. Brett and I drove by, and he said, “Hey, that’s a buzzard!”
Of course I had missed it, so I drove around the block and then slowed as we neared the yard in which Brett had seen the bird. I saw it, and it was huge. Unfortunately, it heard the car and took flight. My, those wings, so massive. It was really something to see; we couldn’t have been more than twelve feet from it. I mean, I’ve seen them in the air, but never this close, and this still.
The other cool thing that happened is that Brett and I went thrifting, and I found a set of glass fish snack plates. I only have one fish plate left, and I’ve never had the snack size (about 5 inches wide), so I grabbed them. A while back I had looked on E-bay, and a set of two of the large fish plates was going for $30. Too pricey. I got eight of the small ones for $20. Such a deal.
Of course, to balance the two good things are two horrendous dreams: In both dreams, I see fire burst through a wall, and I immediately wake up—same image for both dreams, same reaction for both dreams. It has me more than a little paranoid, checking cords and connections, making sure nothing is frayed or a hazard. This particular scenario really has me unnerved.
“Later I’ll sweep away the nest—empty,
again, of everything but a blind
belief in the possible.” ~ Peter Everwine, from “Another Spring”
In spite of the fire dreams, I’m feeling pretty good, and I suppose I have good reason: Social Security has finally, finally approved my disability claim. As a brief refresher, I was first forced out on disability in October 2007. I’ve been fighting with social security ever since.
I know that I am fortunate that I was covered for long-term disability through George Washington’s policy, but the endless fight with Social Security has taken a toll on me. I’ve lost count of how many times I’ve filled out the same forms, answered the same questions, had the same interviews. So even though they wanted to date it retroactive to November 15, 2012, I decided to accept.
When I asked the lawyer why that particular date, she said that they noticed from my therapy notes that I had taken a real downturn at that time . . .
No kidding. Really? How incredibly astute of them, she said, with more than a trace of bitter sarcasm . . .
What this means is that I don’t quality for Medicare until May of next year (for some reason, dates, times, confusing). And the backdated benefits that I’ll receive all have to be paid to my long-term disability carrier anyway (it’s part of the agreement), so the date doesn’t affect me that much. The irony is that the effective date would have meant so much a few years back when Corey was unemployed, and we were struggling, really struggling to keep my health insurance and a roof over our heads.
I have thought long and hard about the following. This is the part of the application that might be a throwaway. I’m not really sure that anyone at SSA will read this, but I’ve decided that I’m going to print it and send it in along with my standard answers to their questionnaire. If nothing else, it will make me feel better.
To the Social Security Administration:
You asked me to complete the attached form to include any information that may be useful in helping you to determine whether or not I qualify for Social Security benefits. I remember 24 years ago completing another form for another faceless bureaucracy that wanted to know if I had any additional information regarding my daughter’s death that may assist in processing our health insurance claims. At that time, I began another page in much the same way: “You ask me . . .”
That answer turned into an essay that encompassed much that had happened in those four harrowing months of my life. Tonight, I will try to encompass the significant things that have happened to change my life in the last nine years (give or take a year, here or there).
You may notice that I have taken quite a while to complete this questionnaire this time (yes, I have completed this same questionnaire two or three other times). You see, I wanted to take the time to make everything as crystal clear for you as possible. The last judge to rule on my case depended upon an unnamed woman who sat in on my hearing and said that I could go back to work as a marketing director or sales manager (in her humble opinion). The lawyer representing me at the time very gently squeezed my hand, and I bit my tongue. I could sense that anything else that I might have to add was simply deemed irrelevant at that point. And not too surprisingly, I was denied benefits.
But now? Now I want to tell you how very much my life has changed since the morning I woke up and could not stand, the morning on which I found that I could not walk the few feet to the bathroom. It was the most agonizing pain I have ever felt, and that’s saying something as I have given birth four times, once without any pain medication. I was told, after some tests, that I had a herniated disk. I was given medication, sent to a pain management specialist, and referred to physical therapy. In time, I was able to move again, but I was never again pain-free. Little things could set it off: stretching the wrong way, carrying something too heavy, lifting a stack of books.
You know those charts that doctors show you on which there are 10 circles with various expressions on their faces, with 1 being no pain and 10 being excruciating pain? Well, most people are fortunate enough to walk around in the one to two category. I am never below a 3, which I believe ranks as extreme discomfort. Most of the time—and please believe me when I say that I am not exaggerating—I exist at a 5. I have been very close to a ten, and on days on which I find that I cannot leave my bed, I hover around a 7 or 8.
Now let me pause. You are probably thinking to yourself, “This woman has a flair for the dramatic.”
Well, you wouldn’t be wrong about that; however, I am actually not dramatizing anything contained herein. I said that I was going to tell you how my so-called disability affects my quality of life, and that’s exactly what I’m doing.
Remember the woman who said that I could easily resume one of my former careers? Well, let’s take the Marketing Director position that I had. In that particular job, I routinely had to tote framed floor plans and site plans to empty sales offices in which I was then responsible for installing all sales materials. I also had to carry brochures (routinely 100 copies at a time) to and from sites. I carried large mailing to our distribution center. In other words, I carried around a lot more than the equivalent of a five-pound bag of flour.
The sales manager position? That’s just laughable. In that particular job I never sat down, well, make that almost never. I walked up and down three floors, moved full racks of clothes (not on wheels, mind you), hauled boxes filled with merchandise, and installed displays. In other words, lifting, carrying, bending, stretching, and a lot of walking.
My other positions? As a university instructor I regularly carried at least two carryalls filled with books and papers to grade. As an education specialist, I had to cart a laptop, a projector, catalogs, informational materials, an expandable banner, and various accoutrement to each informational session that I conducted, some of which were in Richmond. In this same position I routinely had to drive up and back to Washington D.C. in a day for marketing meetings. It was because of the demands of this particular position that I finally gave in and had the operation on my back, a decision that I will forever regret as ever since having that operation I have not lived one day without pain. The operation did not ease my pain; it increased it.
This little essay could actually be called “The Things She Carried.” Humor. Forgive me.
Back to the answer: Before I hurt my back, I could get by easily on five to seven hours of sleep. I used to awaken at 5 a.m., work out for at least half an hour, do a load of laundry, get ready for work, transport my kids to school, work all day, come home, fix dinner, maybe do more laundry, help with homework, and sometimes fit in a trip to the grocery store. I was actually quite strong for my size. At one time, I worked out five days a week and took a yoga class on Saturday mornings. I used to walk three miles in the morning. Every Saturday for years I would wake up and clean my entire house: scrub all of the floors, vacuum, change the linens, polish the furniture. My house was immaculate.
Some of my hobbies included hiking the Virginia foothills, toting around photographic equipment, and kayaking in the Back Bay. I loved to garden and do backyard birding. I used to collect paper samples from paper companies which I used to make personalized books for my family members. I used to change the oil in my car and regularly detail my vehicle inside and out. I have painted the inside and outside of my house, and I have hung wallpaper. I know how to change an electric socket or a light fixture, but I can no longer bend long enough to do so.
That was then.
Today, my life is more like this: I sleep at least 10 hours a day, that is if I’m not going through one of my insomnia bouts. I haven’t been to a gym in years. I haven’t taken a yoga class in almost a decade. I cannot walk distances or climb stairs. I cannot carry anything weighing more than ten pounds. I cannot kneel without great pain.
I can take care of my own hygiene, and for that I am very thankful. I can cook occasionally, but standing for hours to chop and process many dishes for a big meal is beyond my capabilities. I do laundry as long as someone else carries it to and from the washer and dryer. I cannot go grocery shopping by myself as I cannot load or unload the bags. I can sit at this computer for small stretches, but if I forget to get up regularly, I find my back frozen. My wrists hurt all of the time, but it’s not carpal tunnel; my pain doctor says that it’s directly related to the nerve bundles in my neck, which feel like large walnuts at any given time. My left shoulder has frozen twice.
Each month, or when I can afford it (not the same thing), I get at least 10-15 trigger point injections from my neck to my buttocks to try to loosen some of the muscles. I do not get massages as I cannot afford them. I have to take muscle relaxers all day and night just to exist.
By the way, it was taking these medications that gave my former employer cause for concern as I fell asleep at my desk from exhaustion one morning. They were concerned that I might fall asleep behind the wheel during the 26 mile commute to and from work. When I was referred to the proper channels about getting an accommodation at work for my condition, after review I was told that I would have to go out on disability. This was not something that I chose. If it had been up to me I would have probably tried to keep working for at least a few more years. Why? Because I loved having a career. Because not working at all after working since I was 15 has done quite a number on my mental health and self-esteem.
Along with the muscle relaxers and pain medication, I have to take antidepressants and anti-anxiety medicine. I take medicine to help me sleep. I take medicine for my cholesterol and blood sugar, both of which are high because I cannot exercise, even though I have given up sugar and altered my diet substantially. I take medicine for my thyroid and medicine for my GERD. And I haven’t even gotten to the migraines yet.
Ah yes, the migraines, which I have suffered since I was in my teens. I have been on so many medications for my migraines that I have truly lost count. The one medicine that did help caused my hair to fall out and really messed up my ability to think linearly or remember anything beyond my name. Now I take something to relieve the pain when it hits, but I can’t take it more than twice in one day, and I was told that after the first day, it’s really not effective, which is a bitch since my migraines last for days. The longest one lasted for weeks, no lie. They thought I might have a tumor. Luckily, it was just a migraine.
I have been somewhat fortunate in that my former employers all understood that extended exposure to overhead lighting triggers migraines, not that I didn’t catch grief for it. It is a little harder to explain to an employer who has never had a migraine why it’s impossible to look at a computer screen when in the midst of an episode. I suffer from what is called something akin to multi-headache syndrome: sinus headaches, stress headaches, and migraines. Oh, that pain level thing again as regards the headaches? Well today’s migraine was a solid 7. If it’s not the intensity, then it’s the frequency and/or longevity.
So how has all of this affected the quality of my life? How hasn’t it would be a more fitting question. My family members have all learned to keep their voices down when I have a headache. They all know that sometimes it is impossible for me to go somewhere as planned because of pain. If I go to a movie, I have to take a pillow so as to sit comfortably for a few hours. I can’t eat certain foods that trigger migraines. And my health insurance and medication costs eat up a big chunk of the family budget.
How has it affected me? I am a completely different woman, sometimes, a woman I don’t know, a woman with weaknesses she never had, a woman with limitations she never knew, a woman without a career after a lifetime of hard work, a woman with almost no retirement savings and small prospects for the future. I used to have an active social life, went to museum openings, symphonies, concerts; now my family wishes that I would leave the house more.
How has it affected me? I’m not entirely sure that I can answer this question to your satisfaction. You see, you don’t know me, and I don’t know you. You don’t know the person I was nor the person I have become. The person I was would have never chosen to answer this questionnaire in this manner, too embarrassing. That person was self-assured, successful, and smart. She thrived on stress, loved to learn new things, and welcomed challenges. This person? I’m not even sure that I would want to know her.
“Don’t bend; don’t water it down; don’t try to make it logical; don’t edit your own soul according to the fashion. Rather, follow your most intense obsessions mercilessly.” ~ Franz Kafka
Tuesday afternoon. Hazy, hot, and humid.
Long time no write, eh? Well we were in Ohio for Corey’s brother’s wedding. We left last Wednesday and got home in the wee hours of Monday morning. I’m happy to say that the road trip was incredibly uneventful, no car trouble, no flat tires, no engines blowing up on the side of a mountain. This time we did the smart thing and rented a car, thanks to Corey’s Aunt Judy who funded the trip. And it’s a good thing, too, that we didn’t take the Rodeo as it broke down last night in the Wal-Mart parking lot; the battery light had been coming on, so we had to buy a battery, and a hose burst. So glad that happened here and not on the road.
It was a Nissan Altima. Very nice, comfortable, and incredibly smooth ride, not to mention good on gas. We made it up and back in record time, too—about 11 hours, which is a nice change from our last trip which was 26 hours during a blizzard. The Tom Tom that Corey’s parents gave him for his birthday last year helped with the timing as it plotted the shortest route (time-wise). Technology can be a wonderful thing.
We took Tillie with us this time. We actually hadn’t planned to take her, but when we were loading the car, she jumped into the back seat and looked at us like “Well?” Very unusual for her as she is not a car dog. She was a bit restless on the way up, but slept soundly on the way home.
Anyway, the visit was very nice. Corey’s sister gave me a much needed hair cut, long layers everywhere, and about three inches off the length. We saw a lot of the family at the wedding, which was a casual outdoor affair, quite lovely really. I am so happy for Chad that he has found a very sweet woman and that their extended family gets along well. All of the nieces and nephews have grown so much. No one is little anymore. I know that Corey really enjoyed himself, so all in all, I would have to say successful road trip.
“I saw myself, heard myself, felt myself, not write—and yet even then knew perfectly both that I should be writing now and that I should now be sorrier than ever for my not writing then.” ~ Henry James, letter to Charles Eliot Norton, December 26, 1898
I had thought about writing a few posts while I was in Ohio, but I just wasn’t up to it. I was saving my energy so that I wouldn’t be a blob at the wedding and when we went visiting. But that meant no writing, which made me a bit antsy. Maybe one day we’ll have a laptop again, and I’ll be able to write on the road.
My fluffy boy Shakes was happy to see me. He hasn’t left my side since we got home. Eamonn slept in our bed while we were gone, so the Jack Russells weren’t too lonely.
Corey’s boss had scheduled him for a first shift on Monday, which simply wasn’t possible, so he lost that one. But then his boss turned around and gave him two shifts today, first and third, which makes up for the lost shift, but such a full day for him as he also has class tonight. He’s signed up for two classes this fall, and I think that we’ve done all of his paper work, so he and Brett are good to go, that is until I have to buy books, which means lots of Internet searching for the best prices.
Eamonn is another story. He’ going to do two classes this fall, but he lost his financial aid for a semester because of his GPA. I’ve told him that we’ll pay for these two classes, but he must do well. He wants to get into the radiation technology program, and the application must be submitted by December. He really needs to get at least B’s, preferably A’s to get his GPA back up. It would really be a shame if he didn’t get into this program, especially since his dad knows the person in charge. I told Eamonn that this program would be his ticket to independence: There is always a need for radiation technicians in hospitals and doctors’ offices. If he’s serious about getting his own place and being independent, then he needs to be practical.
Here’s hoping . . .
“Maybe the fear is that we are less than we think we are, when the actuality of it is that we are much much more.” ~ Jon Kabat-Zinn, Arriving at Your Own Door: 108 Lessons in Mindfulness
So aside from our travels, life is much the same. The kiddies all survived just fine while we were gone, although there were a few hiccups over food. I told them that’s what it’s like to have a roommate. To be fair, Eamonn was unaware that Brett and Em had bought certain food, and we weren’t able to tell him before we left. Eamonn is Eamonn.
Nothing new on the Alexis front. Haven’t seen or talked to her since the day she took me to the doctor. Last night when the car broke down, Corey called Mike to see if he could help. Alexis answered the phone and told Corey that she was eating dinner. Hmm . . . the number of times we’ve been busy but have dropped everything to accommodate her? Can’t even count.
I never thought that nearly grown/grown children would be more difficult than toddler children or more trying than teenager children. I was wrong. I love all of my children, but sometimes I just don’t understand where their heads are . . .
I can sit here and wish with all of my heart that life for my children would unfold without complications, but we all know that such things don’t happen in reality. Motherhood is fraught with potholes and the potential for pain, and nothing can change that. But how I wish that life was still so simple that mere mommy kisses could make things better. How I wish that hugs could heal . . . but if wishes were fishes . . .
“There are moments when one has to choose between living one’s own life, fully, entirely, completely—or dragging out some false, shallow, degrading existence that the world in its hypocrisy demands.” ~ Oscar Wilde
I’m cancelling all upcoming doctors’ appointments for the time being because once again, my health insurance coverage is messed up. Apparently, the payment that we sent at the end of June was never credited, and we have no idea where it is. This is not the first time that the payment processing center has lost a payment. But as a result, none of my doctor’s visits in May have been paid for, and I’m getting nasty calls from billing offices.
This I don’t need. Obviously. I mean it’s one thing when I know that I haven’t paid a bill, or that I’ve paid a bill late, but when the bill has been paid on time, and the phone calls still come—it’s just too much.
I told Corey that I’d like to move to Vermont, the one state that provides healthcare coverage for its citizens. It’s not that I’m in love with Vermont, just the idea of having healthcare. Corey says that Vermont is too damned cold.
Of course, if my Social Security disability would be approved, then I’d be relieved of this huge insurance payment each month. Every time that I think about that stupid judge who said that I had no disabilities I get angry. Every time I have a headache that lasts for days I think of that judge, and I want to call him. Each time I have to spend the day in bed recuperating because my body is just worn out, I think of that judge in not too kindly terms.
I hate having my future in someone else’s hands. I hate that loss of control. I hate bureaucrats. Sometimes, I wish that I had gone to law school when I had the chance, but then I come to my senses. Oh, who knows . . . all of the what ifs, should haves, maybes, whys—it’s enough to drive a person crazy, but then, we all know already how crazy I am . . .
(I sure am using a lot of ellipses in this post. Maybe it’s because my thoughts keep trailing off, or maybe it’s because it’s more of a stream of consciousness post: here, there, everywhere.)
“I dream of lost vocabularies that might express some of what we no longer can.” ~ Jack Gilbert
I had a lovely surprise waiting for me when I got home: one of my regular readers wrote me a letter, a real letter on stationary. I gobbled up the words and enjoyed it thoroughly. Of course, now I must make the time to write her back, which will be good for me. Years ago, I used to keep a stock of stationary, lovely cream-colored linen. In this day of printers and computers, who has stationary any more?
I managed to read two and a half books while we were gone. I finally read The Book Thief, which I will admit was hard to get into, but once I did, I loved it. It’s set during Nazi Germany, but the story isn’t anything that you might think. I would highly recommend it. I also devoured a Lee Child book, 61 Hours, which is more fluff reading, but enjoyable nonetheless. And then last night I finished Life of Pi, which I had started while we were still in Ohio. I had heard about this book and read reviews, but had never gotten around to reading it. It’s an improbable story, bittersweet and touching. I loved the main character.
I have a stack of books in my to-read pile. I don’t like to read while I’m floating in the pool any more, not since I dropped Gargoyle into the pool and ruined it.
Speaking of the pool, the water is finally clear. Corey had a heck of a time getting the water to clear this season. Even though it’s just an above-ground pool, it still takes a lot of work to keep it in good shape. I deliberately did not go outside today as the pool would have been too tempting, and I really wanted to get a post up. Tomorrow though—floating and perhaps a new book.
That’s about all for now. I promised Brett that I would give him a haircut today, so he’s waiting.
More later. Peace.
Music by the Editors, “No Sound but the Wind” (just discovered this wonderful group)
Too Many Names
Mondays are meshed with Tuesdays
and the week with the whole year.
Time cannot be cut
with your weary scissors,
and all the names of the day
are washed out by the waters of night.
No one can claim the name of Pedro,
nobody is Rosa or Maria,
all of us are dust or sand,
all of us are rain under rain.
They have spoken to me of Venezuelas,
of Chiles and of Paraguays;
I have no idea what they are saying.
I know only the skin of the earth
and I know it is without a name.
When I lived amongst the roots
they pleased me more than flowers did,
and when I spoke to a stone
it rang like a bell.
It is so long, the spring
which goes on all winter.
Time lost its shoes.
A year is four centuries.
When I sleep every night,
what am I called or not called?
And when I wake, who am I
if I was not while I slept?
This means to say that scarcely
have we landed into life
than we come as if new-born;
let us not fill our mouths
with so many faltering names,
with so many sad formalities,
with so many pompous letters,
with so much of yours and mine,
with so much of signing of papers.
I have a mind to confuse things,
unite them, bring them to birth,
mix them up, undress them,
until the light of the world
has the oneness of the ocean,
a generous, vast wholeness,
a crepitant fragrance.