Abigail

After some ups and downs (and also too many different scales), I’m back to this goal and my home scale. Today my weight was 307.6 lbs. 22.6 to go!

On the Bias

I flex my fingers
in preparation for you –
a riddle in pinstripes,
a limerick, a quandary,
a sudden rush of lemony smile.
I grin, I glance;
your wrists don’t notice me noticing.
I turn away secondarily;
suck the smooth taste of your name.
Yes, I tell you, turning back -
even though you haven’t asked.

I wrote a bunch on this last night. Here’s the first half or so. Yep, it’s completely fictional.

My Uncle Vince escaped from prison in 1968. I wasn’t born until 1970, so he was already a legend by the time I learned to both fear and revere him. I was thirteen, in the hot, horrible, desolate summer of Mobile, Alabama. No one had heard from or seen Vince since May of 75. My mother, who always called her brother Vinnie, said: “We’re well shut of that one. Vinnie won’t never come back. And he oughta not!” She was emphatic but vague about the reasons why.

I got the real story from Uncle Terry, down at his auto shop. I tried to spend as much of the summer there as I could. Momma didn’t know where I was and didn’t care. She was ancient throughout my childhood; in her 40s and old for her age on top of it. She walked slowly. It didn’t annoy me, it just made me afraid. I ran everywhere I was going – why not get there faster? I’d dash down the alley and round the corner, early enough that it wasn’t yet full sun, and take refuge with Uncle Terry under the hood of a K-car in for engine work. And Uncle Terry would talk – about almost anything, if I asked right. When it came to Uncle Vince, he was happy to elaborate.

“Vince got himself in trouble early on. He was only your age when he started stealing parts from the salvage yards and fixing up his friends’ cars. The yards got wise, put up more wire, got more dogs. It didn’t stop him. Pretty soon he moved on to whole cars – they went with the parts, and Vince, well, he never had trouble finding a buyer for them cars. It wasn’t the cars that got old Vince in the end, though. He got a half a cinder block and put it through your momma’s window one night. He was drunker’n a skunk and just as mean. Yep, your momma, she didn’t fool around, called the po-lice, left him out there baying at the moon. He never believed she’d do it, of course. She’d been telling him for years she’d get him arrested, he did something like that just one more time.

“Well, they picked him up, throwed him in the drunk tank, and some bored deputy pulled his record. That deputy made sergeant, by GoD, because just a month ago an old buddy of Vince’s had rolled on him. Told the cops everything they wanted to know – about a barfight, that is. Turns out Vince wasn’t even in it – he was too smart to fight, anyway. Turns out, too, the truth don’t matter much to them boys in blue. They had the other fella’s sworn word it was Vince who killed a man – so it was off to the clink with him just like that. He had no alibi, see, since every night he was running cars or working the chop shop with plenty of stolen parts. And Vince, he had a weird notion of honor. Wouldn’t let him bargain his way out of years behind bars – but it would let him terrorize the living daylights outta your momma. Mm-hmm. Honor,” said Uncle Terry.

I was astounded. I’d never heard this part of the story before. “Uncle Vince,” I asked, “what’d he want to get at Momma for? I mean, what’d she do to him?” But Uncle Terry was done on the subject. “Mm-hmm,” he said again, leaning all the way down under the hood. “Honor,” he muttered, scoffing. “Honor.”

Naturally, I did what any teenage sleuth would do. I asked about it at my first opportunity: “Momma, what’s the quarrel tween you and Uncle Vince?” “Alberta!” my mother hollered, dropping her fork. She got her voice back under control: “You help your brother eat his peas.” Jimmie was seven, and needed no help. When I took his spoon, he wailed like a weather-horn. I decided, spooning up some peas and hushing Jimmie, I ought to take a different tack.

I gave it a few days. Without knowing why, I sensed it would be best. Then one morning, I skipped my usual run to Terry’s garage and waited till Momma was out back hanging laundry, her mouth full of clothespins. I strolled out the back door, on the pretense of helping her. I stuck a few pins in my teeth and grabbed a sheet. “So … Momma,” I said from behind it, “you remember the night Uncle Vince got arrested?” She hesitated a long moment, and I thought for sure I was going to get my name thrown back at me again. Then she said: “Hmph. Sure do. Was me what called, you know.”

Jotted down some ideas on this today. I picked a few words from thin air that I know I’d like to use: lemon, limerick, and pinstripe. I expanded on the pinstripe idea, and got down a few phrases I liked. Hey, I’m halfway there!

(TWC is The Wellness Community and this speech is for a fundraising event they’re having at the end of this month. I’m honored they asked me to speak!)

My name is Abigail, and I’ve been battling lymphoma for over a year. I’m living proof that cancer doesn’t discriminate. Cancer strikes regardless of age, gender, or health insurance coverage. Lung cancer attacks non-smokers as well as smokers; breast cancer attacks men as well as women; and blood cancers, especially leukemia, attack young people – often, children. I was diagnosed with Hodgkin’s Disease on Halloween Day 2007, and saw the oncologist two weeks later on my 27th birthday. I had scarcely learned my cancer was stage 4 before I was at my first chemo treatment. To say the least, my diagnosis was devastating. After I’d finally felt I was getting my adult life “on track”, I felt completely derailed. As I tried to make sure I wasn’t really derailed but only rerouted, I tried out more than one support group … but none of them were right. Then a friend gave me some information about TWC.

I met with Bonnie, and joined the support group here – and it was one of the best decisions I made throughout my cancer journey so far. I got to know the members of the group through our weekly meetings, and came to care about events in their lives – both cancer- and non-cancer-related. We share our triumphs, disappointments, joys, and frustrations. We share vacation photos and advice on interpreting teenagers. I attend support group meetings weekly, and did even when chemo made it tough to put one foot in front of the other. Throughout my worst times, group was an unflagging source of support, fellowship, sympathy, and help. Group offered practical advice on drugs and side effects or how to handle mounting medical bills, suggestions for navigating personal relationships, and a safe place to be bald – both literally and figuratively. From leaving my boyfriend to losing my job, group was there for me.

I haven’t taken advantage of TWC’s other services very often, but I’ve often wished I had the time. From exercise to expert lectures, TWC offers ways to improve and maintain health from top to bottom – mental, physical, and even spiritual health. I can tell you for certain that TWC can be a lifesaver. I don’t know what my experiences with 6 months of chemotherapy, a near-fatal complication, and lots and lots of waiting would have been without TWC – but I do know that with TWC as a partner through my cancer journey, I have been, and continue to be: a stronger, happier, and healthier whole person.

Dear Mr. and Mrs. Obama,

I’m sure you’ve heard stories like mine before. I’d still like to share my story with you, though, because I believe in change for America, and I believe you, together and with the American people, can bring about this change.

In 2005, I quit my job because with rising gas prices, the commute was too expensive to manage on my salary. I lost my health insurance coverage at this time. I was hired at another job closer to home almost immediately – but as a temp. When my swollen lymph nodes became nagging, I paid $80 out of pocket to see my physician. He sent me home, telling me that unless I could afford further tests, he’d be willing to bet I was “just getting over an infection” and I’d “be just fine.” Shortly thereafter, I was fired from my temp job because the company had no choice but to hire me or let me go. They couldn’t afford to pay me benefits, so I was shown the door.

Six months of looking for work – with no income, and no health insurance – and no job. My lymph nodes were still swollen, though, and by this time, it had been a year. I knew something was wrong, so I signed up for private health insurance coverage and paid the premiums out of my meager unemployment income, gulping as I signed a $700 check. The policy had minimal coverage for doctor visits and serious illnesses, but all I needed was a physical. I waited the 28 days required so any diagnosis wouldn’t be found to be a pre-existing condition, then took a deep breath and made an appointment.

The doctor was mystified by my swollen lymph nodes, and so were her colleagues and the medical students who looked at me. They ordered blood tests, x-rays, and a surgical biopsy. My health insurance that I’d paid so dearly for barely covered the first doctor visit, and covered none of the following tests. Costs were quickly spiraling out of control. Finally, two days before my 27th birthday, the doctors had an answer: I had stage 4 Hodgkin’s lymphoma, a kind of blood cancer. The cancer was very advanced, since I’d waited quite a long time to get it diagnosed. I’d need six months of chemotherapy, and possibly a bone marrow transplant. I was devastated. Beyond the initial shock, my first thought was: How will I pay for this?

Since then, I’ve incurred well over $100,000 worth of medical debt, due to surgery, chemotherapy, and treatment for a life-threatening complication of the chemo. There were times that my blood counts were much too low – but the medication that would raise them costs, on average, $5000 a dose. I went without. Eventually, I was forced to quit my job. I now have no income at all. I’ve moved back home with my mother, and I live on my meager savings, which are running out fast. I pay as much as I can every month to each different medical facility where I owe. I send checks out for $50, $100, and I pretend I don’t see the lines on the statements that read: Amount Now Due $54,683.25.

I have been referred to a number of different programs which help uninsured patients – but I didn’t qualify because I had a small amount of insurance already. Mr. and Mrs. Obama, there must be millions of Americans in my exact situation – falling through the cracks in our health care system. I know a few of them well – one member of my support group can’t get the medication that could prolong and potentially save her life because her disability income is too high to allow her to qualify for the pharmaceutical company’s charity program, yet the medication is an unbelievable $50,000 a dose, which she clearly cannot pay. Mr. and Mrs. Obama, please know that I wholeheartedly support you and your notions for change in America. I have nothing but sympathy for the other Americans that I know are in the same boat with me. I shudder when I think of the millions of Americans who will soon face similar situations. Please help them. Help them before it’s too late.

Good call, Flash. I joined the team, and as soon as I’m up to $25, I’ll make loan #21.

I have HATED how I look lately, especially in pictures. But I actually really like this one, taken at a wedding on 9/27/08. (I’m on the right.)

Doing yoga is also helping. I like feeling my muscles.

I still have some bad days, believe me. But I’ve got myself in an exercise mindset, so I’ll start doing that every day. Finally. And I made myself a list of rewards I can give myself that I don’t have to feel guilty about:

*Fancy lotions or bath products (I have a TON of these)
*Chocolate-flavored yogurt (Which I really like – way better for me than candy)
*A facial mask or an eyebrow wax
*Manicure or pedicure
*A new CD (I’ve got my eye on We Sing, We Dance, We Steal Things
*Wearing a new sweater (I bought a bunch the other day, and will put them away to get them out one at a time)
*Sugar-free jelly beans (Not exactly good for me, but way better than the ‘real’ ones)
*Burning my designer candles (I have a bunch of these, too)
*New jewelry (my friend makes it, and I love it – http://www.merpette.com)

Things are improving – mom no longer takes the huge amount of meds that made her a little crazy. She doesn’t remember much of what happened during that time, which is interesting. She did all kinds of weird stuff! She still is sort of falling apart mentally, which is impossible to watch. I still stay with her all the time and help her as much as I can. I just wish I could do more than I’m doing.

Daily dozen today.

1. Cat
2. Mountain + side lean
3. Standing forward bend
4. Child’s pose
5. Lunge
6. Standing side stretch
7. Dog
8. Cobra
9. Tree
10. Seated twist
11. Seated forward bend
12. Relaxation

Did yoga again today – about an hour’s worth. Good for me!

This is proving much more difficult than I thought it would be. Mom’s in way more pain than we thought she’d be, and can’t do anything for herself, even getting in and out of her chair. She can’t lie down, and never sleeps more than a couple hours at a time. She literally can’t be alone, ever. The pain meds make her dream crazy things (or hallucinate, I can’t tell) and she says outlandish things all the time. She takes her sling off even though she’s not supposed to, and she fights with me over nothing at all. It’s hard, but I don’t fight back, and I am patient and try to make sure she keeps as healthy as she can. I feed her and give her her meds on a schedule, and I do whatever she asks unless it’s too nonsensical. I stay by her side all the time, even through the night. I’ll take her to the doctor tomorrow; maybe he has some insight as to why she’s so much sorer than we expected.

I’m finally done with this – I’ve changed my address every place I can think of!

I needed to figure out what best to do with the money I had from selling my Toyota. I think the best move will be to pay off two of my credit cards, thereby eliminating some monthly payments. That’s my plan!

The company came and picked up all the oxygen equipment today. It was the last step to moving out of Donald’s house, so I’m glad. Check!

The last three things that were hanging around are finally recycled. I took them all to the Ann Arbor Recycling Center today and they took the scanner, monitor, and old Mac box. I’m glad I disposed of them responsibly.

This loan is to a woman in Ghana. My dad has been to Ghana and does a lot of mission work there through his church. I was just telling him about Kiva last night. Cool connection.

Good for me – I finally made myself drag out the yoga mat. I did about fifteen minutes of simple stretching this morning, and it did make my back feel better. I plan on doing more tomorrow.

I can’t believe it – I just went to the Kiva site to make a loan, and they’re out of them. All their loans are already funded! How wonderful! I’m thrilled for them, and hope they keep growing!