Driving, Walking, Waiting, Whine

I really need to complain about not being able to drive.

I can physically drive a car, I have a license. I just can't drive anywhere alone because there is a 95% chance I won't be able to drive myself home, or even make it all the way to my destination in the first place.

That means I rely on my boyfriend to take me almost everywhere. When we lived in the city, I could walk short distances, but we're out in the middle of nowhere now, there are no stores or libraries or anything within walking distance, for me.

Other people walk and bike the highway that runs near our house, it's only about six miles to town, and even less to two glorified turnouts that house a little convenience store and a burger joint, but there is no way I could make it. It's a two-lane, winding, mountain highway, there are plenty of blind turns and narrow bridges, the speed limit ranges from 25 to 45 mph, and there is no sidewalk or bike lane. I can't even stand next to the highway for more than a minute or two; the noise, smell and pressure of the passing cars thumps my head into a delirium.

I haven't seen my friends or family in ages, in part because we moved an hour away and most people don't want to make the drive. They also used to be semi-reliable sources of transportation when I had to get somewhere in a pinch, but my resources here are much thinner.

And making new friends is harder when I can't drive. I hate asking someone to pick me up all the time, and since I can't really go out to most places, or even watch movies or listen to music with other people, I'm basically trying to get people to come over and drink tea with me. I know you are out there, fellow tea drinkers! Come over! And please don't mind the mess.

I can't get my own groceries, because I have to have someone drive me, and be willing to handle the actual transaction for me, if I'm unable.

I can't... just go. I used to love to just drive, take off for hours and go to the beach, or take care of all my errands in an afternoon, or just be by myself, in the world, in control of my destination and arrival time. I miss that independence so much. It's been seven years, and it still hurts like it's new. My only solace is being able to go into the woods alone, but there's no real destination there, no purpose, so it's not quite the same, though it is a similar feeling.

I am waiting right now for my boyfriend to get home. We need to get groceries, and it's already been put off several days. He's got legit stuff going on, so I'm trying not to be rude about it, because I do have food to eat and I'm in no danger of dying of malnutrition, but UGH if I could just drive myself, it would be great.


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So, Optimism

Let's the start off with the bad: My head hurts and I'm nauseated and my neck and shoulders are sore and creaky and my eyeballs ache and there are other things, but hey, that's plenty enough isn't it?

I haven't been writing here much lately. I've been feeling like I have to scrimp and save every scrap of energy I have, but it's my own fault because I spend more of it than I should hiking with the dogs almost every day. They say exercise can be addictive, and I can see how that could happen. Dedicating ten to sixty minutes a day to doing some kind of aerobic activity or strength exercises has improved my overall mood, made me stronger, increased my stamina, and improved my self-confidence.

And usually it's hiking, but I've also broken out the Wii fit (which I still kind of hate for it's body-shaming, but I find talking back to the screen with profanities and rude gestures helps) for a little indoor jogging or yoga. I dance to music, especially when I clean the kitchen. I do pushups and situps sometimes.

I'm holding onto a dread that makes my heart heavy, because I'm going to have to stop exercising so frequently eventually, and I'm afraid I'll lose the improvements I've seen in my head. The heat has already been keeping me more inert, and I often feel the urge to do something more with my life than exercise.

I miss school, but I'm still really undecided about the direction I want to go, and frustrated with my limited options as an online student. I've been "working" a few hours a month at the dog sitters up the street, which is pretty much a dream gig for me. It's even on my usual hiking route so I can get myself there most of the time, it's run by really low-key people and populated by awesome dogs and I've grown to consider them and their dogs like an extended pack.

I've struggled to find motivation otherwise. Sewing, gardening, I want the results of both but they both seem impossible right now. The latter for the drought, so I can hardly be blamed for that, however I do take ridiculous hot showers when my body hurts. Forgive me, unless someone rips me out of that blessed heat, when I ache I can not leave until I am blanched. Sewing on the other hand has no barriers besides my own frustration. I just need to make something new.

There was a wedding a few weeks ago, a cousin married his long-time partner. I made it through the ceremony with earplugs, but as soon as we all started filing out of the space they'd reserved for the ceremony and towards the the building in which the reception was to take place, I found myself surrounded by the perfume of a thousand old ladies, which compounded the effects I was already feeling from the sun and wind, the drive there, talking, the loud pre-ceremony music, and the stress of wearing uncomfortable clothes, makeup and heels. I was suddenly feeling quite ill and volatile and because I very much do not want to insult people unnecessarily, especially on a special day, I shut my mouth firmly in a pleasant smile and steered myself towards the parking lot for an early escape. I did try to medicate before ordering my boyfriend/chauffeur to whisk me back to the forest, but there wasn't enough pot in the world to counteract the overstimulation of that wedding.

My favorite part of dressing up always has been the taking it all off because the feeling of ease is so delicious after all that pinching of shoes and scratching of fancy fabrics; I could not wait to get back into my comfortable clothes, so I did that before we were even on the road home. It felt silly to have gone to all that trouble (makeup, hair gel, properly fitting undergarments, lint rolling my nice coat), but of course I intended to at least try to go to the reception, at which sweatpants would have been unacceptable.

The motion sickness seems to be coming back with the warm weather. It eased some for a few months, only getting bad in the car, but now it's a 24/7 struggle not to guzzle ginger ale all day again. I've got to find an alternate, something with a little less hfcs.

I'm dealing with the heat pretty well so far, though we've only really had a few hot days. One day we hit the mid-90s, and I soaked my head no less than four times, drank water and ate fruit like it was my job, and stayed out of the sun totally, only taking the dogs for a short walk under the trees, and I survived pretty well! So, optimism.

And as a final note in this wandering post, I'd like to share that asking for help is something I don't do easily, but it's something I've had to do recently. I'm very afraid of being rejected or laughed at for my feelings and my failings, or of appearing foolish or weak, and I worry that my relationships can't take the strain of my problems and my needs. These fears aren't the worst things that could happen to a person, though, so I'm realizing that maybe it's worth the risk to share my vulnerabilities, especially if it helps me get to a better place. I've got choices to make and I certainly can't do things alone, so I have to hope that those I turn to for help are open. These are murky, uncharted waters and without a map or compass I can only rely on those around me to help me keep moving forward. Wish me luck.



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Being Offline and Poor

We lost internet for a few weeks, and it was a painful reminder of how fragile my sense of connection really is.

We live way the hell up in the mountains. Our closest neighbors are within distant earshot, but not eyesight, due to the trees. I depend on the internet to keep me connected to the happenings in the world, and to my family and friends. Without it, I was totally alone. Just me and the dogs in the middle of the forest. My boyfriend would come home at the end of his day to find me wild-eyed, so eager to talk to another human that I couldn't even wait for him to get in the door.

Besides being desperate for contact, I was unable to answer surveys or look for housing, I couldn't apply for services, or look up recipes, or search for diy fixes to minor home repairs.

My neighbors are kind and allowed us to vampire off their wifi during visits, but we tried to be sparing with our usage as to not abuse our relationships. They probably wouldn't have minded, but I'd rather go without than interrupt their peace. If I was in school, however, I likely would have unapologetically set up camp.

Also during this time, we got a 48-hour notice from the water company, and had to pay a massive electric bill. The money was coming in, it was just a lot of unfortunate timing, and we're back online and mostly in the black on our utility accounts, but now we're already nearly broke for the month and are low on food. We renewed the food stamps this morning (and in an ideal world we wouldn't have ever stopped with them, but the renewal process is a pain and it seems like even when we get it right, there's a problem and we have to start all over again. It's a whole 'nother post.) and I'm not sure how long it'll take to process, but we plan to check out the free food pantry tomorrow, as long as we have enough gas to get there.

It's stressful being poor, and exhausting. I need to see a dentist, but we can't afford it. HOW is dental care not a mandatory part of health care? I'm on Medicare, WHY do I not have an affordable dental option?

And with all my woes, I'm one of the luckier ones. I'm white, I have an advocate, I have the education and access to information to protect myself, or at least to try. We have the means in this country to provide ALL of our citizens with a standard of living that should be a shining example of what civilized behavior and compassion look like. But instead, we ignore, relocate, imprison, mock, blame and fail our poor, while the rich get richer every day.




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Another Food Post

Grocery shopping is the worst.

I've learned to adapt, for the most part. For the glaring overhead fluorescents, I wear a hat and have my sunglasses handy. For the obnoxious piped in music, shrieky fellow customers, and inter-store announcements, I bring earplugs. For the nausea triggered by the car ride to the store, and then the stench of the laundry/cleaning/air freshener/perfume sections and other patrons, I keep ginger or mints on me. For the overstimulation of all of the above, plus deciphering product labels, I medicate liberally beforehand. I always bring a sweater, in case the air conditioning is too cold.

Besides physical preparations, there's some mental prep involved in even simple trips. I have to stay focused, go straight to what I need most because there's no telling how long I'll last. I have to stay as calm as possible, so I can't let the guy who was weirdly aggressive about getting around me to the soup bother me. Once I've finished getting what I need to get, I skedaddle the heck outta there and wait in the car for my man to check out. Thank you, Man, without you, I would surely end every shopping trip by crying or threatening to barf on someone.

Our local CSAs don't come to your door, but they sometimes have a "local" drop-off point, which I may or may not be able to make it to every week, as migraines and gas money would dictate. If I missed it, I'd lose my food, having already paid for it. There's a chance that they'd accommodate me, make an exception and deliver to my door, or allow me to pick it up on off days, but I haven't yet explored those options, because there is one more hurdle to the CSAs that I have to overcome and that is money. I just don't have enough.

In a perfect world, food stamps would be redeemable for all the fresh, local, organic produce a person could eat. (When the government isn't shut down and people are actually receiving them, that is.)

But in the real world, we make do. Which, in our case, means making the most of our local (within 10 miles), but rather pricey grocery stores, the slightly cheaper chain, Safeway, that is more than half an hour from home on winding roads of barf, and costco -- which is the furthest distance, at about 45 minutes from home, but it's the best option when we can make the trip.

And, we are so incredibly, astoundingly lucky that we have the option to visit a free farmer's market three times a month, and we usually make it to at least one. It's hosted by Mountain Community Resources, an amazing organization that helps people with all sorts of services, but these farmer's markets are the best thing I've ever seen a charity do.

We've visited food pantries before, and while we'd usually come away with enough food to live on for at least a week, this wasn't food that keeps people healthy. It was all cans and cereals and processed meals and more than one time there wasn't a thing in the bag that didn't have hfcs or some kind of preservative in it. That food was depressing and unhealthy. I would almost have been better off not eating at all. Almost.

Of course, I needed to eat. So, I did. And I felt terrible all the time. I clearly remember the despair I used to feel on nights when the fridge was lean and I struggled to make a dinner that would actually nourish us.

I never, ever forget how lucky I am now to be able to take advantage of all this donated fresh food. Sometimes the produce is less than stellar; one time half the strawberries were moldy, and another the tomatoes were about to burst, they were so ripe, but on the whole, they offer quality produce, and you can't beat the price. Last week, they had massive, perfect portabello mushrooms, and brightly colored, delightfully misshapen bell peppers of all colors, and it was better than christmas. That haul inspired me to make some phenomenal vegan enchiladas.

Oh yeah, I've cut out even more of the animal products, and I'm happier about it than I thought I would be. No cheese at all anymore, very few eggs, and little dairy otherwise, I feel better without it, and don't miss it at all, surprisingly.

I've been thinking in a more conscious way about the products I buy and where they come from, and what effects those products have on me, the economy, the environment, and what impact I'm personally having on this planet. I'm a little obsessed with personal responsibility right now. I want my impact on this world to be beneficial, not harmful, I want to leave a positive mark, if any. So, first I stopped buying the regular eggs (because I'm against chicken torture), then I stopped eating cheese (made with rennet, which is baby cow stomach enzymes! WHY!) and my gut started working much more smoothly, and my skin got this unreal glow to it that I haven't seen since I was a teenager, without the zits (well, still a few, but that's ok) and then I dropped a pant-size or two within two weeks and my energy BOOMED.

I'm hiking our hill most days now, and every now and again I'll go up more than once. Pushups, situps and yoga are happening more and more frequently as well, and even on bad days, I'm trying to do low-key stuff, just to keep my body limber. I even ran in place for like, ten minutes the other day! Unbelievable!

Baked goods are still my dairy-downfall, because I'm not eating them often enough to warrant searching out and testing vegan recipes. I've been indulging in the standard fare, whatever my boyfriend brings home, save for the ice cream. But let me tell you, vegans aren't missing a thing when it comes to ice cream. We have this stuff in our local grocery:

It's called Luna & Larry's Organic Coconut Bliss and every flavor I've tried of their delightful coconut ice cream has been an impossible pleasure. The chocolate doesn't taste like coconut at all to me, but the less powerful flavors will definitely have at least an undertaste (if that's a thing? I think it's a thing) of fresh coconut, not that I ever complained. It's pricey, so it's not a frequent treat, but oh is it worth every penny. It's better than dairy ice cream and everyone should eat this. Unless you have a coconut allergy, like my poor boyfriend does. Doomed to a life of dairy ice cream, that one. More for me.


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Travel and School Starting

We're planning a twelve-hour drive to AZ to sort out my boyfriend's mom's stuff.

There is some final paperwork to be filed, her ashes to be picked up, and her house to be cleaned. We're going to go through everything and pack up a moving truck for the stuff we want to keep or can sell. It feels wrong, or at least odd, to be putting a value on someone else's things, even if they're dead. It seems disrespectful somehow. But, it has to be done, so we're doing it. We opted not to fly for several reasons, but the most annoying one is about the pot.

Medical marijuana is legal in both states, but flying with it still isn't, and while AZ recognizes CA's licenses for possession, it can't be used for purchasing, so I'd have to buy an AZ license, which is not only another expense, but is also a major time and energy suck that I don't need to be adding on to the mandatory sentence.

Also, we're bringing the dog and I'm nervous about keeping her in a crate for the flight. She sleeps in it half the time, but is a big whiner when she's locked in, which is what is required by the airlines, and it would stress me out the entire time to have her stressed. We'll probably have to deal with that eventually, but I'm happy to put it off for the moment. The cost looks to be about the same after all expenses, so we're going with the less stressful option, with the caveat that we get a rental car big enough to my partner to lay down in, if his back is flaring.

We've moved 11 times together, and we're excellent at it by now, so I expect we'll be able to sort, catalog, and pack up everything within a few days, but we're prepared to spend a week, if necessary. I've already started making lists. We're allotting plenty of recuperation time during and after, and are planning a leisurely, touristy ride home. Despite all of these plans and lists and anticipating of obstacles, I'm sure things will go wrong and there will be tension and I'll have more than one inconvenient migraine.

C'est la vie.


We got my books for school, classes have started, and I have to say, I was amazed at how smoothly it went. We parked, my honey got my voucher (which was done on time, miracle of miracles!) and checked the bookstore, which wasn't terribly busy, so we chanced it. My partner could easily get my supplies for me, but the experience of school shopping is really important to me for some reason, and I like to do it myself when I can. So, it was kind of a big deal when I easily found my book, browsed the supplies section for a few items I needed, and waited only moments to be checked out by an employee who was not at all confused by my voucher. I even came in two bucks under budget, so I snagged a reusable bag with my school's logo on it for a dollar. School spirit! My only complaint would be that there are now televisions in the bookstore; today they were blasting a cartoon that I vaguely recognized, but I couldn't really take in the information without blowing up my brain, so I have no idea what it was, but it was loud.

I'm so grateful for the financial assistance I get through my school. Some of the help I receive is because I'm disabled, some is for being poor and some is for getting good grades; they pay for most of my class fees, and I'm also eligible for the aforementioned voucher that entitles me to up to $200 in textbooks and $50 in supplies. Without their assistance, I wouldn't be able to attend and even with it, I struggle to pay the (usually) small remainder they require. But, I keep doing it, I'm making the necessary sacrifices, while using every ounce of help I can get, and it's barely getting me by, but it is getting me by. I'm lucky to have so many resources, and helpful friends and family to help me bridge the gap, and I'm also really proud of myself for making it work.

Go team.


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With A Little Help From My Friends

I'm officially a student again.

Summer quarter was a bust. Between money, the classes that were available, the shorter quarter (say shorter quarter out loud several times, it turns into shoulda coulda, which totally screwed with my head), and the effect the summer heat has on my migraines, I just couldn't make it work. It was pretty depressing to make all that progress, and then to just stop. But with fall approaching, my hope renewed and I tried to make it happen.

I was hell-bent on scraping money together, but every time I'd get a little ahead, something else would come up and we'd be back behind. Early registration came and went. I realized that I was running out of time and checked class availability online; the one I really wanted was already full, and other possibilities were quickly dwindling. I emailed the disabilities secretary to make an appointment with my counselor, but she was out of the office until way after classes started. I could see John Stranger, who may or may not be saturated in cologne. At least, that's what I read. I panicked a little, but made the appointment anyway.

The appointment approached, as appointments do, but the funds still weren't adding up.

I asked for help.

Sue answered. She paypal'd me a hand up and my heart grew three sizes. Thanks again, Sue!

And then, at the last minute, I was able to call on another irl friend to cover the difference. This friend also gave me a ride, and then sat in the meeting with me, saved us time and frustration when he caught a miscommunication between me and the counselor, and listened to me squee for a while afterwards, while we ate sweets and drank coffee. Thanks again, my dear irl friend.

And the people in the disabilities services department, they've been great. Both of the counselors I've seen were patient and knowledgeable, they repeated things I didn't understand, and reassured me without patronizing me. When I asked, "Which class is easier?" with faked nonchalance, I was deeply relieved when neither of them batted an eyelash. Apparently, it's ok to need an easier class.

Even their office is fantastic. I was waiting to see my interim counselor and was delighted to realize I could take off my hat because ALL of the overhead lighting in the office was covered by a glorious diamond patterned shield that kept the lights bright enough to be efficient, but took away all direct glare. Brilliant. We just need to make one of those for the sun and I'll be set.

I am so grateful to everyone who helped me that day. Saying thank you doesn't seem like enough, though. I'm hoping that this step will be the first of many that take me somewhere better than I am now. How do you thank someone for helping you change your life?

Only with help have I gotten this far. I won't ever forget it.


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Love and Pain

Some days, I have no idea why he stays, others I'm not sure why I do. Chronic pain can make us intolerable, hateful, ugly people. It can make us retreat into ourselves or explode, give up and give in, cry and scream, check out or check ourselves in. It's hard to be around myself sometimes, let alone someone else with his own set of pains and the accompanying baggage.

But I need the company. I need a teammate, a friend, and someone to talk to. The upside of both of us being in pain is that we always understand what the other is going through. Maybe not exactly, since I don't need a back brace and he doesn't wear earplugs every time he leaves the house, but we're fighting the same war, just on different fronts.

Some days we barely connect. We're both struggling so hard to lead our separate lives that we neglect our joint existence. Other days, we rely on each other totally. His sciatic will flare so he can't walk without a cane, or I'll migraine so hard I can't feed myself for two days and when you can't take care of yourself without assistance, it makes you think: we're all we have. We check in on each other, call out to each other when we need help and work together to make our home as safe and comfortable as we can.

It's a difficult thing to think about on those bad days, how would we survive without each other? We're both reliant on others for help in daily life, and we both have family that we absolutely wouldn't want to task with those responsibilities. Could I live alone? I'd have to handle meat, for the dog. I'd have to deal with my own spiders. I'd have to take out the garbage. Eh, that last one's not so bad. Could I handle my migraines alone? No, I don't see that happening. Transportation, communication, medicare, ssi, going to the grocery store, getting my medications... these are some things I just can't do on my own. And there are more. If I'm alone, who helps me?

Relying on my boyfriend as a caregiver isn't easy. This type of intimacy is strange. It's embarrassing and humiliating and frustrating to let someone else be in control. It takes our relationship places I didn't think we'd go until we were old and gray and it sometimes feels like all this pain could destroy us. But surprisingly, it mostly makes us so much stronger.

This post is very contradictory, isn't it?

It's both wonderful and horrible to be able to empathize with your partner's pain.

I hate my dependence but love, so much, that I can depend on him.

Life is so complicated. No, life is really very simple.

It's all true.


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I've Hit a Snag

I'm trying to go back to school. I'm severely disabled and can hardly leave the house, but I want to get an education, and hope to be able to support myself again someday. Until then, I'm resigned to asking for help.

Help.

I can take an online class this quarter through my old community college, and take that first step towards an AA, but I need $60 to register. I'm told all of my other costs will be covered by financial aid, but not the $60. I don't have $60.

In fact, we're low on food, behind in rent, and bills in general. We're drowning.

If you're so inclined, here's how you can help: There's a donate button on the right there. If you like my blog and can afford to sponsor a budding academic's first try in 13 years (hey, that's lucky!), feel free to throw me some monetary assistance. And there's no too-small donation, because if more than one person donates less than $60, there's a better than zero chance that the total will be $60. Which, again, is better than zero.

And if someone wants to donate more than $60, well then, I'm going to get me some medicine, treatment, food, and I may even pay some rent and finally have the freedom to move somewhere quieter and cheaper.

But most of all, I want to go to school. I've been feeling so powerless since I became disabled. I want to make myself better. If you can help, thanks.

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Woah, It's Wednesday?

Last weekend was the most active I've been in a while.

On Friday, I hung out with a friend until the wee hours of the morning and had such a good time that I felt almost normal. But I was, of course, totally overmedicating to compensate for the nearly immediate migrainous repercussions of hysterical laughter. So, I rested for most of Saturday. Then, on Sunday, I woke feeling good enough to attend a festival just a few blocks away from my house, so we walked on over in the early afternoon and loitered until I was done. I ate some unimpressive yet wholly satisfying calamari and sat on the ground a lot. It was more fun than it sounds.

Then I went to my parents' house that evening, spent some time with my family and ate well. Overmedicated some more to compensate for the migrainous effects of excessive conversation and more laughter.

Then, I rested for three days.

Today, I wanted to rejoin the world, maybe take a very short walk to gently break my unwilling hibernation.

But my sunglasses are missing. I left them at my parents' house. It's less than a mile away, but might as well be on the moon.

I'm trapped in a house of dim, surrounded by glare.

Shiny, bright beams of blaring blaze blind, blur, dazzle me, into a daze of hazy pain.

So I'm sitting inside and pouting and waiting for help.

Thinking about that calamari. It was extra crispy.




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Lucky in Food

Did I mention we got food stamps? It is THRILLING. I can afford produce again.

My fully stocked and overflowing fruit bowl.

We were really in trouble for a minute there. We're not nearly out of the woods yet, financially speaking, but the food stamps will make a huge difference. (Actually it's not stamps anymore, the program is called now called SNAP (Supplemental Nutrition Assistance Program) and the funds are deposited to an EBT (Electronic Benefits Transfer) card, like a debit card. Still, I continue to call them food stamps.) The past few weeks were rice and beans and eggs. Peanut butter, bananas, lettuce and canned tuna when we could afford them. And a few wonderfully timed food donations. Let me tell you, we may be on hard times, but we never forget that we are very lucky people. In the past month, we have avoided extreme hunger because of the following people, who will remain anonymous, because I mostly am.

-Our neighbor gave us leftovers he snagged from his food service job.

-My parents also gave us leftovers, food they "have too much of", random bulk staples from Costco, some home-cooked dinners, and free reign in their fridge when they needed us to house-sit.

-The food bank gave us some staples, and some weird stuff. Last time it was nearly all canned green beans and a chocolate coconut cake. But they also often have pasta and sauce, rice and beans, and even a little produce if we can remember to visit on the one day of the month they offer it. But we never remember.

-My friends surprised me with a grocery bag filled with different teas, after I'd shared that my normally large and varied stash was totally dry. I could have cried when I saw the chamomile. And the peppermint! I'd been drinking groundcover mint tea** and hot lemon water for weeks, so having real tea again was a revelation.

Getting the food stamps is a total game-changer for me. Living on starches and cans, with very little fresh produce, is terrible for my head and not great for the rest of my body either, really. But, as soon as we got veggies back in the house, I started feeling more human. I don't feel as foggy, or weighed down, I have more energy, I feel less head-triggery and more able to bounce back from being triggered, and my digestive system is functioning much better.

The only downside to the food stamps is that not single CSA in my area accepts them, and I'm struggling to find a farmer's market that does. Well, I found one, so far, but it's in the middle of a massive flea market, which I don't ever feel up to navigating, so it's basically inaccessible to me. It's disappointing, I'm coping by writing emails requesting change. As I do.


**Fun Fact of the Day: Mint doesn't grow true from seed. I've been trying to grow an edible variety for years now, but my cuttings just die and the only seeds I can get to sprout keep turning into the only mint variety that isn't really considered edible. It won't kill me or anything, but it's much more of a creeping groundcover than an herb for tea, at least according to my herb book (and my palate says meh, too). So, yeah. Groundcover tea. The things we do when we're desperate for a cuppa.

Groundcover mint. It works in a pinch.

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Project: Holidays

I'm still trying to find my groove with the holidays. I've gone through it thrice now, with migraines, and I'm still intimidated. It makes me feel whiny, how it all used to be so easy and how everything I want is so hard now and life is unfair and WAAAAAAAAHHHHHHHH.

Enough of that. That attitude never gets me anywhere, so I need a new one. I need to think of this as a challenge. I know my obstacles. I can't control everything, but I can prepare for anything.

1. People. They are loud, inquisitive, smelly and grabby. I will need to talk, deal with loud noises, perfumes and a lot of touching. Earplugs are standard, but are only so effective. From quietest to loudest, it goes: lion roaring, car backfiring, brass band, rocket launch, christmas at my uncle's house. I can try to tough it out with my strongest earplugs in, but this option can require some heavy medicating.

The perfume issue is even trickier, because there is no sticking it out. There is no medication I have found yet that makes it possible for me to be near perfumes and be okay. But I was thinking that a light scarf dabbed with some menthol-type scent might help.

Of course, another option would be to send out an email ahead of time, asking everyone to go light on the perfumes and that music be kept off while I'm there. But that makes me feel a little anxious. See, if I write that email, I'm asking for special treatment, and I was once made to feel bad for that and I really haven't gotten over it. I feel like I should suck it up for the good of the peace. Just because my life has been turned totally upside-down doesn't mean I should ask anyone to alter their family christmas ambience. Writing this out, it seems obvious, I should address the issue head on. Be nice about it, but air my concerns and ask for help. But my chest is in an anxious vice just considering it and I am not even sure what I am afraid of. That I'll be disinvited? Not likely. But maybe that there will be some form of rejection, a reply that suggests I'm difficult, or worse... if we get to christmas and my requests are all ignored.

That just sent me into tears, so I guess that that's the problem? I'm worried that I'll ask for help, open myself, share my pain and that I will be disregarded as invalid and ignored. Because I know that my family and friends would never actively reject me, but they might passively? I need to give them more credit than that. PLUS, last year I got scented lotion and bath wash as a secret santa gift and it was AWKWARD. So, maybe I should send an email. Suggestions?

2. Food. This one shouldn't be too hard, as long as I plan ahead. There's usually a veggie platter wherever I go, and as long as I eat regular healthy food (read: at home) and only have polite bites of whatever holiday dish I probably don't care for anyway, I should be okay.

3. Events. The problem with christmas is that it won't be rescheduled. If I'm down, I miss it all. So, on christmas eve, if I can walk and smile, I'll be at dinner. There is an upside to everything being planned out: it's easier to plan my recuperation. If I have three days of festivities, I need to know when they are over. I can rarely do "one more quick visit", or "let's just pop over for a while". I can't shift gears very quickly and a change of plans can drastically alter how I need to be budgeting my spoons. Like a car in traffic, is it easier to be behind a vehicle smaller than yours? Or a huge tractor trailer semi wide load? Of course, you'd choose the smaller vehicle, because without as much visibility you are more likely to slam on your brakes or encounter an unexpected hazard, which can result in some kind of migraine car crash meltdown head explosion. Visibility is key.

So, I'll be trying very hard to figure out my schedule ahead of time. But there's always something. And for that something, I'll prepare by knowing there's always something. I might groan and roll my eyes and have to medicate myself to numbness and may end up seriously incapacitated the next day. But at least I know that ahead of time, right? I can make sure I have everything I need for a speedy(ish) recuperation. I can warn my boyfriend that I will need extra help so the dishes don't start piling too high. And if a miracle occurs, and there is no something that comes up, well then, I'll just have extra spoons for hot cocoa on the couch or a late night christmas walk with the dog.

4. Presents. We've been too poor to do real presents for all fifty (plus or minus) friends and family since long before the migraines, so I've been making gifts for several years now. One year it was a set of canning jars, one filled with a bean soup mix and the other layered prettily with the dry ingredients for brownies. Another year I made a hundred thousand cookies and muffins. Another it was a $5 gift card for blockbuster, a bag of popcorn and some hot cocoa mix for a "family movie night".

I really enjoy giving these types of gifts. I try to make it inexpensive, but useful and different. It removes a lot of the baggage that can come with gift giving. One or two gift-givers I know can't restrain themselves from bragging about how much their gifts cost. I get to happily brag back about the hours I spent carefully filling jars just so, or how the whole kitchen was covered in flour! Haha! I win!

But the best part of making inexpensive, bulk gifts, is always having a few extras. Inevitably, someone unexpected will show up to a gift-exchanging gathering and will sit by awkwardly. They may be smiling at everyone opening their gifts from each other, but they noticeably having nothing in their own hands. I like to fill those sad, empty hands with baked goods. And even if I end up with leftovers, there are always neighbors, postal employees, homeless people and teenagers who will gladly take anything food-based off my hands. Or I can stash them away in my own freezer or cupboard. I'm no fool, I don't make a thing that I wouldn't eat myself.

Now, I really love making gifts for 50 people, but I don't love how exhausted it makes me. The last few years have been really hard, balancing the prep of christmas with the mandatory activities and VIPs being in town. I would collapse in pain for weeks when it was all over and when my birthday rolled around, on 1/12, I'd resent having to hurt myself all over again, being barely healed from the last onslaught. So this year, I've planned even further ahead. I've been gathering materials and making things since spring, and I am almost positive that I'll be able to do everything so far ahead of time that I will be well rested by the time christmas comes.

5. Staying well. I get sick nearly every winter. Usually it's just a cold but being knocked down with the flu when I already have chronic migraines... I can't describe the misery. So, I do my very best to take care of myself and minimize my exposure. Hand-washing is essential, as is never touching my face, nor allowing others to. (I have a few mouth-kissing relatives that I have to refuse regularly. Everyone laughs awkwardly and we hug instead.) I use my neti pot whenever my sinuses feel dry, or if I know I'll be in a germy situation and I frequently add supplements to my diet if I feel sick, or even at risk of getting sick. Echinacea, vitamin c and zinc, hot tea with lemon and honey and the spiciest soup I can stand with tons of chilis, ginger, garlic and onions are reputedly good for immunity. I am very careful about staying warm, and am funny about layers. My sort-of uniform is loose jeans (with tights underneath if it's cold enough) a light tank top, covered with a light sweater, which is then covered with a heavier coat, if the weather dips below 65. Plus, I always have my arm warmers, a scarf and maybe a hat in my bag. Staying warm is not only important to keep my body well, it's important to keep my head from exploding. Cold air in my sinuses, temperature changes from inside to out and again, and the involuntary muscle clenching that comes with shivering are all significant triggers for me. But as long as I have my layers, and add or remove clothing promptly, I've mostly got this one under control. I certainly prefer winter to summer, now. I can always add layers, but I can only go so naked.

So, that's the plan so far. There are definitely holes. Like, will the menthol scarf work? Will I end up sending that email? Will I get sick? Will I manage to do it all?


We'll see.

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How I Cope on A Bad Day

When I saw that the theme of this month's Migraine Blog Carnival (hosted by the ever-lovely Diana at Somebody Heal Me) is "How do you cope with your headache disorder?" I was all, I totally know this one! I write about coping quite a bit. In fact, as of this moment, dealing is my most frequently used tag. I write about it so much, I focus so much of my energy on handling myself, my migraines, and my life, that I can sometimes lose the forest for all the trees. So now's a great time to revisit the subject. How do I cope? Well, it really depends on the day.

On Good Days, I don't even think about it anymore. Avoiding major triggers is habit by now and coping with low levels of migraine activity is second nature. My primary focus on Good Days is keeping my stress low, second is getting stuff done and third is having a good time. (Those last two might be switched.) So, I make quiet plans with friends and family, I do household chores as I feel capable and devote time to productive hobbies, like sewing (which I am getting better at!), writing and photography. Ergo, when I'm talking about coping, it's not the Good Days I'm really talking about. It's not the Good Days that I struggle with.

And I really have two types of Bad Days. On my (Good)Bad Days I am strong and flexible, and bend in the wind without breaking. I take care of myself easily, I ice and medicate, distract myself with silliness and forgive myself for my weaknesses. On my (Bad)Bad Days I am brittle like old glass, and am prone to shattering everywhere, cutting anyone who comes near. I give up, wish for death, slip into depression and blame myself for everything, everything, everything that has gone wrong.

On the (Good)Bad Days I hurt, but I've still got my wits about me. I am slow and careful and do my best to avoid antagonizing the beast by keeping it dim and quiet. I try not to bend, reach, or lift. I take a hot shower, request a foot rub, medicate regularly and responsibly, and eat and drink well. Watching funny tv or playing puzzle games keeps my mind from dwelling on the negative. Regular, gentle stretches keep my body from stiffening from the stress of pain and a little productivity, like replacing a button or feeding the dog, can go a long way to improving a darkening mood.

But when the mood is already dark, when I'm being held hostage by pain and despair and can't find my way out, it's my loved ones who pull me back out. My boyfriend, my friends, my family, my brother. My boyfriend is there, in the trenches with me, getting dirty. He is my strength on those (Bad)(Bad)Bad Days. He feeds me and holds me and keeps me from self-destructing all over myself. My friends and family, I don't usually ask them for help, literally (though I often wonder how someone goes about doing that). It's more the thought of people who love me and know me, who accept me and don't judge me, who encourage and comfort. I look at pictures, I remember Good Days. And, most importantly, I remind myself of the consequences of giving up. How many people it would damage, how they would carry that pain forever and would never be able to think of me without feeling that horrible hurt. My brother. I would live the rest of my life in torment gladly if he would never know pain. I could never leave him. On my bad days, it's about survival. And sometimes I have to guilt myself into it.

I've been here three years. Not long, really. But my previous life seems like a dream. Was I really so wild? So energetic and free? I was spontaneity and intensity. I think. It's all so hazy now. Maybe I've idealized it, how easy and fun everything was. But it does no good to dwell, either way. Maybe I'll get it back, or maybe my life will continue down this difficult path. Everything changes, for better or for worse.

Mostly, I think I cope by recognizing the truths; I have pain, but I have love and a roof and I can still laugh, just quietly.



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Hooray for GA! And Boyfriends! And Naps!

Good news! We spent the morning at our local General Assistance office (GA) and left with an debit card worth a couple hundred in food. Look out, produce section! Mama's comin' home!

Actually, minor correction. I sat in the car and reread The Kitchen God's Wife by Amy Tan while my man dealt with the masses of paperwork and the masses of masses all crammed in a DMVish waiting room with the loudspeaker blaring automated numbers and fluorescent lighting glaring supreme pain and punishment. It's really not a happy place. I am so lucky to have my boyfriend, and I've thanked him about thirty times, because we were there for four hours, though I was in and out in about ten, which were miserable enough, thankyouverymuch. Once I was fingerprinted and photographed (yeah, that'll be a pretty one) I scurried back to the car and comforted myself with more Amy Tan. I had a phase with her in high school and ever since, she's like hot cocoa for me. Her and Stephen King.

Anyway.

Again, let me reiterate to the internet at large at how grateful I am to have such an understanding, compassionate and self-sacrificing partner. Without him... I can't even imagine.

OH! But here's the annoying part, even though I stayed in the car, I still got hammered with triggers. The sun reflecting off of metal and windows, wafts of cigarette smoke, car alarms and motion sickness from the trip there and home have left me feeling strange, drugged and vaguely sick, stumbling over my words, losing my balance, and feeling generally disconnected. My instincts tell me a storm is coming. I haven't yet rebuilt from the last one. Dishes are dirty, laundry is still piling up. I got some done yesterday but today is a day not to push it, I think.

So I'll be here, watching Lost or finishing up that Amy Tan. Reading blogs and taking surveys.

Maybe a nap. Now there's an idea.





PS: I had to come back and edit this post to tell you all: the nap was awesome. I know you would have worried.


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Will Blog For Produce

My internets got cut off. They don't like it when you don't pay. So, now I am borrowing my neighbor's wifi. Thanks neighbor!

I am having a really hard time writing lately. Every time I start to write something real I end up crying or needing to medicate. I can't organize my thoughts. I constantly feel like I'm whining. My circumstances are shitty and it feels like I can't do anything to do to improve them. I keep typing out sentences that explain what's going on, and then deleting them. I'm not really making sense. My head hurts.

The worst of it is being poor, I guess. We're low on food and behind in rent, too. I can't think about it too much, because I get really scared. We're in talks with the assistance people, and should be getting the food stamp card thing squared away any day now, so there's a step. But the staircase, it is a long one. And steep, man. Really steep. Also, no handrail. Wheee, metaphors.

I'm all over craigslist, hoping to find some work from home that's not a scam. No luck yet.

I have a couple in my life, an older man and woman. I ran into them accidentally the other day and had a brief chance to talk with each. The conversations were radically different. The woman, who has migraines herself, dominated the conversation with her own stories, asking a few token questions and interrupting my answers within seconds. This was frustrating, to put it mildly. The talk I had with the man was the polar opposite. He asked how I am and I answered honestly, he hugged me and we changed the subject to something happier, his recent travels and how cute my little dog is. It was a mutual give and take of love and support. Unfortunately, since the interactions, it's the negative conversation that has stayed with me. I keep replaying it in my head, feeling invalidated and used. It makes me more afraid to open up to people.




Unapologeticaly not-subtle reminder: I have that cute little donate button on the sidebar, if you are so inclined. We need any help we can get.










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Happenings

I had a family party last week. It was the usual: throngs of people yelling at each other over the din of hip-hop via concert-sized subwoofers and a drum kit in the middle of it all with a three-year-old jamming his heart out. Okay, no, there were only about 15 of us and the speakers were the normal kind and the drum kit was upstairs, but still.

I survived. With the help of full-sized earplugs, my new hat, and some strategically administered drugs, I even enjoyed myself. I stayed long enough to have a little fun, socialize, eat, and relax, but left early enough so I missed the real shenanigans entirely. I consider the occasion a success.

My only frustration I felt that day was for how the conversation was constantly brought back to my headaches. I understand my family's curiosity, but I don't want to discuss it, for so many reasons. I have no news. Every day is the same for me. I have no current hope for relief and my focus is on improving my quality of life. I don't enjoy looking at sad faces and being pitied makes me nauseous, so I answered a few questions from everyone who asked, then politely and with a smile insisted that I didn't want to talk about it anymore. They took it well (mostly), but I feel guilty. I worry that I am shutting people out. But I don't have energy for everyone anymore. I barely have energy for me.

But I have pain all the time. If I am only going to be out of the house and with family for three hours, I don't want to spend two of those talking about pain. I'm trying to have a good time! I just want to forget how messed up my body is and smile and love on my aunt's new hairstyle and joke with my grandparents about facebook and laugh at the pool horseplay and enjoy watching my uncle scramble to keep up with the three year old.

I'm composing an email. Explaining to them what's going on, and why I don't talk about it. I don't know yet if I'll send it. Maybe.

______________________________

I had an appointment this week with the new internist. I was nervous again, but I just kept breathing and only made one weird, awkward joke. She suggested an anti-depressant, which I relented to try. I was hesitant because I have had bad experiences in the past, like that one time I went emotionally numb for a year. But I wasn't getting adequate health care then, and didn't have a partner to help me self evaluate. Actually, when the doctor asked me how I've been feeling, my first instinct was to sugar coat it. Then I glanced at my boyfriend, who was raising his eyebrows at me in that if you don't tell her I will way and I told the truth. So, I've got a prescription for Cymbalta and instructions to taper as slowly as I feel necessary. We'll see how it goes. She also filled me up on my usuals, and referred me to a couple psychologists, a headache specialist, and an internist who does acupuncture and has knowledge in chinese medicine. We went over the few records she's received so far and she is going to order a new blood panel and some kind of screening where they check for heavy metals and things of that nature. I was starting to fade at this point, so it all gets a little hazy. She gave me a sample and prescription for Sumavel, and said that with my fairly constantly waxing and waning migraines that I should take it when the pain gets worse than normal.

This was a little thing, but this is the first time a doctor has given me a prescription abortive and given me instructions that apply to me. Usually they tell me to take it when the migraine starts (but there isn't usually a clear beginning or end), or when I first start to experience an aura (but my auras come before, during, after and without migraines so that's a totally unreliable gauge, too). Then the doctor usually gets irritated, like I'm making it difficult on purpose and tells me to take it as soon as I can, but not too late, or something similarly vague and I leave confused and frustrated because I have no idea when to take this drug. I mean, my head hurts. Should I take it now? Or is it too late already? I've been nauseous for the last hour, and have had peripheral sparklies all day. When should I have taken it? NO IDEA.

"When the pain gets worse than normal". So simple. I love that I'm not developing a complex trying to figure out what it means. I love this doctor.

___________________________


I emailed Hulu because many of their shows and movies are not captioned and they emailed me back the next day. They sent me a very nice note regretting that I'm not able to watch some programs with captions and assuring me that they will forward on the request to the content owner. If I have any further caption requests, I can leave them on a discussion board and they may not always respond, but they always read and make note of them. This was a positive response, and I appreciate it. Thanks Hulu, now I almost forgive you for the fear-mongering cervical cancer commercials!




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Ma Petite Révolution

I never did post a follow up to my Drama at Denny's. They wrote me back. I can't find the email. But it wasn't exciting. It was the very standard: Dear Sir/Madam, We sincerely apologize for any inconvenience you suffered at YOURTOWN'S Denny's. We have forwarded your complaint to the appropriate vague blablabla. So, I didn't have much hope.

Well, color me surprised when we risked our lives (YES) to brave the horrors that dwelled within MYTOWN'S Denny's and found that the hostess was significantly less stinky. And wouldn't come within 15 feet of me.

Who knows if the official complaint made it through the channels and was actually addressed but it doesn't matter because it was obvious to me that my favorite waitress-buddy had dealt with the problem directly. If the hostess was reacting to an anonymous complaint she wouldn't have avoided us as much as she did. She knew I was sensitive and she was trying to accommodate me. After I got over my initial guilt reflex I realized: this kicks ass. She was still pleasant, greeted us warmly and made sure we didn't need refills, just like usual, but she just stayed on the other side of the room at all times. And her perfume hardly bothered me at all. I call it success.

Around the same time I filed my Denny's complaint, I also wrote to my city's library. I asked if there was a delivery service for those in need, and if there were any exceptions to the "no online ordering of dvd's" rule. Delivery would make it easier to get and return books when I'm feeling badly, obviously, and the dvd ordering would make it possible for me to see anything they have in their inventory. An able person with the time and resources to go to any of the many branches in my city would have no problem borrowing any movie they wanted, but since I can barely make it to my local branch without keeling over, a little flexibility in the rules might have made my millennium. But no, I got a very polite, regretful response informing me that there is no delivery, and no rule bending. I was disappointed, but unsurprised. Their budget has been cut so much that a few libraries have closed and all have trimmed their hours. It's sad. However, the PR person who emailed me back suggested trying a county service for book deliveries, so there may still be hope on that front.



Next: I've started emailing networks that air shows online without captions. I'll let you know if I get any feedback.



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Context

This morning my sheets smelled like evil. About the time I went to bed, My boyfriend went to get a rubdown from our local massage therapist. (Like, super local. Next door. It's odd how many times we've ended up living with or near massage therapists. Has there been a migration in the past few years?) He came back home, pleasantly sore and blissfully ignorant of the danger that clung to his skin. He took a quick (and admittedly careless) shower and got into bed, just barely rousing me from my deep sleep. I was just awake enough to mumble-boss him to get his own blanket as I could still smell the massage lotion on him. I covered my face with my own blanket and fell back into sleep, temporarily shielded from the scent of liniment and lavender. I woke with my face buried in my pillow and as soon as I moved, I smelled it.

It made me gag, though a part of me could recognize that it was faint. It was making me feel sick, angry, and very sensitive. Lights got brighter, noises were sharper, I felt hot and stifled, but my feet were freezing. It was the standard buildup for me. My boyfriend is really getting used to my patterns because when I flipped out at him for something silly, he asked me what the real problem was. "Well let me give you some context!" I spat, all righteous with my bad self. And after a minute of nagging and rambling on about missing forks, soap not being on the wire rack where it goes, and other petty things of this nature, I finally got to it, "...and the bed SMELLS!" His face instantly went from annoyed to sympathetic and I started to cry, relieved that I had finally gotten to the point and that he understood. He immediately helped me form a plan of action for cleaning all of the bedding without having a working washing machine. (It broke a few days ago. It's a problem.) He reassured me that if it all went terribly wrong, if my head exploded and all of my spoons fell out, he would carry it all to the laundromat himself if he had to, through the snow, uphill, both ways. Then he hugged me until I let go. He's a really great guy.

There really is no moral to the story. It's just another anecdote about how easily my day can go wrong, and how lucky I am to have someone to help me bring it back around to right. The last comforter is in the dryer now. I'm tired. But I'll sleep in a clean, unscented bed tonight and maybe tomorrow will be better.

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Fear and New Challenges

I'm scared.

I've had a headache for over two years. In the time, my life has changed so dramatically, I often wonder if I am still the same person. I used to define myself by certain quailities, hobbies, habits and interactions that are no longer any part of who I am. I can't imagine the future. My past torments me, like a buffet of treats being denied to a starving person. It's a flagrant taunt, a tease, the things I used to be able to do. Enjoying sunshine. Staying up late talking and laughing with a friend. Sitting in a theater, unaware of a thing but what is happening on stage, or on screen. Running. Laughing with abandon.

I don't like my life. It's boring and painful.

I can't plan more than a week ahead. We talk about vacationing, going to beautiful places and doing things we've never done before. Then, reality comes back into focus and the conversation ends. Where could we go that I wouldn't bring my headache with me? It's ruined the past two years, it'll ruin every vacation.

There are plenty of treatments I have yet to try, and there will be new discoveries and one day, maybe no one will ever have headaches.

I am simply terrified that it won't happen in my lifetime and I am doomed to a life of sedentary pain.



BUT, I am working on accepting what I can't change and, more importantly, changing what I can. I'm taking steps towards school. One class at a time is the plan, online or telecourses. Slow, yes, but better than nothing. It seems that my disability and income level will allow me to be educated for free, with "reasonable, yet generous accomodations" for my personal challenges. I don't know if I will succeed, only that I will try.

The whole process is not very migraine friendly, frankly. Just like working with the government agencies; fluorescent lighting, hold music, long lines, and pages of paperwork dominate the experience of applying for financial aid and admittance into college. I am looking at it like my first class. It's going slowly, I do a little every day, some days more than others, and I figure that if I can make it through the application process, I should be alright. Apparently, if I have a doctor sign off on my limitations (ie: extra time for assignments, no/less penalty for missing classes, or even a tutor), and the school agrees that I can be accommodated, I'm in.

This is a silver lining that I desperately need. I've got to keep moving, even if it's so little that it looks like I'm sitting still. It's all relative.




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Cindy McCain's Migraines and Me

She has given some great interviews. And she says, and I quote, "I’m going to go to Congress... and tell them that it’s time. If you can give five million dollars to study flatulence in cows and its effects on the ozone layer, you can give me some money for migraine research.”

She's turning me on.

It's a glimmer of hope, having a new and powerful advocate. If nothing else, she is educating the masses in a way most of us could never dream. Even if Congress ignores her, she'll still be a hero to me. She's standing up, she's defying the "suck it up" attitude that many migraineurs have been taught/told is the appropriate response and she's making me feel like less of a freak.

You'll probably never read this, but thank you, Cindy, for doing this. It can't be easy. My heart aches with how much it means to me, and for the rest of the migrainous world. Thank you.


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The Falling of Pride

If public humiliation builds character, like my mom says, I should be a cartoon.


I recognize my pride. It's not always the prettiest side of me; stubborn, arrogant, and willfull, but it's me. I own it, and more importantly, I'm learning to let it go when I need to. I tend to use humor as a defensive mechanism, so when I'm so doing embarrassing things in public it's not too big of a problem for me. Make a joke, get a laugh, move on. However, the headaches are depleting my intellect so making a quick, clever joke isn't as easy as it used to be. And being in pain has definitely lessened my patience with others, so I'm not laughing quite as hard at my own expense.

For example, whenever I tell someone I have earplugs in, I run a high risk of them signing and mouthing words to me, trying to be funny. It's not really that funny, except to the person doing the lip-synching, but I'll play along, ask "what?" a few times, if I'm feeling good. If not, I'll just stare and wait for them to stop. (Note: THIS IS EFFECTIVE.)

I have some cognitive trouble when I'm in a high-stimulus situation, like a restaurant. This can make ordering a meal difficult. I can always narrow it down to a few choices, being a picky pescatarian helps, there. But sometimes I get stuck. I can't choose. I feel like crying. I stare at the menu and it stops making sense. Then, I turn to my dining companion and ask, "You choose for me, okay?" They don't mind. I usually get a little teasing for this, but losing ones intellect is a sad and scary thing, so we generally don't joke much about it.

It's not just at restaurants, though. With the barrage of stimulus that daily life brings, the pain in my head, and the medication I take to dull it, my brain isn't working as quickly as it once did, which is giving me a bit of the old Flowers for Algernon effect. The loss of faculties is painful and sometimes terrifying, but the humility it's bringing me is good. It's a well-needed reminder that we are fragile, fallible creatures, and we all have an expiration date.

My ultimate downfall may be my limited ability to ask for help. I have a true dislike of asking others to do what I can't or won't. My ever-henpecked boyfriend would argue this point, as I ask (tell) him to do chores and run errands for me all the time. but, I also wash and fold his underwear, so he has his own special category. He is not everyone else. I could use some help, help that I know my family members and friends could provide. But, I don't ask. I don't know how to. I haven't even admitted, except in ironic or joking situations, that I am disabled. That I am unabled. I am mislabeled. I have digital cable. SEE? I can't even say it without making a joke! Pride will be my undoing.

I went to the beach a while back with some friends. I like to collect seaglass and shells for my garden and can happily spend hours walking up and down the beach, bending to inspect every little shine in the sand. Well, my head doesn't allow much of that anymore, bending over gives me a migrainous head rush that leaves me nauseous and tired, almost immediately. That day at the beach, I had picked up only a few shiny bits of pretty before my head ordered me to stop. I was sad, and told my friend what was up, and that we could continue to walk, if he wanted, but that my quest for pretties was over. When he offered to pick things up for me, I couldn't say yes right away. I was embarrassed and uncomfortable; I have a weird guilt complex about asking for help, even for little things. He didn't wait for me to say yes, just started picking things up that I didn't want and offering them to me, which nudged my bossy gland in just the right spot for me to start giving him direction and pointing out what I wanted. But even later, when my hands and pockets were full, I still hesitated to ask him to carry some shells for me. And yes, I can see how ridiculous I am.


I am not greedy or envious. My wrath is kept in check, as are my gluttony and lust. I'm definitely a lazy person (have I mentioned how much I love sleep?), but it's nothing compared to my burning need to hide all weakness. It's the pride, for sure, that'll get me in the end. I'm getting better about it; letting down my guard more, and asking for help more often and with less shame, but I'm a work in progress. I may reject all forms of pity but gratefully welcome your patience.




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