Pacing myself for Christmas

Christmas wrapping
The final push is on…

It’s Friday. I have the day off work. I still have to do some daily “housekeeping” tasks for work, but it’s not that big of a deal, because it doesn’t require that I pay attention at all. Just start a program at 6:30 a.m. and wait for it to finish a few hours later. I should probably fix it so that it kicks off by itself.

I’ll do that later today.

Yesterday was get-it-all-done-before-the-snow-flies day. We’re supposed to get a bunch of snow and rain today, which could get messy. It’s not the kind of weather you want to be driving in, so I won’t. My spouse and I spent yesterday afternoon and evening doing our last-minute shopping, and we got just about everything done. So, that’s good.

It wiped me out, but it was good. Now I just have a bunch of stuff to wrap. And that’s fine. Because I have three days to get that done — a big improvement over past years, when we couldn’t get ourselves in gear before the very last minute.

All that last-minute shopping of years gone by just boggles my mind. How did we do it? Chaotically and crabbily, as a matter of fact. And it pushed me to my limits, year after year. But Ye Olde attentional problems and executive function issues kept me/us from getting ahead of the game and preparing in a timely manner. We always needed the stress of last-minute pressure to put us over the finish line, and it took a toll, year after year.

Of course, that’s just how things were, so we never thought to do things differently. And it took a toll. Good grief, when I think about all the drama and yelling and frustration… and how my spouse and I just took that for granted… I’m glad things are different now.

Part of it is that we’ve both gotten older and more tired, so we don’t have the energy for all that whoop-de-doop. Who has the energy for squabbling? What does it accomplish, other than sharpening our sense of being “ON”?

Come to think of it, that was a huge draw for us. Getting all worked up over things was a great way to perk up the old tonic arousal and get the brain to think it’s awake. That “pump” from the drama literally made me feel like I was alive again… a better state of mind than the steady level of dullness that came after my concussion(s). So, getting all “drama’ed out” was a way for me to wake myself up and get myself feeling normal again.

That’s not a small thing. It’s a critical thing. It was central to my Sense-Of-Self, and while it did make me pretty tedious to deal with during the holidays, it nevertheless played a role in making me feel like myself again.

But eventually that got old. And I learned new ways to perk myself up. Like getting regular exercise, first thing in the morning. Like getting the crap food out of my system. Like finding things that really made me feel great and focusing on them… not the things that made me feel terrible and perked me up as a result.

It’s an ongoing process, of course, and I’m not perfect. I still have my moments. Heaven knows. But things are a heck of a lot better this year, than they’ve been in past years.

And this year really I’ll be ready for Christmas.

There’s a first time for everything.

Advertisements

TBI-Friendly Grocery Shopping Chops

grocery store scene with shelves of produce
Shopping frequently saves me a lot of hassle

I grocery shop almost every day on my way home from work. I do this for several reasons.

  1. I hate to eat defrosted frozen food. I like meat — and vegetables — to be fresh when I cook them. I don’t own a microwave, and I hate dealing with frozen foods. They don’t taste as good, and they don’t seem as healthy as fresh food. We used to eat a lot of meals “out of cans and boxes” — cans of soup, ready-made meals we heated in the oven, frozen combinations we stirred up with cooked pasta. But since my spouse got ill back in 2007 and I started doing all the cooking, I just can’t bring myself to do that. I need real food. Fresh food. And I’m happy to shop every day to get that in the house.
  2. Shopping every day keeps my shopping lists short, so I don’t lose track of things and I don’t end up wheeling around a cart piled high with stuff in all sorts of directions, when I remember that I forgot to get something on the other side of the store. If I have a list of 10 things, I’m good. I can manage that. More than 10 items becomes a trial and a test, and by the time I get to the checkout lane, I’m in a terrible mood. It also makes it easier for me to go through checkout more smoothly, without a lot of anxious fumbling with the card reader and getting turned around about which way to leave the store.
  3. Buying fewer items lets me go through the self-checkout lane. Cashiers and baggers are helpful, but I’d rather do it myself, thank you. I don’t have to interact personally with a machine. I don’t have to exchange niceties and keep an eye on the bagger who was never taught that you put the heavy things at the bottom of the bag, not on top of the fragile/breakable things.
  4. It gives me extra time to chill out before I get home from work. It’s a stop off that lets me recalibrate and reset with strangers, before I interact with my spouse. And that’s helpful for both of us.
  5. It’s on the way home. Literally. It’s just off the highway, and there are actually three different choices of very different — and good — stores on the way. So, if I can’t find something I need at one, I can always go to another. Stopping off to shop also gets me out of the worst traffic at the worst time of day, so that’s a major plus, as well.
  6. It’s familiar in a way that reminds me of when I was younger. Years ago, I lived in Europe, and it was back in the day before there were a lot of preservatives in foods. I got in the habit of shopping daily, just like everyone else, and I really miss those days. Doing my grocery shopping every day, nowadays, makes me feel like I’m 20 years old again. And that’s a good thing.

So, shopping every day actually works well for me. It not only helps me handle my own personal “combination” of issues, but it also adds something positive to my life. It’s all about making the most of things, despite my shortcomings — even using them to my advantage.

It’s all good.

Onward…

I have seen you walking in the rain…

And I wanna know why you are crying…

Baby, lemme fix what’s wrong…

This song always gets me.

Especially when I am shopping after a long day at work.

The thought that someone is asking why I was crying… and wants to fix what’s wrong.

Those days when I am so worn out and confused and just going on auto-pilot, hoping I don’t get hurt or hurt somebody else… blundering and stumbling and feeling foolish… and not knowing if the cashier’s sudden laugh was at my expense…

Just having someone sing those lines, as I’m putting boxes of instant rice into my shopping basket…

It was raining outside. And this song brought tears to my eyes.

Guest Post: Why I Hate The Invisible!

Speed can do some serious damage – and so can attitudes

Another great post from our friend Ken Collins

37 years ago today, I was recovering at my parent’s home in Oakridge, Oregon after I ran head first into the side of a parked car while riding Pat Moore’s snowmobile by Summit Lake, Oregon, at 4 a.m., on December 31, 1976. My friends who were there saved my life and said I was going full speed when I hit the car and was catapulted from the snowmobile to the side of Bob Brewers Ford Pinto.

On impact, I broke my left jaw below my chin and rammed my right jawbone through my ear canal, separated my skull completely (cap fracture), shattered most of my teeth and fractured a rib. In the hospital the doctors couldn’t set my jaw for two days because of brain swelling.

My hospital records show that I was in a Posey Jacket and wrist restraints all the time I was in the hospital. One day when I was in the bathroom I yanked out my catheter and a few days later were sent home with my parents because I started to get loose (3 times in 6 days). On my last day in the hospital I was found urinating in a planter in the hallway.

For my own safety and the liability of the hospital, I was sent home with my family who were told if they couldn’t handle me then put me in a nursing home. Luckily my family spared me the fate that awaits many young people who sustain these types of injuries: long term confinement to the nursing home, long term rehabilitation facility or state institution – unless they have good insurance, but when that runs out and they become “poor”, many will be forced to have the government pick up the tab. This starts by applying for Social Security Income (SSI).

After people go on SSI, they will become eligible for Medicaid, which will pay for long-term care in a nursing home or institution, if Medicaid home and community-based services aren’t available to them in their state. These services are critical if the person with a disability wants to go back home and try to get on with their lives.

This new life also comes with having to survive on $498.00 a month Social Security benefits to pay for shelter, food, utilities and whatever else they can afford. When they are lucky enough to have a long work history they will go on Social Security Disability Income and make more, maybe $600 to $900 a month. What kind of life can you afford on this income?

Oregon was one of the first states in the U.S. to develop Medicaid home and community-based services. This was all after my injury, and if home and community-based services would have been available, I might not have had to steal food and do other things that would have put me in jail or prison if I’d been caught. It’s humiliating to have to steal food to survive.

Humiliation is invisible: that’s why I hate the invisible!

Every night when I would go to bed and close my eyes and try to sleep I would see –
pictures of people, images and objects floating by as I lay there with my eyes closed. They were like negatives of pictures just floating by. Faces of people looking at me, pictures of people setting or pictures of several people setting or standing, all kinds of scenes and images floating by as I tried to sleep. When I would finally get to sleep I wouldn’t dream. In the morning when I awoke it was like I didn’t sleep at all.

These pictures floated by for about five years, and it took another five years before when I closed my eyes – the face of the man with a beard and long hair looking at me on the other side of my eyelids went away.

Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.

Before my accident I was a professional baseball player and everyone’s friend. After my injury, when I would see the same people in the community – they would go the other way.
The struggle and turmoil caused by brain injury is invisible: that’s why I hate the invisible!

It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.

To look at me now, 33 years later, you would never guess that I have had such a difficult time. I have faced many of society’s barriers, most of these attitudinal. Attitudes are invisible and are fueled by ignorance and fear to create invisible lines of prejudice and discrimination. Attitudes are invisible and breakdown trust, hope and our own well-being.

Attitudes divide us, separate us and control us: that’s why I hate the invisible!

Handicapped gets its origins from an old European phrase, “cap in hand” when people with disabilities had to beg to survive. Why is it that people with disabilities are forced into begging the Congress and Senate every year not to cut Medicaid, food stamps and other programs they depend on to survive? Politicians say they care and are full of promises to help. What they say and what they do are two different things: that’s why I hate the invisible!

Invalid and invalid are spelled the same, but have different meanings. These words perpetuate the stigmas and stereotypes people with disabilities must wear.

Stigmas and stereotypes are invisible: that’s why I hate the invisible!

People with disabilities are often referred to as “invisible” because we don’t have the means to be heard. We don’t have the money to pay a lobbyist to hang out at the capital. They say: “we need your input” but when we offer it – our input is disregarded all in the name of “health and safety”.

Paternalism is invisible: that’s why I hate the invisible!

Away we go, trying to rebuild our shattered lives in a society that does not equip us to deal with the prejudice and discrimination we will face because of our disabilities. When we fall short of our personal expectations we fall victim to a paternalistic system that tries to fix our every move and keep us safe and not allow us to learn from our mistakes just like everyone else.

Last week, when I was job developing with a 48-year-old man who has a brain injury and a long and productive work history, and I ask the manager, if they were hiring. She has worked with our agency before so I consider her to be a lot more educated about employing people with disabilities than most in Gallup.

As I ask her about hiring Robert, she announced to me in a loud voice as she stood by the cash register, that she doesn’t have any opening right now but, “I have worked with people like that before” looking straight at Robert as if he was invisible.

Didn’t she see his shoulders slump when she uttered those words? Didn’t she see how he looked at her after she said what she said? Doesn’t she understand that words can cut deeply just like a knife and cause unseen pain that reinforces the stigmas and stereotypes we must overcome if we are truly going to become equal members of our community?

Many of my friends use wheelchairs to get around because of accidents, injuries or illness. When we go shopping in stores or go out to eat at restaurants something that usually happens is the clerk or server will ask “me” what “they” want? Sometimes they speak louder when they ask them what they want.

I guess because they can’t walk that means they can’t hear either?

How often do we hear someone call someone or something “retarded” without regard to what they are saying? This phrase is despicable and degrading to people born with mental retardation and yet we hear the “retarded” phrase just about everyday. There is a very good chance that you use this word as part of your own descriptive vocabulary.

When people with brain injuries and advocates try to educate people in our society about how this word should never be used because it hurts peoples feelings and is degrading we are faced with indifference.

Indifference is invisible: that’s why I hate the invisible!

People with brain injuries want to live just like everyone else. We don’t like to be made fun of or talked down to. Honor, embrace and value our experience and knowledge we have gained.

If you hear someone call someone “Retard” – “Crazy” or other degrading names – speak up and educate them about what they are saying. If you see someone making fun of someone who has a brain injury or retarded – speak up and tell them not to do be so ignorant!

Don’t be afraid to speak up and be heard, because nothing gets done when you say nothing and become invisible!

Doing it differently this holiday season

I did something quite unusual last night — I went Christmas shopping by myself at a much slower pace than usual. I didn’t manage to buy everything I set out to, but I got everything I could, and I got through the experience in one coherent piece — and I was able to get my nap after I got back.

Normally, this time of year is marked by team-shopping with my spouse. They contact everyone in the family and find out what people want… or we talk about what we think people want, and then they make up the list. We take the list, hop in the car, and head out to stores that look like good candidates, then we slog through the process of elimination, muddling our way through… with me getting so fried I either completely shut down and become non-communicative, or I melt down and fly off the handle over every little thing.

We usually spend several evenings like this, ’round about this time of year, and we’ve both come to dread it a little. My meltdowns had become more extreme over the past few years, and this year we were both really dreading the whole Christmas shopping business — to the point where we are going to be late(!) with presents for family members in other states. That’s never happened before. We were always good about it. But my meltdowns screwed everything up.

We both recognize that doing a lot of social things, this time of year (when work is actually getting more crazy, what with year-end and all), takes a huge toll on me. Even if it’s with friends (especially with friends), all the activity, all the interaction, all the excitement, really cuts into my available energy reserves. And then I get turned around and anxious… and I either regress to a cranky 9-year-old state, whining and bitching and slamming things around… or I melt down, start yelling, freak out over every little thing, and start picking at my spouse over things they say and do, to the point where neither of us can move without me losing it.

What a pain in the ass it is. Of all things, the uncontrollable weeping bothers me the most. The yelling bothers my spouse. It’s embarrassing for me and frightening for them, and neither of us has a very Merry Christmas, when all is said and done.

So, this year we did things differently.

We split up for the day and took care of our respective activities.

My spouse went to a holiday party that was thrown by a colleague of theirs who’s married to an attorney who deals with financial matters. I was invited, too, but we both realized that it would be pretty dumb for me to try to wade into the midst of 50+ actuaries and tax attorneys and their spouses who were invited to the shindig… and try to hold my own. Certainly, I can keep up with the best of them, but marinating in such a heady soup, especially with everyone hopped up on holiday cheer (eggnog, red wine, punch, etc.) and all animated and such, would have been a recipe for disaster.

So, I didn’t go. Instead, I took our shopping list and headed to the mall to stock up on what our families had requested. We had written down in advance all the names and the specific gifts we were going to get, and we had also written down where we were going to get them. That list was my lifeline. Especially in the rush and press of the mall, which sprawls out in all directions, with satellite stores on either end.

I’m happy to report that I actually did really well. I made a few tactical errors — like not parking in the first lot I came to and walking in. But that turned out okay, because if I had parked in the first lot, it would have been all but impossible to get down to the other end of the mall. I studied the list carefully ahead of time and used a highlighter to mark the stores where I’d be going. I also kept my focus trained on the task at hand — even if it was just sitting in traffic. I also walked a lot more this year than other years. I found one parking space and used it for two different stores. And I didn’t hassle with finding a space that was as close as I could get to the building. I took the first decent spot I could find, and then I walked to the store.

Imagine that — in past years, I was possessed with finding parking as close as possible, and I would move the car between stores, even if they were only 500 yards apart.  This year, I just walked the distance. Even though it was cold, for some reason the cold didn’t bother me, and it actually felt good to be out and moving.

I think that my 5 months  of daily exercise has paid off, in this respect. I think part of the reason I was always consumed with driving everywhere was that I just wasn’t physically hardy. I was kind of a wimpy weakling, in fact — though more in thought than in body, but a wimply weakling, all the same. But having a good physical foundation — even just from doing an hour (total) of cycling, stretching, and light lifting each morning — has made a significant difference in my willingness and ability to walk between stores.

It might not seem like much, but the walking (instead of driving) between stores part of the trip actually made a huge difference in my overall experience. Walking between stores — stopping at the car on the way to stash my presents — helped me break up the activity and clear my head. It got me out of that in-store madness, the crush and the rush, and it got me moving, so I felt less backed-up and agitated. And that let me start fresh at the next store.

That was good, because the first store was a friggin’ nightmare. It was one of those big-box electronics places, that supposedly has “everything” but really didn’t. It was exhausting, combing through the stacks of movies and music, only to find everything except what I needed. The lighting was awful — extremely bright and fluorescent and glaring. People kept bumping into me, or walking so close I thought they would run me down. But the worst thing was the acoustics. Everything surface was hard and echo-y and the place was overwhelmingly loud, and every single sound was at least partially distinguishable, which drove me nuts. I’ve noticed that acoustics have a lot more impact on me than light, when I’m out shopping. The store was one big cauldron of loud, indiscriminate noise, and my brain kept trying to follow every sound to see if it mattered. I couldn’t function there. Not with the place full of people — and very agitated, anxious, aggressive people, at that.

I eventually went with a gift card and got the hell out of there. I doubt I’ll ever go back when it’s that full. When the place is low-key and all but empty, I can handle it much better. But at this time of year? Not so much.

Walking back to my car chilled me out. Sweet relief.

At the second store — a bookstore — I started to feel pretty overwhelmed. They had long lines, and the place was packed — which is good for the retailer, but not so great for me. I spent the longest amount of time there, in part because I could feel I was getting overloaded, and I stopped a number of times to catch up with myself and remind myself what I was there to buy. My list was getting a little ragged, at that point, what with me writing notes in the margins and taking it out/putting it back in my pocket. So, eventually I just pulled it out and held onto it for dear life. I must have looked a little simple-minded, but I don’t care. Everyone else was so caught up in their own stuff, anyway. My main challenge there, was not getting trampled by Women On A Mission — many of them carrying large bags and shopping baskets that doubled as ramrods to get through the crowds.

One cool thing happened, though, when I was taking a break — I had a little exchange I had with two teenage boys who were talking about some book they’d heard about. I was just standing there, pretending to look at a shelf of books, just trying to get my bearings, when I hear this one young guy tell his buddy, “I heard about this book I should get — I think it’s called the ‘Kama Sutra’ and it’s, like, about sex, and it’s got these pictures… and it’s really old… like, from India or something.”

Well, I perked up at that, and suddenly very alert, I looked over at them and said, “Oh, yeah — the Kama Sutra, man… You should definitely check it out.”

They kind of looked at me like deer in headlights, and they got flushed and flustered and stammered something about not knowing how to find it. It was about sex, and they didn’t know how to ask someone to help them. I so felt their pain…

I confidently (and confidentially) pointed them to the book-finder computer kiosk, where they could type in the title and it would tell them where to find it in the store.

“Dude, you should totally look into it. It’s got lots of information — and pictures — and it’s been highly recommended… for hundreds of years.”

They got really excited and headed for the book-finder kiosk. Here’s hoping they — and their girlfriends — have a very Merry Christmas.

That little exchange got me back in the game, so I took another look at my list and managed to find the handful of books and music and calendars I wanted to get. I headed for the line and just chilled/zoned out. I didn’t get all tweaked about how long it was taking; I listened in on a conversation for a while, till I realized it was mostly about death and health problems people were having.

Oh – and another thing that helped me keep my act together, was the 4:15 p.m. alarm that I have set on my mobile phone. 4:15 is usually when I need to start wrapping up my day at work. I need to do a checkpoint on the work I’m doing, start to wind down, and begin keeping an eye on the clock, so I don’t get stuck in town past 6:00, which is what happens to me when I don’t watch my time after 3:30 or so. I have this alarm set to go off each day, and it went off while I was in the store, which was a blessing. I had completely lost track of time and I was starting to drift, the way I do, when I’m fatigued and overloaded and disoriented.

It startled me out of my fog, and I knew I still had a bunch of things on my list to get, so I refocused and started thinking about what I would get at the next store, so I could just march in and do my shopping without too much confusion and disorientation. After I paid for my books and music and calendar, I debated whether to have my presents wrapped for free, which might have saved me time in the long run. But I couldn’t bear the thought of having to interact with the folks who were doing the wrapping. They looked really friendly and gregarious — Danger Will Robinson! Warning! Warning! Even a friendly conversation was beyond me at that point.

I realized I just wasn’t up to that, and I must have looked like an idiot, standing there in the middle of the foyer, staring at the gift-wrappers for about 10 minutes, but who cares? Everyone was so caught up in their own stuff, they probably didn’t notice me. And if the gift-wrappers were uncomfortable with my staring, they didn’t show it… too much 😉

Anyway, after I managed to extricate myself from that store, I headed for my last destination. Again, I didn’t sweat the traffic getting out of the lot, and when I got to the final store, I parked at a distance from the front doors and walked in through the icy cold, which was good — it cleared my head.

Inside, I consulted my list again and headed directly for the section that had what I needed. Halfway there, I remembered that I’d meant to buy a very important present at the first store, but I’d totally blanked on it. I started to freak out and got caught up in trying to figure out how to get back to that first store and not lose my mind in the process.  Then, I slowed down and stopped catastrophizing, and in my calming mind, it occurred to me that — Oh, yeah — they probably carried that item at this store, so I went and checked, and sure enough, there it was – score! I didn’t have to back to big-box hell. At least, not that day.

I found some more of the presents on my list, and although I didn’t get everything I needed, I made a decent dent. My partner can come with me and help me sort out the other items either today or tomorrow. Or possibly when we get to our family — they usually have some last-minute shopping to do, and they can cart us around with them. And I won’t have to drive.

By the time I got home, I was bushed. My spouse wasn’t home yet, so I called them — they were on their way home and were stopping to pickup some supper. I said I was lying down for a nap, and they didn’t have to wake me when they got home. Then I took a hot shower to get the public germs off me, laid down, and listened to Belleruth Naparstek’s Stress Hardiness Optimization CD. I had a bit of trouble relaxing and getting down, but I did manage to get half an hour’s sleep in, before I woke up in time for dinner.

My partner had a pretty good time at the party, but they said it probably would have been a disaster for me — so many people, so much energy, so many strangers, and unfamiliar surroundings. I concurred, and I showed them what I’d bought that afternoon.

We’d both done well. We both missed each other terribly, but we did get through the afternoon without one of those terrible holiday incidents that has dogged us for many, many years. Like Thanksgiving, which went so well, this Christmas shopping trip actually felt normal. It didn’t have that old edginess that I always associate with holiday shopping. It didn’t have the constant adrenaline rush. In some respects, it feels strange and unfamiliar, but you know what? If strange and unfamiliar means level-headed and low-key and plain old sane, and it means I can keep my energy up and pace myself with proper planning… well, I can get used to that.

Yes, I’ve done things differently this year. And it’s good.