inside out

1 Comment

a close friend of mine who lives in Israel was badly burned over her face and neck a few weeks ago. she has been posting on her own blog lately about the struggle she is having to come to terms with people looking at her face, and people seeing her in a way that she feels doesn’t reflect who she is.

although she is also posting about many other aspects of what she is dealing with, because she is being very brave to speak publicly about this particular issue I feel like it won’t infringe on her privacy to discuss it here.

my friend is a very beautiful person, both inside and out. she is one of those rare individuals who is constantly working on herself, and who consistently has a message worth hearing. but you might miss that if you only wanted to gape at the burns on her face.

she has more courage than any dozen people I know, and she has the fortitude of an army, but I could see how people might miss that if their main concern was how much scar tissue she was going to have after her accident.

she is one of the best moms I have ever met, and seriously one of the best human beings, but if your biggest way of sizing someone up when you meet them is by how creamy their complexion is, she just might not measure up to your high standards right now.

listen, it’s a very real thing that we all have to make judgments about the people we come into contact with. I would be pretty disingenuous if I told you I didn’t judge people a gazillion times a day, or even that I thought people shouldn’t judge other people. I think we were given common sense for a reason- in order to be discriminating so that we don’t make stupid decisions that we could have avoided.

but I have also been on the other side of this double-edged sword. when I was in a wheelchair I became an instant nonentity. I was spoken down to, condescended to, talked over, or ignored completely. people avoided touching me when they gave me change, watched as doors closed in my face or as i struggled with one thing or another and they stared without helping. i was gawked at openly and ridiculed by folks who should have known better.

did i grow from the experience? not really.

ha! i bet that was a surprise, huh?

i know i am supposed to say how it made me such a better person, and how i don’t regret it, because it made me who i am today. well, the truth is, i was compassionate before i was in the wheelchair. i was already kind, so i can’t say it was transformative. mostly it was just hurtful.

it was painful for me and awful for my kids.

one day, after being very excited that *h was home and i could finally get out of the house with the family, we were all going to go for a walk (technically, i was going to go for a roll…). one of my very little kids asked me, “mommy, is it ok if you don’t come? i don’t like when you go out with us in your wheelchair because people stare at us…”

wow. from the mouths of babes…

so i feel for my friend. i have a very small idea of what she will be going through over the next few months once she is out of the hospital. she has to stay out of the sun, which pretty much leaves her indoors during peak hours anyway, but venturing out when you are on shaky ground with a “new you” is hard stuff. i hope people will be kind to her, but i also know that people are naturally curious.

I’ve written lately about struggling with the fact that TBIs are so invisible, and that we can be so bad off and yet nobody knows. but hearing about what my friend is going through makes me so grateful that i have the option of being invisible. because some days when someone asks “how are you?” and they don’t really care, i like to answer “fine”- because i don’t really care about them either, and who needs a while dissertation on my health situation? but my friend doesn’t get days off…

i know how beautiful she is, and she will always be that way to me, regardless of how her face looks when it heals. i think all of the people who love her feel that way. i wish i could walk in front of her with a sword and a shield and fight off all the bullies who would be unkind to her while she is recuperating from everything she has been through. life is tough enough without having to worry about being judged about something as silly as your face.

don’t you think?

scam-in-progress

5 Comments

i am going to tell you about a phone call i actually got today, since it may save some of you from getting into trouble. the only problem is that by the time i hear about these types of things, they have usually been around for a looooooooooooooong time, so this might not be big news. oh well. on the chance that it is news to you, i’m gonna write about it.

someone called me today from _______________ tech support (fill in any official sounding company name). the man- who sounded exactly like a tech-support guy- asked if i was the person whose name the phone was in (or the lady of the house or the adult at home… i don’t know. i was 1/2 paying attention. the caller ID came up as a generic name like ‘sarah miller’, and i was trying to figure out who sarah miller was and who this guy was and what vegetable to make with supper tonight…). so i said yes, hoping he would get on with the call so i could figure out what he wanted.

and he launched into some shpiel about how our computer had been downloading some bad information and sending them error reports and he could fix them, so at first i thought he was trying to sell us anti-virus software, but then i paid more attention to what he was saying. i started to blow him off, saying i didn’t really deal with computer issues in our house, but that got him very excited for some reason, and he offered to fix the problem for me over the phone if i could go right now to our computer and he could talk me through it.

uh oh. red flag.

i had him repeat everything again, just so i was could be very sure about what he was saying.

now i am no computer wizard.

like, not at all.

but he was very generously offering that i could log onto my computer and allow him to pretty much hack into it remotely and- i’m fairly certain- help himself to all of our private data. oh, and use our accounts for heavens-knows what else.

now this is quite frightening, because he was very self-assured about the idea that OUR computer had been sending THEM reports about getting all kinds of bad things happening to it. i’m sure that elderly people would believe this in a second. if i wasn’t a voracious reader<strong> i</em> am the type who might believe this in a second…

my younger kids may very well have walked him straight onto our computer, and luckily the one who would have been fooled by what he said doesn’t have any passwords to get onto anything.

unrelated, yet quite related, i was just reading the other day about someone who actually sexually abused people OVER THE PHONE. he was so confident and self-assured. he would call stores and convince employees that he was with the police department and he was investigating them for theft or some other petty crime and he would literally have them perform strip searches on each other and other lewd acts while he listened on the phone by threatening them that if he had to come into the store to ‘take them downtown’ it would be much worse for them criminally. by the time he was caught he had done this to dozens of victims.

you think that crazy stuff could never happen to you because you would always know better and you could always suss out a scam. but people fall victim to scams every single day. professionals get away with this because they stay one step ahead of us. for every trick we hear about, they are cooking up 12 new ones.

so, if you get a phone call or a knock at your door from someone you weren’t expecting, just be careful. you don’t have to be paranoid, but you do have to be diligent.

my policy is if i want your services, i’ll find you.

otherwise, my front door exists for your protection.

and this is why you love me :)

6 Comments

2 atoms are walking down the street.

1 atom says, “oh no! i just lost an electron…”

the second atom asks, “are you sure?”

the 1st atom responds, “i’m positive!”

hope you’re having a great weekend :)

brain injury awareness and props to *h

6 Comments

this post has been long overdue, but frankly i have been too much of a brat to write it. one of the things about brain injuries that is either under-addressed, or i just have not found enough information about, is the toll that brain injuries take on relationships.

navigating relationships post-TBI is pretty dicey, because on top of being more prone to outbursts of temper and emotional instability (sorry, honey, it’s not me- it’s my brain…)the person with the TBI is also simultaneously more fragile. medically they may have gone through hell, and may still be going through all kinds of intense medical situations that make people around them very hesitant about putting them through even more stress. if the TBI involved something like a brain bleed, there can be fears (sometimes real, but usually not) that making the brain-injured patient upset can cause another bleed.

certainly i’m not advocating picking fights in the ICU. but once someone is medically stable (whatever that looks like for each person will be different, and sometimes limited stability is all we get…) we can be a lot tougher than we seem. but it is hard for people who love us to trust that, and it can be easier to dance on eggshells and to get in the habit of just giving in to us to keep the peace. this can lead to lots of simmering resentment on the part of the non-brain-injured party, and lots of confusion on the part of the person with the TBI, who may have problems deciphering subtleties in interactions that people without TBIs are reasonably expected to pick up on. without lots of patience and good communication (both of which i will remind you that most TBI patients lack, at least in the chunk of time following their TBI), this can put extreme strain on a relationship.

add to this that the primary caregiver of the person with the brain injury is now probably picking up the slack in other areas of life that used to be shared and this becomes a lot tougher. add to this that brain injuries are not time-limited or even understood the way that other things are- so there is no, “don’t worry, you’ll be out of that cast and walking around in 6 weeks mrs. jones!” and no, “just let that burn heal for 10 days and don’t get it wet- so no washing dishes! it’s fine; we can use disposables for 10 days…”- with brain injuries you just heal at whatever pace you do, for however long you do, however much you do, and i’m sorry to throw all the good doctors out there under the bus who are trying very hard to understand brains and neuroplasticity and whatnot… but doctors understand very very little about how brains work, and much of what they thought they understood has been wrong. so even the people who are trying to help you often can’t give you what you need. they can’t give you time frames…

in special forces training when they want to put recruits in a maximally stressful situation, they tell them that they will be in an exercise of indeterminate length and duration. so they will have to exert maximum effort at all times, while still trying to hold some energy in reserve in case the training scenario stretches on longer than they could have anticipated. imagine how crazy-making that is. if they give 100% of their best upfront, they might get exhausted and be unable to complete the test. but if they hold back and it ends up being for nothing, they never got to shine. but they have to try as hard as they can, while simultaneously never knowing how hard to try or exactly what is expected of them.

i think that’s what it’s like to be a caregiver of someone with a TBI. like babies, we don’t come with instructions. like children, we are each different in our needs, abilities, development, and personalities. and like good parents, good caregivers have to go a lot on their instincts. when is it better to help and when is it kinder to pull back and let us try on our own- even if we might fail or get frustrated 7,000 times? when is it better to give us what we want and when is it important to stand your ground and have a voice? when does it makes sense to do everything and when does it make sense to change the standards so we can do our part too?

12 years post-TBI *h and i are still figuring out the answers to these questions. they change as time goes on and they change based on where i am medically at any given time. things have not always been smooth for us as we have tried to navigate these waters- sometimes harder for him, and sometimes harder for me. we have had some times of real heartbreak and some times of real togetherness. at times, *h has been anything but a *, and at times i have hardly deserved a *, but we are working on that. through it all, he has stayed committed to our family, and that is no small feat in the face of something as huge as a TBI.

truly once your brain gets scrambled, things are never the same. i hold onto a hope that they can be better, although i don’t always believe that. i guess part of the majesty of being a human being is that in spite of all evidence to the contrary, even on days where every neuron in my body is firing wrong, i can still believe that healing will be possible.

and i guess that’s the most transcendent way to survive with a TBI.

march is brain injury awareness month; grease is the word

8 Comments

i really wanted to be in a good head space to write a post about dealing with a brain injury. i wanted to write something very uplifting, about how although life is different now, it is no less fulfilling or gratifying. i wanted to give hope to other people who are dealing with TBIs (traumatic brain injuries). but this isn’t going to be that post.

when i thought about the one word i would use to describe life with brain damage, that word is grease.

i know that’s kind of an odd choice. it has no emotional content (even for me) and no special connection to brains or illness. but ever since my brain became altered, i feel like my life has become very greasy.

words and goals slip away from me with equal ease. my relationships are smooth as silk or on the edge of collapse at any moment depending not so much on external factors as on how well my brain is firing at any given time- although what i am experiencing feels very real to me so i can never tell at the time that only my brain is failing and not my relationships. my days in bed slide into weeks that sometimes smooth greasily into months and before i know it my kids are unraveling because i am so unavailable.

things that should be easy are hard, like going to the library to return books, and things that should be hard are sometimes very easy because my brain locks onto things it can’t let go of- like how best to organize a closet, which i can then focus on exclusively for hours at a time. things i should know i often don’t- like how old i am (that’s a greasy fact in my brain, along with the order of the last few presidents). and things that some people find hard to understand are easy for me, but i don’t know why.

a lot of the time i seem to have a lot of clarity, but on the more greasy days i am usually in bed so it can be hard for people to understand just how compromised my functioning can get. this is one of the more difficult challenges of a TBI- that it is invisible. so if i am at a store and i can’t understand how much something costs, i will pay with a debit card and nobody realizes that i can’t understand money on that day. if i can’t remember how getting gas works, i will either drive the car that has gas in it or skip running errands for that day. if i can’t put together coherent sentences i don’t blog and nobody is the wiser.

some days i read neuroscience texts and some days i can’t understand enough written language to read a recipe- and that’s not an exaggeration. some days i am grateful for the resilience of the human spirit so i can keep fighting and some days i wish my body would just give out already because i am so so tired of fighting and i feel like i can’t do it any more.

if i had to do this all over again- and by the way, i highly do NOT recommend getting a TBI if you can avoid it!- i would find a support group. i would find *h a support group. i would find my kids a support group. of course the irony of all of this is that when one gets their brain blasted to bits (by whatever mechanism that happens), one is the least able to find or get to any support group. we actually had no TBI support groups in my area, but in hindsight, i wish i would have tried harder to find one on the internet. but i was so busy surviving that it didn’t occur to me to find a support group. and then i was so busy trying to be amazing and heroic that i was too busy trying to be amazing and heroic and i sort of overlooked the fact that i was also falling apart just a little.

and so was my family.

because the family of someone with a TBI is very much collateral damage. and i’m not sure how much is said about that, but i’m sure that more needs to be said. i’m sure there need to be more resources for them, because however invisible we are, they are invisible x10,000.

while we are getting treated and doctored and physical therapied and occupational therapied and evaluated and tested, they are the silent support staff, expected to be ever patient and constantly tolerant. they are expected to put up with our moods and our meds and our side effects and our accompanying nonsense, all the while smiling and being grateful that we are still around.

but guess what? it isn’t always a picnic that we are still around. people with TBIs are not always fun to live with. our personalities change and we get angry and ornery and frustrated and instead of being grateful that we are still around, we vent all over the people who are trying so hard to be patient with us.

a few months ago i read a book about a woman whose son was hit by a car and suffered a brain injury. she became active in the brain injury awareness group in her state, and i was like, “eureka! there is such a thing! maybe there is one in my state! i should look that up…” so weeks and weeks passed during which i did nothing. then i finally looked online and found out that not only do we have such an organization here, but we also have about a gazillion support groups and a bunch of them meet very near my house. and i was so excited and inspired and i was like, “whoa! this could be a game-changer! i must go to these groups!” whereupon i did nothing to follow up.

and then i had a fairly bad health crash, which i am still crawling out of, and that is the greasy nature of my TBI- things glitter in front of me and i fail to grab hold of them. or i grab them too tightly and they slip away. or i misjudge the distance and and and…

i want so much to be a TBI success story, and in some ways i am. i am still married, and i haven’t committed suicide. statistically, this puts me ahead of the game. i can walk and read and drive- all things i was never supposed to be able to do again, so this means i have exceeded my prognosis. but i am also at a point where for almost all of my children, they can’t even remember a time when i wasn’t sick. i am at a point where i dread anyone asking me for anything because i feel like it is just one more opportunity for me to fail at something, and that is a very horrible place for me to be. i am at a point where i committed to writing a post for brain injury awareness month, so here it is. i wish it was more positive, but the month isn’t over yet, right?

visions of sugarplums

4 Comments

when i was little, we would sometimes catch snippets of ‘the nutcracker’ ballet on TV (go, public broadcasting!). the only thing i really remember about it was the dance of the sugarplum fairies, and the constant feeling of being very perplexed about what a sugarplum was, but knowing- just knowing- that it must be something very very special to have a whole fancy ballet named after it. i couldn’t put together what the dance movements had to do with sugarplums or fairies or christmas or scary soldiers, but i always felt like i had been privy to an important secret after watching the ballet.

as the years went by, i never did manage to figure out what exactly a sugarplum was, but in my imagination, it was always a fanciful thing. it belonged on a king’s table, and it would be stacked with other delectable things. it was always somewhat magical- a vaguely sugar-coated something that was maybe a fruit or maybe a candy, but for sure an amazing treat. if i ever had the chance to try one, i probably would have said no, because i don’t know if the real thing could have lived up to my visions of it. which is probably also the reason that in the days of google and instant information i still haven’t looked it up: because some things are better left to dreams.

but this sugarplum- the one of my imagination- is a perfect metaphor for the feeling i get when something wonderful is just outside of my conscious understanding. i think we all have moments like this, where we can almost touch greatness, but not quite. it is right there on the periphery of our minds or our lives or our selves or our relationships- and although we can strain or fight or stretch, it stays just outside of our reach. sometimes this is so frustrating, but sometimes it is equally beautiful to me.

because it means i am so so close. it means i am within striking distance. it means there is only a mist between me and delight.

this morning i went outside to feed the one remaining chicken. this was quite a feat, since even though it’s been over a week since i was in the hospital i am still not back to my old self. i am having a more difficult time than i thought i would bouncing back, and i am trying to not be overly hard on myself for doing a lot of laying around. but this morning i went outside and the air smelled amazing. it was clear and fresh and promising.

isn’t that a weird thing to say about air? of course it is promising. it promises that if you suck it in, you won’t die. you breathe it and you live. that’s quite a lofty promise, and air is full of it, every single moment of every day! (which, incidentally, we almost never pay attention to…) so here i was, surrounded by this glorious air, and it was even better than normal! it was like sugarplum air :)

so what does that mean for me? it means that i felt like something good was coming. it felt like i was okay. it felt like weight came off me. it felt like the world smiled at me. it felt feels like i should try 10 million more times to tell you how it felt and i still won’t get it quite right because it was so uniquely touching to me and so uniquely uplifting. and because it was right there on the edge, instead of in clear focus in the middle, i can’t get it nailed down.

march is brain injury awareness month, and i have committed to myself that i would try to write something this month about that. but let this be a short introduction to the topic: as part of my own struggle with being brain injured, i have to continuously remind myself that the best i can do is the best i can do. as long as i can honestly say that i have put forth my best effort in something, i should be able to walk away clean afterward, without guilt or recriminations.

in life, we all have struggles and fears and challenges. we can choose to focus on those, or we can choose to look for the sugarplums. and even if we can’t be exactly precisely clear on why the sugarplums make us feel good (or what the heck they even are), we can just be happy in the moment. joy in this life can be so fleeting; i say grab it when you can!

and i wish you handfuls overflowing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

hero-in-waiting

6 Comments

i heard about a new program that is being tried in some schools, and i really hope it catches on. the idea captures such a powerful paradigm shift that i knew i had to write about it, because i think it is dead-on true, and because i think more people should be thinking along these lines.

i’m not sure who is responsible for developing this idea, but it may be the person who wrote the book the lucifer effect (which is now sitting in a pile on my bedroom floor, so after i’ve read it i may be able to let you know more…). in any case, the idea as i understood it is something like this: our idea about a hero is completely wrong. while most of us think HERO and picture a cape and superpowers, the actual real-life hero is much more likely to be the average guy (or gal) on the street who pulls someone off of the subway tracks after he’s had a seizure or stops an assault by turning on a bunch of lights and calling 9-1-1. real heroes are the people in each and every moment who make a decision- either consciously or unconsciously- to act in a noble way.

and that is something that can be taught.

so while you can’t go into a school and teach kids to bend metal rods with their eyeballs or reverse the gravitational pull of the earth, what you can teach is that, by practicing making moral and correct choices they strengthen their “hero” muscle. and when, someday, they each may be called upon to make a defining decision, they will be that much more likely to make the right one.

studies have shown time and again the one of the easiest ways you can get someone to behave outside of their moral comfort zone (in a bad way) is to put them in an unfamiliar situation. so, while i might be very comfortable taking someone to task in my own home for telling a racist joke (i am a bad example of this, by the way, because i have a big mouth, so i exercise my moral muscle a lot- hahahaha), i would in theory be much less likely to tell off that same person if we were at a social gathering or in the home of a stranger. the less at home i felt, the less likely i would be to take a stand.

this can be explained by a number of factors. obviously if i am in an unfamiliar setting, i may not know the expectations or the correct social behaviors. the more attuned one is to these cues, the less likely one would be to violate them, which may explain why reserved british *h frequently wants to run and hide when he sees someone acting out of line in public. because he can watch my blood pressure rise, and he knows that if someone’s behaviour gets to a certain level of unacceptablility, i just might intervene to take it in hand. this makes him alternately proud and mortified, i think, but this is the price we pay for exercising moral muscle…

in the school programs, they teach children that they will feel uncomfortable when they observe bad behaviour or sticky situations. but this is not a signal to shut down. sometimes it is a signal to step up. obviously they are not telling children to put themselves at risk. this is not a curriculum that tells little kids to try to stop muggings single-handedly or to take on bullies with physical force when they have no hope of not getting beaten to a pulp. this is about being diligent to return the change in a store when you are given too much. it’s about carrying someone’s packages when you see they are struggling. it’s about not fake-laughing at a mean joke just so you can feel in with the popular kids. it’s about reaching around to your back and feeling those hard bumps and knowing that’s a spine and it’s there to hold you upright. and each time you stand just that much taller. because you know you are a good person who acts in a moral way. and that means something.

because a hero is built one act at a time.

when you think about it, there isn’t too much difference between a person who walks over to a person in tears and asks, “can i help?” and a person who walks past. but really, there is a world of difference. there isn’t a lot of time involved in saying thank you sincerely, versus merely mouthing the words meaninglessly and moving on with your day. but looking someone in the eye and giving them some real appreciation for whatever they did for you- even if it is what they were supposed to do (like making your coffee hot or putting a bandaid on you or clearing your salad plate)- can change someone’s entire day. and how super-hero-level-powerful is that???

in general, it is one of my great aggravations in life when people redefine words to suit the meaning of the moment. whether something is politically charged or not, i think that if you have a new situation, you should think of a new term to fit it. so when i call these small acts of nobility “heroic”, i really do mean that. i really do mean, in the literal sense of the word, that by acting in a moral and righteous way, that you behave like a hero.

and i wholeheartedly agree with the idea behind the school curriculum that the more you can get kids to practice this skill in small comfortable ways, the more it becomes part of their nature so that they are more likely to see themselves as heroes and behave as heroes in big ways.

i think that in this world, it is an act of exaltedness, it is an act of rebellion against the norm, it is an act of defiance of mediocrity, and it is an act of true heroism.

now the only question left is, what kind of hero will you be?

Older Entries

Follow

Get every new post delivered to your Inbox.

Join 25,315 other followers