Category Archives: gratitude

the woman with two brians

so much of my recovery has been boosted by being in the right place at the right time. which brings me to my two brians. yep, you read that right. not my two brains – the one i have is plenty and doing just fine.

the first brian to appear in my recovery was my nurse brian.

brian threw me a cheesecake party when i left the nursing home.

the first 4 weeks after my surgery are really nonexistent or a blur in my memory. by week 5 i was starting to be more aware of what was going on. i was in 6n, which is the neuroward at st. joseph’s hospital. i had a pretty serious brain injury and was on some pretty serious meds. the memories i have of my time in 6n mainly have to do with brian. he was my nurse – it feels like for all of that 5th week but that seems unlikely now. but he was there when it really counted – 6n that week (must have been early september) was the right place at the right time for me.

i’ve written recently about how brian helped get bob dole back with the program. that wasn’t all he did. my sense of balance was basically destroyed during the surgeries. it’s improved with a lot of hard work (i feel like i’m faking it), but in those early weeks and months it was pretty much shot. in the hospital i was basically in bed all the time, and i was still crazy-dizzy. on the rare occasions that i did get out of bed, i needed help to sit up on the bed and to stand up. later in the nursing home my mom drew “horizons” and taped them up on the wall so i’d have something to look out when i was standing up, always with someone who had a firm hold on me. eventually my brain learned that when i felt like i was leaning way over to the side i was actually sitting/standing straight up – it took almost a year until i felt safe sitting in armless chairs. but back on 6n all of that was far away. brian made it his goal to get me out of bed and sitting in the big hospital chair. i didn’t want to – whenever i even just sat up i felt like i was on the teacups at disneyland. he swore that i’d just have to sit there for a minute. i finally gave in and let him help me out of bed. i got into the chair and he walked away. in my memory, he waved to me from the door and said he’d be back in an hour or so. i’m sure that there was some serious cursing and that the bird was flying from both hands – but i wasn’t actually angry, i thought it was funny. he played it all just right for me. at that time i was really struggling with trying to bring my personality into focus, and he somehow knew just the right way to do it. how did he know that? i’m forever in his debt for that. i can feel it in my chest while i type this. i was so scared that my personality was lost, but he saw it and gave it back to me. there really isn’t a better gift.

brian likely helped me get into this chair.

another brian story can illustrate how bad things were back then. i was hallucinating a lot (i remember seeing things, and sometimes thinking that my mom and my neurosurgeon were conspiring to kill me by slicing off my head in an mri machine). when i transferred to a nursing home after week 5 in the hospital i was fairly convinced that my buddy brian was someone i made up. we had talked about facebook and i remember him saying that if i sent him a friend request he might approve it. soon after i left the hospital i got a friend request from him. i made my mom read it to me over and over. that and patrick swayze (a story for another time) were major contributions to me actually realizing that the 4 brain surgeries and crazy balance and living in a nursing home were all real things.

a good year or so later i emailed brian about that friend request conversation. he said, “and do you remember what you said next?” i didn’t, so he told me, “you said, ‘uh, you just changed my diaper. i’m pretty sure we’re friends.'” i replied with, “you’re a neuronurse. do you become friends with everyone whose diaper you change? now i feel cheap.” his response was, “the only people who’ve gone from diaper-changing to friends are you and my kids.” see? amazing.

5 months after my first surgery, my neurosurgeons in phoenix looked at my mri and decided that i needed another surgery. so my mom and i packed again and headed to arizona (much more complicated than the first time – i had a lot of meds to manage and was still in a wheelchair most of the time). when i got down there, the surgeon who was going to operate decided that the surgery was more risky than the condition (a collapsed ventricle in my brain).

i'm in the green sweatshirt, waiting for tests to show that i didn't need a 5th brain surgery that week.

so the trip to phoenix was rechristened the recovereunion. the docs wanted me to stick around for some more tests, so instead of heading right back to oregon my mom and i checked out museums (a great place to test out my newfound walker-walking abilities), watched football with my cousin mark and his family, went to the zoo with our old friend pat, made a visit to my nursing home, and went out to dinner with my tumorfest speech therapist, tina, and her family. brian had been planning to visit me in the hospital, but he took me out to lunch instead. it was great to sit and visit with him (in a booth with no armrests!). just felt wonderful.

brian has even given me some very helpful parenting advice since my phoenix days. i had some difficult times with my foster daughter who i adopted, and i reached out to “my forcefield” for help. here’s what brian said: “Sometimes I remind myself of a few thoughts on chaos: Chaos creates opportunities if you can quietly observe it without being consumed by it. The best vantage point is not one of looking in from the outside; it’s best viewed from the ‘eye of the storm’ as it swirls around you. Stay detached and observe.” that has really stayed with me and has helped me get to a healthy place about what happened, and continues to happen.

the other brian is brian, my former physical therapist. i had a physical therapist, dennis when i was in the nursing home – he worked a lot on helping me rewire my brain to know how to tell when i was in a straight line. lots of standing at a railing (with him holding on to my gait belt). my next pt was anne. anne was my home health physical therapist when i got back to oregon. she worked with me in my parents’ house for a few months – she taught me how to crawl, and how to walk with a walker.

brian and his wife brittany at tumorfest 2011

then brian was next. i started seeing him when i was able to get out of my parents’ house. at the time, i was just starting to use a walker. i liked brian right away – like my nurse brian he was able to give me just enough of a hard time, and with kindness and a great sense of humor. i remember that the first time i saw him he asked me what i wasn’t able to do that i missed. i said playing wallball and hiking. he said that he’d have me back doing both of them. at the time i laughed. i was still needing to use my wheelchair a lot of the time – i couldn’t even imagine being able to do either one of those things again.

going to my physical therapy appointment was always thrilling. the folks in the office were so kind and encouraging, and brian always had interesting and challenging things for me to do. he taught me how to one-hand walk – for those of you who haven’t had to do it, the switch from two-hand walking (with a walker) to one-hand walking is unimaginably scary. but brian got me there. even to no-hand walking, but that comes later.

on my way to physical therapy early in my one-hand walking days. this is not the correct way to wear a gait belt.

i’ve learned that the match with a physical therapist is important. and once you’ve found the right match and developed trust (physical therapists – this is important! give your client/patient things to do that they can be successful with.), having an “i’ll try anything” attitude will take you far.

i think that sometimes brian had me try things for his own amusement. and why not? i was known to do the same thing when i was teaching elementary school. one day he told me to get up on the trampoline. i’ll try anything, so i got on it. this is one of those little kid ones with the bar to hold onto. i started jumping. it was an incredible feeling. i don’t think i can describe it. elation. it was one of the greatest feelings i’ve ever felt. now, as good as brian is, i don’t think that he put me up there to make me feel elated. i think he probably though that something funny would happen, and he was right. as i was jumping up there, feeling elated, i started to laugh hysterically. jumping and laughing like a toddler. i looked around the physical therapy office and saw that everyone had stopped what they were doing to stare at me. which made me laugh even more. when brian came over and said that it was time to try something else, i really wanted to punch him. i was just having pure fun. now, if someone had recorded it, it would have gone viral.

after maybe 9 months of therapy, brian had helped me get to a place where i didn’t need to go to PT anymore. i was excited, and bummed too. brian and i had gotten to be friends by then, and he suggested that we get together sometimes as friends and do what i called “physical therapy in the wild” – like once he met me at my old gym and helped me figure out how to safely use the equipment there so that i could start going back there to get exercise.

but my favorite physical therapy in the wild was the saturday when we met up at a school playground. brian’s wife brittany came along. brian finally got to put me on a tire swing. my vertigo makes everything spin to the right, and for a while brian had wanted to see what would happen if i spun to the left – would it unwind me? so i got on the tire swing and he spun me. nothing happened other than me being able to get off the swing and walk to whatever was next – not bad for a woman who couldn’t even be in the same room with a moving ceiling fan months earlier. as an elementary school teacher i’ve spent a lot of time playing playground games, and the three of us played a few. horse, four square, and even wallball just like brian had promised.

brian even took me for a wobbly but successful spin.

brian has managed to be a friend who also happens to have an expertise in something helpful to me. an example is a few months ago when i posted on facebook that i had walked 2.5 miles without my cane touching the ground. a stream of people offered congratulations and encouragement. brian piped in with something about my cane being a security blanket and that i should try going for a walk without it. i said that i would if he and brittany would come with me. we made plans to walk that weekend, and the two of them joined my grandmother and i for our traditional sunday $2 early bird breakfast special at the dive bar down my street. i left my cane at home. it was amazing to be out without it. after that successful caneless walk, i still carry a cane because it’s a marker that people need to be careful around me. but i almost never need to use it, so i carry it in my wonky left hand which leaves my right hand open to do amazing things like carry a beverage or an umbrella. and all because brian saw an opportunity to challenge me and took it.

this spring when i was able to move into a more accessible apartment downtown, i asked my friends for help loading and unloading my furniture and boxes. brian and brittany came early, brought their truck, and stayed until i was all squared away. and they smiled and laughed and chatted with my other friends who came to help. today brian and brittany are moving from corvallis to montana. and i’m honored that they invited me to have a meal and a drink with them on their last night in town. i’ll miss having both around, but i’m excited about this new step for them.

brian made good on his hiking promise, too.

in so many ways my life would have been different without these two men. they both have spots my permanent thanksgiving card list. i’m so thankful that i was in the right place at the right time so that i get to know these folks, and i’m just genuinely glad to call them my friends.

giving thanks

in 2010 i started a new tradition. during the year i keep a list of all of the folks who have helped me somehow, then in november i send thanksgiving cards to the people on my list. i made a digital story about it.

this year there were 217 people and organizations on my list. it wasn’t financially possible to send a card to every one of them, so i had to whittle the list down to 150 (149 – i kept one card for myself). the act of revising the list was itself an exercise in gratitude, and fortunately i feel pretty confident that i’ve thanked the people who were on the original list but won’t be getting a card from me. i found a card i liked at tiny prints. i looked through my pictures from the last year and came up with 4 that were pretty representative of the year i had. i’ve been able to put more of my energy into living my life instead of into recovery, regaining things i’d lost. so the pictures are from some experiences with friends and family. well, i’ll show you.

what do we have here?

top left – with molly and zari at zari’s graduation from willamette university. zari has been my friend since she was in preschool, which means that i’ve known molly since they buddied-up around middle school. two very awesome ladies.

top right – kristin and i eating lunch in montrose, a haunt from our elementary school days. the picture was taken by my friend sandy from high school. it was the first time those streams had crossed (there is nothing dirty about that sentence, so knock it off). before that week, kristin and i hadn’t seen each other in about 25 years.

bottom left – me with emily. we’d just ridden the ohsu tram in portland – my first time. it was a lovely day with amazing views of mount hood and mount st. helens. the picture was taken by my cousin mark. he was visiting from arizona. also off-camera is mark’s friend k.c. – they had a thanks-to-facebook reunion that day.

bottom right – me with my grandma betty. my friend lisa took this picture at tumorfest. that’s the lovely brick wall that i see when i look out my kitchen window.

i’ve been having a flare-up of my neurological symptoms, which has significantly shortened my self-propelled travel radius. so much of the last few weeks have been spent at home in my apartment. not being easily able to go out turned out to be a silver lining. i’ve spent an hour or so each morning writing notes on the back of each of the 149 cards.

one day i was feeling well enough to walk down the block for a pumpkin spice latte and pecan pie while i wrote some notes.

my spirits were lifted each day when i thought about all of the wonderful things, big and small, that these folks bring to my life. it also gave me time to do some math. look – i even made a chart!

here’s some geography for you. there were 6 international cards (2 to greece, 1 each to morocco, india, australia and good ol’ canada) and 4 hand-delivered. i could have hand-delivered more of them, but i think that getting mail is fun. plus i’m trying to single-handedly (bob dole refuses to help) save the united states post office.

here are some more numbers from operation giving thanks 2011:

# of times i cursed in a note – 2, i think. both were pretty mild.

# of envelopes short – 1

# of stamps licked – 0. i don’t miss the taste of stamps one bit.

# of duplicates – 1 that i noticed. and the winner is ms. juliet carter.

juliet, me, kermit. in northern greece on AFS in 1990.

 in honor of juliet, # of cards to people i know from my summer in greece – 5

# of cards to people who are or were once my neighbors – 8

# of cards to people who are relatives of mine – 9

# of times i wrote the word “kriste” – 298

# of cards to people who have their writing tattooed on me – 3

# of cards to people who have tattooed me – 1

# of cards returned to sender – 2

# of cards to friends from when i was in elementary school – 5

# of cards to people/organizations i met directly because of tumorfest – 16

when i look at the list i’m reminded of the promise i made to myself when my medical drama happened. 10 years later i wanted to look back and be thankful that i had the brain tumor. i’m coming up on 2.5 years. a quarter of the way there – wow. and so many of the folks i wrote notes to are in my life because of that brain tumor – directly and indirectly (facebook. i’m looking at you.).

i highly recommend writing thanksgiving cards. the holiday season has never been a favorite of mine, but taking this gratitude inventory this time of year just might change that.

time to start my list for 2012.