I used to be certain of that. Not heal me heal me, like being able to run and jump and play softball again; but at least help lessen the intensity of my memories and the anxiety associated with February 21, 2011 and the months that followed.
I keep hoping for this to happen. It hasn’t.
But maybe that’s how trauma stays with you; like looking in the rear view mirror expecting an object to get smaller as you drive away, only to realize the object is actually a trailer you’re hauling behind your car. No amount of time or distance will separate you from it, because you’re carrying it. No amount of time or distance seems to separate me from the feelings and emotions of the day I had a stroke.
Eight years later, I have recovered remarkably well from where I started with half my body paralyzed on the side of a mountain. Physically speaking — the part of my recovery that is visible to everybody — I’m functional and healthy. I am beyond grateful for that!
My emotional recovery has been much more difficult and protracted. The last couple of years in particular have been extremely challenging in terms of my mental health. From working with some amazing trauma counselors, I have realized how significantly my stroke impacts my ability to feel secure and safe in my body each and every day. Since something that wasn’t likely to happen to me actually happened, how can I ever feel healthy? If I didn’t know I had a brain tumor, what might be going on in my body now?
Something I’ve been working through recently is the blame I have placed on myself for not knowing I had a brain tumor. Because I feel like I missed that, I am always on constant high alert looking for other problems with my body — so I’m not surprised again. The problem with this is, hindsight is always 20/20. What if I didn’t miss anything? What if there was no way I could have known I had a tumor or could have prevented my stroke? After all these years, what if I have been blaming myself for doing nothing wrong?
If I could chat with my pre-stroke self, I would share these insights I am finally learning in hopes that she (23-year-old me) would place blame where it was really due: nowhere. Maybe, then, she wouldn’t spend years constantly thinking that her health is hers to control or lose. And maybe, now, I can reorient my perception of what happened and realize that I’m in control of a lot less than I think I am — and that’s ok. If I could chat with my pre-stroke self, this is what I’d say.
January 2011
Ashley,
Before you leave to go snowboarding today, there are some things I’d like to tell you. Things, if you knew, would help so much in the journey that’s about to begin. I would have told you sooner, but I’m still learning, too. Today, February 21, 2011, will change your life in many ways. Over the next 8 years, you will blame yourself for what happens. You will question and doubt yourself relentlessly, insisting that you should have known what tomorrow will bring. That you should have seen the signs. That, had you paid more attention, you might have known what to expect. That maybe you could have even taken a different path. Ashley, please know that, right now, you are doing everything right. You are taking care of yourself beautifully. You are not being careless or brushing off concerns. There are no gut instincts you are ignoring. You are not missing signs — because there aren’t any. You have always been very self-aware, and if anybody would notice something, you would. But there is nothing to notice. You are taking the information you have now and making wise decisions based on what you know. I do not and cannot blame you for the information you do not have. People will ask you a lot of questions over the next several years that will make you think you should have seen something. They will tell you most people see the signs. You will wonder why you didn’t. When you hear these inquiries, please know they are not an indictment of your ability to care for yourself. Believe instead that you were, are, and always will be the best person to guide and protect yourself. You are wise. You are capable. And, above all, you are His. Today is a big day, but you are ready. You already know everything you need to know, and Heavenly Father will help you with the rest. Believe this.
One of the first things I learned about my anxiety disorders is their common characteristic of waxing and waning, coming and going:
Kindergarten was rough, but first grade was much better.
Fifth and sixth grades were challenging, but certainly a reprieve from what I experienced in second, third, and fourth.
This has continued up through my adult life, which has meant that I have had many periods -- whether days, weeks, months, or years -- when panic attacks, OCD, and depression have loomed large. But, eventually the tide always goes out, my symptoms lessen (they never fully leave), and I feel more able to manage my disease.
While I can easily recognize where I am in the continual waxing and waning pattern, I know this concept can be foreign to others and can make those around me have difficulty understanding why and how.
Why was she able to work full-time, handle multiple responsibilities, and be so fun-loving just a couple years ago?
How did things change to where now even being home or going to the store by herself is daunting? Why was she so functional before and now is just trying to survive?
How long will this last?
And especially: How can she be struggling so much when it so clearly seems she has her life together, or at least did not too long ago?
I wrote this poem during a current panic disorder “waxing” period that has lasted for nearly two years now -- the longest and most difficult stretch for several years. I wrote this because I know it must be confusing and frustrating for my family, friends, coworkers, and others to experience such drastically different versions of me, without any obvious reason for the change.
I wrote this because, regardless of what they understood of me before, this is what I need them to understand right now.
There's a Storm in My Mind
There’s a storm in my mind and I need you to know.
It’s a bad one; I wasn’t prepared
For how aggressive, how long, and how loud it would be;
For how exhausted I’d be, and how scared.
I’ve weathered this before, but each time until now,
I always trusted the clouds would part.
This storm is different, the forecast is bleak in my soul.
Just when I think it will end, it restarts.
I promise I’m trying, I’m doing all I can
To keep the wind from breaching my door.
Yet so much of how I used to be, feel, and do
It has carried away with a roar.
So often I think of the relief that would come
If I just let the floodwaters rise.
Let them come, swallow my house with a rush,
Blend in with the tears from my eyes.
Yet there’s a part of me that remembers the sun,
How it can feel -- the warmth and the peace.
And so I continue to board up the doors,
Breathe deep, and pray for the tempest to cease.
I know you can’t see it, this storm in my mind,
But you can see the gloom it has cast.
I’m no longer reliable, go-getting, or social;
No longer the “me” from the the past.
So even if the lightning never reaches your eyes,
Believe that, for me, each flash is real.
That even if my home looks dry in your view,
It’s very wet, this water I feel.
I don’t know how long this storm will rage on,
So please be patient with me as I wait.
When I let you down more times than I’d like,
Please understand: for now, the thunder’s too great.
yesterday marked four whole years since my stroke! that's a presidential term. an undergraduate degree. twenty eight dog years. the amount of time between decent Arizona Diamondbacks teams. wow.
since 2011, this time of year is filled with a lot of contemplation and gratitude, a little bit of sadness, and not a little bit of anxiety. contemplation of, and gratitude for, the blessings and miracles that allow me to be alive and as functional as i am today; sadness and mourning for the old Ashley and what she used to be able to do that she can no longer; and anxiety about having another stroke, my brain tumor regrowing, the constant possibly of another health crisis and countless other worries.
to celebrate my strokeiversary, Troy and i spent the day being as active as i've been in a long time. i am physically a lot weaker than i was before my stroke, so i wanted to feel my muscles moving and my heart pumping as close to like the old days as possible. i woke up and stretched, did some ab and arm exercises, rode my sweet trike down the canal path to a nearby park (3.5 miles roundtrip - holla!) and played catch and hit some whiffle balls with Troy.
note: after yesterday's activities, i am so sore today. oh. my. gosh.
if you knew me before my stroke, you would know i loved playing softball, and consequently, it is one of the things i miss the very most. my right arm gets really tight with any fast movements, so throwing is tough. but i can do it! not in the same way and not as far or accurate, but i can do it. and i am thankful!
(my right leg also gets displeased with fast movements/exertion, hence the shaking and losses of balance.) even though quite a lot of time has passed since my months doing hardcore therapy, my recovery process has not stopped -- nor will it ever if i have my way! recovery after a neurological injury is a lifelong process. there is rarely an end. working as an occupational therapy practitioner in a neuro rehab clinic, i have seen this knowledge come as a shock to a lot of my patients and their families. in our culture, i think we are used to having time frames provided to us my doctors: wear the cast for 6 weeks. take this medication for 10 days. avoid heavy lifting for 2 months. with recovery from neurological issues, we don't get an end date. recovery just becomes another part of everyday life.
in the past year, there have been some standout moments in my recovery that i think are worth sharing. let's review, shall we?
i started working as an occupational therapy assistant at SWAN Rehab in Phoenix a little over a year ago. most of my patients are stroke survivors like me. i help them return to independence -- just as my therapists did for me. i truly love what i do! as this is my first full time job since the stroke, it has been a challenge to maintain the 40-60 hour/week pace, both physically and mentally. my job is incredibly physical already, and then managing my balance, strength and muscle tone issues on top of that makes for a very tired body at the end of the day. (napping at 6 p.m. is ok, right?) it has also been difficult to manage my anxiety, which has increased so much since the stroke. but i am thankful to have a job that i love and to BE ABLE to work! every morning i thank God for that.
i got an adult trike! after looking around for a while (those things ain't cheap!), we found a winner on Craigslist. Troy created a strapping mechanism to keep my right foot on the pedal and also built a platform on the back so he can bum a ride. i had tried to ride a 2-wheeler a couple years ago but decided a trike was much safer for me balance-wise. i love it!
this one is a biggie. in April, i was able to get a Bioness L300 unit to help me walk. basically, i wear it on my leg and it provides electrical stimulation to the nerves that are not getting signals from my brain. the stim brings my ankle up and out so i can walk without my AFO (the black brace i always wore). getting the Bioness was a miracle in itself as i had attempted to get it through insurance before and was denied, and we didn't have $6k lying around to buy it. i tried again to get it through my new insurance, and they paid for EVERYTHING! i was apparently the first person to be approved for the device through my insurance company. such a blessing! so now, i have the option of wearing my AFO or the Bioness. that sentence can also read: so now, i have the option of wearing different sized, unstylish shoes or wearing cute shoes that are the same size. :)
oh yeah, i also did a news story for Bioness. you can watch it here to see how i walk with and without it on. technology rocks!
back in June, Troy and i made a visit to the site of my stroke -- Snowbowl in Flagstaff, AZ -- for the first time since my stroke. i had attempted to visit on one other occasion but couldn't bring myself to go any further than the base of the mountain. we made the trip in June because we were planning to take a flight and i wanted to make sure ahead of time that my brain wasn't going to explode due to elevation. i thought i would be ok going back to the start of it all; it had been more than 3 years, after all. boy was i wrong! it was really, really tough. there were a few times i almost turned around. sitting where i sat when my body started to lose all movement and feeling was surreal and more frightening than i had anticipated. i'm really glad i went, but i have no need to go back for a while. :)
speaking of that June flight, it was the first time i flew since my stroke. i had avoided flying because i was worried that the change in elevation would cause another stroke, even though the doctors were uncertain if elevation was a factor in the tumor rupturing. i was nervous for most of the flight, but the trip Troy and i took to Cancun was so worth it! we has such a great belated honeymoon. i even boarded another plane a couple months later to go to Colorado for my friends' wedding. glad those first flights are done, and even more glad my brain behaved!
on the plane. there's no going back now!
i French braided my hair for the first time. ok, so next to the other milestones, this one might seem pretty inconsequential. it was special to me, though, because i used to be able to do my hair in all kinds of styles, including braids. while my right arm/hand works well when my arms are around waist- or chest-height, raising them over my head (like in braiding) is harder. i sat on the couch where i could prop my arm up while i braided. it's a start!
this is another huge one for me. are you ready?!! *drumroll sound*…I RAN FOR THE FIRST TIME! ok, so it was more like a canter. or maybe a trot. but it felt so good (and was exhausting!). i wore the Bioness and was harnessed above the treadmill. my right leg lagged a little, but i never tripped. thanks to my co-worker, Mark, who provided his PT skills to help me meet this goal.
well, there you have it! writing this post was a great opportunity to reflect on the past year and to realize the progress i am still making. i am still so thankful for all the prayers, love and support that have been given to me throughout this journey. to all those who have prayed for me, provided encouragement and/or cheered me on: i am forever indebted to you. you have impacted my life more than you will ever know!
and to Troy, who, apart from me, is the only one who knows the extent of my daily struggles and triumphs: thank you for being my safe place and my biggest supporter. thank you for reminding me to use Righty and for catching me when i fall (literally and figuratively). you are my biggest blessing and i am so glad to be alive so i can live life with you.
this post has been a long time coming. i've been thinking about writing it ever since i started this blog a year and a half ago, but because i'm terrible at posting consistently, i never got around to it. i choose to write it now, February 21, 2013, because today marks two years to the day since i had my stroke and this new era of my life started. (an occasion my kind classmates didn't forget at school today!)
my "birthday" surprises
in some ways, it feels like it has been far shorter than two years. in most ways, though, it feels like it has been much longer. after all, a lot has happened!
i rehabbed in Tucson for nearly a year, got engaged, moved back to the Valley, got married, started a new job and started school.
a few of my classmates from my occupational therapy assistant program
i went from not being able to move my right side at all, to only needing some assistance, to being independent with the help of a few devices.
my hair started as a buzz, made it to the fauxhawk stage and is now past my ears.
and i went from having constant anxiety to…well, i guess some things never change!
not a day goes by that i don't think about February 21, 2011, and all that has transpired since, and not a day goes by that i don't think about the many blessings and miracles that God has given me during that time. so that i can remember them in the future, and so you can get an idea of why i feel such gratitude today, i want to share just a fraction of these blessings with you.
in no particular order:
i'm alive! this is especially awesome considering somewhere around 37 percent of hemorrhagic strokes result in death within 30 days. yikes.
my stroke hit when i was sitting down. i wasn't driving -- which i was planning on doing less than two hours from that time. i wasn't on the lift. i wasn't on my snowboard.
there were people nearby to run for help. ski patrol was close and came to my aid quickly.
i was somewhat calm on the ambulance ride to the hospital.
Troy and my sister Alicia both told me they felt an undeniable, calm reassurance that everything would be ok. i needed to hear that.
Troy was with me and he gave me a blessing.
my parents did a lot of research, made a lot of calls and fought to get me transferred down to Tucson to get me better care.
i don't remember much of Flagstaff. that, i think, is a major blessing.
one of the top neurosurgeons in the state accepted my case. my surgery went exactly as planned and even ended early.
i was so calm right before i was wheeled back for surgery. so unlike me!
i had no infections, side effects or complications from any medication, surgery or treatment.
i had no seizures whatsoever. this is very rare and still surprises my neurosurgeon.
i can use my hand very well. i was told this would never happen.
the tumor i had was the "best" one possible. all of it was removed in surgery and it has not grown back (knock on wood!).
i had unwittingly been prepared for handling the loss of function on one side of my body. between breaking both legs and my left wrist, i was already pretty adept at finding new ways to accomplish daily tasks.
the stroke itself is a blessing. i had no other symptoms of a brain tumor, so it may have kept growing and could have wreaked more havoc than it did.
the stroke did not affect my understanding or use of language. this is very common in left-sided strokes.
i lost no cognitive ability, either (that i know of!). even though my body doesn't work as well as i would like, i have my mind -- and i would never want it the other way around.
my nurses and CNAs were amazing. one nurse in particular was so influential in my recovery that i now consider her my sister.
before everything happened, my parents and my sister Angela had already studied the concept of neuroplasticity. they were able to share their knowledge with me and ultimately helped me regain more muscle function than would have been possible without it.
my grandfather generously gave me enough money to help cover thousands and thousands of dollars in medical bills.
i got to spend a lot of time with my family in Tucson. it turned out to be the last time i would do that before getting married.
there were many, many instances when i was blessed with extra faith, extra endurance, extra strength, extra hope and extra peace. these moments, though small, carried me through. and still do.
and the biggest blessing of all
i have amazing relationships that have been -- and continue to be -- such a support to me: my loving and positive family; my selfless and understanding husband who helps me keep my chin up; my thoughtful and encouraging friends; church members; coworkers; classmates; and on and on and on.
this is just a small list of blessings and miracles. i know there are MANY i am forgetting, and even more that i don't even recognize at this point. even though these two years have been crazy hard, it is easy for me to recognize how perfectly orchestrated it has all been. i see God's hand in my life, and i have felt the peace and comfort that comes only through Jesus Christ.
if you didn't believe in miracles before reading this, i hope you do now. :]
good news: there's a bunch of pictures and videos in this post! sorry for the lack of visual components up to this point. :]
like i mentioned at the end of my last post, my time at the rehab hospital was very difficult, but also very rewarding.
but also very difficult.
a lot of big things happened during my first week at OVH. nearly right after i arrived at my new home, Troy showed up sporting a pretty sweet mohawk -- a sign of support for my impending hair cut. (and probably a bit of encouragement to take the shaved head route since i was balking at the idea, even with half my hair already gone.)
a CNA arrived soon after to get my vitals and weight. i was shocked when he said that the bed scale was weighing me at 107 pounds. i told him there was no way that was correct! i mean, i know i hadn't been eating much, but i was 125 pounds before this whole situation started. how could i have lost nearly 20 pounds in less than a week? i didn't believe that scale until i saw pictures of myself many weeks after (see below). throughout my whole hospital stay, my family offered to get me anything i would actually eat. the In-N-Out across the street got some business on my behalf.
on Sunday, a physical therapist named Eric came to evaluate me. i was so happy to see that he was a younger therapist. because the median age of the patients on my unit was 85, i was worried i would be treated by somebody who wasn't current with therapies for younger patients. Eric was super friendly and was excited to treat me. he said all the other PTs were going to want to have me since i was young and had a great potential for improvement, but he said he would make sure he got to keep me.
On Sunday evening, i finally agreed to let my sister Alicia break out the clippers and buzz my head. Troy and most of my family gathered in the little bathroom to take part in the experience, and those who couldn't be there physically joined via Skype. some of the nurses even peeked in. we made sure to take lots of pictures and video of the whole process:
the before: looks like normal hair on one side...
the other half
my biggest supporter
rockin' the punk bangs
my sis, Angela, trying to make the bangs work
despite my smile, i was sad to see it go
while i held up pretty well during the shave, i broke down toward the end. i had a difficult time seeing all my hair go -- and not even in an all-girls-love-their-hair kind of way. it was more that i hated seeing myself bald because it made me look sicker than i thought i was. or was i that sick? i didn't like to think about it. there were some advantages to my freshly shorn noggin, though: first, i found out that i have (or, had) a rather perfectly shaped head, which elicited many compliments from visitors and hospital staff. i also got to go back to my natural hair color in a very quick way (something i had been meaning to do anyway). on a more practical note, the buzz was easy for me to care for with only one working arm.
after the shave, Troy left to drive the four hours back to Flagstaff -- a trip he would take many, many times over the course of the next year plus. my mom stayed the night with me on another uncomfortable makeshift bed -- something she would do nearly every night of my three-week stay. even now, i am so thankful for the sacrifices my loved ones made for me in my time of need.
there's so much i want to remember about rehab. if you get bored and quit reading, i totally understand! for the purposes of remembering, though, i think it's important for me to type this all out.
the menses
what? you're hesitant to read something with menses in the title? ok, i might not blame you. it's important for me to include it in my blog, though, because it marked some interesting feelings during my hospital stay. i'm like any other female: i hate cramps. when i felt the first tinge of cramping after i arrived at the hospital, however, i can't really describe how good it felt. it was painful, yes, but the pain was something i was familiar with. everything since February 21 until that time was completely unfamiliar -- and scary. my period, though? i knew that. i knew what to expect. who knew Flo could actually be a relief?
Grams
after the first few days, i found out that my family had not informed my Grandma White about what had happened to me. because Grams had some heart problems, they did not want to tell her until i was out of the woods so that she didn't get too worked up. my parents wanted to keep waiting to tell her, but i insisted that she know. i knew Grams had great faith, and i knew her prayers on my behalf could help me. so, after dinner on the Friday after my arrival, i called Grams myself. we figured that if she heard my voice, she would know that i was ok and would maybe take the news a little better. just in case, my dad arranged for one of her friends to be next to her during the phone call in case she got too distressed.
i was very nervous about setting Grams off on a heart attack, so i did my best to sound like my normal self. when i explained what had happened, i was as upbeat and positive about my recovery as i could muster (even if it didn't necessarily match what i was feeling). Grams was very shocked, and told me she had to hang up because she couldn't handle what i was telling her. oh, no! what if she dies because of what i told her? thankfully, Grams called me back and i was able to explain things to her more fully.
spasms & Baclofen
up until i called Grams, i hadn't really rehearsed my entire story to anybody, nor had i really thought about it in that much depth. between the emotions of rehashing the scariest days of my life and the nerves associated with calling Grams, my body did not react too kindly. if you recall, i had already been having strong spasms in my leg -- that was nothing new. what was new, however, was their intensity. the weekend was filled with many, many instances of uncontrolled shaking in my leg and multiple panic attacks. (ok, it was actually one really long panic attack.) the two did not work together well at all; the more panicky i felt, the stronger my spasms were.
Eric (my PT) had tried to convince me prior to this point to start taking a muscle relaxer called Baclofen. he explained that, with the medication, i would move better in therapy and my spasms would diminish. i wanted nothing to do with Baclofen, however. i didn't like the thought of putting more drugs in my body, and i was not keen on the side effects, particularly the fatigue and sleepiness. as much as i resisted the Baclofen, my spasms were literally out of control -- not even Troy could hold my leg down. i finally gave in and took the pill. the spasms did decrease over the next couple days, and while the meds definitely took a toll on my energy level, my therapists promised me that i would get used to the feeling and would establish a "new normal" in my life. (fyi, i miss my old normal!)
i would be remiss if i didn't include the part about Baclofen making me drunk. apparently, it was necessary for me to take this medication with plenty of food and water. before i realized this, though, my mom and Troy got to witness my drunkenness. mostly, they just laughed, and i couldn't blame them. i was stupidly slaphappy and would laugh for minutes at a time for no reason. i think this side effect came at a good time to cheer us up. :]
therapy
my first few days of therapy were incredibly challenging. i couldn't make it through a single physical or occupational therapy session without crying. i'm sure my therapists thought i was unstable emotionally; which, to be fair, i guess i really was. in addition to my lifelong struggle with anxiety, i have also had some run-ins with depression. about seven months before finding myself in the hospital, i had finally weaned myself off the antidepressant i had been taking for a few years. i finally thought i was strong enough to get by without it. so, take the fact that i am prone to depression and have anxiety and mix that with the normal, expected feelings of somebody whose life has just been flipped upside down: that was me. i was absolutely overwhelmed. the rational part of me knew there was hope, but the depression stifled it. thankfully, my psychiatrist called my mom around this time to see if there was anything he could do to help me. why, yes! i was quickly started on an antidepressant.
every weekday during my entire stay, i attended three hours of intense therapy. usually, the mornings were reserved for OT since many of my ADLs (activities of daily living) took place then. i was blessed to have a wonderful COTA (Certified Occupational Therapy Assistant) named Ashley who was the same age as me. this made the naked parts of therapy (showering, dressing) so much less awkward than they could have been! i was also treated by other COTAs and OTs, all of whom helped me make huge gains in gross and fine motor control of my upper extremity and in learning how to compensate for my hemiparesis. it was (and still is) amazing how my therapists' seemingly simple tools and ideas made such great dents in my recovery. for instance, just by applying pressure against my hand and asking me to try to push back against the resistance, i was able to extend my elbow for the first time. and, knowing that i loved baseball and softball, their idea to roll a ball down a board and challenge me to extend my wrist to trap it between my palm and the board proved the most successful of many attempts to help me move my wrist.
for PT, the focus was on getting me up and walking and strengthening my lower right side so i could improve my balance and endurance. Eric had me on the table mat on my knees, on all fours, on my stomach and on my back. it was surprising how horrible my balance was at first, and i fell on the mat many, many times. (quite frustrating!) he also had me work at the parallel bars and on a set of steps. i spent a lot of time learning to walk again -- first by moving my feet to scoot my wheelchair, then by wearing a brace and using a quad cane while being anchored to my therapist with a gait belt, and then by losing the gait belt and hoping i didn't eat it.
mat work
this day was SO windy. i thought i would fall over at any moment
when i saw this pic, i realized how much weight i really lost.
no bueno!
at this point, i had little control of my butt, hips, and hamstrings, and no control over anything lower. since my calf muscles weren't working, my knee was hyperextending somethin' fierce. with the help of the AFO, the cane, a lift in my right shoe and some major concentration, i was able to make some progress with walking. at the end of the three weeks, Eric's goal was for me to be able to get myself off the floor -- kind of in preparation for if i ever fell at home and nobody was around to help me. i figured i could accomplish this task because i knew my left side was strong and could compensate for my right side. turns out i was wrong! it actually took a couple months after leaving the hospital for me to be able to pick myself up off the floor (no pun intended). he also wanted me to be able to get into and out of his motorcycle sidecar, because, why not. that goal was a success, and i have pics to prove it. :]
apparently, it was against the rules to take me for a spin :[
one more thing about therapy: i know i've mentioned it was frustrating, but it was also utterly exhausting -- and not any type of exhaustion i had ever felt. my body was tired, yes, but it was my brain that was the most drained. when i first got to OVH, i was told that i would need to rest in between sessions of therapy. i didn't understand why until after my first session. trying to move even one of my lifeless body parts required the most intense focus i had ever exerted, resulting in an incredible fatigue that i can't really describe.
thank goodness for TV and the Internet
between the Baclofen and fatigue from therapy, i always wanted to sleep when i wasn't with PT or OT. for the first time in my life, though, i could not nap. at all. (if you know of my affinity for snoozing, this should surprise you as much as it did me.) no matter how hard i tried, sleep was elusive.
instead of sleeping, i tried reading; that, too, was a bust. because of my panic problems, i was so worked up at all times that i couldn't calm down enough to sleep or focus on more than a couple sentences of a book or magazine. my racing thoughts never slowed, but were instead filled with a constant stream of fears about having another stroke or getting sicker. my heart felt like it was beating as quick as a hummingbird's, even while i was in bed and trying to relax. the only peace i could find (most of the time) was by looking at stuff online or watching TV. the mindlessness of both activities somehow provided a brief reprieve to my worried mind. luckily, Bones was on almost every night, so i got to introduce my mom to one of my favorite shows. :]
the night before surgery, my family and Troy gathered in a small staff room so we could have family prayer and so my dad could give me a priesthood blessing. i knew if the surgery was to go well, the Master Physician, Jesus Christ, could make that happen. just like He healed so many people when He was on the earth, i knew He could heal me. in my church, we believe the priesthood is the power of God given to his children to use worthily. in essence, a blessing from my dad, if he was worthy and if i could have enough faith, would be as if Christ himself were saying the words my dad said in the blessing. among those words, i was blessed that the surgery would go well, that the surgeon would take out everything from my brain that didn't belong and that i would one day be able to run and move like i used to. what wonderful promises if i can have enough faith in Christ!
although i was still nervous for the surgery, i was actually beginning to feel at ease. i realized that everything was in God's hands, and that whatever He wanted to happen to me would happen.
originally scheduled for early afternoon, my surgery did not take place until the evening of March 2. the day before, a doctor measured my head and marked it with colored lines and dots that would help him place specialized equipment on my skull so he could assist Dr. Weinand with where to touch my brain and where to avoid. the morning of the surgery, my sister Angela woke me up early to remind me to eat one last meal before i couldn't eat or drink anything. i tried to eat cold cereal, but my stomach was a tangle of nerves. i spent much of the day sleeping, praying and trying to relax.
as the surgery drew closer, i felt more calm. i remember praying and asking Heavenly Father to help me live though the surgery. i promised that if He would let me live, i would spend my life as a witness to the healing, miracles and peace brought about in my life through faith in Jesus Christ. that is one of the reasons i started this blog. :)
i was wheeled to the pre-op room, where i waited with my parents for over an hour. i managed to stay remarkably calm. i had a very kind nurse who was from India. she put a cap over my hair, searched my arms for places to insert new IVs and an art line, explained the timeline of the operation and chatted with me. an anesthesiologist briefed me on the drugs she would give me. young med students flitted around on the other side of the room while tending to an obstinate (and hilarious) old man, and i felt a twinge of jealousy for their good health.
sporting a sweet cap and waiting for my turn in surgery
finally, it was my turn. the anesthesiologist gave me the first round of drugs that were meant to relax me. i was then wheeled out of the pre-op room to a spot above which hung some mistletoe. this was where i was supposed to kiss my parents and go on to surgery. "see you on the other side!" i joked. whether the other side of the surgery or the other side of death, i figured i would be correct. it was then on to the operating room. i vaguely recall a few details: lots of people. metal tables. bright lights. someone addressing me. and then, sleep.
according to my family, i was in surgery for about 3.5 hours. Dr. Weinand had estimated it would take twice that, so my family and Troy were surprised and pleased when he came back early with the good news that he "got everything" -- meaning bits of tissue and the blood that started this entire journey. he further explained that he didn't know what the mass was, but that he would send it to pathology to be evaluated.
everyone came to see me in the recovery room. i apparently said some things, although i don't remember this part at all. Troy tells me now that i got a CT scan, but the first thing i recall was what came next.
i guess i had expected to go through the whole clawing-my-way-back-to-consciousness process in a hospital bed, so i was somewhat surprised and pretty dismayed when i woke up while being loaded into the MRI machine. i wasn't with it enough to protest, but i remember being nervous nonetheless. my dear mother tried to plead my case to the doctors; she knew how difficult MRIs had been for me and didn't think it was fair for them to put me through it again right after surgery. despite her efforts, i wasn't getting out of the MRI. like it had done in the days leading up to surgery, my right leg began violently spasming before the MRI commenced. the MRI attendants were finally able to bend my leg and tape it in that position so i could remain still during the procedure. while inside the obnoxiously loud machine, my mom stroked my left foot -- her way of telling me she was there for me and that i was going to get through those tense 40 minutes.
i woke up again on March 3 in the late morning. this time, i was in a room brightened by a few rays of the Tucson sunshine, and a male nurse was offering me a plastic cup of some suspicious orange liquid. "your potassium is low, so you need to drink this," he said. to my own amazement, i didn't ask any questions, but instead took to swallowing the rather nasty orange-flavored drink. Troy soon came in, along with a few family members (i think!) to greet me. i found out i was in the pediatric ICU and that just a few weeks earlier, Gabby Giffords had recovered in the very same room after her miracle surgery.
between my noddings off and wakings up, my male nurse made sure i was comfortable and lightened the mood with his heavily sarcastic jokes. i was in pretty good spirits until…dun, dun DUN!…they said they were going to remove my catheter. (side note: i had never had a catheter before, and the feeling of releasing liquid but not really peeing was crazy!) instead of the male nurse performing the removal, a CNA was asked to do it. by this time, my sister Alicia was in the room, and thankfully so! since she is a nurse, she noticed that the CNA was about to yank the catheter out without properly deflating the balloon. Alicia stepped in, guided the CNA (who had never removed a catheter, come to find out) and saved me a whole lot of pain down below. gotta love having a nurse in the fam!
with less than 24 hours of ICU time under my belt, i was returned to my hospital room on the 6th floor. there, i got a glimpse of myself in the mirror: the left third of my head was completely shorn, and the rest was covered with a gnarled, bloody mess of hair. i still had colored marks on my scalp and forehead, as well as a small bloody hole in the center of my forehead -- which we assumed was where some sort of measuring or monitoring device was anchored during surgery.
once i started feeling more with it, i asked my nurses if i could have a bath. i wanted to get the stinky blood out of my hair, and, oh yeah, take care of the more than two weeks of leg and pit growth that had accumulated. (now when i tell Troy that i really need to shave, he reminds me that he has seen much, much worse!) a wonderful CNA named Katherine offered to give me a bed bath, and my mom volunteered to do her best with a crappy hospital razor. together, they then tried to comb through my matted hair and wash it without disturbing the fresh, five-inch scar on the left side of my head. eventually, scissors were brought out to cut off the sections of hair that were way too matted to save. in the end, i was left with uneven yet reasonably clean hair on my right side. apparently, according to Troy, my head smelled like sawdust despite the wash. better than blood!
on Saturday morning, less than three days since my surgery, my discharge paperwork was in the works and i was being prepared to move into a rehab hospital where i would undergo intense therapy for about a month. after learning about the various rehab hospitals in Tucson, my parents and i decided on Oro Valley Hospital, mostly because it was close to my parents' house -- a welcome change from UMC.
in the afternoon, i said goodbye to my nurses, my family and Troy and was loaded into a medical transport van driven by two middle-aged men. i tried not to let me nerves show, but my heart pounded all the way to the rehab hospital. i was so scared that my body would turn on me again; after all, i was barely out of surgery and wasn't completely convinced that i was in good enough shape to be moved yet. i was familiar with the route the drivers took and pleaded with traffic to abate and lights to turn green so i could quickly get to safety. finally, we arrived at OVH. i was wheeled to the third floor, inpatient rehab unit, room 343: my home for the next month where i would struggle immensely but also make more progress than i would have ever expected.
the following is a bit off topic, but i think it is pertinent to my past and future posts. hope you don't mind a brief detour. :]
University Medical Center is about 40 minutes south of my parents' house in Tucson, so it would have been reasonable if i had never been there before. but i had actually been there multiple times. just never as a patient.
from seventh grade through my junior year in high school, my mom and i accompanied my psychiatrist to UMC to take part in his lecture to the second year med students about mental disorders. once he was finished teaching, it was my turn. i would get up in front of the 200+ students and essentially tell them my life story as far as mental disorders were concerned. like i mentioned before, i have had OCD and panic attacks since i was very young, and my psychiatrist thought sharing my experiences with the students might help them be more understanding as doctors someday. (my mom also shared her experiences of caring for a husband and two daughters with various mental health issues.)
my life story went something like this: i had my first panic attack when i was five. i was so afraid to leave my parents -- and to be left by them -- that i refused to ride the bus to kindergarten without my mom and rarely went a day without breaking down in my classroom. i was afraid my parents would die while i was at school. everybody thought it was just separation anxiety. just leave her crying, she'll grow out of it, they said. i think my parents knew better, especially since my dad had struggled with panic attacks for much of his life. they took me to see a psychiatrist and i started on some anti-anxiety meds.
first grade was a breeze. maybe it was just separation anxiety after all! then we moved from CA to AZ, where the panic attacks returned with a vengeance, this time accompanied by OCD symptoms. school was already difficult in a new place, and crying all the time and spending lunch and recesses with the teacher were not exactly conducive to making friends. by the end of second grade, i had developed a huge fear of throwing up and, as a result, of germs -- because, naturally, germs lead to throwing up. i was so worried about germs that i washed my hands about 75 times every day, with 21 squirts of soap each time. i didn't eat much for fear i would get sick. i was a scrawny 8-year-old with cracked, bleeding hands and perpetually red eyes from crying. life was just so scary.
third grade was worse than second. my mom had no choice but to be a classroom helper on most days, just so i could feel comfortable at school. towards the second half of the year, even that didn't work. my panic attacks and OCD were so severe that it was determined i was not able to function in a school environment. i was removed from school and homeschooled for the remainder of the year and for all of fourth grade. at first, being away from all the germy kids was a relief, but i started to miss the social interaction of school. my family moved back to CA during my fourth grade year, and without school, i didn't have much of a chance to make friends outside of softball and church. i decided i would return to public school for fifth grade.
now i'd like to point out that i didn't just accept the panic attacks and OCD. my parents spent so many patient hours walking me through coping techniques that helped me work through the anxiety and feelings of obsession/compulsion. my psychiatrists and psychologists did the same. i pushed myself to do a lot of things i thought i couldn't do, like sleeping over at friends' houses and eating at restaurants. i also learned about the power of faith and how crucial it is in overcoming trials. slowly but surely, i became more confident in my ability to stand up to anxiety and OCD.
fifth and sixth grade had many rocky moments, but overall, i prevailed. i even went to sixth grade camp for a week in central CA, traveled to Lake Havasu with my friend and won the election for student body president. we moved back to AZ before seventh grade, and the upswing still continued. i had finally figured out how to master my thoughts enough so that my panic attacks came much less frequently, and my OCD was markedly improved. true, i still struggled and missed out on a lot of fun, "normal people" activities because of my fears, but i was able to fool most people into thinking i was one of those "normal people." i even threw up in my freshman and junior years of high school and realized it wasn't that bad. overall, i had a great weakness but had somehow found it within myself to be strong.
this is where my testimony to the college kids would end. they would then ask me questions and applaud me, and sometimes i would get a nice UofA med school sweatshirt to take home. i always loved that experience.
flash forward to 2011. i'm back at UMC, and ironically, i find myself feeling not like the strong, victorious high schooler i was when i last visited this hospital, but exactly like that scared little girl in third grade.
how did i not post anything in July? i'm horrible at this blogging stuff! i'll try harder, promise. :] now where was i...
my parents drove from Tucson to Flagstaff the night of President's Day. they arrived in my dark hospital room sometime in the middle of the night. i was so glad they were there, not only so they could comfort me but also so Troy could go home and get some rest.
in all, i was at Flagstaff Medical Center about three days. i don't remember many details about it. my parents and Troy don't remember everything, either, but maybe that's a blessing. during stressful times like these, i think Heavenly Father might sometimes limit our recollection in order to help us move forward without too many negative memories. on to some of the things i do remember…
a different neuro doc named Dr. Nicol was assigned to my case. (i was not a huge fan.) his assessment was that i probably had a cavernous vascular malformation (CVM): a group of blood vessels in the brain that are malformed, causing abnormal blood flow that can lead to hemorrhaging. he said that i could have been born with it or had it for a long time, and that in many cases, people who have a CVM never have any ill effects. he also said it could be a brain tumor that had exploded. whatever it was, he saw calcium deposits in the MRI images, meaning the cause of my brain issue had been around for a while.
i think i registered what Dr. Nicol was telling me, but i was more focused on what was going on outside my brain. i was still super worried that my left side was going to give out, too. the doctor tried to explain to me why this wouldn't happen:
"see, Ashley, the bleed is on the left side of your brain and that's why your right side is affected. there's nothing wrong with the right side of your brain, so the left half of your body will be fine."
"can the blood bleed into the other side?"
"no, i don't think so. the worst of the bleeding should be over by now. the first 24 hours after a hemorrhage are the most dangerous. you should be ok now."
i think Dr. Nicol was trying to be comforting, but that just made me worry more. i should be ok? just should?
Dr. Nicol concluded that surgery would not be immediately necessary. before operating, he wanted to wait for the blood in my brain to dissipate so that he could see more clearly what the cause of the bleed was. he suggested i be sent to rehab for a month or so until that happened.
well, my parents were not thrilled with this plan. they didn't agree with waiting. i didn't fully realize it at the time, but my parents spent hours trying to get me into another hospital so i could be treated by a better neurosurgeon. i am so grateful for them.
first, they tried to get me into Barrow Neurological Institute in Phoenix since we knew that was one of the best neuro hospitals. no luck -- all beds were full. they then called any and all doctors we know through church to see if they could help. they talked to my cousin who is in his med school residency. my sister, Keele, suggested they talk to her neighbor, the head breast cancer doctor at University Medical Center in Tucson. she agreed to put a good word in with one of the neurosurgeons at UMC. thanks to her help, my case was accepted by Dr. Martin Weinand, one of the doctors who helped save Congresswoman Giffords only a few weeks prior.
while my parents were making calls and working with Flagstaff Medical Center and UMC to get me discharged and transferred, i was having a pretty continuous string of panic attacks. i have struggled with panic attacks and obsessive compulsive disorder (OCD) since i was five years old. normally, i panic over things that have about a 5% chance of actual happening, and the panic attacks pass after a couple hours at most. these panic attacks were a different brand: there was a large chance my fears would actually come to pass and the panic attacks spanned most of the day. the nurses often gave me Xanax to help me relax and calm my quick breathing and racing heart. (hmm…maybe i don't remember much of Flagstaff because i was drugged most of the time...)
during one of my episodes, a nurse gave me a piece of advice that i have tried to follow ever since. he told me that the situation was out of my hands, and that worrying wasn't going to make things any better. (my mom often repeated these words to me. she would refer to him as the "Jesus nurse" because of his long hair. :])
on Thursday, preparations were being made to transfer me down to Tucson. i had been moved out of the ICU, but i was still seriously worked up. a nurse pushed Benadryl through my IV in an attempt to calm me down. it did the opposite. what followed was the worst panic attack i think i've ever had. i felt out of my mind. the Benadryl made me so woozy and even made me feel like i couldn't move -- not the best idea for somebody who was worried about that happening to begin with!
i finally fell asleep after that panic attack and awoke in the early evening when my parents and nurses were discussing my transfer to UMC. i would go by ambulance and would leave soon. i did not want to travel alone, but when the paramedics came to pick me up, they said nobody could travel with me. worst panic attack ever, round two, anyone?
i tried really hard to get out of the ride to Tucson: can we go tomorrow instead? no, i don't want to take Xanax. i don't want what happened with the Benadryl to happen again! can somebody PLEASE travel with me? please?
everybody's patience with me was wearing thin. finally, all efforts to convince me to go quietly were abandoned and i was placed on a gurney and rolled into the ambulance. i took a Xanax, said goodbye to Troy and my parents and just prayed and prayed. my parents assured me they would follow the ambulance the whole way down.
the medic caring for me in the back talked to me to calm me down. i brought up baseball and asked him about his family. he took my vitals every 15 minutes and sometimes made less-than-reassuring comments about them. after about 20-30 minutes, the Xanax did its thing. i fell asleep till we got to Tucson. when i woke up, i looked out the back window to see if my parents were still following. sure enough, there was my dad's truck. i saw the I-10 exit sign for Grant Road and knew we were close. it was almost over, and for a brief moment i thought: i made it through. if i can get through this, maybe i can get through whatever is coming next.
last week i went shopping for clothes for the first time in quite a while. i didn't bring that many clothes down from Tempe, so i have been wanting/needing to go shopping. i didn't find much, unfortunately, but i did find this cute shirt at Gap:
ok, now i have a new shirt. what should i wear with it? how about jeans!
got that taken care of. what about shoes? after all, an outfit isn't an outfit without cute shoes. thankfully, i didn't have to think too hard about my footwear selection. it was immediately obvious what shoes would look best with my new ensemble. these!!!!
i know what you're thinking. where-oh-where can i get a pair? don't fret; you, too, can own these babies, and i won't even be upset if you copy me.
in case you don't see the readily apparent awesomeness exuded by my hot kicks, let's take a closer look:
first, please note that these are straight outta the Target men's section. the steely gray and dirty white is nicely complemented by perfectly placed splashes of deep red. second, the slit in the right shoe adds just the right amount of attitude. and of course, who could overlook the most striking feature of all: the twisty laces that hearken back to the glories of 4th grade. (initially, the twisty laces were installed to allow me to tie my shoes with one hand. i can tie regular laces now, but switching would mean i'd lose out on the awesomely quick tighten/loosen abilities of twisty laces!)
aside from their fashionable qualities, my shoes are also completely functional. so functional, in fact, that i am not ashamed to say i wear them every single day. they are the only shoes that fit over my slick AFO:
the AFO is actually super helpful. it helps me walk. without it, my right foot doesn't really behave. it turns in (due to spasticity) and won't lie flat.
the AFO keeps my foot down and also tilts my leg slightly forward so that i don't hyperextend my knee as easily as i do without it, and the joints built into the ankle portion allow me some flexibility while still providing control. when i wear it, i actually can walk kinda well!
when i was at the rehab hospital, my mom ran to Target to get me my shoes. i knew they would be a men's shoe since i needed something a couple sizes larger than my normal [rather large] shoe size in order to accommodate the AFO. i was nervous about what they'd look like. lucky for me, they turned out to be super stylin', not to mention they go with everything!
cute summer dress?
jean shorts?
long maxi dress?
khaki linen pants?
pajamas?
swimsuit?
any style i could possibly wear while also needing to walk in public?
you get the idea.
some may think i would want to wear sandals in the hot weather, or that i would miss my Vans…or any other shoe for that matter. no way, jose! that's like asking a bald guy if he misses his hair. and to think, if it wasn't for my stroke, i never would have thought of wearing these shoes. ever.
