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.
And the day before that. And almost every day for the past 6 years.
If it’s not a stroke, I have another brain tumor or some other disease I’m probably too young to have, but who knows I mean look at my track record.
So I test my right arm and leg. Can I oppose all my fingers in quick succession? Have I lost any feeling? I ask Troy to do a neuro exam on me. Is the right side of my face drooping? I check my pupils for reactivity to light. Are they equal? I squeeze my right hand as hard as I can. Am I losing strength? I touch the scarred divot on my skull. Is it less indented because pressure in my brain is increasing? I see if I can close my right eye, because I couldn’t do that after the stroke. I frantically check and double check it all BECAUSE IT’S HAPPENING AGAIN.
At least that’s what it feels like.
If you know me or have read my blog before, you know that I have had severe anxiety/OCD issues since I was in kindergarten. That was my life’s “big trial” -- or so I thought. When the stroke happened, my coping skills were turned upside down. I realized I could no longer rationalize my way out of anxiety or a panic attack with the mantra I had used since childhood: What you’re afraid of isn’t going to actually happen! It never does! This no longer works, because, well, it did happen. I did have a life-altering medical emergency. I did lose control of my body. I did almost die. So, how do I cope now?
Answer: not particularly well.
It could be that I am currently in a darker place than normal with my anxiety being at its worst in 6 years, but lately I’ve been struggling with the aspects of my stroke recovery that have nothing to do with the physical. In fact, the mental and emotional fallout has far and away been the worst part of this whole experience. Because of my pre-existing anxiety and my mind’s penchant for ruminating on fear, I have been unable to leave That President’s Day behind me.
Not a day has gone by that I haven’t thought about or revisited the moment I suddenly lost feeling and movement on my right side, or the terrifying days that followed. Some days it’s just a passing thought. I’m so glad I had the ability to call for help. I can’t believe I survived. Wow, that really happened? Many times, however -- especially lately -- my thoughts and memories about those events are so obsessive and strong that I physically feel my right side going numb, or tingling, or not moving like it should. It feels 100% real, even though it’s not.
In so many wonderful ways, I am far removed from my stroke. I am walking. I can use my arm. I can dress, bathe, and toilet myself. I can even drive and work. By all accounts, my physical recovery, the recovery people can see, has been incredible -- and I am indescribably thankful! I may never run or skip or jump or play sports or act again. But physically, February 21, 2011 feels like a long time ago.
Mentally and emotionally, though, it feels like almost no time has passed.
Neurological injury and mental illness have a lot in common. One true fact about both of them is that recovery is not finite or a discrete event. It’s a lifelong deal, and it may never be "complete."
So, while I have achieved the majority of what my damaged brain will allow physically, I still have a ways to go before I’m where I want to be mentally. I am realizing that, while the stroke was terribly difficult, the anxiety/OCD/PTSD/depression is still my life’s “big trial.” Even if a million other horrible things happen to me, the anxiety will always make things a million times worse. That’s just what it does.
I am trying. Every day is a challenge, and some days I don’t think I’ll ever make it. And the truth is, things have gotten so bad that I won’t make it -- at least not on my own. So, I am asking the Savior to help me bear this burden. He said:
Come unto me, all ye that labour and are heavy laden, and I will give you rest.
Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.
For my yoke is easy, and my burden is light.
(Matthew 11:28-30)
I believe Him. He has performed many miracles for me. I know He will help me still. With His love and grace, I will one day feel at peace with February 21, 2011.
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 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.
