[past] in the [present]: 8 years

Time will heal me.

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.

I will try to believe it, too.

[present]: six

I had a stroke again yesterday.

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.

[past & present] 4 years?! 4 real.

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?

1. 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.
   


2. 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!
   


3. 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!


4. 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. :)
   


5. 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!

   
   
   
   
   

   

   
   



6. 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!
   


7. 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.

[present] the state of things: 5/25/2011

*i'm going to be jumping between past experiences and real-time updates, hence the bracketed [present] and [past] notations you will be seeing in the titles of my posts. make sense? k, good. let's begin... :]*

it has been quite a while since i shared my last update on how my recovery is going. the radio silence is mostly due to the fact that this stage of my recovery is pretty unexciting. when my mom was first updating facebook, things were changing every day and much was unknown. later, she recorded the progress i was making on a daily basis. since coming home from the hospital at the end of March, the steep slope of improvement has leveled off a bit. that's not to say i haven't made huge steps, but it has just been a bit more gradual.

if you've been following my progress, you know that my right side was completely flacid at first, and when i started getting movement back, my leg responded better than my arm. now, mr. arm has made a comeback, tortoise and the hare style! i just recently completed my 7th and final week of occupational therapy. my awesome therapist, Cherie, discharged me and said that time and practice will return my arm and hand back to normal. all my arm/hand/shoulder muscles work and i can control them rather well. now i just have to continue to strengthen them, refine my fine motor abilities (i.e. writing!) and work on breaking up the spasticity in my pec and shoulder by stretching and getting massages.as for señor leg, he is being stubborn. while my hip on down to my knee is working fine, everything below is taking more time. what i can do is flex my ankle up. yay! because of the crazy spasticity in my tibial muscle and foot, my foot turns in still and inhibits any other range of motion. i am getting better at walking, even though i can't yet use my ankle properly. i ditched my cane a week ago (his name is Melvin...i'll introduce him later) and now walk with my AFO (ankle-foot orthotic brace) only. i nearly fall over sometimes, but it's getting better and feels more and more normal.

on the tumor side of things, i had an MRI today and will follow up with my surgeon next week to see if there has been any regrowth...which there won't be, right? i had some bad experiences with MRIs in the hospital, but the one today went surprisingly well (minus the Nickleback song that came on around minute 15. gag.).

with my 24th birthday tomorrow, i am just so thankful to not only be alive, but to be improving at a solid pace. it has been only 3 months and four days since my stroke and less than 3 months since my surgery, and i have already regained so much of my movement. the rest will come, i know it. in the next year, i plan to:

- be able to move all the muscles in my body
- move back to the Phoenix area
- be back to (or at least close to being back to) playing softball
- walk and run on the beach
- take my dad up on his offer to take troy and me to any baseball game of our choice (!!!!!)
- keep tumors out of my brain
- not waste my time in finding and doing what brings me and others joy
- extend myself to serve others more and share my testimony of the healing power of Jesus Christ

i've got a lot to accomplish. but i'm excited. and i'm excited to be here and to improve myself through this refining process. bring on year 25.