Issues With the Left Side

No, this is not about the political left, although you might find it to still be political.  It is more about finding hope in the recovery process regarding the left side of my body, specifically my left foot.

If you’ve been a follower of my blog over the past few years, you know that I acquired foot drop due to what I call my “life explosion” in January 2015.  I continue to work on my recovery and refuse to believe that I will stop making progress.  And, I do continue to make progress…just a few weeks ago I was able to complete five wall squats in which my left knee was level with my right knee.  This was quite exciting!  For months, due to weakness in my left hip, my left knee would turn in toward my right essentially allowing my right leg to do all of the work.  So, my PT started, and continues, to engage me in a wide variety of hip strengthening exercises.  One of which left me with inner thigh pain during spring break (major bummer) and all of which I’ve made progress in doing.  This is great news!

Still, I walk around with what is affectionately referred to as “stroke walk” and I still work to walk 4,000 steps a day.  I have moved to using a handmade wooden cane (and yes, I try to be very Dr. “House”-like with it).

I even managed to do most of the yard work this spring on my own, with shoveling being the greatest challenge.  I created a work around, though, and would use the small gardening shovel which only required more time.

Yesterday, though…yesterday frustrated me quite a bit.  First, I’ve been experiencing the pains of an in-grown toenail.  (If you are not a foot person, I apologize…and please know I am not a foot person either, but have become more comfortable with everything ‘body’ since my time in the hospital.).  This issue has been going on for a few months, however it wasn’t until recently that I went to the doctor about it.  I’m waiting to go to another doctor about it in the near future.  In the meanwhile, I soak my foot each night and use my Bioness to help keep pressure off my left foot.  Upon doing my own research and talking to the doctor, in-grown toenails are common amongst those with gait issues.  Lovely.

Second, it was raining outside.  This issue isn’t as bad as the first one, due to the fact that it is making it so that I don’t have to water the plants in the yard.  At the same time, however, it is both challenging to get all of my steps in and then walk inside a building without a carpet nearby (or a carpet that actually soaks up water) safely.  Essentially, I just need to get used to the squishy shoe sound and doing my best to drag my foot on any mat available in an attempt to wipe off the water.

Finally, I am so excited about the cognitive gains that I’ve made, especially this past spring.  Sort of similar to my wall squats, I’ve improved to the point where I actually have energy throughout the day and it’s wonderful!  Please don’t get me wrong, this doesn’t extend to unfamiliar environments; in those environments, I still lose energy quite quickly.  For example, attending a conference was quite a challenge this past spring.

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Me (on the right) at one of the conference presentations.

However, I keep pushing myself.  Everyone I speak too (e.g. doctors, nurses, therapists, etc.) encourages me to keep going, reminding me that it is possible to regain abilities even years later.  Just this week, I found this hopeful quote inside a book I’m reading for a book club,

Neural plasticity is the field of research into how, when, and why the brain develops (Stiles, 2000).  The findings of that field go against the prevailing cultural narrative of fixed intelligence.  Rather than reaching our intellectual potential in our mid-20s and simply staying there, our brains continue to develop in the areas that correspond to the skills we practice (Fuchs & Fluegge, 2014; Stiles, 2000) (p. 170).

So, here’s to continuing to practice walking “non-stroke-style”!

Last Week I Went to a Mosque

Thursday morning I was invited to attend a gathering at a local mosque between 5-530 p.m. in Macomb, IL. The purpose of the gathering was to show our Muslim friends that we are here for them and love having them in our community. I was all in after receiving the invitation.

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I’m standing in the back row on the left. 

I headed there after Physical Therapy, and anticipated it being a quick in and out type deal. I  should have known better.  After all, Dr. Sodiq (my World Religion professor at TCU) and every single Muslim I’ve met since have been nothing but kind. Still, I was nervous…I was attending by myself and TBI survivors don’t really like social situations, and I am already introverted. I’m more the “sneak in and out without being noticed to leave a card” kind of person. Still, this mattered to me, so I went.

I thought my plan of leaving a card might not work out, after all how in the world would I sneak in quietly?  (Please picture in your mind 6′ tall me, with my backpack, cane, and foot drop trying to tip toe). Upon entering the mosque I learned that I was catching the tail end of the event. Here is when I began to feel ever grateful for my decision to go in.

If you are unaware, it is proper manners to remove your shoes when entering the worship area. So, there were shoes snuggly set aside in the entry way. As soon as I entered, I was greeted and welcomed to go on in. I did my best to mumble through my concerns about how I couldn’t take off my shoes (foot drop on soft carpet is not a recipe for being able to walk). Once I explained it, I was told that I could just go in and that it wasn’t a problem. So, I did my best to take some steps into the room.  I made it about 6 feet into the room, and stood looking around to take it all in. There were all sorts of people visiting and sharing food. It was beautiful.

I was then approached by a young man (young means younger than me) and asked if I wanted some tea. I replied that it would be wonderful, and was quickly poured a cup. Next, I was approached my another young man asking if I wanted to sit down. I replied that a chair would be great, and he proceeded to ask folks to move so that there was space. I can’t tell you how nice it was to have someone I don’t know do that for me. I was in sensory overload at that point, and am not sure that I would have tried to sit down without his help.

Then I was asked if I wanted a plate of food. Seriously, who says no to that! The plate of food I was brought was almost all sweets, which are my weakness…so, in other words perfect!.  Suddenly another person came and sat down to my right. If any of you follow my left neglect stories you know that I struggle looking left, so it felt like a relief when I could look right and be talking to someone. I then proceeded to spend the rest of the evening talking to him. I learned that: he is from Libya (“one of the seven” is how he phrased it…can you imagine becoming comfortable saying that about your home country?); he is in graduate school at WIU; he has not been home in three years; he misses home; and that he agrees with me that we are all here to do good and that the commonality amongst all religions is love. He also helped me to stand up twice (again, thick carpet after PT is not helpful), helped me to find a spot in the group photo taken, and asked me if I wanted an English copy of the Quaraan (Side note: I did.)

I am sharing all of this because the day leading up to my visit was not a great day, so spending time getting to know someone was exactly what I needed to do.  My heart was replenished.

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Signs the children made for the Islamic Center. 

Yes, yes, I encourage us all to learn from those that are different. Yes, you can read information about difference, but there is nothing quite like sitting down and having a conversation with a person. I was not scared.  It was not scary.  The room was full of love. I wish this kind of heart-filling love upon all of us.

Today is my Happy New Year!

Today is the two year anniversary of what I’ve dubbed “my life explosion“. Some might think it is odd that I acknowledge this date, and even sometimes refer to it as my new birthday.

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My life on  January 6, 2015

For me, however, I’d rather put it out there than keep my acknowledgement of it inside. So, here I am, two years later still working on recovery…a process that is measured in years and not months or days like some other illnesses.

 

“The actual length of the rehabilitation process varies according to the person and to the severity of their injury. Some people may only require a few weeks or months of rehabilitation, and others may require years or even lifelong rehabilitation.”

(http://www.brainline.org/landing_pages/categories/rehabilitation.html)

 

I can see my growth over the past year. I am much stronger, and can therefore walk a bit better and last longer before hitting complete exhaustion (and my goodness the exhaustion).  I am better able to complete higher order executive functioning skills. And, I continue to challenge myself so that my neurons build complex pathways.

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Me=Snoopy

I also recognize the accomplishments I’ve achieved. For example, several times over the past year my Physical Therapist has strapped me into a harness over a treadmill. Each time my goal was to get to 3.5 in my speed (the lowest speed that is considered running), and the past few times I’ve done it I have reach my goal….albeit, the longest I can last at that speed is 5 minutes, but still, I was running.

I have hit my goal of 4,000 steps a day for almost all of this current school year (I take one day a week off…see exhaustion note above). It has helped to have a furry friend to enjoy going on walks with, and he goes at whatever speed I go, so it works out well. I’ve fallen several times on my walks, but let’s be real…I’ve always been clumsy. The best part is that Optimus is right there looking at me when I do without judgement.

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My furry friend, Optimus Prime.

Somehow I’ve managed to travel and present at conferences, as well as attend and participate in a wedding, and I say somehow because there is a ridiculous amount of sensory input in airports and conference centers. Even hotel carpeting…seriously, what is up with hotel carpeting? Does it really need to be (often) bright geometric patterned?  These are important questions, people, so please pay attention…it is dizzying. Not one of these adventures would have been possible without my co-presenters and my a0aab073555e4c72cd69f8d1e00ec450bdventure partner.

I often spot others with walking challenges wherever I go. Yes, these folks were probably around me before my life explosion, but I truly see them.

I also recognize the hypocrisy of a call for social justice that continually stays silent about the issue of disability.  If 19% of the population reports having a disability perhaps we can find a way to talk about it more?

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I really hope that you saw this and were not okay with it no matter your vote.

I  wrote a book. I’m not sure if it is any good, and I’m still working on editing it. I often remind myself that it took Dr. Jill Bolte Taylor 10 years for her to share her story. Perhaps I am emulating her in some sort of way.  What I do know is that I needed to get my life explosion out of me as a method of grieving (also a reason I talk a lot about Optimus).

There has been a lot that I’ve lost, and I am sad about it. It is okay to be sad.

Still, I want to use my story to encourage/help others, and so I’ve shared bits of it at community wide events, a classroom of speech therapists in training, and a monthly support group for caregivers of stroke survivors. I hope that by sharing it I’ve helped others in some way as all of these groups of people have helped me.

Goal for 2017: Do much of the same as this past year, except add looking at my experiences with more gratitude.  I spent a lot of time over the past year thinking “I woke back up for this?! Why?”

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My Macomb Family (Me, Optimus, John, Anas, and Amjad)

Over the past few weeks I’ve had the opportunity to spend time with two students from Syria, and couldn’t help but think about how amazing it is that we were eating good food, playing games, and enjoying each other’s company. Who would have thought I would be sitting around a table two years later enjoying time with two people from Syria in Macomb, Illinois?

 

This world we live in often looks like this:       scribbles

when we want it to look like this:       straight_line

Perhaps if it did we would miss out on discovering all of the:       main-thumb-t-1800-200-lon8kkfhqfctckdt2gwalfgnc0jejhmv

that exists where the lines cross.

Happy 2017 Everyone!

Exhaustion

What they don’t tell you when you are working hard for a goal is about the exhaustion that comes with it. My goal is to keep pushing myself through recovery so that I can get back as close as possible to how I used to be. I don’t waUnknown-1.jpegnt to give up. Why can’t it be like in the Olympics where you see a 10 minute video showing the behind the scenes footage that pumps you up just enough to know that the preparation made it all worth it? I want my 10-minute video now, so that I can see the outcome.

This is easily the hardest experience I’ve ever had and I’m tired of having it. It is a tiredness that nothing can cure. It just needs to be gone through to get to the other side.

I am exhausted, yet told to keep going. Not just by other people, but by myself as well.   It is some sort of drive inside of me that keeps pushing me as though I have no choice.

I am not experiencing the same exhaustion I felt pre- “Life explosion,” which is what I call it. This is the exhaustion that comes from having to think about every step I take.

Every. Single. Step.

This is the exhaustion that comes from being required to use complex executive functioning skills that I had earlier been able to just use.

This is the exhaustion that comes from retaining enough cognitive skills that you are acutely aware of every struggle you now have that you didn’t use to have.

This is the exhaustion that comes from wanting to be over the experience.

This is the exhaustion that comes from working hard to accept that you are making progress, while at the same time wanting to apologize for every unclear sentence, quick response, or inability to be confident in reading the feelings of others.

This is the exhaustion that comes from muscles spasming out and there isn’t anything you can do to control it, and you KNOW it makes others feel uncomfortable because it makes you uncomfortable. Because you know it is ugly.

This is the exhaustion that comes from choosing to live with other people in the world.

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Who doesn’t want to see a cute photo of Optimus Prime napping?

 

“In my own worst seasons I’ve come back from the colorless world of despair by forcing myself to look hard, for a long time, at a single glorious thing: a flame of red geranium outside my bedroom window. And then another: my daughter in a yellow dress. And another: the perfect outline of a full, dark sphere behind the crescent moon. Until I learned to be in love with my life again. Like a stroke victim retraining new parts of the brain to grasp lost skills, I have taught myself joy, over and over again.” –Barbara Kingsolver, Author

Another School Year Started

I took a break from personally blogging this summer, and need to get back into the swing of doing it at least once a month. For these reasons, I thought I would post about my summer and the beginning of the school year.

For starters, the first week of the new school year is over.  Woo hoo, 🙂 I did it!  I will say that I notice my energy went up over the summer, which is exciting.  Still, I am quite exhausted in the evenings and have spent a good bit of time sleeping this weekend.

I am still going to physical therapy at the local hospital to work on my continued recovery.  Yes, this means that I’m continuing to also improve physically too.  I do still have foot drop, but I have become much stronger, the spasticity has decreased, and I can walk faster.  One of my goals is to be able to run, and I am happy to say that I got to a speed of 3.5 on the treadmill (which is the lowest speed for running), and I can do that for just over 3 minutes.  Yes, to do this I wear a harness that is attached to the ceiling in case I fall, but I can still do it!

This summer I worked again on the book I’m writing about my January 2015 life explosion (as I now call it). I finished another draft of it in early August, and am having someone edit it for me now. I actually think it isn’t too bad, and might possibly be something folks want to read. I’ve kept it focused on the patient perspective of everything I’ve been through. I’m keeping my fingers crossed that it is worthwhile.

Third, I did get to go to my favorite place, Lake Vermilion, MN, this summer for two weeks. This year I had a chance to spend time with family, and I swam in the lake. I tried out a pool later in the summer too. FYI, swimming is very hard, but also very enjoyable. A special moment was when my niece taught me to do all of the swimming moves she learned from her swim instructor when I told her that I was afraid to swim. Like a good student, I listened to her instructions.

I also taught a summer course, which was quite enjoyable, and I prepared for my fall semester courses.  Now that I have a better understanding of my disabilities, I was able to be more strategic in my planning.  All of this is to say that I feel as though I’m both improving and adjusting…hopefully the first year back was the hardest for this “new” body I inhabit.

It was great to see the students both in classes this week, as well as those in the Western 1st Generation Society (W1Gs) group.  I am very excited to say that all of the students in the group came back to WIU this fall, and are prepared for the Activities Fair next week.  I anticipate it will be a great year thanks to all of them too!

Finally, no great year would be complete without a new dog.  He is a 5 year old PomChi mix that we adopted from the McDonough County Animal Shelter.  I know that not everyone is a dog person, but it is pretty awesome to have something SO EXCITED to great me each time I come home.  Dogs are the best! 🙂

Optimus Prime our 5 year old ChiPom mix.

Optimus Prime our 5 year old ChiPom mix.

Foot Drop or Drop Foot

It does not matter which way you phrase it, as both are used in the medical community.  If you desire to learn more about the medical reasons for this condition, click here, as this post will not be one in which the condition sounds distant and easily solvable because I have foot drop.

I’ve spent time thinking about foot drop lately, although I’m not quite sure I can explain fully why. Perhaps it is due to the spring weather that is causing me to want to be outdoors, or perhaps it is due to the fact that last spring I was thinking about foot drop too.  I am a believer in such energy connections existing in the world. No matter the reason, it has been on my mind, and the following are some descriptions as to what my experience is like:

Spring is here!

Spring is here!

First, my left foot is freezing most of the time, however, this does not mean that it has no pulse.  In fact, it is quite the opposite.  The blood is moving around great!  🙂 Unfortunately, while my brain is doing a good job working with the rest of my body to maintain a regular temperature, my left foot has gone rogue…and from time to time is so painful that I think it is trying to secede from the union of my body.  When it is not freezing, it is sometimes a lovely burning feeling, that can be so painful that I have to remove my shoe or brace right away to cool it down. In between these two temperatures are phases of it feeling as though it is one giant bruise, as if I’m getting a blister, or it has no feeling at all. I prefer the last option, if I have to choose.

Second, I can’t feel much of my leg from the left knee down…I only know that it feels heavier than my right leg.  I can also feel pressure, and the tips of my toes have gained a great suction ability of some sort to hold my leg in place if necessary (usually at night when I’m walking on our wood floor with socks on).  One might think this is a neat super power, but I assure you it is not and often leads to feeling the kind of pain that could be relieved if I could spread my toes, but I cannot…so that stinks.

Evidence of my high school coolness

Evidence of my high school coolness

Third, spastic is not just a term I used in the early 1990s when I was a teenager and was trying to describe how someone was acting. (I know, I was cool.  🙂 ) It is a term that describes my leg when it is refusing to do what I want it to do.  In these moments, it pouts by going rigid with my foot wanting to roll inward even with a shoe on my foot.  If I am standing, which is usually the case (because I’m often turning too quickly, I’m tired, or I’m walking down an incline without thinking about it) when this happens, you can imagine how challenging it is, and I have to stop walking.   The only way I’ve found to resolve this issue is to consciously tell my leg to calm down (I use a stern tone, and give it a good side-eyed glare).  If that doesn’t work, I bend over to apply pressure to my ankle area.  The upside is that there is no feeling other than stiffness when this happens…it just doesn’t look “pretty”.

Fourth, when I wake up in the morning, it often feels as though my left leg is hatching from an egg.  As if I’ve been curled up all night with my leg tucked in tightly (which, I assure you, has not occurred) and moving it is a new experience that is both refreshing, and irritating at the same time.  Another way to describe it is that it feels twisted, as though it is the leg of a table, and needs one more turn around before it evens out the table top.

I use a quad cane.

I recommend the quad cane.

Fifth, I consciously think about walking with almost every step that I take, as well as the weight distribution of my entire body.  Yes, I am grateful that I am able to walk, and I know that I’ve improved a lot..however, in my mind, I look as though I’m impersonating a toddler learning how to walk, and get tired from having to think about lifting my leg, shifting my weight around, as well as assessing where each chair, table, and other people are walking, so that I can stay clear and/or have something safe to hold onto if necessary.  (This is where the cane comes into play, as most folks stay clear of it.)

2016 Orange is the New Purple

One year ago today, I drove myself to McDonough District Hospital in Macomb, Illinois, because I was struggling to breathe.  Little did I know I would return home 46 days later after experiencing a pulmonary embolism, two seizures, two strokes, and cardiac arrest for 56 minutes within a two day period. I still find myself stunned that I’m alive. To say I had a challenging year would be an understatement. As the year went on, I admit that my mind was increasingly full of questions regarding why I “woke up” (which is how I phrase it) and I felt that I was deeply learning about faith and trust.

hope-sunSo, when the 2016 began this past week, I couldn’t help but think that this year had to be different.  My approach was to begin doing again the behaviors that helped me to successfully make it through 2015:

journaling, making to do lists, breaking big jobs up into smaller projects

One item I knew that I needed to add to my list was to look for messages of hope being sent my way.  Yes, such messages were probably always there, but I had lost track of seeing them by the end of 2015 (when you have to remember to breathe at the same time that you bend your leg during physical therapy, it can be easy to forget to look for hope).  This year, I not only wanted to see hope, but I wUO TCU Alamo Bowl 1_1451686431133_20735_ver1.0anted to acknowledge the messages of hope even if it meant talking out loud to myself so that I would hear the reminder.  One message of hope, came my way on January 2, 2016, when my undergraduate alma mater, TCU, played in the Alamo Bowl.

During their record setting comeback, I couldn’t help but notice connections to my story over the past year, all pointing in the direction of continuing to persist in the face of a situation in which many would have already given up.

I see you hope.

For example, coach Gary Patterson attributed his change in wardrobe to assisting the horned frogs in their victory over the ducks.  The ironic part is that the shirt he changed into was a purple shirt.  Purple, which is one of the two colors of Western Illinois University where I currently work. Purple, is the color faculty, staff, and students are encourage to wear on Fridays.  One might think that 2013-banner-thinkpurplepurple is my favorite color, but it is not.

For numerous reason, orange is my favorite color (hang in there…I promise there is a connection), and last spring when I was at OSF-Peoria my younger sister asked if she could be my social media PR manager (arguably this is a part of what she does for a living, so it was good professional experience and I could not do it).  Little did I know, she would start a social media frenzy almost all of which related to the color orange.

 #orangenailsforsarah on Facebook

#orangenailsforsarah on Facebook

Videos were created for me. One video was created for me by some former students, and several from various country music artists (for example, Brett Eldridge and Montgomery Gentry).

#orangenailsforsarah on Facebook

#orangenailsforsarah on Facebook

This resulted in me thinking that everyone on Facebook was wearing orange just for me.  (Yes, I am now aware that it was due to my news feed being comprised of my friends and family…please see above life explosion as to why I might have been a bit slow to realize it. 🙂 )  Regardless, having orange all around me worked, and I dug deep to find my motivation to believe that I could walk again.

I could not stand without the help of this machine.

I could not stand without the help of this machine. It is hard to see, but please note that I have on an orange top and purple bottoms.

It even resulted in:

#DQstyle

So, there was Gary Patterson on January 2, 2016, reminding me that all my friends and family were still wearing orange for me.

I see you hope.

And then there was Bram Kohlhausen (TCU’s back up quarterback) and his family. Not sure how many folks saw Dash Kohlhausen’s tweet “Special thanks to the #oregonducks fan who sold me his sideline pass and made moment possible @WinTheDay”.  I am not sure who @WinTheDay is, but I couldn’t help but see the connection between@WinTheDay and #winthisday, which is a hashtag and motto that the family of another patient, Niko, created as a motto for his recovery.  Niko, a 16-year old high school football player, happened to have a brain aneurysm and be in Peoria at the same time as me. (He also happened to at the time like the Oregon ducks…I’m trying to recruit him to WIU.)

I see you hope.

And then there is the story of the triple overtime, which resonates with the theme of persistence rising out of Bram Kohlhausen’s own story of playing college football.  Messages of horned frogs not ever giving up, and believing the impossible were suddenly all over my news feed.  This time the message was quite clear:

AND 

#hornedfrogstylewhich is exactly my plan for 2016!