Falling Down

On Friday, I fell down twice; once when my adventure partner was home and once when he was not.  The second time, I spilled the drink I was carrying in my hands all over myself, and had to change clothes.  The first time, I was outside doing some yard work, so it sort of looked like I had taken a seat in the grass.  Two years ago, when first returning home from the hospital, I didn’t anticipate my first fall would be my last day to fall down.  I am ever thankful that my PTs and OTs have taught me how to get myself back up, which, even if someone is around me, I insist on doing by myself.

I wrote the above paragraph two years ago and saved it to my draft posts.  It recently caught my attention for many reasons.  First, it is indeed quite true that I have fallen down many times since the above paragraph was written.  Second, last week I wore a bandage on my chin due to my most recent fall.  For the record, this was the only time any of my falls have resulted in bleeding.

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I apologize for the grossness. This was my chin right after the fall. Ouch!

Two years ago, during my first few falls, a student asked me what it feels like for me to fall.  I spoke about my foot drop issue, shared my hope for continued recovery, and realized that I haven’t fully shared what it is like for me to fall.  So, I thought I would take a moment now (yes, two years later) to do just that, because I imagine that watching me fall from the outside is much different than what I experience inside.

First, I fall because I have foot drop, not because I have balance issues.  Gone are the days, thank goodness, of me getting sick from standing up (Yes, this happened January-February, 2015).  Also gone are the days of me continually walking into the right wall even when I don’t mean to do so (darn left neglect…big moments folks!).  🙂  For the most part, I am usually good about lifting my leg up high enough to be able to take a step.  However, if I’ve been sitting for awhile, am tired, or I get lost in thinking about something else instead of paying attention to lifting my leg up…I fall.

Second, I fall because I am carrying too many items (I use a backpack like a purse now), or forget that I cannot do the exact thing my brain is thinking I can do.  I walk only around 4,000 steps a day, so I need to be stingy about how I use my steps.  For example, I struggle walking through doors that self-close quickly and open from the right side.  It gets frustrating, and sometimes boring, to have to consciously think about walking.  The upside is that I’m much more aware of my surroundings than most people, because I’m always on the lookout for obstacles I might find challenging, as well as how to avoid or overcome them.

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My go with me everywhere backpack.

Third, I am usually fully aware when I’m going to fall and always try to land on my butt; admittedly, it has the most padding. 😉

Fourth, when I fall, especially if it is on my left side, it feels as though I’m falling into a hole with no bottom until I hit the ground.  It is a sort of “lighter than air” feeling and seems as if there is nothing I can do about it.  About a year ago, when I knew I was going down because I had sat up and turned too quickly, and this time I had too much forward momentum to fall on my butt, I braced myself for the moment of impact and was surprised to discover that my left foot was in a spot that helped me to stay on my feet.  This was a pleasant discovery and something that I told myself I would repeat if it produced positive recovery results…alas, it has not, or at least not in the same way that it did that day.

Finally, I know that bumps and bruises for stroke survivors are not good ideas.  Don’t worry, my blood is drawn fairly frequently to make sure that my INR is still within range.  Also, I pay a lot of attention to any bruises I do receive. I do so because, even though I have a heads up that I’m going to fall, I still find myself scared after I fall. I do not need my life explosion occurring twice.

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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.

Our Love Affair With Dualism

As a society, we love dualism. We enjoy reducing our options to two, and framing it so that the only options we have are the two that we often can’t stop obsessing over. Yes, our love of dualism is a lens to view the most recent presidential election and its aftermath (e.g., You either were for Trump or participated in the marches this past weekend, You either were for Trump or are for abortion, etc.).

It is also a lens to view most decisions. A few dualisms related to higher education, and specifically student affairs are:

films-cinema-movie-choices-romances-tedium-rte0331_low.jpgWe either go to college or we don’t; We are either life-long learners or we’ve stopped learning; and one that has been on my mind over the past two years, “I will either get better or I will not”.  Thankfully, given my health challenges I’ve had to make my options for this one more complex than a simple one or the other.

Another that has cropped up recently in my mind is:

We are either for students developing/growing/learning/becoming complex in how they make meaning or we are for student success.

Why is it that we do this?

I genuinely am interested in knowing. It makes no sense to me why we would frame our practice as though we have two options (please know that I am not perfect in not doing it either..see above). Yes, there is a movement to use “big data” to shape the higher education experience for students. And I agree that it has potential to result in some more personalized experiences for our students, which is great! Still, I believe that it is us humans that assist in the dfear-greed.jpgevelopment of students (aka, helping others learn), not computers exporting formulas. Thus, I believe that there will always be a need for some sort of student affairs professionals.

Additionally, although I agree that the innovation of the assembly line in the United States (U.S.) allowed us to gain traction in terms of having an advantage on a global scale economically speaking, I do not think that human growth occurs in an assembly like fashion. If it did, I hope we would have had it figured out a long time ago. Thus, another reason why I believe that there will be a need for student affairs professionals.

Another way that we enjoy dualism in our everyday lives is to reduce our interactions with others to be simply an evaluation of someone’s intelligence.

They are either intelligent or not.

This one I’ve heard a lot lately due to the el130003e1461282313o8184.jpgection, so not just within education.

Although lately in higher education, we seem to be doing this in regard to a variety of issues: social justice issues, what it means to be professional, political perspective, etc. I hope that we catch ourselves in these moments and pull back from drawing a causation between a person’s intellectual abilities and how they make sense of the world. I know that we often don’t…as evidenced by conversations I’ve witnessed in person and on social media.

The multitude of options that exist between two choices is an area we as student affairs professionals can assist others in seeing. As long as we continue to be the folks who have examined change (aka development) on the individual level, as well as on the organizational level–including how the two interact. Again, there is another reason we need student affairs professionals….perhaps even for life, not just within institutions of higher education.

Lynn Pasquerella, President, Association of American Colleges and Universities, speaks to our belief in dualism as well in a video published by The Chronicle of Higher Education in December, 2016.

So, again, I ask: Why do we reduce our options to only two? And this time I add to the question: What can you doing to recognize it and help move beyond it?

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!

Still Thankful

As Thanksgiving comes to a close and I prepare to head back to work tomorrow, I can’t help but think of all that I’m thankful for over the past year and more.  It can be so easy to get caught up in one’s own responsibilities that one forgets to find a time to pause and recognize all that is in their life.  Thus, I am going to spend time considering five such points in this post.

  • I am thankful for the color orange and for my younger sister’s hard work at making sure that everyone knew it was my favorite color in January 2015. I say this because I have many orange items now and, each time I see one, I think of the people who provided me with motivation and support that spring (and even now).  Just today, for example, I had such a thought as I was loading an orange mug into our dishwasher.
  • I am thankful for my ability to walk on my two legs. Yes, I look a bit like Frankenstein at times when I do walk, and yes, years from now I will have damaged my body enough due to how I can walk that I will need to have surgery.  Please know, however, that I can see how I am continuing to improve, too.  It’s just…so…slow.  However, what keeps me going is my ability to see that I continue to improve.  I am thankful I can see it.
  • I am thankful for the dog that my adventure partner and I adopted this fall (Optimus Prime…or, Optimus). He reminds me to find time to relax, to be excited about seeing each person each day, to appreciate and eat all of my food, and to enjoy snuggling.
  • I am thankful for the daylight. The days are getting shorter, and yes, I now wake myself up to a sun light each day (which, has greatly helped me adjust to the time change).  Still, the sun comes out and provides me a chance to appreciate it, as well as to appreciate the dark and what it, too, reveals.
  • I am thankful for my home. Not just the physical building that I have over my head, although I am quite thankful for that too, but my home is the community in which my adventure partner, Optimus, and I live.  It is full of people who have a different take on life in so many ways, which makes each of them beautiful and amazing.  I know that they are people I can count on if I need help, and people who will get up each day and do their best to consider others.

 

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Optimus Prime (aka Optimus) snuggles in with me for the night. 

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