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.

Backpack

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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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!

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.

Are Our Inclusive Communities for Those with Disabilities?

Since the beginning of 2016, I’ve challenged myself to have new experiences, which have led me to increasingly realize how hard it is to function in a world that isn’t designed for people with foot drop.  I have a physical disability that can be seen, and although people can see it, I often think of disabilities that aren’t as visual.

Where are our student affairs conversations about any of those who comprise these groups when we talk about social justice? 

In our efforts to create more inclusive communities?

Unfortunately, I can find it only occurring among those like me (or those who are close to us), and I am new to the group.  So, please don’t take what I’m writing here as me speaking on behalf of everyone with a disability, and don’t dismiss it either, as it is insight into one person’s experiences.

Identifying as a person with a disability is not unlike many other identities, except that it is not always visible.  Nearly 1 in 5 people have a disability in the United States.  It is an identity that cuts across race, class, and gender, etc.

As someone who has more recently become disabled, I get it:

The world would be easier if people like me, people who looked abnormal when trying to function in a “normal” way (in my case walking) would just go away.  I feel that message from the systems that exist in the world almost every single day. I know that I am not alone in feeling this way, and I know that the feeling does not belong to just those with a disability.

I’ve spent time considering a few points this semester since attending and presenting at a conference, and participating in recruitment days

Western Illinois University representing at ACPA (I am on the far left)

Western IL University representing at ACPA (I’m the far left)

for the program in which I teach–neither of which were especially challenging for me physically prior to everything occurring.  I am not sharing these points because I want everyone to constantly think about what it must be like to have a physical disability.  In fact, I suspect that most people, even after reading this, will do what I used to do, which is go back to a comfortable, able-bodied routine.  However, I still think I have some points worth sharing, so here are three thoughts for the field of student affairs to consider:

  1. Please understand that I will not walk into a crowded room and work the room, as I don’t know who will be paying attention to where they are walking and/or what might suddenly change about the environment.  In fact, I would prefer to sit and, as I meet people, I will explain to them why I am not getting up.
  2. Just ask me if I need help and know that I am okay with saying that I have a disability.  Perhaps I haven’t had my disability long enough to insist on person first language, and I do understand (deeply) the negative stereotypes that come to mind when folks use the world disabled.  However, after all the work I’ve put into my recovery, the last thing I have energy for is serving as the “word police.”  I get it…if you are describing me, I’m okay if you say “the disabled person”.  I’m just happy that you saw me without me having to remind you that I exist.
  3. Finally, I know there is talk about gender inclusive restrooms within the field, which is great. For me, at the end of the day, it comes down to being able to use any restroom.  At.  All.  So, please stop going into what is often the only accessible stall simply because it has more room.  I know people do it…I used to. I’m six feet tall and used to weigh 36 pounds more than I do now (I’m still considered “big boned”), add to that a backpack, a winter coat, and I feel more comfortable using a larger stall.  Now, I need it. Please don’t hear that we should decide who gets which stall and when. However, for me, there is no getting off the toilet if there is no bar to use to pull myself up.

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.)

The “How”, Spoon Theory, and #SAPros

In January, I experienced a medical crisis that caused me to reestablish all of my personal and professional goals for 2015.  I have been working toward my goal of recovery and adjusting to my “new” normal ever since.  Recently, I was given permission to return to my teaching position in order to teach one course this summer.  I am both excited and anxious about it.  So far, it is progressing nicely, but week one is always an easy week, because you are getting the course established and going.  🙂

Beyond my anxiety around not being able to fully walk due to my acquisition of foot drop, I knew I would be challenged to have enough energy to fully return to work.  I’ve been told ever since I “woke up” on January 7th that I would be tired and would need a lot of rest.  And, yes, early on this was true, I did need rest.  Yet, my need for rest has evolved as I’ve progressed in my recovery (at first I was tired from coming back to life, and now I get tired from using more higher order cognitive skills).

brain-sleeping1Recently, I was describing the unique way in which I found myself tired– “I can feel my brain and it is tired”, and a friend told me that it sounded to her as though I was describing Spoon theory.  A few days later, Spoon theory was shared on the Stroke Talk for Facebook group that I am a member of, so I decided to spend more time with it.  Prior to my January experience, and the conversation with my friend, Spoon theory was not a theory I’d come to know.  It isn’t found in any student development book that I know of, nor have I come across it in any counseling theory texts.  I found it to be accessible, easy to understand, and quite important to our field when considering a host of invisible disabilities.  (I will assert that I believe we quite often complicate how to bring theory into practice by not using accessible examples for all—perhaps we need to use more dining utensils 😉 ).  midi-spreader-appetizer-fork-demi-spoon

Furthermore, I teach the Student Development Theory 1 course at Western Illinois University and during class we spend time exploring how development occurs.  We do this because I believe it is powerful to know how development occurs if one is going to promote development amongst students, not just what the identity or characteristic that is developing.  It is challenging to explore development theory this way because it is almost always easier to identify “what” the theory is developing rather than clearly articulating “how” it is being developed.  As we do such exploration as a class, we begin to realize the power dynamic present when one determines a developmental place:

Does one place another in a specific spot in their development? 

Does one allow another to share where they are at in their development for themselves? 

These are important questions.  They are the difference between prescribing developmental interventions, as if we ourselves are fully developed, and creating developmental interventions, with the assistance of others, because we acknowledge that none of us are fully developed.

I’m not necessarily advocating for Spoon theory to be included in student development theory courses, although I do secretly think it would be a good idea.  I am asking us to consider what it would look like if, instead of focusing so much on “what” is being developed, and the end result of that developmental process, we start the conversation about bringing theory into practice by focusing on “how” development is occurring.

For example, Spoon theory asserts that if my foot drop heals (which I am really hoping that it does) and I am left with a non-visible neurological disorder due to my January experience, I will only be given a limited number of spoons for the day that I can use to accomplish my tasks.  It also claims that each of my tasks will use up a spoon, which might result in me only having one spoon left for the day come 6 p.m., but more work to do.  In other words, instead of focusing only on what my decreased energy is at various places on my road to recovery, Spoon theory also helps others understand how it is that I’ve come to have decreased energy.  And, personally, I’ve found that understanding both how I’ve come to have decreased energy, and what decreased energy is like for me, allows others to better understand my experience and support me as I continue to develop toward my goal of full recovery.  If this is how I’m left feeling about the inclusion of attending to how, and not just the what, in the process of development, imagine how our students might feel if we were to do the same as we put theory into practice as student affairs professionals.  It certainly seems to me as though it would create a more inclusive environment for our students.

My Left Foot

My left ankle might not ever move again on my command, and I might not be able to spread apart or wiggle my toes.  I have foot drop.

This is a terrifying thought to me for many reasons, as well as a fact that I might need to come to accept.  Yes, I do realize that it hasn’t even been a full four months (it will be on May 6), since my life exploded (a PE, two seizures, two strokes, and cardiac arrest for an hour) in January.  And, I do know that some people get movement back a year later, and some times even two years later.  So, please don’t hear that I am giving up hope because I am not.

I have hope. hope

But, I also want to not have my expectations up too high because stroke depression is real and I don’t want to slide into it.  After all, strokes are the leading cause of long term disabilities in the United States.

I am working hard every day to accept what has happened to me, and appreciate that I am still here and still have a lot going for me.  This all means that I have a tug-of-war post-copygoing on inside of me and it is not easy.  Part of me is focused on having hope, and part of me is working on accepting what has happened to me.  I’ve been encouraged to just focus on having hope, and I try.  It is just that it is much easier for someone to say that to me than for me to do.

I struggle daily with questions such as:

It has been almost four months, why am I not back to normal? 

All of the rest of my leg has woken up, so why is my foot so insistent on sleeping?

What else haven’t we tried that we can try to get it going?

Did it just move, or did I imagine it?

There are several ways that I work through my tug-of-war:

1. I am quite protective of who I surround myself with because I need to keep having hope.  I can’t spend time being around thoughts and feelings that are negative because it is too easy for me to see my situation as negative.  It isn’t that I don’t share with those who are near me how I am feeling, which is often that I am sad, but I know that I need others to respond positively (which often means just being with me) even if I am crying.

2. I try hard to keep moving.  My older sister said to me when I first woke up in the hospital, that the best thing I could do for my recovery is to keep moving.  I am not sure I fully understood what that meant until recently, and I hear her voice in my head each time I want to just be lazy and do nothing.  I’ve also recently been exploring yoga for foot drop, although I’m terrible at it–still, I am determined.

3. I journal about my feelings related to my left leg.  I have never really spent time journaling about one specific part of my physical body before, but it makes sense for me to do so now.  Yes, my left foot and my need to wear an AFO (ankle and foot orthotic) means that I can’t be outside like I used to, but that doesn’t mean that I can’t go outside. I try to become fascinated by my leg, and notice if it shakes and consider why that might be (am I nervous, etc).  I want my left leg to remember that it is a part of my body, and needs to listen to my brain again.

4. I process through in my mind how much privilege I had when I didn’t have to think about walking, and the fact that I might be able to make a full recovery is in itself another privilege.  I still have many things going for me even if I have a physical disability the rest of my life, so I will be okay if this is “as good as it gets”.

5. I can make a cane look cool…so, who cares if I have to use it the rest of my life.  It helps remind me to stand taller, which is good for my posture.

Still…I really want my left foot to wake up.  064151-high-resolution-dark-blue-denim-jeans-icon-people-things-foot-left-ps