Losing it.

The other day, I was catching up with an acquaintance who mentioned to me that she thinks Joe Biden is “losing it.”  This was the day after his first evening speech to the nation. I found myself taken aback for a few reasons.  

Photo credit to Vox.com

First, it seems quite dangerous to me that people like me, people without a direct relationship to Joe Biden or any medical training of any kind, are deciding if he is senile.  It seemed to be a “there but by the grace of God go I” moment, as the person claiming to have assessed his cognitive abilities is only a few years short of his current age.  Could it be a projection of what is really going on with them?  

Second, I responded to my friend that I didn’t see him that way.  In fact, I shared that I was quite impressed with his ability to deliver a speech to the nation given what I know about his disabilities.  This is where I connected my own personal experiences with my disabilities to what I see in him.  Since 2015, when I acquired my disabilities, I’ve been working to better understand myself as a disabled person, which has required me to learn a lot about disabilities, in general. Trust me when I tell you that our society is not designed for people with disabilities.  

One of my disabilities is something called high-functioning, mild aphasia.  This means that I can reflect upon my experiences and realize that there are moments in which I can’t find the word or words I’m looking for, or I can find the words but they come out in the incorrect order.  As you can probably imagine, I am terribly frustrated in these moments.  I will boast that I have learned to be more patient with myself and have developed techniques for successfully navigating these moments, such as owning that I am frustrated and am struggling to think of words.  These actions are much better than the often tirade of cuss words and throwing of items (red grapes and papers mostly) that I would do early on when I struggled to have choice over my frustrations.  Additionally, in these moments, I can now assess myself to see if I am tired or overly stressed, as I’ve found that my disabilities become even more pronounced when I am tired or stressed.  

Optimus Prime, the best dog ever, who has always made me feel less alone when I’m tired and stressed.

Here is where I think there might be a connection between myself and Joe Biden.  Could it be that when I am 20 or 30 years older, people might decide that my cognitive ability is deteriorating because I sometimes search for words? The very action I sometimes do right now?  Currently, the usual response I get from people is that they too have moments where they can’t think of a word.  Great, I often think, except I didn’t use to have this struggle. And if Joe Biden’s sometimes searches for words and that makes him “losing it”, does that mean that people think I’m cognitively impaired when I search for words right now?  In the end, my worry is that in moments where folks are judging another’s cognitive abilities confirmation bias is at play, in other words, the very reality that we find what we look for.  

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.

Accepting Identity in Student Affairs

In my last blog post, I wrote about the connections I saw between rehab and learning. Since that post, I’ve been home for three weeks going to outpatient rehab. Outpatient rehab requires me to be outside much more, and living at home makes it so that my world is much bigger than it was when I was living on the second floor of the hospital. This also means that there are many more chances for me to be “watched/observed” by others. Now, I’m not necessarily someone who care what others think, but since January 6, I have felt much more exposed than usual while I am adjusting to my own “new” way of being in the world. This includes wearing an ankle and foot orthotic and walking with a four point cane.

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Last year, I attended and completed a series of workshops put on by Western Illinois University’s Disability Resource Center called Faculty and Staff Partnerships for Accessible Solutions (FASPAS). During these sessions, I learned again about the importance of universal design, and how I could bring such concepts into the learning environment within my classroom. I say again because as a student affairs professional I sat on committees at other institutions and attended workshops on accesssibility in higher education. At these workshops, there is always discussion about letting the person with the disability speak up and ask for help…don’t assume you know what they need. What there is a bit less focus on was the “feeling” in the room when everyone gets silent simply because you walked in to take a seat. The whole journey I am on, has helped me to realize that I, too, was probably one of those people, who suddenly got quiet when someone who looked like they needed my help walked into the room. Now, however, I feel quite different about that silence. I get it, I don’t look “normal”, but I am still the same person I was before, and I am on the journey of integrating a new identity into the whole of who I am as a person.

Recently, I finished reading the book Whistling Vilvaldi: How Stereotypes Affect Us and What We Can Do by Claude Steele (2010). In Steele’s book, he writes:

“Prejudice matters. It can shape contingencies. But identity contingencies can profoundly affect a person–to the point of shaping her life–without her encountering a single prejudiced person along the way….But remember, contingencies grow out of an identity’s role in the history and organization of society–its role in the DNA of a society–and how society has stereotyped that identity.” (p. 212).

If you had the chance to be around me since January of this year, there are a few main points you might hear me share.

First, I am not dead nor am I dying any time soon (if I can help it).

Second, I still have my brain. Simply because I am working on my recovery doesn’t mean I can’t think and/or that I am suddenly stupid.

When I came across this quote in Steele’s book, I couldn’t help but realize that what I’ve been concerned about are stereotypes that exist about people with disabilities in our society. Not that anyone has done anything directly to me, but they exist because I know them and I am impacted by them because I want to make sure that I am not fulfilling them. So, I’ve been working extra hard to get better as fast as I can. Now, it does occur to me that I am quite privileged in the sense that I have somewhat of a choice about getting better. I say somewhat, because nobody really knows how much I will recover, and I find that while I want to recover fully, I also am trying to process through what it will mean if I don’t. Steele summed up my recent tasks this way:

“My mission in this book is to broaden our understanding of human functioning, to get us to keep in mind that, especially in identity-integrated situations, people are not only coping with the manifest tasks of the situation, but are also busy appraising threat and protecting themselves from the risk of being negatively judged and treated. Perhaps the chief discovery of our research is that this protective side of the human character can be aroused by the mere prospect of being negatively stereotyped, and that, once aroused, it steps in and takes over the capacities of the person–to such an extent that little capacity is left over for the work at hand” (p. 213-214).

And, I by no way think that I am the only person who has ever acted this way. Indeed, Steele’s book cites research that supports his points. It does cause me to pause, however, and realize in a much more intense and powerful way what the students attending institutions of higher education who are exploring various identities might be experiencing.

Now, Steele offers a way for us to help lessen the impact of his reaction:

“A central policy implication of the research discussed here is that unless you make people feel safe from the risk of these identity predicaments in identity-integrated settings, you won’t succeed in reducing group achievement gaps or in enabling people from different backgrounds to work comfortably and well together” (p. 215).

What I am learning, is that safe environments aren’t environments that simply state that “all people are welcome”, nor are they environments in which people have learned social justice speak (both, assertions I experience student affairs professionals make). For me,

safe environments are those without the intense feeling of silence because everyone is afraid that you might fall and hurt yourself.

It is quite important that we consider how we create these environments in student affairs in such a way that they don’t inadvertently trigger identity contingencies.

Whistling
Steele, C.M. (2010). Whistling vilvaldi. W.W. Norton & Company, Inc. New York, New York.