05/25/2017 by @Sit_With_It - 0 comments

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).

: Now you can see my Bioness

: Now you don’t

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.

: Some of the results of the yard work.

: Lou checking out the yard work.

: A side view of the backyard.

: This is when I knew spring was here. 🙂

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.

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”!

02/06/2017 by @Sit_With_It - 4 Comments

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.

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.

09/29/2016 by @Sit_With_It - 0 comments

On My Journey Through Darkness

I recently reread a short essay by Maureen Watson (2015) titled: Treasures in Darkness: Loving the Questions. In the essay, Watson speaks about what it feels like to live in the darkness. A year ago I was in a dark place, and although I had good reason to be there, it was torture. Parker Palmer’s metaphor of winter also speaks to where I was at the time. It was cold and it felt like the wind was blowing hard as I stood on a flat plain all alone in the dark of night.

My choice to phrase the above paragraph in the manner that I did was intentional, and does mean that I’m no longer solely in that place. I don’t want it to be heard that I’ve somehow done a 180, but I have made progress. And I can see the progress. All of this I share because recently I’ve been thinking about how I once had a counselor who asked me if it was okay to revisit experiences that I thought I had worked through. I was in a very stubborn place and was sharing with her that I refused to consider the past…I just wanted to be fixed even though I knew that she wasn’t going to tell me how I could be fixed. She pointed out that despite working through something in the past, I had since had more experiences that might lead me to see my past experiences differently, and she asked me if I thought that was possible. Her question stayed with me, and is often something I still consider.

All of these thoughts combined with a passage I was recently reminded of in my Introduction to College Student Personnel course:

“Personnel workers see the person–at whatever age–not as a single moment independent of the past and the future, but as a transition point in a stream of experience that goes back to infancy and will continue on into the future” (Lloyd-Jones, 1954).

And the combination of these thoughts with current events such as the shooting of Keith Scott, the homelessness of the Syrian Refugees, the Native American tribal land protest, and the weekly interactions I have with first generation students place my mind in a spot where I can’t imagine how we could ever feel settled in higher education. Yet, feeling settled is often what I believe we desire. I know that I’ve desperately wanted to feel the security of having settled over the past year and a half–the safety that I can count on at least one piece of knowledge and believe it to be true.

Wouldn’t it be nice if we could feel comfort in spite of today’s current events instead of only frustration and darkness?

It is in these moments of desiring comfort and stability, however, that I can see that I’ve managed to get through the dark place I was in and find a bit more light by going one step at a time. And this time, I deeply value the light rather than taking it for granted. In other words, now that I am able to see how far I have come, I find that I want to make sure that I am always a bit uncomfortable, and in many ways I hope that we all are a bit uncomfortable. For it is in that spot, that I believe we discover the most about ourselves.

08/29/2016 by @Sit_With_It - 0 comments

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.

03/18/2016 by @Sit_With_It - 2 Comments

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!

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

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 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.)

09/27/2015 by @Sit_With_It - 0 comments

Health Update: Thank you to my OSF-Peoria Caregivers

I don’t usually use my blog to post updates about my health, but I thought I would do so this week. That way there is a more permanent thank you out there in the Internet world for those who helped me begin my recovery journey at OSF-Peoria.

In case folks didn’t know, this past week was Rehabilitation Awareness Week at OSF-Peoria. I received an invitation to attend after being identified as an all-star rehabilitation patient by my therapists. It was a huge honor for me to receive such a invitation, and I want to say thank you to my adventure partner, John Nathan, for taking me.

Attending meant having an opportunity to thank everyone at OSF-Peoria who helped me during my first two months post health issues. It was a wonderful event too. Great job to the folks who put it together! Each day, I’m thankful to be here to have a chance to say thank you. Some of you might know that I’m working on a book about my experience, but I anticipate it being a bit before I get it to a publishable quality. Still, I do have a draft of the whole book written, and a list of edits to make to it. Thus, in place of having a book to share with the world in which I have written my thank you to all who were a part of my recovery, I thought I would post some photos from the rehab celebration.

My PT and OT Team. There were many more therapists that I worked with, but these two put up with me the most. 😉

Me and Niko meeting up again after our time in rehab together.

Me, Heather, and Niko laughing…probably at something funny Niko said. 🙂

The contraption that I have hanging around my neck is a remote to my Bioness, which is an electrical stimulation unit that activates my peroneal nerve that is causing my foot drop. I’ve been using it for about two months now, and it has helped me improve in my walking. It was fun to be with folks who were excited that I have it. Of course, I was instantly SUPER nervous to walk, so didn’t walk without my cane until after everyone left, and then I let John take this video of me.

Thank you, thank you, OSF-Peoria!

07/08/2015 by @Sit_With_It - 0 comments

Visiting My Relaxing Place

Last week, I took my first approved trip since my health issues earlier this year. I was so excited, as there was only one destination that I wanted to visit in order to take a break, Lake Vermilion, MN. The location where John and I were married, and where my family has a cabin. Last summer I spent approximately 5.5 weeks there and felt very refreshed for the new school year. This year, I was hoping to find peace and perspective before returning to therapy and the start of the school year in the fall. Despite my excitement, I also admit that I quite nervous. I knew that I would not be able to do many of the tasks I had done in the past. Activities such as: taking walks, laying out near the water, and helping take down fallen branches were not endeavors I anticipated being able to participate in. The whole week prior, I kept thinking to myself, “if these were the things I knew I would struggle with, what other things might I discover I could no longer do?”

The week of the trip, started with John and I attending a wedding for one of my former students. It was great fun! Yes, it is true, I learned I really can’t dance now…except slow dance, which is more just me swaying back and forth, and the buffet line was something John had to help me with (I assure you, that he had no problem helping me with food). Despite these issues, I believe I appreciated more than ever before the time spent with good friends celebrating the love of two people. Valuing time spent with others is something that has become even more important to me since January. John kept asking me if I was tired, and even when I became tired, I didn’t want to leave because I knew that the moment could not be captured again.

The next day, John and I were off to northern Minnesota. We get to Lake Vermilion by going through Wisconsin, which is a much prettier state than I had ever realized.

Crossing from Wisconsin into Minnesota with a view of Lake Superior

One of my favorite parts about going north during the summer is that you get to experience spring all over again.

Haven’t a clue what these flowers are, but I believe they were orange just for me!

I spent a lot of time snuggling with Lucy, which is always wonderful.

Best. Dog. Ever.

We often rested at the same time.

This was often the view I had when she sat close to me.

Again, Best. Dog. Ever.

And playing games with my family.

I won more games than John, which is really all that matters.

We even put a screened tent up, so that I could go outside to read and take naps. It was wonderful.

Or, rather, my mom and John put up a tent for me to use. Thank you, thank you.

And this was my view.

Something I noticed is that due to my new environment, I could do several things one day and the next I would need to sleep quite a bit. Biologically, I knew this made sense, as I was taking in new information, and my brain was rebuilding those connections, but I didn’t expect to be so tired just from spending time walking down to our dock and back up the hill.

The day before we decided to leave, my uncle took us out on a boat ride. It was so wonderful! And, quite funny too. 🙂 Everyone kept asking me if I knew how to swim and if I could go into the water with my leg the way that it is. I found it humorous, as I’ve been swimming since I was a kid, and I haven’t forgotten. I responded by telling them that I wasn’t going to start gulping water if I did find my way into the water. This response, turned the conversation toward a boat crash. What if the boat crashed, nobody could get to me, and I would have to tread water for 20 minutes? Mind you, our boat is not the only boat on the lake, and it was July 4th weekend, so there was a decent amount of traffic. Thus, I didn’t anticipate having to wait 20 minutes for help from another boat. Furthermore, everyone on the boat knew how to swim, and I couldn’t imagine a crash in which I survived and none of them did, so I knew they would help me if I needed it. It was clear, however, that the only way I was going to be allowed to go on the boat trip would be if I wore a life vest, which I haven’t worn in forever. So, I agreed, and my mom helped to snap me into it.

My best selfie with a life vest on.

And the view of the lake from the back of the boat when we started the trip.

This was my view just to get us around the dock.

We started heading to new places and my view got better.

The view of the John at the front of the boat.

John’s seat up front.

We first went to check out the eagles that we can see from our dock and cabin flying around, and calling to each other.

Do you see the eagle?

How about now?

We then boated around a bit, enjoying the beautiful lake before stopping at Moosebirds for an ice cream cone, and eventually heading back to the cabin.

I had the best sleep while I was at the cabin, and have struggled a bit sleeping since my return. I’m not sure that I’m necessarily surprised by this, as Lake Vermilion was the location I went to in my head whenever someone (nurse, family member, friend, etc.) was trying to help calm me down while I was in the hospital.

I cried when I had to leave at the end of the week. Both tears of happiness and sorrow. Sorrow because I don’t anticipate I will get to go there again this year, and because I recognized how much I took for granted in the past by having two functioning leg s. Happiness because I did it. I went to Lake Vermilion, and enjoyed it more than I probably have ever enjoyed it before. Yes, it was relaxing to be in the great outdoors beyond my yard and the town of Macomb, but it was extra relaxing because I was with loving family. They helped to make my time special, and just being around them helped to restore my motivation to keep improving. I hope next year to go with even more of my family members.

Just a few more photos of the lake from the boat.

I did it. 🙂

04/30/2015 by @Sit_With_It - 8 Comments

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.

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 going 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.