01/06/2017 by @Sit_With_It - 4 Comments

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.

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.

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.

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 adventure 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?

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:

when we want it to look like this:

Perhaps if it did we would miss out on discovering all of the:

that exists where the lines cross.

Happy 2017 Everyone!

11/27/2016 by @Sit_With_It - 0 comments

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.

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

10/27/2016 by @Sit_With_It - 0 comments

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 want 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.

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

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.

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. 🙂