Sunday, September 18, 2016

From Chris' perspective

Well, hello there. I think it is about time for us to take a little journey. Really, there is no reason in mind. No reason at all.

On March 11, 2012, we were living life similarly to any American couple without children. I say that, but I mean the boring, in bed by 10 p.m. kind. And I said we because this stroke didn’t just happen to me. It happened to Chris, too. And to everyone else who loves me, for that matter. But it mostly affected Chris and me. And I am pretty sure we will need couples’ therapy after I am recovered.

I can’t begin to imagine what it is like to have a spouse going through this. Seriously, at this age? I’d like to ask you to try and read this entry from Chris’ perspective.

For about a month after my stroke, I was in an intensive care unit at the hospital in Kansas City. Nobody knew what to expect of my prognosis. Except Chris knew my memory was still there.

Next, I was in Nebraska at a rehab hospital for three months. While there, I pretty much accomplished, well, nothing. Chris, however, sent a very important email I mentioned in a previous entry that got us connected with some communication specialists. I guess I did learn to sort of communicate using my left foot and a computer. And I guess it was there that we learned my recovery would take its own course and speed. They also got me off of that ventilator. Still not enough for me. Also, to be fair, I was kind of a mangled mess when I arrived.

Once I was back in the Kansas City area, I continued to work on using my toe switch with the computer. I was living in a nursing home then. For seven months, young Chris visited his young wife before and after work, on weekends and on holidays. While I was there, I began using my left thumb to communicate. And I started shaking my head.

I finally moved “home” in time for my one year stroke anniversary. I used quotation marks there because Chris and I decided to sell our house months earlier. He was then living in a tiny apartment close to his work and the nursing home. Chris was there and our dog was there, so it was home.

Now that we are living in Springfield, both our house and I need some work. Home renovations are underway, but not coming along as quickly as I had imagined. I guess that really exemplifies my recovery as well. My expectations have always been different than reality. That’s a good thing, right?

Wednesday, August 10, 2016

About hospitals

When I was much younger, I thought it would be fun to be in the hospital. For nothing life-threatening, of course. Maybe to get a tonsillectomy or have a baby.

Now that I think about it, I just wanted attention. Maybe some cards and flowers would’ve been the cure. 

Instead, my first visit to the hospital was not so great. Honestly, I can’t remember most of it. I guess I learned my lesson there. Now, I have been hospitalized more times than I can remember. And it is not fun.

I guess whoever said to be careful what you wish for was absolutely correct. Now I am wishing I had never seen the inside of a hospital—as a patient, anyway. I visited more than my fair share of family members, and I had a lot of meetings at hospitals because of my line of work.

In conclusion, I guess I would prefer not to go to the hospital again. As a patient, I mean.

Totally unrelated, I had a very bad impromptu power wheelchair practice session in the basement over the weekend. It’s one thing to go down a long, empty hallway, and entirely another to drive in a place with obstacles. I will go back for more, though. Because that is what I do.

Saturday, July 9, 2016

Why I blog

When this blog first started it was supposed to be about my recovery. While it may not be as prominent today, my recovery will always be part of my story. As Chris said so many years ago, “It’s not a sprint, it’s a marathon”. A little help--medical, miracle (or both)--would be appreciated.
On the other hand, my blog has become so much more over the past couple years. It has become a place where I can express myself somewhat freely. However, it takes a lot of work for me to post a blog right now. It also takes a bunch of time. And not just my time, either. Chris helps me proof and post. I can’t begin to thank him enough. Now that I think about it, I should also express my gratitude for those current and past caregivers for getting and keeping my hand positioned just right. That is no small task.
Speaking of which, two of the guys from Be Extraordinary came to start working on a custom foot switch for my chair, and they’re bring it up next week. That’s good, because I have places to go and things to do.

Sunday, June 12, 2016

Dear Blog Proofreaders

Dear Blog Proofreaders,
I owe you many apologies. There have been many comma omissions and other mistakes. I really have no excuse, except maybe I can blame the stroke. Yes, I will assign responsibility there.
As for writing style, I have no idea what I am doing. I can actually place responsibility on the stroke for this one. My Associated Press Stylebook is on a bookshelf across the house. If it happened to be in a different location, it wouldn’t matter, so there’s that. I could look up questions online, but that wouldn’t be efficient. So I guess that means we are stuck with Alison Style for now.
Just a sidenote, I am recovering from some rare disorder. At least I had never heard of it. One evening, Chris noticed swelling along the right side of my face and neck, and I began to feel pain radiating from my mouth. A visit to the dentist and referral to an oral surgeon later, and we learned that I have an infected salivary gland. Who knew? The antibiotic seems to be working though.

Sunday, May 15, 2016

Begging for money

My switch was broken for a while, but now it’s fixed. I am even getting a backup this time.
I know I never beg for money, but I will not let it stop me now. If you are longing for a nonprofit to support, boy howdy, have I got some for you.
Be Extraordinary has been invaluable to me. I would not have a blog without my switch. I also wouldn’t have taken as easily to the power wheelchair. And they are working on other projects for me and others who need their help.
Another nonprofit of note is Falling Forward Foundation. Simply put, they pay for therapy when insurance doesn’t. I was a beneficiary before I even knew anything about the nonprofit. Right now, Falling Forward is primarily working with rehab facilities in Lawrence, Kan., the Kansas City area, Colorado, and most recently, Chicago.
Of course, there is also NOPW whose purpose is to make people aware that young individuals can and do have strokes. Their annual events begin May 16, and go throughout May, but I suppose they would accept donations anytime.
I am also glad to report that my motorized wheelchair will be here within a month. It may seem like it has been a long time since I first mentioned it, but it really hasn’t. Not in the health insurance world. And if there is anything I have learned during this whole process, it has been a little bit of patience.

Monday, April 18, 2016


Prepare yourself for a couple of euphemisms. I have been watching a few historical dramas lately. For example, I am catching “Little House on the Prairie” almost every afternoon. Let me rephrase that so I sound less pathetic. “Little House On the Prairie” is on all the time and I watch sometimes. I am also watching “Bomb Girls”, “When Calls the Heart” and, of course, I was an avid “Downton Abbey” viewer. I was saddened almost as much by the cheesy series finale as I was by the fact that it was the last episode ever.
It is fun to imagine living in different eras, but the fact of the matter is that I would have probably kicked the bucket (euphemism one) by now if I lived in another time. There is also a small chance I could have not passed away (euphemism two) if I lived in a different period. Undoubtedly, I could have lived, but far less comfortably. There obviously would not be a blog, and there would definitely not be a power wheelchair in the 19th century, the 1930s or the 1940s.
While we are on the topic of media, I finally got around to watching “My Beautiful Broken Brain” on Netflix. While I thought it was good that it brought awareness to stroke in young people, there were too many missed opportunities (euphemism three). I think it is important to mention that there are many other telltale signs of stroke and ongoing side effects. The filmmaker chose to show her journey and no one else’s.

And for those of you who needed to look up the meaning of euphemism, it could be said that you are missing a few crayons in your box. But not really, because you are reading my blog.

Sunday, April 3, 2016

My family

I have to admit I have been remiss in not mentioning my great extended family.
On both my maternal and paternal sides, I have very nice cousins. I also have very kind aunts and uncles. My dad’s sisters, for example, are ever-present.
My mother’s younger sister has been more of an encouragement to me than I can begin to describe. She was sidelined for much of her adulthood, but she still managed to bring up two children, travel the world and get her doctorate. Oh, and I almost forgot to mention how all that happened during a long career. I think it was made possible, in part, because she had the emotional support of her husband. Sound familiar?
When I was in Nebraska, I felt scared and alone. But I felt less alone because she was there a lot. We planted coleus, watched silly movies and had storytimes about my mother when she was young. Back in  Kansas, she continued to visit. The staff at the nursing home and the computer I had borrowed knew her name.
Now, she is a grandmother and my aforementioned wonderful uncle is battling cancer.
I guess what I’m saying is I am extremely fortunate to have an amazing family. I took that fact for granted for much of my life. Because I lacked a grandfather on my paternal side (he died before I was born) and my mother’s mother died young, I felt cheated. Also, I was never close to my mother’s dad. But all this doesn’t matter. I feel close to all of them now.
Chair update: As it turns out, I need to go back to the doctor before I get my power wheelchair. Next up will be more waiting.
My mother, standing right, and her siblings at their Springfield home in the early 1950s.

Monday, March 14, 2016

Power wheelchair

Imagine not being able to move for four years. And also think of what it would feel like to suddenly be able.
That is how I felt when I drove a power wheelchair for the first time ever. I had absolutely no clue how it would feel. It felt surreal, by the way. I could finally turn around when I wanted to hear a particular conversation.
It is also quite terrifying to have to depend upon a machine to move forward, backward or side to side. I have grown accustomed to being pushed around. Mind you, I still can’t move my neck like a normal person.
Probably the most gratifying words I have heard through the entire power chair process came from Tom with Be Extraordinary. He basically said he wouldn’t have imagined I could drive myself three years ago when he met me. What will I be able to do three years from now? 
 Here I am in a test power chair.
Thumb to go right. Pinky to go leftt. Left toe on a switch is forward and backward.
I use the same switch to drive as I do to blog.

Sunday, February 21, 2016


I have mentioned before that my family moved a couple of times while I was growing up. Only one place stayed the same—Granny’s.
The farm came into the family in the 1800s. Land Grant, I think. There was plenty of ground unexplored.
I remember searching for shiny rocks. I also recall a certain tree with a limb that mimicked a rocking horse. I found a gorgeous Luna moth and put her in a jar. I only knew she was female because she laid eggs in her new home. When I took the jar to school, there were tiny caterpillars all around the building.
There was a one-room schoolhouse, flanked by my great-grandparents’ home and Granny’s house. By the way, my World War II-fighting, Purple Heart medal-winning grandpa built the house for them. Literally.
Back to Granny. The woman could cook. I think she creamed everything. I take that back. The green beans were cooked in bacon grease and the broccoli wasn’t creamed either. Before my plate was cleared, I always heard, “Ali, want some pie?” No matter how many people there were, there was always room around the table.
Beautifully sewn and embroidered, this apron made its way to my kitchen from hers.
I went for noodle lessons one Saturday. I forgot to mention how good her noodles were. They were amazing, and I was even able to make them at home before I got sick.
Growing up, my brother and I alternated on the sugar cereal. I don’t remember what his favorite was, but mine was, and always will be, Lucky Charms. There also was a steady stream of Cheetos and Doritos glutting from her cabinets. And crème wafers. Yummy. Also really unhealthy, but she lived until she was 94. Go figure. When she was still physically able, she mowed her own lawn, tended her own vegetable garden and drove into town in her big, old, green truck.
It was at Granny’s that I learned that the amount of shine on one’s wrapping paper isn’t directly correlated with how much one is loved. Although it is a nice bonus... But I am better adjusted as a granddaughter of Beulah Olive.

Sunday, January 31, 2016

Too wealthy or...

You have probably heard a saying something to the effect of it isn’t possible to be too wealthy or too thin. I disagree. I don’t have a clue what it means to be even slightly rich. I do, however, know what it is like to be too skinny.
I am basically a stick figure right now. Guess who weighs substantially less than she did in high school. This girl (for those of you who need a bit of assistance). It might be a dream come true for some, but not me. I wanted to make it easier to push me around in my wheelchair. But oopsie daisy. I let it get out of hand.
I am now a living, breathing skeleton. Partially because I can’t cheat. Cheese was my weakness. Who am I kidding? Everything was my weakness. Being restricted to a feeding tube for my sustenance doesn’t help. Furthermore, getting sick all the time doesn’t help.
New topic: I have a bit more hope in the way of therapy than I did before, so that is good. More details forthcoming.

Sunday, January 24, 2016

I am alive

Yes, I am still alive (if anyone was concerned as to my welfare). Truth be told, I have been battling illnesses. I am better, but still weak. Also, coughing and blogging are not recommended.

I just recently learned that I am never going to qualify for more therapy under our current insurance. Ever. I guess it isn’t important for me to talk, eat, move my arms or hands or walk. Any ideas?