Sunday, December 28, 2014

Plans

I went to a middle school band and choir concert recently. Of course, I was thinking about when I had concerts of my own. I was in choir as well as band. Although I never really liked band very much—I played French horn—but I played because my parents thought it would make me look well-rounded. On college applications.
Those who know my story know I went to a small state school. I left with my degree and beloved husband. It doesn’t seem like anyone’s plan, but it has worked out so far. I still wouldn’t change a thing. Except for all of this blasted corn… 
Also, happy New Year to you and yours.

Saturday, December 13, 2014

TPA

The switch Alison uses to type. The top one is for her thumb, the lower one is for her pinky. One letter at a time. A bit difficult to keep in position when coughing a lot. - Chris
 Guess who finally got her TPA? OK, it was not for the reason it would usually be used. Some of you might be wondering what is TPA? For the non-strokies and such, it’s the clot-busting drug. It is also used to treat heart attacks. It can also be used to treat pneumonia complicated by empyema with loculated fluid. Some of you already know what that is because you’re smart. I must admit that I didn’t know before. And the people who don’t know, you can Google it. Anyway, I was sick and it has taken all this time for me to feel well enough to blog. No, I’m not completely better. I still cough a lot, making it really difficult to use my switch. Anyway, if you ever have a stroke, you want TPA. And fast.

Wednesday, November 26, 2014

Nose

I’ve never liked my nose. Especially since fifth grade. In fifth grade, two boys were determined to make me hate my trunk. Yes, of course I remember their names, but I can’t give them the satisfaction of mentioning them on my blog. The worldwide accolades… Not really. They did go through a phase during which they called me “Long Nose”. They also told me not to look at them, lest my schnoz poke them in the eyes. That was a tough year for little me. My family moved, and I wound up with a haircut reminiscent of a mushroom. I remember specifically requesting chin-length. As I was traipsing around southern Missouri with a fungus-like haircut, I wore an empire-waist top. One day on the playground, I was asked if I was pregnant. Bullying is for real. I guess what I’m trying to say is fifth grade was hard.
For the year or so after my stroke, I avoided cameras almost entirely. Almost. I couldn’t even put on my own makeup. I still can’t. But have you noticed my nearly yearlong absence from the Internet? It was not an accident. But it is not my job to look cute and adventuresome. It is, however, my job to get better. And the parents of my nephews know about the “you break it, you buy it” nose clause.

Wednesday, November 19, 2014

Empyema

This is Chris. I just wanted to let all of you know that Alison's been in the hospital for the last two and a half weeks. She had something called an empyema. It's kind of like pneumonia, but on the outside of the lung instead of inside. There was fluid in the pleural space between the lung and the chest cavity wall. That fluid eventually loculated, or became less fluid - kinda like a honeycomb gel. This mass, if you will, caused pressure on her right lung and caused it to collapse partially. The empyema was also infected, and since it was in the pleural space and non-liquid, it was difficult for antibiotics to penetrate. They ended up having to put two chest tubes in to break up the mass and drain it out. It was an extremely slow process, but the other option was a throracotomy - which is an extremely invasive and painful surgery - same one used in open heart surgeries. And given her limited mobility, it would have been extremely difficult for her to recover from. So we opted against that and went with the chest tubes instead. Fortunately, that was the right decision, and the chest tubes worked extremely well. As of yesterday, the painful chest tubes were removed (after two weeks) and she was instantly much more comfortable. And this morning, they gave us the green light to come home today! We weren't expecting it to happen quite this quickly, but we're sure glad it did! So this afternoon we'll get her back home and blogging again! Thanks for all of your continued support!

Thursday, October 16, 2014

Ode to Kelsey

I told her not to get pregnant. Some of you might wonder what business it is of mine, and I will tell you that I was concerned because she was between insurance policies. I really meant “not now”. Also, I was speaking as a friend. Not as a boss. Lines become very blurred when someone is almost always doing the things I used to do. Like laundry. I would gladly do some laundry if it meant I could move again. 

She says we wouldn’t have been friends under different circumstances. I contend that we wouldn’t have ever met. She has been early almost every single day and hasn’t ever called in during the last year and a half she’s been working for us. And she has been working. Hard. 

I met her at the nursing home where I lived and she worked. She worked ridiculous hours and was willing to share her story with me. She was in a car wreck. A very bad one, at that, years ago. She needed metal in an ankle. Doctors later discovered a bone infection. Most notably, her aorta had been severed. She has been more than a caregiver. She has become a friend. Best wishes to her and her family as she embarks on some new adventures. She has been an inspiration to me. And she’s stubborn...

We're having a really hard time finding her replacement. If anyone has any ideas, let me know. Her last day is Tuesday. 

Also, an entire team of dieticians would like me to continue eating only liquefied corn. Their main concerns were sanitation and the fact it would be additional work for caregivers. Have they met Chris? Have they met me? Negatory. Have they seen my kitchen? Nope. If anyone has any ideas, let me know.

Friday, October 3, 2014

My Dog Hates Me

My dog hates me. OK, maybe she doesn’t actively hate me. Probably more passive-aggressively tolerant. Probably just passive. No growling or barring teeth. It’s just that I can’t feed her or take her outside or pet her or talk to her. Basically, anything I did before my stroke. I lived with her, then I didn’t. Confusing, I know. I have come to understand that dogs can be uncomfortable a lot like people. Chris also reminded me that Piper hasn’t ever been very affectionate. True. But if I smelled more like beef or cheese… 

Speaking of food, I have primarily “eaten” corn for more than two years now. The formula that gets poured down my feeding tube four times per day is corn. I don’t have a problem with a little corn, but four times per day? For years? I think it’s a bad idea. 

The alternative? A lot of blending. A lot. All under the supervision of my doctor and a dietician. There will be bloodwork. I want it to work. I really want it work. It can’t not work. Double negative? Pish posh. It is my blog, after all. And surely we can’t mess up the food thing.

Saturday, September 27, 2014

Collapsing Kids

Kids keep collapsing, and it’s making me mad. Children are trusting us to make sure they are OK. We are the adults here.

I’m not advocating for unnecessary testing like in The New Yorker article “The Cost Conundrum”. A good read whether you’re in healthcare or not.

My maternal grandmother died of congestive heart failure in her 50s. My paternal grandfather died of a heart attack in his 50s. I never met either of them. 

Bottom line: Medicine failed me. It failed me and has failed others. 

When I think about how a simple ECG or EKG could have helped me avoid this makes me furious. I know I don’t have the answers, but I am still allowed to be upset. 

Those who knew me around school age probably know there wasn’t an athletic bone in my body. What many might not realize or remember is that I went to volleyball camp the summer before my freshman year of high school. I had a sports physical then. 

My parents were both protective and proactive. I don’t blame them. It’s just that it would’ve been nice to know there were three holes in my heart. A simple ultrasound would have alerted someone to the fact that further testing could’ve been beneficial. “Zut alors! Your heart looks like Swiss cheese. Maybe you should have some further testing, especially given your family history,” a savvy doctor might have once said.

I know the research says about one in 300,000 student-athletes actually has a problem. That’s too many. It’s just too many.

Wednesday, September 24, 2014

No Landmarks

I can’t say I passed any major milestones since my last blog. I did, however, go see a band on Chris’ bucket list (Weezer). I also wanted to see that band, and another (The 1975). The venue was nice and accessible (Sporting Park). There I go sounding all old again, but the truth is that I am in a wheelchair, and I can’t walk or talk. I am also fighting an “old person’s problem”. Only it’s not. Please see NOPW or Dr. Oz from Friday, Sept. 12. Or click here.

I also stopped by IKEA. Yes, IKEA. Very close to where I reside, consequently. I went to IKEA before it opened to the public. Thanks to my very talented brother and sister-in-law with Anecdotally Yours. They documented the grand opening festivities and got us an early pass. It was perfect. I consider myself a superfan, but not a camping-out-enthusiast. I don’t do crowds and sleep-deprivation. I will stay away now. At least for a while. Also, I am not a morning person, for those who might suggest a.m. visits. It’s like it has gotten worse with age.

Sunday, September 7, 2014

Landmarks

It was a week of landmarks. First of all, my little brother’s 30th birthday was last Sunday. He had a hilarious party at a roller skating rink. How very early 90s of him. I wasn’t around then, but I am just guessing based upon movies or something. Just kidding. He is my baby brother, after all. I wouldn’t be female if I never mislead anyone about my age.
Chris and I celebrated our 10th anniversary on the 28th. Initially, we had planned a trip to a really nice restaurant in Chicago, but my stroke happened. Instead, we went to the Kansas City Zoo. Chris took the day off and whisked me away to the zoo. We hadn’t yet seen the penguins. At 10 a.m., the penguins had their feeding. They also had a painting for us. One of the penguins stepped in hot pink paint and walked onto a black canvas. Their handler held it up, then brought our painting out to us. Next, we met a young woman whose husband also had a stroke, but was given TPA, or the clot-busting drug. Then, we went around the zoo via train, tram and boat. While on the tram, I heard a young girl asking her mother what happened to me. I had Chris explain. During the weekend, I overheard three children wondering aloud what happened to me. They will rule the world (and maybe find a cure) someday.
The penguins at the zoo painted us a picture for our anniversary.
Second, Chris took me for Botox. It probably sounds weird, but isn’t. I have been getting the shots ever since I came back to the Kansas City area. It works very well for me. I thought I was going about two weeks later, so it made a big difference to me.
Now I will talk about Chris. I can’t go to a hospital or rehabilitation facility without hearing that he is remarkable. I know. I know, and am thankful. Anytime I say anything about it he says, “what kind of person leaves?” Good question. But the sad truth is that many people would have been long gone. Chris says I would have done the same thing. He is still my best friend and my heart still skips a beat when he is near. I could go on and on, but I will spare you for now. 
The night after our anniversary, three of my friends came over. These particular friends are rare. I met them when I was in eighth grade. They were all bridesmaids in our wedding, and have seen me at my worst. I won’t say best because I haven’t even seen it. When I told my caregiver we were going to see the Goo Goo Dolls, she asked who and I felt old. I also felt advanced in age when the lead singer mentioned that the song we were about to hear was 20 years old. 
But now back to Chris. I know I said I was finished, but I lied. I would rather be Mrs. Wilson who also had a stroke than not be Mrs. Wilson at all. I also have a lot of empathy for him. And there are many more landmarks to come.

Monday, August 25, 2014

ALS Ice Bucket Challenge



I was going to do it anyway. I was going to have Chris pour a bucket of ice-cold water onto my head. Then I was going to go to the ALS website and donate. But Chris had a better idea. He started trying to find someone to challenge me. Who would it be? I told my caregiver, who was kind enough to call her father. We’ve never actually met, but I owe him my gratitude(?) 

I don’t have ALS or know anyone who has or had the disease, but my symptoms are similar to some. I even use the same software as a certain famous scientist, although I am sure in very different ways. For those who didn’t get it yet, his last name rhymes with gawking. For those who still don’t get it, I am afraid I can’t help you. Ever. Back to ALS, it is a degenerative disease and my stroke was not. We owe these people a cure.

In the end, Chris and I were both challenged by friend(?) and fellow stroke survivor Amy. We found out by asking if she had a bucket. She did have a bucket, and a challenge. She asked why we wanted the vessel, and told us she did the challenge and that her silly husband was editing their video which took about four days. Note to Jonny: Most normal people just post theirs. Also, a note to speech therapists: I am OK. Good work, Tawna. Now everyone else knows what to do.

Saturday, August 9, 2014

Family Vacation

A lot of people don’t like their mothers-in-law. I know I am stating the obvious, but I, however, happen to like mine. I also really like my stepmother. Go figure. It was a major milestone birthday for my mother-in-law, who shall be henceforth referred to as MIL. We met Chris’ very kind aunt and uncle at a condo on Lake of the Ozarks. It was supposed to be a surprise trip, but it wasn’t. I’m not saying who told, except it wasn’t me. I can’t talk, so I didn’t spill the beans. The condo was very nice. I especially enjoyed looking at the lake through the sliding glass doors. It was a lot like our trip to Branson, only I could walk back then. I assure you it is different. I also assure you that you can laugh if you want. We went on a boat and I was glad there were rails. I started this very blog on the screened-in deck at the condo.Screens are extremely important for people unable to swat the bugs away. Who knew?


I also went to see Justin Timberlake earlier in the week. It was a great concert, for those who are wondering.



Long story short, whereas we might have gone to Puerto Rico before I got sick, we now stay a lot closer to home. According to MIL, it wasn’t about the destination, but the company. Happy early birthday, MIL. 

Friday, July 25, 2014

Keepin' it real

I have been accused of being too sad in my blog. It has not intended to be depressing, but to be a realistic representation of what it can be like for one to recover from a brain stem stroke. That said, I’d like to tell about my weekend away. We were last in Liberal in February of 2012, and I had a stroke in March. You draw your own conclusion, but I will say it’s not my favorite locale. I will say many nice people do or did live there. Anyway, my longest road trip post-stroke has been to Liberal, Kansas, when I went to my brother-in-law’s wedding. All I wanted was to be invisible, so to speak. I did it, thanks to the fact that I could only see Chris’ head, my caregiver and pharmaceuticals. Prescription, of course. Congrats to my brother-in-law and his new wife. For those who are wondering, (Warning: It gets sad here.) I did grow uncomfortable about halfway through the ride home. I needed my legs to be stretched, much like anyone else’s. I would guess it means more road trips for me, but not less sad for my blog. I’m just keepin’ it real.

Wednesday, July 16, 2014

Hospitalized Again


I was hospitalized again. Yes, again. I will spare you the gory details, but my white blood cell count was back up to 25 and my heart rate reached 188. We need to talk to my cardiac surgeon. I narrowly avoided being administered Adenosine to reset my heart rate. I was told everything from it would feel as if I missed a step to sensing I was being hit by a semi. Both for 30 to 45 seconds. Doesn’t sound like much fun, does it? I should have asked if the latter involved me being in a car. It would’ve made sense. I was sick, though, and not exactly on my game. My heart rate went down on its own, thankfully. I say all this to tell you my stay wasn’t too bad. With the exception of my visit to the ICU. I’m pretty sure I went there because of my stupid heart rate, but spent an afternoon there nonetheless. After being stripped of my caregiver, among other things, I was repeatedly called “Alice.” That transgression is typically laughable, but not that day. I had been awake most of the night before. I think this was the worst treatment of the visit, especially when I had four nurses standing over me and talking about me as if I were unresponsive. I started this entry to mention that I forgot to acknowledge the 10th year since my mother’s passing. I am not sure whether I’m mad at myself for not remembering or simply sad. I was inconsolable. My mother would have said not to worry. Anyway, I went home the next day. And she was right. I shouldn’t worry. Ever.

Monday, June 30, 2014

Brain Bleed

They thought I was having a brain bleed. I mean hospital staff. Actually, I was just taking a nap. There are times when trying to wake me up is an exercise in futility. I don’t know why. Stroke side effect? Med side effect? Chris tried to explain my bizarre behavior over the phone, but no luck. I was awakened by a needle in my left arm hitting a nerve. Good news, Chris. I finally found a way for you to awaken me…never mind. My arms were being outstretched as if I were a bird getting its wingspan measured. The man on my right ran and chased down the doctor—one of the nice ones, by the way. I narrowly avoided getting a scan of my head. I have been in the hospital far too often. I know this because staff are starting to recognize me. Long story short, don’t fall asleep in the hospital. The phlebotomists came in around 5 a.m. When I was living in the nursing home, they called them “vampires." I am a very difficult stick, meaning my veins are tiny. I got to go home that day, no thanks to me. I fell asleep again. Medical professionals want you to sleep unless you are in the hospital. Too deeply, anyway.

Sunday, June 22, 2014

Normal

(Note from Chris: Alison started this Sunday, June 15. She was in the hospital from June 13–17.)

I just want to be normal. I am writing today from the hospital, where I have been since Friday. I was supposed to have Botox, but went to the emergency department instead. My white blood cell count was a bit high, so poisoning myself that day was probably not the best idea. Monday afternoon was supposed to be my first-ever acupuncture appointment. I obviously saw enough needles to last me a week during my extended weekend away. Ha. Back to being normal. You would think physicians would be nice, but not exactly. I already feel extra anxious because I can’t talk and don’t need help feeling stupid. Yes, my magnesium and potassium were a bit low, which I’m guessing could’ve been because my food was withheld for three days…but I don’t know…I was not given the opportunity to ask the doctor. Best quote of my weekend: “I didn’t know hospitals were in the business of starving people to death.” That little gem can be attributed to Chris Wilson. The nurses and aides all did great—it’s just that I fell through some doctor-shaped cracks. I have intentionally not said which hospital. Those of you who know…know. I feel like if I could talk again, or could be normal, things would be different. I also think people in healthcare would be acutely aware of special needs situations, but alas.

Wednesday, June 11, 2014

Tongue

I had my first counseling session this week. My first session ever. Yes, ever. It is really tricky getting my point across by, you know, not talking. I applaud my therapist wholeheartedly because she actually tried—and succeeded in—communicating with me. I am not satisfied with my current mode of communication. More often than not, I am trying to stick out my tongue. Not at anyone in particular. But after the stroke, I haven’t been able to stick out my tongue. The inability to lick my lips has necessitated more lip gloss. I’m so close, too. The last time I learned to stick out my tongue or talk, I didn’t have an overbite or brain damage. I will beat this thing. With or without my permission.

Friday, June 6, 2014

Gussied Up

I have thought for a long time that we women are always getting gussied up for each other. Maybe I think this because I’ve been married to the incomparable Chris Wilson for nearly 10 years. Or it may be because of unrealistic expectations. Especially after seeing Diane  Sawyer’s report on it. There was actually a study proving that less is more when it comes to makeup. Don’t get me wrong–I like Sephora a lot. A lot lot. I could continue, but I won’t. Yes, I was the one at the gym with all of my makeup on. Very light-handed. I’ve been wearing makeup since I was 14. You’d think I could give myself a pass, but I can’t. I have tried. You would think I could perhaps give myself a break here, but I cannot. Recently, I went dress shopping for my brother-in-law’s wedding. I’m still picky about what I wear. Maybe a little, but definitely not a lot although I don’t miss fitting rooms. There’s also the fact that I’m always in a wheelchair, for Pete’s sake. Who’s Pete? I have no idea, but I’m guessing Google does. I suppose it is just that I am way too hard on myself. And Cayte, no. The holes in my heart went undetected my whole life. They were ASDs and a PFO.

Monday, June 2, 2014

Wednesday, May 28, 2014

Miscellany

First of all, I will tell all of you who guessed correctly on my last post, congrats. You win...my admiration. It is The Secret Garden. For those who haven’t read the book, I have a very abridged version, as I am sure your library does. Or watch the movie. Not the one from the 70s. It just doesn’t follow the book.
I finally got my hair cut. Finally. Saturday, at the NOPW wrap party. I don’t do long hair. I also don’t like to complain, so let’s just say that’s the only donation I can ever make. In other news, there is new movement in my right hand. Yes, after 18 months. I also owe some answers to some people.
 “What is the most frustrating thing when having a conversation with others that you wish they didn’t do?” – Katherine Loffing
It is annoying when people who know how to communicate with me don’t. 
“If marrying a Wilson was the second best thing you’ve ever done, what was the first?” – Liv Schmidt and Anonymous The best decision I have made has been to trust that something good will come of this craziness.
“Have you looked into acupuncture? – Paula Schmitz
We are actually exploring the idea now.
“Do you remember all the fun shenanigans we had when we worked together? – Julie Miller
I remember everything.
“Do you make Kelsey give you foot rubs? What’s it like having my wife work for you?” – Derek Jamison
You and I both know, for entirely different reasons, how she detests feet. What do you think? Exactly.

Tuesday, May 20, 2014

Week Off

I am technically taking this week off because of NOPW. But since I love all of you so much, I couldn’t. Who can guess which novel inspired the d├ęcor in my bedroom? No, Aunt Sally, you can’t play. I just now told Chris, because he will help by taking photos. Stay tuned for the answer next week. 


Wednesday, May 14, 2014

NOPW

I can't identify with people like I used to. I just can't. I don't feel like I fit in with the non-injured as a whole, however hard they may try. I also cannot relate to people who are permanently disabled because I'm not. The closest I've come to a sense of belonging has been through NOPW. My dear friend Amy had a stroke at only 24. When she was able to eat again, she wanted an orange Popsicle®. And yes, the word Popsicle® is registered. And owned by Unilever. So we are NOPW, which stands for National Orange use your imagination Week. I'm the Nazi who kept saying no to the use of the word Popsicle®. By “saying no” I mean shaking my head vigorously while breaking out in hives. There will be a variety of events throughout the week of May 18–24 including the dying of the J.C. Nichols fountain orange, because no one has registered the fruit or the color...yet. Some joking aside, the main event will be Saturday, May 24. Want more details? Check NOPW's Facebook page and like it. Go to NOPW.org and buy a shirt or two, all while considering the fact that I had a little something to do with the design. Also while on the site, you should buy lots of raffle tickets. I'm serious. Make it rain tickets somewhere. This year, the funds we raise will go to the Falling Forward Foundation. And hi, Barb. Thanks for going to the party.

Thursday, May 8, 2014

Answers - Part 2

*Note from Alison, via Chris: There are two more questions that she will get to as soon as she can.

What would you want us to know so we could help those with disabilities who cannot advocate for themselves? - Ed & Consi
I would say to treat us just like normal people all while making sure we have what we need. I shouldn't say “us” or “we” when referring to certain groups because I didn't ask anyone else. And yes, I know it is difficult.

What do you remember about the early days right after the stroke? When did you first understand that it was a stroke? What do you think others who suffer a stroke would want friends and family to say and do when visiting the stroke survivor? - Aunt Sally

I had a lot of extremely vivid dreams, so I can't begin to discern what was real and what wasn't. I kind of hope you can help. I sort of had a dream/memory in which my two maternal aunts visited me in St. Luke's with flowers from my house in Brookside. I also had a dream in which my attic was fixed up as another bedroom and I was physically ready to work within two weeks of the stroke. Speaking of which, I don't remember thinking it was anything else. And your response was pitch-perfect. Yes, pun intended. My sweet aunt has a doctorate in music education. Is it Aunt Dr. or Dr. Aunt?

What parts of your days bring you most joy now? How has your view of God/relationship with him changed (if at all)? - Allison Wollenhaupt

Anything that breaks up my days, like when a friend stops by or sends a letter/card/bouquet...or an email. As for God, He is so much bigger than I can comprehend, brain-damaged or not.

I have two questions: 1) what is the most surprising thing about stroke recovery (surprising good or surprising bad) and 2) would you ever consider writing a book? - Erica Short

I have been shocked by how much time has elapsed. Entire people have been made and in terms of development, surpassed me in some ways. And yes.

Since I am a foodie...did having the stroke change the way any of your favorite foods taste? - Dee Foreman
No, and it is both a blessing and a curse.


What surprising things have you learned about yourself since the stroke, good or bad? How has your stroke affected your relationship with God? How has your stroke affected your relationship with Chris? - Jenny

I have gotten to be a lot more patient with others and myself and with God. If anyone out there has access to mind-reading equipment, I'd like to borrow it. I can't do anything and have had to relinquish control. Chris says I am not a burden, but I'm not so sure.

How has the stroke affected your marriage and relationships with other relatives and friends? - Crystal Lewis

Why does it feel like I just answered this question? Just kidding. Completely. I can't cook or eat or eat out. This, in and of itself, has completely altered my social life. It's funny how others treat me. Some are comfortable with me, 100 percent. Others are half-and-half, while other people are uncomfortable as can be. What I have learned is it isn't about who loves me most. It's about who is simply at ease.

Wednesday, April 30, 2014

Answers - Part 1

If you could only have one body/motor function back to 100% what would it be and why? How do you keep from being angry? - Chelsea
I would talk and those who knew me pre-stroke know I wouldn't stop. And I don't keep from being mad. I choose not to show my anger.

What is your favorite color? What shows are you watching right now? Any good books I have to get and read? - Michelle Julian
Why hot pink, of course. Right now, I'm watching Ellen, but I watch a lot of HGTV. My DVR is set to record Revenge, Mad Men, Downton Abbey, Parks and Rec, The Blacklist, Brooklyn Nine-Nine, New Girl, Chicago PD and Hart of Dixie. We also really like Top Chef when it's on.


Do you remember the physical therapist man-handling you when you were in the hospital for pneumonia? Did you wonder if I was ever going to do something about it? - Sheila (MIL)
Thankfully, I don't. I do remember coughing in the face of the speech therapist who was feeding me chocolate pudding. What? I had pneumonia.

What's it like to be married to a Wilson? Where in the world would you like to visit? What hobby do you still enjoy, outside of writing? - Claire
Marrying a Wilson was the second best decision I have ever made. I did go to Poland, landing in Krakow and riding a bus to Warsaw. I was headed to Belarus. A sidenote, I have often said I would go back, especially to Krakow, because it was relatively untouched during World War II. The next year when I visited Belarus, there was a short stop in the Prague airport. I really want to go back. To Prague, not the airport. And I don't really don't have new hobbies, though people close to me seem to. For example, cooking and sewing and reading.


What is your biggest focus on in therapy right now? What are your goals by the end of the summer? I think I saw where you and Chris have been going to some movies? What is a favorite that you have? Do you think  that you will ever go and speak to people about what happened to you....like a tour? - Anonymous

My goal is always complete recovery. Far-fetched, maybe. Impossible, no. As for movies, I really liked Despicable Me 2. Before my stroke, I favored children's films, if clever. I also like The Great Gatsby and Silver Linings Playbook. Assuming people would listen, I would consider.

When you were having your stroke what did you feel? Have you ever had an out-of-body experience throughout any of this? - Julie Miller
I was nauseous and extra tired the day before, though I don't think I was awake during the stroke. No out-of-body experiences here. I do, however, believe they can make for lucrative books and movies.


What is your favorite thing at this point? New equipment, trips out, soft awesome sheets? - Patty Maples

My absolute favorite thing hasn't changed. I love it when Chris sits beside me and tells me he loves me.

What are your newest dreams and plans? Do you miss being at PSU? - Mayra
I don't want a whole lot, except I hope to be a singer with my all-new voice. Not really. I brought my favorite part from Pitt State with me. In all seriousness, I miss learning. I was a step away from applying to grad school before my stroke.
Who is your favorite therapist? Also, have you become a soccer fan yet? - Robin
My favorite therapist will be she who first gets results. About soccer, I would like to plead the fifth.

Monday, April 21, 2014

Blog 10

Help. I need your help. If I don't get it, next week's blog will be awful. Very bad. Send in your questions and I will answer them. It's that simple. OK, within reason. I will answer questions about what it's like to become handicapped for no apparent reason and by that I mean I wasn't skydiving. Anyway, I'm going to tell you not to park in handicapped parking spots unless you have a serious medical condition and your doctor has signed a form attesting to that fact. Don't. Just don't.

Monday, April 14, 2014

Blog 9

This is not at all timely, except I ride past it all the time. I really like IKEA. I really do. I like the merchandise and the Swedish meatballs. Our location doesn't open until this fall. Now I have something to look forward to besides my allergies. There's the part where IKEA is Swedish, but that doesn't bother me at all. I am somewhat obsessed with Sweden. No, I'm not Swedish, but British with a bit of Dutch and Native American. “Where,” you are probably wondering, “is her melanin?” I have wanted to know that my whole life. H&M is Swedish, too. So are Volvos. I want a Volvo convertible. I don't know why, but I really do. I want to wait until I'm better, of course. Once IKEA opens, I plan to be there a lot. Lucky for me, my caregiver shares my penchant for shopping there. My husband keeps saying, “Oh no,” every time he passes by. He likes it, too, so don't let him fool you. Stockholm is only the most expensive city in the world yet IKEA is inexpensive. In general, I have expensive taste. I, however, do like IKEA. And for the record I have tried to reign in my taste and failed. It's innate. And I didn't win the HGTV Dream Home... again. Almost every year, except when I am having a stroke or something. At least I can always go to IKEA.

Tuesday, April 8, 2014

Blog 8

Feeding the swimming pigs near Staniel Cay, Bahamas.
Before I get into the actual content of this entry, I am going to rant. I am currently exiled from therapy. I am not in any way upset with my therapists, simply the system. I don't think this is what the founding fathers had in mind. For insurance to cover my therapy visits, I have to be making progress. You would think just saying “she can't walk or talk or move her arms and we're here to help” would be enough, but nooooo. Last year, my speech therapy visits ran out before the days in the year. Thank goodness for the Falling Forward Foundation, a local non-profit covering therapy when insurance doesn't. I actually received three visits from the benefactor. I also have a great caregiver who cares genuinely about my home therapy program. An aside before moving on, therapy is hard.
This blog is about travel. I absolutely adore it. Our honeymoon was in Eureka Springs, Ark. We spent eight years trying to make up for it. We drove to Galveston en route to Houston. Our one and only camping trip, when we slept in a tent right by the beach. We went to Vieques, Puerto Rico, where we stayed at Martineau Bay, now a W. While in Vieques, I had the most surreal experience of all my life thus far. It 's almost indescribable, but here goes. A bioluminescent bay where the water literally glows like turquoise neon when disturbed. Literally. There was the time we went to Vegas and rented a red Mustang convertible. Next, we visited the Bahamas. On this trip, with a destination of Staniel Cay, I had the best time yet. The boat probably had something to do with it. Protocol seems to be: ask if anyone in the party has ever driven a boat before handing over the key and a map... Of the ocean. While exploring, we found a gorgeous sandbar and an island with swimming pigs. We went to New York City and the airline lost our luggage until one hour before our dinner reservation just before the Broadway show we decided to see. Oopsies. We visited Chicago a few times and fell in love. I often said said that I would live in Chicago in the summer and somewhere warm in winter. So far, no one has offered to bankroll my proposition. Humph. We stopped in LA when I was there for work. We traveled to Florida to swim with manatees, but they decided not to show up. I still haven't been to Paris. We have talked about Bora Bora and the rest of the west coast. I guess I'm saying I'm not done yet.

Monday, March 31, 2014

Blog 7

Alison at bluestem in February 2012, three weeks before her stroke.
First of all, I would be remiss if I moved forward without thanking each one of you who liked or commented on or shared my blog last time. Seriously, thanks. I laugh-cried when my husband read them to me. Don't worry, it happens a lot. 
I mentioned the fact that I can't eat. Really, I am unable to swallow anything substantial. When my mother was sick, I swore off rotisserie chicken and Stouffer's lasagna forever. Or chicken and rice casserole. Don't get me wrong, it was amazing not having to worry about meals. I simply chose not to eat them again. Only now, I would totally eat them again because it would mean I could eat again. I would dive into a serving of moo goo from Yen Ching, near Springfield, Mo. Yes, I could get moo goo in KC, but it wouldn't be the same. It just wouldn't. I want steamed rice and crab rangoon. The crab rangoon at Yen Ching is peppery, not sweet. I'd eat fettuccine Alfredo and coconut shrimp. I think I just gained seven pounds. Twizzlers and those peach things and Good and Plenty and Jelly Bellies, along with about every candy bar known to man, sound tasty.
A fan of fine dining, my 10th anniversary was supposed to be celebrated at Alinea in Chicago. My anniversary is this August. A bit ambitious at this point, n'est-ce pas? I regret never having tried Julian when we lived in Brookside. We did make it to bluestem, The American and Justus Drugstore. Oh, and Michael Smith. In no particular order, of course. Thanks, Groupon and KC Restaurant Week.
Creme wafers and Lucky Charms sound good. I will have rainbow sprinkles on my White Chocolate Mousse from TCBY. I know I remember my Mall Deli order verbatim, and there's a reason. Oh, and I might as well go to Cafe del Rio and Chicken Mary's. Before people get all judgy about my hypothetical food choices, please know I will use moderation. I am a pretty good cook, despite my horrible knife skills. Really, I am surprised that I still have all parts of all of my fingers. And I don't weigh a ton. It turns out that not eating anything at all is the best diet ever.

Monday, March 24, 2014

Blog 6

Eighteen months. That's how long I was supposed to be sick. I remember a deep conversation I had with my husband. Most of the research says a stroke victim my age should take 18 months to recover. It was raining and I was still in Nebraska. By the time 18 months came along, I was already home and really upset when the fake milestone passed. We decided the studies didn't apply because those studied ran out of resources or gave up. What we didn't take into consideration was the severity of my stroke or that I'm me. My stroke was b-a-d, and I haven't met anyone with such bad effects as mine. I've heard of a young lady in California fighting a battle similar and a young man in Arkansas whose stroke was far worse than mine. Then there's the fact that I'm not taking this stroke thing lying down. I'm serious, even though I am typically in bed when I'm home. Every chance I get I am trying to get better. I guess you could say I'm a bit stubborn. Even people who have never heard my reclusive voice think I'm stubborn. It is funny how personality traits can be used for good or bad. But I digress... I intend to get better, eventually.

Wednesday, March 19, 2014

Blog 5

Once upon a time, in a land not so far away–Springfield, Mo.–I ran a free clinic. It wasn't something I ever foresaw, it just happened. I made so many great friends there. Oh, and it changed my life forever. When my mother found the lump in her breast, our family didn't have insurance. She waited to tell even my dad until we again were insured. There's a chance that she would still be with us had things been different. Fast forward a couple of years and we are living in my mother's beloved Kansas City. I don't like to dwell on the past, but I liked my job–at MetroCARE–liked my house–in Brookside–I was glad we moved. MetroCARE made so much sense. Volunteer doctors would see needy patients for free in their own offices. We closed on our home in August and I had my stroke in March. Our neighbors were so kind, though we were such short-timers. At the risk of becoming the family pariah, there are parts of “ObamaCare” that I like. For example, I rather like the part that made it illegal for insurance companies to deny coverage for pre-existing conditions. I likely wouldn't have given the bill a second thought had I not worked with those less fortunate. I am grateful for my non-profit jobs and the way they made me more compassionate.

Tuesday, March 11, 2014

Blog 4: Two Year Stroke Anniversary

Two years. Yes, it has been two whole years since my stroke. People have—accidentally, of course—tried to kill me. There was, very early on, the trach incident. I was told that someone responsible for my tracheostomy left the cap on the device. Oopsies. I guess that's a no-no if the patient is supposed to breathe. Then there was the time when the aide left a lemon swab in my mouth. I remember that situation very well. Gladly, I swallowed it whole instead of choking. Equally as debilitating, though not deadly, was the time my identity was stolen. An aide, who mysteriously didn't bother to call in or show up the next day. I heard she went in to pick up her check and left with it...and a lady's purse. It's funny now, though not then. I'm home now and nothing bad has happened. And I'm still here. I'm still here.

Tuesday, March 4, 2014

Blog 3

I hate the concept of sick kids. No, not the idea of children themselves, but the thought that it actually happens. I had a relatively nice childhood, but it is very irksome when not the case. For those who missed this, I was born with three holes in my heart. Not one or two, but three. Holes. In. My. Heart. OK, I will stop being a drama queen now. Why did the holes wait to manifest themselves until I was 31? I have no idea, but the fact that I was never very athletic makes a lot of sense. There are kids younger than 10 who have had strokes. I have been privileged enough to interact with teen-aged stroke survivors. They should be thinking about cars and sports and prom and such. Instead, they are thinking about speaking. It's not fair. I started this blog to say illness is stupid. It doesn't matter whether the victim is young or old. Being sick stinks. I lost my mother almost 10 years ago. Breast cancer, I had prepared for it, not a stroke. Even though I shopped for wigs with her (while she joked about looking like Farrah Fawcett) I have a soft spot for sick kids. Which is why I am donating my hair to Locks of Love. Also, thanks to Kelsey. You know why.

Tuesday, February 25, 2014

Blog 2

I used to be able to type about 100 words per minute with a zero percent error rate. I say that to let those who don't actually know me understand that I am something of a perfectionist, not arrogant. The contraption I now use to “type” is made from PVC pipes and some other items I can't recognize. It was artfully crafted by the kind souls at Be Extraordinary. I honestly can't say how many incarnations of this switch there have been. Early on, I could only move my left foot. Then movement returned to my left thumb. All this at less than a snail's pace, mind you. Next, my left pinky. I guess that it would be appropriate if I thank Dr. Susan Fager and Suzie Wiley. Back to the pinky. Once I had two options, all that was history. Now let's not discuss speed or errors.

Monday, February 17, 2014

Blog 1

(This is Alison's husband, Chris. Welcome to the new and improved Hope for Alison Blog! Going forward, you'll be hearing a lot more from Alison herself! I'll be here to help coordinate things, but the text from her is 100% her - I'm simply copying it from her word document and pasting it here for all of you fine folks. So enjoy!)

I have no reason to complain. My apartment is warm when it is cold outside, cool when it's hot. I have all the food I need. People I know­—and even folks I have never met—care what happens to me. But I want to complain. I can't walk. I can't talk. And were it just me and not for my super-optimist husband, I would cry a lot more. I am also unable to eat, and that's a problem. So if you'd like to follow along while I recover, you are welcome.