Truly a Minority

I am eager to do a new Accessible Warsaw post, I have many pictures on my phone waiting to be dumped onto the blog, but my phone got knocked into the (thankfully clean) toilet yesterday. I broke my rule of no phone in the bathroom. It was sitting on the sink, safely away from the toilet, but my awkward dance of getting off my power chair and onto the toilet included the "knock the phone into the toilet move" that I hope to never perform again.  The phone was insured and a new one is arriving today.

So instead of writing about the accessibility of my town, I am going to write about being a part of the largest minority in our country, the group of people with disabilities.  I'm new to the group and frankly, not thrilled to be a part of it. In all of the television shows I watch, I wonder how the storyline would be different if one of the main characters was confined to a power chair. Olivia Pope in Scandal? Gloria or Claire in Modern Family?  Khaleesi in Game of Thrones?  Even when I was able-bodied I didn't have a ton in common with these characters, but I did have the common experience of being able to walk.

Yesterday I was watching a show on Netflix called Happy Valley. I paused the first episode 20 minutes in and watched a small 30 second segment over and over.  A husband was talking to his wife as she sat on the edge of the bed in her pajamas. As he was chatting, he was taking off her socks. Without a pause in the conversation, he stood up, then bent over as she wrapped her arms around his neck, and he helped her put her legs into bed.  I, as the viewer, was never told why the wife needs assistance removing her socks and getting into bed. It is simply a part of their life, not explained at all in this first episode. Words fail me when I try to describe the feeling I had watching that.  It was surreal. Seeing characters on a television show acting out my reality. It was powerful and made me feel "normal".

I am an adult who lived a good 38 years with a fully able body. And I still was touched by seeing this on a television show. Imagine children with disabilities. How empowering would it be for them to see their reality portrayed as a normal part of life on television, in movies, and advertisements.  Our culture has a long way to go to include people with disabilities.

Accessible Warsaw: Recovery Lounge

Love me, love my book club. My book club has been with me throughout my whole journey into disability. We meet every month. They saw me when I could walk, when I began to limp, when I used a cane, and now when I am in my scooter. What's awesome is they treat me the same as they always have.  Sure, they help me physically in ways that I never needed previously, but I still get teased, I get listened to when I pull an intelligent thought together, if we're doing a gift exchange and I get the good gift, no one hesitates to steal it away and make me open the next, questionable gift.  We are six women who love to read and discuss books, but our friendship is much more than that, and I am so grateful.

Recovery Lounge is a new bar in Warsaw. It is where Bennigan's used to be, in the Wyndham Garden Hotel. We usually meet in each other's homes, but last week my book club decided to meet at Recovery Lounge so we could check it out.  (Get it? Like checking out a book? Okay. I'm sorry.)

The disabled parking spot was right by the front door. There was plenty of room for me to get on my scooter and get right to the door.

Nice and roomy.

There was no ramp or sidewalk, I like how the street led right to the door. The door had handles, but no button I could push to open the door on my own. My book club friends of course held the door open for me. They even held both, which makes me feel like royalty!

Thanks ladies!

Recovery Lounge is very pretty. The atmosphere is relaxing and inviting. I was glad to see that it is all one level, very easy for me to get around. There are three seating options. Tall chairs at the bar, clusters of barrel chairs, and couches. We chose a couch and I pulled up a barrel chair.

Classy place!

We ordered drinks, which were delicious, and also ordered a few things off of the menu from the adjoining Italian restaurant. We had a fun night, a great discussion, and enjoyed the sophisticated atmosphere. The only thing lacking accessibility wise, was a handicap button entrance, or an automatic door.

Book Club!

Of course, knowing these ladies, we can make anyplace accessible. They'll push, lift, shove, and pull me wherever I need to go!

Recovery lounge =**** (four out of five stars on my accessibility scale)

+ handicap parking spot right up front

+ no ramp or sidewalk needed, door is the same level as the street

+ entire bar is all one level

+ variety of seating options, not only tall bar chairs

- no button/automatic door

Thought pod: The Party

It's not expected. Stand up, my mind says. Mingle. Dance. My heart, my body, wants to do party things.

In the chair I remain. Observing. Witnessing. Judging. Yearning.

A few gather, conversation. Catching up, laughter.

Eventually I'm alone again. Nervous hands check my phone. Alone, in the kitchen corner. I search for a pair of familiar eyes, none to be found.

This isn't me! I want to scream. This isn't me! This. Isn't. Me.

But it is.

I'm ready to go.

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Two weeks ago I went to my cousin's birthday party in Texas.  It was a whirlwind trip, travel was delayed on every leg, we were in Texas for a total of 28 hours. I would do it again in a heartbeat. It was worth it, it was way too short, and there's not much I wouldn't do for my cousin Jennifer.

I realized that it was the first time in a long time that I was with such a large group of people that I don't know.  Of course there were people I do know very well there, family members, my husband, my brother, my aunt who also is in a wheelchair due to multiple sclerosis.  A few of my cousin's close friends who I have met on previous trips.  But my life has changed so much since I had last been in Texas.

I wrote the above poem, or what I'm calling a thought pod, on the flight home. I had to get those feelings out of my brain. It gives those feelings validation.  It's difficult being stuck in a chair when I want to dance. I want to say something flowery here. Something cerebral or witty to prove "I got this". But sometimes things just suck.

Most days they don't.

Accessible Warsaw: The Tiger Den

Warsaw High School's gym is affectionately called The Tiger Den. Each March I attend the Community Quiz Bowl in The Tiger Den. I don't go as a quiz team participant, I go to cheer on the best team on the floor, Book Club Husbands.

Four years ago, the first year I went to the Quiz Bowl, I walked in. The next two years I walked with a cane.  Last year I was out of town during the event. This year, of course, I went on my scooter. I was interested to see if the event would be accessible. In the past years, the spectators sat in bleachers on the upstairs level, having to climb stairs to get up there. I am sure there is an elevator somewhere in the high school, but I don't know of one specifically right there in The Tiger Den area.

Parking for The Tiger Den is around the back of the high school. Perhaps there are better handicap parking spaces in front of the school, but the pickings were slim around back. I was happy to see that near the handicap parking spot the street is level with the sidewalk.

I was alarmed, however, at how far away from the entrance the parking spot was.  It was a beautiful evening and the weather was nice, but I would hate to have had to make that long ride in snow or rain.

All of those cars are parked within a 15 second walk to the entrance!

When I got to the door to enter the building, there was no handicap button to push to easily open the door. The kind people with me opened the door, but it would be so nice if there was a button I could push so I could go in independently.

The spectating area has been moved, it is now on the floor level in the bleachers. That was nice and that meant that there was no elevator needed. I knew that we would be sitting in bleachers and I cannot get up into a bleacher, so I had my friend who was going early try to find a chair that I could sit in. She had put a reserved sign on a chair, so I was able to sit right next to the bleachers where all my friends were sitting.

I do pause and wonder what would happen if I went to a packed basketball game at The Tiger Den. Do they have an area for seating for people with disabilities? I really have no idea; I'm sure that if I called in advance it could be arranged. If I were to go to a basketball game however, I certainly wouldn't wonder if there were restrooms available for the crowd. That is just an expectation that is met. It would be wonderful if seating for people with disabilities was also a normal expectation that is met.

Quiz bowl 2016 was a fun evening.  Book Club Husbands did well, they are an intelligent group of guys, but no trophies were won this year. I will give my rating for The Tiger Den, but it is just the gymnasium part of the high school. To truly give a rating, I will need to visit the entire high school.

Warsaw High School: The Tiger Den =***(three out of five stars for accessibility)
+ handicap parking spot was the same level as the sidewalk
+ bleacher option on the main floor, not only on the upstairs level
+ chairs are available, not only bleacher seating
- handicap parking much too far away from the entrance
- no button/automatic door
- would that chair have been available had I not had a friend save it for me?

Spouse as caregiver... A relationship twist

Chris and I have been married for 20 years. I was 15 when we went on our first date. In August 1995 I turned 21, and two days later I got married. I don't remember our wedding vows word for word, but I know they were pretty traditional; I'm sure they included the "in sickness and in health" line.

When we got married, we were the picture of health. We were both fit, tan, intelligent, without a care in the world. Yet we made that promise to each other. To love, honor, and support each other even in sickness. But do we have to like each other?

There should be a clause in the marriage vow, an addendum maybe? Something that warns that a life-changing chronic illness can be included in the simple word "sickness". As young twenty-somethings, did Chris and I really stop and think what sickness could include? I'm pretty sure I was meaning a bad cold, possibly the flu.

I am positive I wasn't thinking multiple sclerosis. Definitely not a multiple sclerosis that would rob me of the use of my legs and slowly take away the use of my right arm and hand. A chronic illness that leaves me, someone who has been fiercely independent her whole life, physically and emotionally dependent in a way that is humbling and, quite frankly, annoying.

But that's me. This is my body, my illness, my issue. Except for that it's not. This is an illness that affects the whole family. I have become a burden.  I looked up synonyms for burden and found: problem, obligation, worry, pill, and dead weight.  I have become dead weight.  Ha.  That one made me laugh.

Fortunately I married a man who seems to enjoy dead weight. He doesn't enjoy being a caregiver for me. We have moved into these roles reluctantly. But he does seem to like me. He will do what needs to be done. It won't be as gently as some, it may be hurried and messy, but he will do what needs to be done. Why would you do that for a person unless you liked her?  Over and over, day in and day out. I can depend on him.  And the best part? The true secret to keeping a marriage intact? He keeps me laughing the entire time he's shoving me into a car,  plopping my legs into bed, lifting me up out of a chair.  He can't help it.  He's a silly goof ball and even when I want to strangle him... he makes me laugh.

A better wedding vow would be "to love you, to try to like you, and to always make you laugh".

Accessible Warsaw: Creighton's Crazy Egg Cafe

Creighton's Crazy Egg Cafe opened in Warsaw about six months ago.  I had heard rave reviews and was anxious to see for myself.  I was prepared for the coffee and food to be good, but....is it accessible?

I was happy to find "eggs"cellent (ugh... couldn't help myself) handicapped parking and a ramp right by the front door.  The ramp twirls around a silo; I love that it is part of the farm theme.  How cute!

So handy to have the ramp right by the parking spot! 

                                                                                 

Up the ramp I go! Functional and cute, a win!

When I arrived at the front doors, I was disappointed to see that there was no handicapped entry button. Once again I had a good friend with me and she opened the door of course, but I wish more restaurants and stores would put in these buttons to foster independence for all of us.

I got in the door and entered a cozy gathering space. We had plans to go for breakfast so we were heading to the tables, but this little nook would be a nice place to meet with friends and have coffee. There are no steps so it is completely accessible. I would be able to sit in my scooter or transfer out of it onto a comfortable chair.

Please join me for coffee!


With no wait, we went right to our table.  It is not always easy for me to transfer off of my scooter. There are times when the muscles in my legs tense up and are stick straight.  Luckily my friend Julie is not scared to get in there and bend my legs and help me as much as possible. There are times when it is easier than others, but there has never been a time when I haven't made it off my scooter to sit in a chair. Hopefully within the next six months I will be able to use my power chair and that part of the scenario will no longer be an issue. Once again, there were no steps at all inside the café so it was very easy for me to maneuver.

This picture didn't turn out that well, but it does show that they have low and high tables. I am not able to sit up in a tall chair, so I am glad there are options.

After a delicious breakfast, we headed to the restroom to see if it was as accessible as the rest of the café. I was very happy with what I found.

Wide and easy for a scooter to fit through!

A restroom can never have too many grab bars!

Creighton's Crazy Egg Café is a fun place to grab breakfast and coffee! I am positive I will be going back soon.

Creighton's Crazy Egg Café =**** (four out of five stars on my accessibility scale)
+ wonderful handicap parking
+ fun ramp that matches the theme and is useful
+ everything is on one level, easy to get around in a scooter
+ accessible bathrooms
- no button/automatic door

View from the Pool Deck

Being a swim mom is one of my favorite roles.  Swim practice, meets, suits, caps, goggles, towels, and, most importantly, the swimmers.  I love watching GJ swim, and hope B will soon join the fun.  I will conserve energy all week to be able to get to the meets on the weekends!  Getting there takes a lot of work, GJ helps me into and out of the car.  She then helps me get set up in the spectator area before she heads down for warm ups.  Lately it has become even more difficult for me to get around and I'm eternally grateful to my mom, Chris, Kristle, Tim, and Janet for their help at swim meets this year!

Some pools have designated handicapped seating, which is the best.  I set up my chair and that's where GJ knows to find me for the rest of the meet!  Older pools often times don't have elevators.  No elevator means I have to sit on the deck.  That may sound fun, but it's not ideal.  I'm separated from other parents.  I may be surrounded by swimmers from another team.  It's usually the worst view in the house.  Swimming is a sport best observed from an elevation so all the lanes can be seen and the entire scoreboard can be read.

At the Concord High School pool in Elkhart. Hope my swimmer is in the lanes I can see!

At a meet recently I kept looking at the stairs that lead up to the spectator area.  I thought about the disconnect I feel between my mind and my body.  Sitting, watching, cheering, chatting.  I feel so normal.  Sometimes I let my mind pretend that my body is able.  Able to walk up those steps and plop right down on a seat.  Able to saunter out to my car in the parking lot after the meet.  But then the end of the meet comes and I wait for GJ to come help me.  Help steady me as I transfer from my chair to my scooter. And again from my scooter to the car.

But one day.... Maybe one day I'll be able to walk again.  Even if it's with a cane.  And I'll slowly climb those stairs and sit in any bleacher seat available.  And GJ may have a tougher time finding me in the crowd, but eventually she will.  And we'll smile, blow kisses, and I'll remind her to KICK into and out of her turns!

I have a feeling I'll get up those stairs again one day.

The great thing is no matter if I'm walking or riding my scooter, these two love me!  I'm confident of that!