I Am Defined

Happy Sunday everyone! Unless you’re reading this tomorrow or on any day that’s not today or some multiple of seven from today, then happy whatever of the six other days this happens to be.

I have finally been defined with a definition I agree with. For years and years I’ve taken forms of the Meyers-Briggs tests, including the all out test that I took for a job interview many years back, and the results always start with E, calling me an extrovert. I’m actually consistently an ENTJ; Extrovert, Intuitive, Thinking, Judgmental, and the description of an ENTJ fits me pretty well except that I am not that outgoing. I’m outgoing when I need to be, when I have to, but I treasure my alone time too. As a rule, extroverts can’t stand being alone. I took a test online that tells what kind of introvert or extrovert a person is, because I love taking personality tests no matter how corny they are although this one is less corny than others I’ve taken, and it doesn’t call me an extrovert. According to my results I am an outgoing introvert. Which if you look at this description; 8 signs you may be an outgoing introvert, it fits me perfectly. And I love the fact that it doesn’t call me an extrovert.

I’m in the midst of a reading dilemma. Remember I said I was going to have an upstarts book and an ereader book going at the same time? Well, I did that. If you look at my Good Reads widget on the right, there are 2 current books listed. One is a hard cover that I got in a book swap and one is an e-book, young adult fiction. I read the Harry Potter series, and the Trylle series in the beginning of 2013; don’t judge! ;) But my current problem is that I’m just not really into either one. They’re both okay, but nor riveting at all. I have a Baldacci paperback in waiting and thanks to Christmas gift cards for both Barnes and Noble for the Nook app and Amazon for the Kindle app, both on my iPad, I have a couple lists of loaded and ready to read books on the tablet. I have a goal of averaging 2 books a month and I’m not even half way through either book with only a week of January left! January and February are usually good reading months for me. I have to come up with a plan to get myself some reading time so I can catch up and start some bocks I’m more likely to MAKE time to read.

I was talking to a friend from our MS support group about the things that make MS easier to live with today than it would have been years ago, say in the 1940s when it was first diagnosed and recognized as an actual disease. Without MRIs, there was no apparent scarring of the myelin to see on the brain or spine images and while it wasn’t a death sentence for sure, it did affect life expectancy just because they knew so little about it. So much about diagnosing and understanding the disease has improved in the many years since then.

The first disease modifying medication was approved for use and became available in 1993 and more medications became available after that; all injectable. The first oral medication was approved in 2010. That was my first choice in 2011, anything to avoid needles. There are 10 medications an MS patient and their neurologist can try, depending on what side effects you want to chance. But just think;25 years ago there were NO options. You were diagnosed, treated the symptoms as best you could and you knew the disease was going to progress with no way of slowing it down.

Back in that day, just prior to a drug for the disease, it wasn’t considered a disability. In fact the ADA was a baby in 1990 with members of congress that still didn’t want it to pass. We MSers were still destined to end up in wheelchairs and there were still people fighting tooth and nail not to have to widen a door for those chairs or anyone else with a wheelchair, walker, cane or just limited mobility or allowed mobility for breathing or heart conditions. We have advocates and are encouraged to be self-advocates in the fight to continue living instead of just existing as helpless invalids; we became legally valid!

But we really acknowledged the internet, tablet, smart phones. The internet means we aren’t hopeless and lonely when we are at home. The incredible ability to reach out to others like us and be cyber support is fantastic. I couldn’t live without my iPad. With the numbness in my hands that has me dropping things all the time and unable to write having my planner and several reading apps in one device, with a padded cover and replacement insurance on it, is such a blessing It also has a notepad, radio and MP3 storage, camera and my social media apps. And it has speech-to-text for every app I’d type in, a godsend for the times when my “fumblehands” just aren’t up to hitting the right keys. This is not an ad for the iPad. It’s an acknowledgement of how technology makes disabilities less disabling. There have been many times in the past year that speech-to-text software,, like Dragon on my PC, has written this blog!

It’s just amazing and wonderful. How many times did I watched Star Trek episodes where someone was carrying around a tablet with information essential for their job on it? I’m just waiting now for the hypo spray that will zap my MS all together? THAT’S something I’d take to our support group for “share and tell!”

My final note today is for everyone in the areas where the current storm is headed BE CAREFUL! The nasty winter storm the Weather channel is calling Juno is supposed to dump a TON of snow and nastiness on the east! We have relatives and friends that are expected to get in excess of a foot of snow. My friend Edna of Miss Edna’s Place will be seeing it in her part of New England as well, what she describes as feet of inches predicted on TV. If you are in the areas getting snow and hurricane winds, stay as safe and warm as possible and the rest of us please send good thoughts and prayers for them. We’ll get a few inches in Toledo and I’ll complain as I see it falling but then I’ll remember that I don’t have it so bad and check Edna’s blog or ask David if he talked to any of his brothers.

Seasons Change But They Can Stop Right Here!

We’re about a week away from the start of summer! I think all that snow this past winter left me mentally damaged. It still doesn’t feel like it was that long ago that we had all that snow locking me in the house. I know, I know, to those of you that were out in it trying to drive or walk on ice or in knee-deep drifts, I had it made not getting out of the house. To the people in the Deep South who slept in grocery stores with diapers for pillows being locked in at home must sound like paradise. But let’s just be totally honest; the polar vortex tortured all of us. Even our plow guys went from a couple very lean years to not getting a day off.

But now things are good. The spring flowers weren’t as robust as I’d have hoped and I think I might need to get more bulbs this fall because some of them just didn’t survive the mild winters or got munched by burrowing critters. But right now as I look out the porch windows next to the table I type at I see lush filled-in greenery and trees with blue sky peeking through all washed in the sun’s yellow glow. The colors of fall are nice too, but THIS is the sight that soothes me after months of white and brown outside.

David and I took a vacation south a couple weeks ago. We saw a Columbus Clippers game on the first night and that ended up being the only baseball game of the trip. We had tickets to a Kannapolis Intimidators game in North Carolina, but the weather did us in. We met Stephanie and Danni, friends I know from scrapbooking and met in person at the game. Stephanie’s husband couldn’t make it and David could join in a little on the baseball talk, although b Stephanie and I are friendly-foes doing a lot of Reds-Cardinals talking on that subject. But for the most part the three women were taking scrapbook stuff. After a two-hour delay with the grounds crew trying to squeegee rain from the previous day out of the outfield the game was called for the second day in a row. There was just too much water still on the field. It was cool that we were dry and had all that time to talk! We left with the promise that net time we are in North Carolina or if they make it to Ohio, we’ll actually see a game or at least plan a nice dinner!

Before "the game that wasn’t" David and I met his cousin and her husband for lunch in Salisbury, NC. This is one of the two cousins who urged me to try David Baldacci’s writing. Needless to say it was one of those long lunches with non-stop conversation

Now, you might wonder why, aside from meeting some wonderful people, we were in North Carolina. It’s a David and Nani trip and I haven’t mentioned the trains yet, have I? Look at this:

The North Carolina Transportation Museum hosted the Streamlines at Spence festival May 29-June1. Grounds and the roundhouse filled with gorgeous restored or in the restoration process engines from the 1930s-1950s Everything was all lit up for night photography sessions the first three nights and there were train rides at no additional cost as part of entry every day.

I chose the first night for my night pass. Thursday would be the least crowded and photo crowds can tend to lead to lots of dark photos of butts from a wheelchair. David did all three nights and I got some relax time at the hotel on those nights.

Oh, talk about advertising and mental conditioning! On one of the nights I stayed at the hotel I ordered a sandwich for dinner from Jimmy Johns. All those commercials, I hit send on the order I placed online and immediately looked at the door expecting a knock. I laughed at myself because I realized how silly it was, but wow! The delivery was about 15-20 minutes later, yes very fast, but I think they edit a little of the wait time for the TV ads.

On Sunday, David and I rode the train. It’s the first time I’ve been on a train in the chair and I’m ready to ride Amtrak to Chicago now! The lift hadn’t been used that day and it took a little for them to figure it out, but they did. I enjoyed the short ride and felt really good because several people in wheelchairs lined up for the next ride. Well, SOMEBODY had to be first, right?

Now we’ve been home and I’m “recovering” from the trip. My legs don’t seem to have bounced back as well as I wish they would and I’m struggling a bit at home right now. I’m going to get an opinion from my physical therapist when I go in next week.

We had our first MS group meeting with me as group leader this week. It went well with some new faces and I’m hoping more of the regulars will make it for July.

June 1 was Marco’s birthday; we have no kittens in the house again. I have to admit though, Carla is just this past year starting to act like a cat more often than a kitten, but both Carla and Kaline still have their kitten moments too. Cats never 100% grow up.

Beware of The Chair

It’s been a busy week with doctor appointments and all including my semiannual visit to Cleveland Clinic on Tuesday. When I schedule my May visit David and I always check the area baseball schedules so we can plan our day. For this year’s first trip we’d checked the Indians schedule while we were at the Mellen Center in November and upon realizing the Tigers were in town about 6 months later, we made a point of scheduling my appointment for one of the days in the series.

As it ended up we saw the middle game of the Indians sweeping the Tigers but as I always say “A bad day at the ballpark is better than a good day somewhere else!” It was a fun evening and the seats I picked on the computer were as great as they looked like they should be!

I had no problems at the game or with Indians fans as I proudly sported my Tigers logo on my chest. My problem was getting in the park and security. Progressive Field has metal detectors at the gates. All bags, purses etcetera are checked before entering and fans must walk through the metal detectors. It was the first time I’ve seen that much protection to enter a baseball game since the Olympics in 1996. Of course a wheelchair would set off the metal detector so I didn’t have to go through it. In fact, I didn’t have to go through anything. They opened up the area between the metal detectors and I wheeled through onto the stadium’s concourse. They didn’t search me, they didn’t even look in my tote bag that hung on the back of my chair; nothing. And for all the security, no one even asked me to try to stand up thus proving I actually am a “harmless chick in a wheelchair.”

That’s one problem. As someone who uses a wheelchair I am neither harmless nor helpless. Okay, with the manual chair, which we use for out of town trips I need a little more help because my arms, while stronger than my legs, get tired of wheeling the manual chair. It’s not like they get a break at home when I use the power chair, they’re still important for lifting myself and moving when I’m standing so there is a fatigue limit when I’m using the manual chair, but I’m not the only person who goes to baseball games in a wheelchair. There are plenty of people who have increased upper body strength as a result of using the chair. It’s a little offensive to lump us all into a “harmless cripple” category. A disability doesn’t make someone any less of a human being and as the old adage say: where there’s a will, there's a way. Like anyone else, a disabled person isn’t a security risk because that person chooses not to be.

But the insinuation that I pose no danger because of my disability is not my biggest issue. Check out 1800WHEELCHAIR.com . Go ahead, the link opens in a new window. Look at all the chairs for sale! That’s just the easy one to remember; there are tons of sites that sell chairs, even power chairs and scooters. They all do wonderful things for those of us that need them and they have pockets, baskets and different accessories for carrying things. Manual chairs even have under the seat storage pouches available and I always have a tote bag on the handles behind me. You can find all those things online and you know what? A doctors’ prescription is NOT necessary to purchase them. No one cares if you actually need mobility assistance, if you pay the advertised price, they’ll even deliver it to you for free! If you want to commit an act of terror at a crowded event buy a wheelchair and put your contraband materials in one of those handy pockets. Easy peasy.

So don’t automatically treat a person using a mobility assistive device like they couldn’t possibly be a risk. A person in a wheelchair is just that; a person. They should be trusted no more and no less than someone who walks in to an event on their own legs. I would have felt safer if they’d swiped the front of me with the wand and looked in my bag before they let me roll on in.

Disabled and Disenfranchised?

The powerchair might fit if it had no arms

It’s not quite as bad as the title infers, but this morning was, um, interesting. It wasn’t too cold and our polling location is very close to our house so David and I “walked” over to vote. That’s something I haven’t been able to do since the location for our precinct moved to so close because this is the first year I’ve had the power chair. So we closed up the house and made our way to place our votes. However there was a problem.

We crossed the bumpy parking area to the doorway between the school and church and lo and behold the door opening was not made to accommodate my chair! Last year we went downtown for early voting and the year before we took the manual wheelchair and I guess David must have pushed me through the door with my arms forward because there’s no way I could have done it myself without bashing my elbows and/or skinning my knuckles.

Here is where the interpretation of the ADA term “reasonable accommodation” comes into play. If I go to a store and my chair can’t get through the aisles, reasonable accommodation may include bringing me a variety of items to choose from and letting me select the items I want to buy, essentially bringing the store to me. It can also mean taking my order and delivering items to my home with no delivery charge as I wasn’t able to use the store in the same way other shoppers can.

Today, the reasonable accommodation, since I couldn’t get in to cast my vote, was that a provisional absentee ballot was brought out to me. Had it been colder, snowing or raining I’d have been sitting outside in the weather waiting for all the paperwork to be brought out. Regular voting for me is adjusting the screen down and using the touch screen method everyone else uses. Absentee voting is filling out an envelope and choosing which candidate and issue responses by filling in spaces by hand. One of my MS issues is the inability to write well and sometimes to even hold a pencil. There was a book to hold under things to write on but no table and maybe it's just me but I don’t really like the idea of people circled around me able to read and see what votes I’m casting. The voting machines have privacy walls for a reason. So, I backed up a little and colored in the spaces for my choices in midair. If I’m voting absentee, I’d prefer to do it from the privacy and practicality of my own home or at least the more private back table of a crowded coffee shop.

The two gentleman who tackled the problem of there not being accommodation for a powerchair to get into the building were great in their efforts to make sure I could vote and very sincere in their apologies for the situation, but it’s an issue that should not have come up. It’s a building that’s open to the public and should be accessible in accordance with the Americans with Disabilities act as updated in 2010.It's also a location selected by the board of elections that does not offer equal access to voters with disabilities.  I can't believe they don't consider this when choosing places people go to vote.  Updates should have been made to the building by spring 2011; full out construction renovations should have been completed by March 2012. It’s November 2013; it’s unquestionably in legal violation.

Today the accommodation was as reasonable as could be given the circumstance but it should be a call to attention of a bigger problem. In 2014 it won’t be acceptable.


(The Board of Elections will be getting a letter.)