Wheelchairs are NOT the enemy?!?!

Over the years, my views on wheelchairs have run the full gamut.  When I was a little kid, they looked SO cool and were FUN to play in/with.  (Wheelchair races, wheelies, etc)  As I got older, and was diagnosed with Multiple Sclerosis, the threat of being confined to a wheelchair terrorized me.  The keywords here are THREAT and CONFINED.  All I could focus on were the things I wouldn’t be able to do, instead of the additional things that using a wheelchair could help me do.

I’m not saying that I am excited about being in a wheelchair AGAIN, or that you should rush out and buy one, but after having to use a wheelchair many times over the last 20 years, I can FINALLY acknowledge that in some ways it makes my life easier.

Some examples include:

  1.  Airports-  Using a wheelchair allows me to continue traveling.  My legs have become so much weaker over the years that even a “quick run” to the grocery store wears me out and makes falling more likely.   The long lines and distances at the airports would make it very difficult if not impossible for me to fly.  I have written numerous times about traveling in a wheelchair via plane and train.  Air Travel with MS- Use the tools available, Just the Facts Please, and Your mission should you choose to accept it are a couple examples if you are looking for more information.
  2. The Risk of falling is minimized-  I can’t say that the risk is eliminated, (Have you met, Grace?) but it is definitely smaller.  Full disclosure here-  I launched myself down the steps of my parents porch the other day because I got  impatient and was resisting the help that was offered.  😦
  3. I can move faster.  I’m not talking about using a power wheelchair, although you really can haul ass in those.  I’m talking about general everyday tasks.  I “roll” faster than most people can walk.  In the beginning, I didn’t have much in the way of endurance.  My arms got tired quickly. The more I push myself though, the stronger my arms are becoming, which in turn is making other “everyday tasks” easier to do.

Finally, and best of all….it allows me to hold and move with my twin grandsons.  Again, I don’t have the risk of falling with them.  I have an “auto rocking chair”, which they think it’s cool as hell.  When I am rolling around or backing up, I make noises like a race car or a construction vehicle backing up… Beep beep beep….

Thanks for reading along today.  What are your thoughts on the use of wheelchairs?  Can you think of any other way they can make your life easier?

 

 

 

Your mission, should you choose to accept it

If you suddenly found yourself  without the use of your legs, would your life stop?

There was a point in my life that I would have said being in a wheelchair in any capacity would have been the end of my life. In fact, when I was diagnosed with Multiple Sclerosis almost 20 years ago, and the neurologist pushed a wheelchair across the room saying I should “get used to it”. I truly thought my life was over.   At 26 years old, I was so naive.

Fortunately, over the last 20 years my time spent in a wheelchair has been minimal.  I haven’t required it’s daily use in years (other than when I was recovering from a surgery)

So what is this mission thing I am talking about?

The mission:  Travel from Northern IL to Holland, Michigan and back without the use of my legs.

Why am I doing it?

The reasons I decided to do this are ever evolving or changing. In my post, Where there is a Will there is a Grace, I explained that my daughter’s mother in law wanted to come visit the grandbabies.  I didn’t want to drive to Michigan and back to pick her up and drop her off so I suggested that she take the train.  Everyone was concerned that the train’s were not wheelchair accessible.

This is where my reasons for doing it began to change.  I am no longer doing this to avoid a long drive.  Past experience has told me that handicap accessible does not always mean handicap accessible, so I volunteered to “test” the route first.  To make it an accurate Test, the circumstances need to be the same.  So with the exception of driving myself to the train station, ( I would be willing to pick her up and drop her off) I have made all of my travel plans from what I felt was the perspective of someone who does not have use of their legs.

Once I began making reservations, my reasons for making the trip began to change again.  Each roadblock or hurdle that I came across, (I will explain more below) has made me more determined than ever to prove to myself that when or if the day comes that I am in a wheelchair full-time, my life will not be over.  I also hope to share what I learn with anyone else that might have the same fears about traveling like this.  (yes I have realized there are many things that are making me nervous)

My original plan was to drive to the Metra Station in Harvard, ILAs I mentioned before, getting a ride to and from the train station would not be an issue for T or for me, so I decided to allow myself to drive there and begin the test once I arrived at the train station.)   From the Metra station in Harvard, I would take the 2 hour train ride to The Chicago OTC (Ogilvie Transportation Center) where I would need to TRANSFER to Chicago’s Union Station to catch the Amtrak Train leaving for Holland at 6:30 pm arriving at 10:40 pm

:/ What does transfer mean, and how would I be doing it?  Google maps says that it’s a short 5 min walk.  For who?  (Actual distance is .3 miles.)  Are my arms strong enough to roll myself that far?  Would I be able to navigate through crowds with a wheelchair, or would everyone ignore me as they rushed about their lives?  What if it was 100 degrees or raining outside?  Still undecided if I had the guts to try this on my own, I found a link to Open Taxi’s which would take me from Chicago’s OTC to Union Station for $7.00 if I needed it.

Assuming I made it Union Station in one piece, I would need to be at the Amtrak station one hour before departure…. Ugh.  Since trains only leave Harvard every couple of hours, I would have to be on the train by 1:35 pm to make it to Chicago on time 😦  Maybe I look for a different way into Union Station?  It was already going to be a long trip, did I really want to spend more time sitting and waiting?!?  I decided not to make a decision about the Metra just yet and went back to exploring the Amtrak portion of the trip.

The Amtrak train would arrive in Holland at 10:40 p.m., but the train from Holland to Chicago did not depart until 6:40 the next morning.  That meant getting a hotel for the night.  (maybe paying me $200.00 to drive there and back would be cheaper after all?)  In effort to keep the costs down, I found a “cheap hotel”, but they didn’t offer shuttle service.  How would I get to the hotel in the middle of the night? Was there a different type of taxi for a passenger in a wheelchair?  Maybe Lyft?

A quick google search, showed that The Lyft app allows passengers with accessibility needs to enable Access Mode. In certain markets, when Access Mode is enabled, passengers may request a vehicle that is specially outfitted to accommodate wheelchairs.    (Not very reassuring)  To give them credit though, Lyft’s website does provide step by step instructions  complete with pictures explaining how to request wheelchair access.

I called everyone back to discuss the total cost of the trip to make sure they were willing to cover it, and got confirmation to book the hotel and train tickets. I went back to the Amtrak site to book the tickets, but did not see a link to request assistance for traveling in a wheelchair.  Fortunately, the site does have a virtual assistant that does make it relatively easy to book online. I chose to call Amtrak instead though, because I had other questions.

  1. If the train station is unmanned, how will anybody know that I am waiting on the platform, or that I need help?
  2. Are all of the restrooms also handicap accessible?

Surprisingly, I learned they are not.  While the customer service agent assured me there are handicap accessible restrooms on the train, not all are, even though those same cars have wheelchair seating.   Interesting?  I will have to investigate that further.  (It is a 3 hour long ride after all)

I booked our Amtrak tickets, made a hotel reservation, and checked in with a friend whose hubby used to drive for Lyft.  All that was left to do was to purchase Metra tickets.  I looked into a different Metra station that had trains running into Chicago hourly.  Sure I would have to drive further, but again I would be willing to do the same for T, so I consider it “allowed”.  After I downloaded the app to be able to purchase tickets, my mind started drifting back to 20 years ago when I took this same train to go to school in Chicago.  More questions…..

  1.  Didn’t I always have to climb stairs to board the train?
  2. Was there a special car for wheelchair seating?  How would I identify it?
  3. How would I pay for parking and how long was that payment good for?  (I used to have to rollup dollar bills and shove them in a machine.)  Hmmm, maybe there is an app for that too?

My questions made me start to second guess myself.  Ut oh, MORE RESEARCH!  I went back to Metrarail.com.  Again, the link about traveling in a wheelchair is not visible on their homepage, but using their search box and digging a bit produced a 26 page downloadable guide.  The guide answered my first two questions, though I have begun to make myself a bit nervous.  I’m in it now….

Parking still remained a question though.  I finally found an app that you could pay for parking online or from your phone.  Unfortunately, that same search informed me that there was no overnight parking at any of the Metra stations in Elgin…..   Grrr.

I am very grateful that my parents are as helpful and supportive as are.  I am going to park my car at their house overnight, and they will drive me to the station and pick us up the next day.  They will also be keeping D.O.G. overnight for me, although I don’t think I remembered to actually ask for that part yet.  Doh!

Everything is booked.  Adventure awaits!

As I started to think about packing, I realized that the only backpack I own holds the legs to my wheelchair when I am not using them.  How do you carry a purse or any kind of luggage if you are using your arms to push yourself in a wheelchair?  Do most wheelchairs have legs on them, or are they designed taller so your legs don’t touch the floor?  If I allow myself to worry I will never do this, so the new answer is One thing at a time.  I am sure I will make a lot of mistakes, but that’s how you learn right?

One last thing I found that I will have to investigate further when I get home, (not enough time now) is that the Regional Transit Authority or RTA  provides free one on one ADA training programs for using public transportation.

 

 

 

 

My Italian Adventure part 1 of 5?

Before I begin to talk about my “Italian adventure”, it is important that I stress that all of my travel plans were with airline buddy passes.  If you aren’t familiar with these, let me briefly explain.  When you travel using a BUDDY PASS (an employee benefit), you are able to fly for free or dirt cheap on flights that have unsold seats, but you are on standby. This means you don’t know if you have a seat on the plane until moments before the doors on the plane close.  I was aware of this before I started my trip.

Monday morning 5/20/2019

I woke up at 5 am. (actually I think 5 am is more the time I gave up trying to sleep, and began moving.) I “Coffeed”, showered, put on a DRESS , and…wait for it….a little bit of make-up. This is another thing about the buddy passes, you have to “dress up” . I threw a couple of last minute items in my carry on, TRIPLE CHECKED that I had my boarding pass, passport, and bus ticket for when I arrived in Italy. Check, check, and check.

I checked the standby list and was still at number 2 (my chances were good that I would make it on the plane.) Whooo hoooo!!!!

My dear friend Brian arrived at 7 am to take me to the airport. We spent the hour plus drive catching up on all the things that had been happening in our lives since the last time we were able to “hang out”, almost a year ago. Traffic wasn’t bad, in fact we arrived early. He dropped me off at a door that had wheelchair access and assistance was just inside the door. ANOTHER win.

I checked a large suitcase.  Having a medical condition makes traveling for any amount of time with just a carry on, very impractical.  ( Pads, diapers, waterproof pads, medication, surgery shoe, etc)

Going through security was a breeze, other than a small oversight on my part which COULD have been very embarrassing. I was able to STAND in the scanning machine instead of having to be completely felt up. I didn’t have to take off the boot, and the lines were relatively short. WIN WIN! The moment that could have been embarrassing was when they had to open and inspect my carry on because I forgot to remove my laptop. DOH!

I arrived at my gate at 9:15 and immediately checked the standby list again. Number 17?!?!?!? What the hell had happened in the last 2 hours? Did everyone suddenly feel the urgent need to travel to Milan?

After people watching (active listening) for about half an hour, it was more than obvious that the standby list was going to continue to grow. The 9 am flight to NJ (My first stop) was cancelled because of the storms that were pounding the east coast.  So all of the customers that missed the 9 am flight would be squeezed onto later flights.

As a NON PAYING CUSTOMER, getting me on a plane was of very little importance to anyone but me.  Ok, I knew this COULD happen, let’s make the best of it. I chatted with several other passengers which made the time pass pretty quickly.  I looked up other flights that were leaving for NJ, and there were several, before my flight from NJ to Milan would leave at 6:30 pm.   Chicago to NJ is a 3 hour flight, and there were flights leaving at 10:00 am, 11:30 am (my flight) and 2:15 pm that would allow me to make it to NJ on time.  CLOSE, but still on time.

I waited at the airport and watched the 10:00 and 11:30  flights depart without me.  The airline personal said that it was only going to get worse, and may feed over into the next day. I was number 45 on the standby cue for 2:15, so  at 2 pm I  “gave up”. Again, I KNEW this COULD happen but  I certainly didn’t expect it.  I had asked my friend Marisa a couple of weeks ago if she would pick me up if ended up stuck.  I made the bail me out call now.

She picked me up from the airport and we went back to her house where I could use my laptop to explore any other options that might be available. During this time I began searching the airlines for flights to NEW YORK, PA, or Dulles that might allow me to still make a connection to Newark in time for the 630 flight to Milan. While I could fly from O’hare to any of the other states without issue, the lists for flights into NJ were all full.  Hmmmm what if I rented a car and drove to NJ from one of the other airports?  Probably not a good idea considering my right (driving foot is still in a boot).  It’s one thing to drive with my left foot  on country roads where I know how to avoid the traffic, but not very smart and probably illegal to do in a big city.

After researching all the options, we decided that I might as well try to catch one of the 4 other flights to NJ that night.  The flight to Milan had over 30 seats available for the next 2 days, so if I could at least get to NJ, half the battle would be won. I would just need to stay in Newark for the night.  ( yay hotel points)  So back to the airport we went.  If I didn’t get on one of the flights, Marisa would come back and get me at 9:30 pm and I would just crash at her place.

The trip through security this time did not go as smoothly.  (not terrible, just not smooth)Inkedbody scan_LI

While I remembered to take my laptop and tablet out of my carry on bag this time, I forgot to take off my sweatshirt, and to remove my cigarettes and lighter from my pocket.

So this is how I appeared on the scanner. ( lighter on my hip and zipper from my sweatshirt in my groin)

The sweatshirt and cigarettes had to go back through the x-ray machine, and the poor TSA agent had to reach between my legs.  She grabbed the poise pad I was wearing and asked, “what is this?” As we looked into each other’s eyes….We had a moment…. kidding.  I said ” a pad”, she said, Ok” . Kind of awkward :/ .

She finished her inspection of me. I re-packed all the items as quickly as possible in my carry on bag  and quickly moved away.  10 minutes later I realized that I had not recovered my cigarettes and lighter.  YES, we had to turn around.  No one in security could find them, so I shrugged it off :(.  As we were approaching my gate, the security girl came running up to me with my cigarettes and lighter.  This time, we did have a moment.  I even told her I loved her 🙂

When we arrived at the gate, I immediately checked the standby list and learned that I was number 33.  😦  I spent the next hour and a half catching up with the “new friends” I had made earlier in morning ( the other people that were stuck at the airport).  At 6:10 I heard one of their names being called to make the flight (#8) and went over to “congratulate” him.  As I leaned against the counter, I felt something move behind me.  It was his laptop falling off of the counter.

broken-laptop

(This is not his laptop, but it did look as bad as this 😦 )

OMG!!!!!!!!!!!!!!!!  What had I done?!?!?!  How do you apologize for something like that?  He said, “don’t worry about it”, as he picked up the pieces and rushed to board the plane.  How do you not worry about it??!?!?  OMG I was going to go to hell for this.  I was going to be stuck in the airport for days. I was…… hearing my name being called.  I had made the flight!  The other 20 something people between this man and I had given up, or found another alternative.  I was actually boarding the plane!

Have you ever flown standby?  Do you have any security mishaps you’d like to share?  I would love to hear your stories!

 

 

 

I came back from Boston Wicked Smaaht

Ok that’s not even a little bit true, I’m still the same dumb ass I was before I went on the trip, BUT I did learn ALOT (good and bad).  It was definitely an adventure…..

If you’ve got some time I would like to tell you about it…..well about getting there and our first day in the city.

SOMETIMES the weather forecast is right

Before we left, I had been half listening to the forecast.  The forecasters said that we would be ‘blessed’ with a wintry mix of snow, sleet, and rain and temps of 26 degrees beginning 2 hours before we were to head out for the airport.   After sleeping 3 hours, I woke up at 1 am, showered, coffeed, and looked out the window.  Of course they picked THIS time to be correct….smh

We left Einstein’s house at 2 am, and headed to my house to pick Thing 2 up.  She was driving us to the airport.  (well I was driving us to the airport, and she was taking my car home)  That 20 minute drive took almost an hour….grrrrr

wintry mixok MORE coffee….(the American Airlines app, I downloaded on my phone said the flight was still on time, so we were doing this)  Driving to the airport sucked, since everyone forgets how to drive in the winter.  (It’s not like we haven’t had a long enough winter for people to relearn)  smh AGAIN.

When we got to the airport, Thing 2 ran in and grabbed a wheelchair for me.  I NEVER thought, I would be so grateful to have one.wheelchair  (Our trip hadn’t even started and I was completely exhausted.)

I won’t claim that it was perfect, but since I know the rating system affects the person driving the wheelchair directly, (he really was a nice guy) I did give the experience a perfect 😀 score on the “she has been delivered” tablet you have to sign when you are dropped off at your gate.

Security was a breeze

I probably shouldn’t say this, but the “trick” to getting through security quickly is having a bag of pee strapped to your leg.  The poor girl that had to do my pat down apologized so many times about having to “feel me up” and couldn’t comprehend what a foley catheter was, I don’t think she even noticed or swabbed the great stuff on my hands.  In hindsight, it is really scary that the people that are supposed to be providing our security are so afraid of “offending” someone, that they “overlook” certain things.  I hope I am wrong and they tested me some other way without my realizing it.  I assure you I will not be complaining to them.

Clear skies

Boarding the plane was also a breeze.  I did get a little nervous when the person sitting next to me started coughing,  (Oh no, not the plague again) but for supposedly being a full flight, she was able to move to another seat closer to other family members.  YAH ME!!  In fact, both seats next to me were empty!!!!  Double Win!  I took off my leather bomber jacket, used it as a pillow, used my sweatshirt as a blanket, and I was out.  🙂 I woke up a couple hours later in Boston, not quite fully rested, but refreshed nonetheless.

The airline had a wheelchair waiting for me as I deboarded the plane.  I didn’t get a picture of the woman driving (though I should have since she was also the one who helped me reboard on the way home and she was SO HELPFUL)  After taking us to the baggage claim area for my companions suitcase, I explained that  “according to my research” we were supposed to take the SL to the blue line and I needed to buy a ticket somehow.  “Oh no honey, you don’t need to buy a ticket, it’s all free”, she said.  Huh?  Nothing in life is free.

There are still some free things in the world

Transportation FROM the airport is free via the Silver Line and the Subway (as long as you don’t leave the station).  Who knew?!?!  silver lineWe boarded the SL1 which is an electric/gas powered bus.  It was electric leaving the airport, then temporarily shuts off to restart and run on gasoline…..WHAT?!?!?  Don’t laugh, I really had no idea such a thing existed….

We rode the SL to the end of the line and then tried to figure out which direction we needed to head on the blue line to get to our destination.

I must really have the “damsel in distress” look, because people were constantly coming up to me offering to provide help or direction.  A man and a woman (not a couple) even debated with each other which way would be easier.  The man said we should take this route…the woman directed her eyes to my cane and suggested that MAYBE, the orange line would be a better choice.  Orange line it is!.. The announcement said the the orange line would be approaching on the center platform….

Look BEFORE you leap

I heard “center platform” and crossed the tracks to head that way.  No I did not notice the train that was heading directly for me before I stepped onto the tracks.  Talk about your life flashing before your eyes….HOLY SHIT….(yah for the foley cath, since I think I would have pissed my pants without it).   No I didn’t get hit by the train, but I didn’t escape unscathed either.

Wait there is more….

So now I am standing on one side of the platform, my companions on the other.  The orange line pulls up and we need to be on that train, but how to communicate that?  I am using hand signals through the glass trying to tell them to get on the train as I proceed to board.  Once on the train, I don’t see them….Oh shit should I get off?!?!?  I try to step off the other side of the train to see if they are still on the platform, only to get my feet caught up in my suitcase or the cane and down I went.  20 minutes in Boston and I wipe out.  The upper part of my body is on the train, but my legs are hanging out the door and I can’t pull them up. 

I really am a train wreck (pun intended)

For the first time in my life, I am grateful that people don’t mind their own business. Someone pulled me into the train car just as my companions found me.  How the hell have I survived 44 years on this planet?!?  Have I mentioned GRACEful I am not?!?!still alive

I’m not done yet though…. not with my life or with this story….

We did make it to the apartment we were staying at to drop off our bags without any further mishaps.

We also found a great little pizza place.  regina

While we were eating we decided our next stop would be the Prudential Skywalk.

The UBER app can kiss my ass

Believe it or not, I did listen to the advice I was given before leaving that uber was the easiest way to get around while we were there, so I downloaded it to my phone before leaving.  After my “near death experiences” from the morning, I thought MAYBE now was the time to actually use it.  The app had other ideas.uber sucks

OH come on!!!!!!!!!  WTF?!?!?  How can it be disabled, I have never even used it before?!?!?  Visiting the website they sent me too was no help either…. Ok so back to the train…. If at first you don’t succeed try try again?  In fact I was more determined than ever to figure this “whole public transportation” thing out.  When we got back to the train station, I took a picture of the map (schedules had changed effective April 1st and new ones weren’t available yet?!?!)  I made a “new friend” who suggested that we buy a one day charlie card which would allow us unlimited use of the buses and trains throughout the city for 24 hours.

mbta helpmbta map

 

 

 

By the end of the first day, I was cold, tired, and completely worn the hell out…. but I CAN boast that I have become quite proficient at using the MBTA.  ( I still think that using a horse would have been easier)

homeless

IT RAINED ALL DAY!!!!!!  (at least it wasn’t snow though)

I took a selfie before crashing for the night.  I don’t know that I will claim damsel in distress, but definitely helpless, homeless, or in someone in need of assistance.

I’m not sure if I made an impression on Boston, but after one day, it certainly left an impression on me.

I will write more about our trip later this week,  not only did I come back from Boston with a semblance of a silly accent, but I also picked up a scratchy voice and fever 😦

 

 

 

“Running” from Anxiety

I’m starting to think that trying to run from anxiety doesn’t work.  I thought I was done packing, my suitcase is totally crammed, yet anxiety has still found me and is trying to find a place amongst my trip.  YOU CAN’T COME WITH YOU CRAZY BITCH!!!!!!! (anxiety)

I woke up this morning after my Tysabri infusion (recharge) yesterday feeling great.  My suitcase has been packed for two days.  I even had the forethought to wear both a hooded sweatshirt AND my leather bomber on the plane to “save space” in my suitcase (did I mention my suitcase is REALLY REALLY packed?)

For some reason, BEFORE I leave for a trip I have to clean my house entirely.  This includes floor washing, laundry completed, all garbage cans emptied, and all projects “put away”.  While most of the new tub was installed last week, I still had some caulking and “void filling” to do from where the old tub was.  So since the housework was done, why not “knock that out” too?

There is NOTHING GREAT about “Great Stuff”

That shit is Evil!  and now….. it is Everywhere….including my hands.  Normally this wouldn’t really bother me much, it will wear off and where the hell am I going that someone is going to examine my hands….. and then it occurred to me……

When I have my “pat down”  at security tomorrow morning, they are also going to swab my hands to test for something.  I still never bothered to ask what they are testing for, I just know that they are going to test. (I assume bomb making chemicals or something)  It’s never been an issue, so I just let them do their thing.  BUT, I probably shouldn’t put pure acetone on my hands, or paint thinner, or gasoline…etc etc…  How the hell do I get this off?!?!?  OMG what if “GREAT STUFF” has the chemicals in it that will make it look like I made a bomb?!?!?    I thought about googling it, but then worried that I would be red flagged for googling such a thing before getting on a flight (hell writing this post may be the only red flag they think they need)

Yes I do realize that I have absolutely NO CONTROL about what will happen tomorrow.  What’s done is done.  But it took me two hours (and a beer) to calm down enough to put things in perspective.  I HATE ANXIETY!!!!!

While in panic mode, I called the airline to make sure they knew I needed a wheelchair and I searched for a blog that Damn Girl Get your shit together wrote a couple of weeks ago about What to do when you are freaking the fuck out. While rereading her post, I also remember commenting on it, but couldn’t remember what I had said other than “Yep, I need to do that”, so I searched for my comment and reread it.  I meant what I said about putting things in perspective, but I had forgotten.  As I was thinking, I also remembered that I have survived worse, and my breathing finally started to slow down.

I think the real problem is that I try to CONTROL too many things.  So what if they question me at security?  Worse case scenario, I have a great story to tell in the future.  I already know that it takes me longer to get through security than most people and have planned to allow extra time.  My flight leaves at 6 am, we will be there at 4 am, and what happens will happen.

Three friends have texted me that Chicago is “getting hit” with a wintry mix of snow/rain/ and freezing temperatures tonight.  Ok, so maybe I have to leave my house a bit earlier than 2:30 am?  (this won’t be the first time I have had to spend the first 8 hours of my trip sleeping)  More on that trip another time though.

One beer, has now turned into three, and I need to finish making dinner for my traveling companions who should be here soon.  See you all in a week!!!!!