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?

 

 

 

Leaving your phone in a Lyft driver’s car

I walked into the hotel room at 12:30 am to drop off my bags and to park the wheelchair.

How do you reach your Lyft driver if you forgot something in their car?

When I walked into the room, “T” was awake, and still fuming about the height of the bed.  I unburied my tablet and asked T to use her phone.  Actually, I don’t think I asked, I think I just said I was taking it.  She  continued to complain about the hotel saying I needed to talk to the manager.  I put my hand up and said,  “we need to be awake at 4:30″, I can’t do this now.  I have to find my phone, or I won’t be going anywhere tomorrow”.

I headed back outside with phone and tablet in hand.  I sent several text messages to my phone hoping the driver might see them on a pop up.  I called Thing One to tell her that I had lost the phone and maybe I needed her to put a hold on it.  (My family each pays her $50.00 a month and we share unlimited everything on her account) I asked her to find a phone number for Lyft to report the loss.

She responded with the following screenshots:

This is all good in theory,   If you know your passwords.  I don’t!  My niece set up the Lyft app on my phone during my Boston trip over a year ago.  Crap ! Crap! Crap!

I filled out the Contact Lyft form using the hotel’s phone number and my email address for which I also don’t know the password.

ARGH!!!!!!!!!!!!!!!!!!!

I suspended myself from most of my accounts trying to guess the passwords.  Those that didn’t suspend me, sent a verification email to my LOST cell phone. SMH!!!!!

Just as I was going to surrender… I remembered that my neighbor works nights…maybe I could call her?   IF only I actually knew her phone number instead of only having it stored in my phone?!?!?!?

Ah but wait a minute…we are friends on Facebook..and that is the one password I remember.  I sent her a message on Facebook messenger asking for her phone number and then called her from “T’s” phone.  It’s probably a sad thing that she wasn’t surprised in the least that I needed “bailing out”.  I asked her to go to my house with her key, and I would tell her where to find my list of passwords.

When I logged into my email account there was a message from Lyft that the driver had found my phone.  Somehow I was able to contact him and beg him to bring my phone back to me.  Lyft charges a $15.00 returned item fee.  I paid that and tipped him $20.00.

At 3:15 a.m. I finally crawled into bed.  Exhausted

At 4:45a.m, there was a knock on the door.  It was the front desk guy Brent.  He had spent most of the night/morning outside smoking with me while I tried to get my phone back.  He promised that if he didn’t see me surface from the room by 4:45 he would “bang” on the door.  He had also set up coffee and set out some of the cold breakfast items even though they don’t start breakfast until 6.  Yes I wrote an outstanding review for him and the hotel.

Grace: “T” We need to get going

“T” (from the bathroom), I’m working on it.  I’m gonna need you to help carry some of my bags.

Grace:  Growl….BAGS?!?! As in multiple?!??!?! How am I supposed to carry anything while I’m in a wheelchair?!?!

LOTS of cuss words

probably even a few more

I don’t even remember her response.  I loaded all 3 of her bags and my one bag onto the wheelchair and headed to the lobby to arrange the LYFT.

I’m going to insert a copy of the review that I left for Rosebud Taxi Service which explains in more detail how we ALMOST missed our train.

I am from the Chicagoland area, where Lyft’s are frequently used and also usually readily available. I made the poor assumption that they would also be readily available in Holland, MI. While I was able to use their services from the Amtrak Station in Holland to my hotel where I was staying, I was unable to locate a driver to get to the station at 5:30 in the morning. My companion and I were both traveling in wheelchairs, so I began requesting a ride using the lyft app at 5 am even though we did not need to be at the train station until 6:30. From 5 to 5:45am I could not find anything. At 5:45, our hotel receptionist had found the number for Rosebud Taxi Service. I called and explained our situation to a very nice gentleman, who not only apologized profusely that they wouldn’t be able to help with both chairs on so short of notice, but also gave me a phone number for a competitor who might be able to help. Who does that?!?! Wow! After speaking with his competition, I don’t think they are any competition at all, their response to my dilemma was, “sorry nope nothing we can do.” I went back to trying to obtain a ride from lyft, only to have the one driver cancel the ride because in his words, “I’m 20 mins out for a 4 minute ride, not worth my time.” I did explain that we would tip very well and would probably have to be transported separately. He said, “ no I’m cancelling.”
I think I literally cried to my companion to please call rosebud back while I continued to try to use the Lyft app with no luck. After explaining our tale of woe again, the owner of the company stopped what she was doing in her personal life and came to pick us up herself with a vehicle large enough to hold both of our wheelchairs. I have to ask again, “Who does that?” I am so grateful that there are people in the world who will still go the extra mile to help “rescue” someone in trouble. I truly feel that she “saved” us. It is also important to note that she didn’t charge us any extra for our additional “luggage or needs”. I wholeheartedly give Rosebud Taxi Service 5 stars and would recommend them to anyone!

I didn’t feel it necessary to add that the owner and T could/did not help me load the wheelchairs or luggage into the SUV.  BUT that’s when the BREAK happened. Everything happened in such a rush, I honestly don’t remember the exact point it happened.  Maybe I dropped one chair on top of the other?  Maybe I closed the seat on my finger?  In fact I am sure I did both of those things.

In the short 10 minute ride to the train station, my finger turned black.  Oh shit…. The ONE thing Einstein said before I left, “DON’T BREAK ANYTHING!!!”.  There was no doubt that it was broken :(.  Didn’t matter though, we had a train to catch.

I didn’t even try to use the wheelchair other than for baggage on the way home.  The fact that “T” was able to though without the use of her legs also supports that it is doable.

In closing, other suggestions I have for traveling alone in a wheelchair are:

  • pack as light as possible
  • print your tickets etc Do NOT rely on your phone
  • TRY to get some sleep.  (I’m pretty sure the 1 hour I got is what lead me to getting sick when I got home)
  • Plan for back up options should your original plans fall through.  (multiple transportation and hotel options.)
  • Know your limitations
  • Call your hotel or transportation method to check heights, dimensions etc.  It would not be unheard of to ask for pictures of your accommodations before committing.

As a side note, while the ADA suggests a bed height of 20-23 inches in handicap accessible rooms, although, it is NOT a requirement.

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Just the facts please

I know I promised to write the truth, the whole truth, and nothing but the truth.  I am working on it, but first I want to share the tips and information that I learned during my adventure, so here are the facts.

In my last post, I gave the spoiler alert that it IS possible to go from the suburbs of Chicago to Chicago via the Metra train, and from Chicago to Holland, MI and back via the Amtrak train, while remaining in a wheelchair.  Did I do it?  Kind of….

Here’s the story…..

My FIRST challenge of the day was trying to figure out how to fit the wheelchair in my car. It does fit in the trunk WITHOUT the legs on it; however, there is no way that 2 wheelchairs, “T”, and my parents and I would all fit.  Although I had access to a car that would fit both wheelchairs, I did not know if “T” would be able to transfer into the other car since the seat was higher than mine.  I worked this out removing the legs of my wheelchair, and making my mom stay at home.  (she was disappointed)

First Piece of advice—Know your equipment.  It’s size and how it works.

We arrived at the Metra station almost 25 minutes early so I could survey the area. There was some confusion as to which track the train would be departing on, (the signs said one thing, and the map said another) but since I was getting on at the end or beginning of the line, (however you look at it) there would be time to change platforms if needed.

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The sign says the opposite track

I opted to stay in the shade by the building rather than to cross to the side the sign advised.  (Yay I picked the right one)  Inkedmetra (4)_LI

 

 

When the train pulled into the station the ADA symbol for handicap accessible was clearly marked on the car.  What wasn’t clear was how I was going to get UP onto the train…

 

 

That question was quickly answered by not one but two of the conductors that got off the train to welcome me.  I must of looked nervous when I told them this was my first time traveling in a wheelchair, because they were both very quick to assure me that it was very easy and I would be an old pro, by the end of the trip.

I didn’t think to take pictures or a video of the lift at this point because I was too busy soaking it all in.  They were right though, it was easy.

metra (1).jpg

I rolled right off the lift ramp to a section of pull down seats for seniors or people in wheelchairs.

If there no one was using the seats, cyclists were able to park and tie down their bikes in front of them.

(There was a sign that clearly said they may be asked to move them if someone needed to use the seats)

I opted to stay in the wheelchair with my back to the wall of the car.

 

The bathroom was immediately to my left.  It also was wheelchair accessible, complete with a transfer seat and multiple safety bars.  I can’t speak for the position of the bars etc, as I mentioned in my last post.  I pulled as close as I could get, stood on one foot, and pivoted.  The location of the bars worked for me. 🙂

Getting INTO the bathroom was no problem.  For ME though, getting out proved to be a different story.  Again, the damn legs on the wheelchair….smh   Let me repeat that first piece of advice…. Know your equipment!!!!  I took the legs off the chair and maneuvered out of the bathroom wondering how I had gotten in there in the first place…

Check out the legs on this baby

From the front, they don’t look that cumbersome, but the side shot shows that with the legs attached, my wheelchair is as long as the kitchen table.

The train ride itself was smooth and a bit nostalgic for me.  Although a lot has changed since I rode the train to college in Chicago 20 years ago,  (they now have a rush hour QUIET car instead of a BAR CAR). The stops and sounds of the train were the same, but the scenery was so different.  I had forgotten how many times the conductors punch tickets, and that they called out the upcoming stop.

I spent most of my time talking to one of the two conductors and “people watching”.  There was a tiny altercation between two of the cyclists because one dumped the other’s bike while trying to retrieve his own, but it was over quickly.  In fact, if I made any recommendations to Metra, it would be maybe a bike rack instead of stacking, but who am I?

When the train pulled into Union Station, I waited until 90% of the people were off the train before heading for the door.  The conductor set up the lift for me, which again went very smoothly until I tried to roll off.  The “gate” that keeps you from rolling off the lift was stuck and neither of us were really sure how to operate it.  Eventually it opened and I was on my way.

Second piece of advice- allow extra time and be patient.

Rolling into the station was a work out for my arms, but it was doable.  I’m glad that I waited until the train was almost empty, because I didn’t feel rushed as I SLOWLY rolled inside.  I had plenty of time to go outside, find something to eat, and explore the different levels of Union Station.  Although all levels of the station could be accessed while in the wheelchair, the “general” signs were vague at best.  (in my opinion)  Several times I would follow a sign to go somewhere and end up at stairs or an escalator.  union station (5)

If I wasn’t able to backtrack on my own to the nearest ramp or elevator, there were plenty of people to ask for directions, both travelers and employees.

Let’s talk about ramps for a minute…. First of all…..

THERE ARE MANY!!!!

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a narrow hill road inside the forest

The more I used them the steeper they began to appear.  I was literally chanting “I think I can, I think I can” as I was climbing up the last few.

Believe it or not, going DOWN the ramps gave me more trouble.  I NEVER thought about the rug/wheel burn on your hands going downhill.

*Advice alert*— If you are “driving” a manual wheelchair….WEAR GLOVES!!!  Apparently they sell finger-less gloves for exactly this purpose.  Bonus tip- carry hand sanitizer with you, my hands were black…..

union station (4)

A visual reminder to wear gloves

For the most part, even though everyone was too wrapped up in their own objectives to notice things that were happening around them, only a small number of people almost ran into me.  Those that did were quick to apologize.  Except  for the girl that turned on a dime, and tripped over my legs in the process, causing her drink to go everywhere.  I’m going with… Karma…she didn’t even apologize….smh.

I found that if I followed somewhat closely behind someone going in the same direction, even though people didn’t see me, they had already sidestepped the person they could see in turn missing me.

As I waited in the “assisted waiting area” I received a call from “T”.  She yelled, “This hotel is NOT going to work!  I can’t even get into the bed it’s too high.” I responded, ” UM what do expect me to do about it?”  Followed by, ” Ok, then look for another hotel in the area.”  I know that I said I would tell the truth, the whole truth….. but I would have to write an entirely different long winded post about the rest of that conversation.  In short though, I told her I couldn’t help my train was boarding and to let me know what she figured out.

Boarding call for Amtrak 370 from Chicago to Holland Michigan

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Although their website says “Redcaps” (people employed by Amtrak wearing red shirts) are available EVERYWHERE to help people with mobility issues and with luggage, the first time I actually saw them was standing right in front of the platform.   In fact, they were all in my way, barely moving as I rolled out to the platform.  I am glad that I had the foresight to figure out how to my carry a bag myself because no one was eager to assist.

*Advice alert*  pack only what you need and/ or can manage on your own

I rolled down the platform until I saw a conductor who told me where he would be setting up the lift.

Boarding with the lift was a piece of cake until I tried to fit through the door.  DAMN legs….grrr.  Once I took them off it was no problem.  Handicap seating was immediately inside the door of the car, on both sides of the train.  There was even a luggage compartment on the floor that I could reach.

Once the train departed, I decided to sit on the Amtrak transfer seat instead of the wheelchair seat.  I shouldn’t have.  While sitting in said seat I was traveling backward.  It took no more than 20 minutes for me to remember why I don’t do backward.  Yes I hurled :(, but yay I made it to the bathroom. 🙂

Once that nasty business was finished I tried to roll to the Bar or cafe car for some ginger ale, only to find out that the wheelchair would not fit.  It was close.  😦  Plan B.

I thought I would try to distract myself from my stomach unhappiness by posting an update on my Facebook page, msgracefulnot.com.  I did not expect to see this video appear. …… and the flood gates opened…….  (If you are new to “my world” the video is of my recently deceased GSD, SNUFF.)  Back to the bathroom.

Round 3

I sent “T” a text to see what she decided to do about the hotel.  She called instead of texted me to complain for 20 minutes.  Her friend helped her into the bed  before she left, and we would indeed be staying there.  I said, “Okay, see you at 11” and hung up the phone.  As I sat there reviewing the days events in my head, I decided to walk to the Bar car.  Yes I WALKED to the cafe and justified it by telling myself that I wouldn’t “learn” anything else for the next few hours anyway.  I would just resume my test when I was going to detrain, disembark, get off…not sure what it’s called.

amtrak (16)

When I entered the bar car, I was informed that the closest thing they had to ginger ale was CLUB SODA.

Never having tried it before I decided to give it a try.

It is NOTHING like ginger ale……. ewwww  😦

After I returned to my seat, I stopped the conductor as he passed by to see if he would mind answering a few questions for me.

He didn’t mind.

I briefly explained my “test” and told him that I was not able to fit through the aisle with my wheelchair to go to the Cafe Car.  I asked,  “What would someone in my position do, especially if they were on a longer ride than me?  He responded, “Well people in wheelchairs generally don’t travel alone.”…. My FACE said, “and then you met me.”  He said if someone needed something from the CAFE, he would happily get it for them…. shrug ok?

I have several suggestions for Amtrak should they ever decide to update their handicap accessibility information.  Cafe access is on my list, if I ever do send them my suggestions, I will provide a link here if that happens.

My conclusion of whether or not the trains are accessible for wheelchair travel is Yes, they are.  I am not saying that it is easy or super convenient, but it is doable with enough planning.

2000 words already?  I have only just begun….smh  I am going to end here for today.  If you are interested in hearing about all the dramatic parts of the trip, please check back next week where I will tell you about the drunk guy harassing me, how I broke my finger, and why I almost missed my train on the way home.

Thank you all for spending your time with me.  Maybe some of the information I share is useful?  I appreciate all of your comments and feedback!

 

 

 

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.