Mission failed. Objective accomplished

My mission- in my own words

“Travel from Northern IL to Holland, Michigan and back without the use of my legs.” 

My objective  

To not only test if the Amtrak and Metra were handicap accessible, but to see if I could make it there and back in a wheelchair.

Wait a minute, the mission and the objective sound the same?

I thought so too, but the trip proved to me that I was sadly mistaken. The phrases “being in a wheelchair” and “not having use of your legs” are NOT synonymous.  I stated in my last post,

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.

I also made the statement that….”I do agree that just because something SAYS it’s handicapped accessible, doesn’t mean that it actually is.”  While I did use the wheelchair, I did use my legs to pivot to the toilet once I was as close as I could get the chair.  I also climbed in bed ‘normally.’  I did not pull myself onto the bed.  I stood up and climbed in.  No wonder not everything that says handicap accessible is handicap accessible, how can you cover every possible limitation that someone might have?

Because I view every mistake, or experience as a learning opportunity,  I’ve been doing alot of reading and research about different levels of disability and the laws and services that are in place to as the ADA says

give civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications. The ADA is divided into five titles (or sections) that relate to different areas of public life.

Another thing that I found interesting is an article at https://www.apa.org/pi/about/newsletter/2015/11/handicap-disabilities, which describes the difference between disability and handicap.

Defining Disability

First, what does disability itself mean? A disability is a condition or quality linked to a particular person. A disability is present when activities usually performed by people (such as walking, talking, reading, learning) are in some way restricted. Thus, someone with congenital blindness has a disability, as does someone who must use a wheelchair for mobility purposes. Other disabilities are not necessarily apparent, for example, acquired brain injury or chronic depression.

Defining Handicap

In everyday life, some people use the term handicap or refer to people with disabilities as the handicapped. The first term — handicap — refers to an obstacle imposed on people by some constraint in the environment. Older buildings that lack ramps for wheelchair access, for example, present a handicap for people who use wheelchairs. In this case, a wheelchair user is handicapped — her mobility through use of her wheelchair is disrupted — by the missing ramp. However, she actually is not handicapped herself; rather, the handicapping element is in the environment, not within her.

So while I accomplished my ultimate goal or objective by proving that I could make it to Michigan and back in a wheelchair,   I did not prove that EVERYONE in a wheelchair could make this trip.  I’m not saying they can’t, but I am saying that I didn’t challenge myself in this way.

Later this week I will share the story in a  “Grace style” post telling you THE TRUTH, THE WHOLE TRUTH, AND NOTHING BUT THE TRUTH about my “adventure”. Einstein gave me one instruction before I left.  HE said, “Don’t break anything”…. I laughed.

I shouldn’t have.  😦

**Spoiler alert**

The trip CAN be made by someone without the use of their legs.

 

 

 

 

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.

 

 

 

 

Where there is a WILL there is a GRACE?

You’ve all heard the expression, “Where there is a will there is a way” correct?

Thing One: “Mom, mommy, mother-dearest?”

Oh shit!….

Me: “I mean yes dear, what’s up?”

Thing One:  “Z and I were wondering if you would make a road trip to Michigan and pick up Z’s mom so she could come stay with us and see the boys?”

Me:  “ARE YOU FRICKING KIDDING ME?!?!?!?”

Thing One:  “You don’t have too!!! It’s just that last time she came down here, her “friend” charged her $400.00 and that’s just insane.”

Me:  “Sure, I will do it for $200.00”

Thing One: “MOM!”  ” Seriously, MOM!  Of course she would pay you for gas and stuff, but she can’t afford that, and this way you could even earn a little cash.”

Me:  “Like I said $200.00.”  😀

Thing One:  (shaking her head) “Just think about it ok?”

STUPID THOUGHTS!!!!!!!!!!!

Treat other people like you want to be treated Grace.

How would you feel if you were so far away from the kids or grandbabies?

Hell you couldn’t handle being away from them for the week you were in Italy……

LOOK at those faces!!!!!!!  DAMMIT!!!!!

boys

Before I continue, let me provide a bit of background information.  Z’s mom is in a wheelchair full time and doesn’t drive.  She lives 300 miles away from the kids and I.  I do have the time and the ability to make the trip, but the last time I tried to do something nice for Z’s mom…. I was left feeling very frustrated and vowed that I would never go out of my way to help her again.

After playing devil’s advocate with myself for more than an hour, I called Thing One again.  I told her, it would take me about 5 hours each way to drive there.  Realistically I COULD make the trip in under a day, and it would cost me about $50 in gas and tolls each way, but I really really didn’t want to do it.  Besides, I got a speeding ticket a couple weeks ago, which would make taking a long road trip all the more stressful.  (watch your speed Grace, watch your speed!!!!!)

The next day Z’s mom, (T) called me.

T: “Grace, while the kids were here last month they mentioned that you might be willing to help me get from Michigan to Illinois and back so I could come visit the boys.  I would be willing to pay you.”

Me:  “Have you considered taking the train like Z did when the kids were dating?”

T:  “I did, but Z said the Amtrak is not handicap accessible.”

Me:  “hmm, that surprises me in this day and age.”

T:  “Yeah, I know.  I really miss them and I am trying to figure out how to get down there.”

Right in the feels 😦

Me:  Let me look into it more and if it’s not handicap accessible, I will come get you ok?

T:  “THANK YOU!!!!”

Before we even hung up the phone, I headed to the fridge to grab a beer.  I opened google and typed  how the hell do I get out of this?!?!?!... “Is _______ Amtrak station handicapped accessible?”

Inkedaccessible_LI

It was!  Yay end of story?!?!!………….. yeah right.  Do you not know me by now?

This is where the real story begins.

I called T back and told her what I had found out. She still didn’t sound convinced.

I do agree that just because something SAYS it’s handicapped accessible, doesn’t mean that it actually is.  So now we go back to the whole treat other people like you want to be treated thing.  I can’t ask someone to do something that I wouldn’t be willing to do myself, and to be honest I have never traveled full time in a wheelchair.

As far as I was concerned the only way I could know for sure, would be to do it myself.  I asked Einstein to “hold my beer” while I called the kids.  I told them that if they were willing to cover my travel expenses, I would be willing to make the trip to Michigan to meet her, and to travel back with her all the while remaining in my wheelchair.

The kids thought it would be a great idea and would make T more comfortable taking the trip by herself in the future.  I called her back and she said she was “all in”.  So next week I am heading to Michigan.  I am still working out the details, which (spoiler alert) are a bit unsettling.  I will share my plans before I actually leave and of course I will write about the actual events of the trip when I return.  In the meantime……

Have you ever realized that most of my travel plans take shape when I am trying to help a friend but have also been drinking?  Definitely many  hold my beer moments.  If you would like to read or revisit some of my past adventures, please click on the following links:

Texas Trip

Boston Trip

Italy Trip

Wish me luck!

 

 

 

 

 

Calling all Dog owners

Many of you know that Snuff is no longer with us.  I knew it was going to hurt like hell, but I had not counted on the additional pain of watching D.O.G. mourn Snuff.  FUCK!!!!

How do you help an animal grieve the loss of another?

When we got home from the animal hospital that night, D.O.G. was laying on the towel that snuff had been laying on that night.  She wouldn’t move.  She wouldn’t go outside, she wouldn’t eat, and didn’t even want to be cuddled.  Like me, my dogs are wanderers or travelers.  They have beds, bowls, and favorite spots at my house, Einstein’s, and at Thing Two’s.  Even though we don’t always sleep at the same house, the dog’s have never been apart.

The next morning, when I moved my car keys, D.O.G. popped up and ran right to the garage door.  Was she looking for Snuff?  Did she think Snuff was at my house, or did she just want to be home?  Did she know snuff wasn’t coming back?  Did she hurt as bad as I did?  So many questions and emotions.  I decided to take her home.

When we got home, she almost tripped me to get into the house where she immediately went room to room in search of….?  When I let her outside, she went ran the perimeter of my yard as well.  Once she was worn out, she crawled up next to me in bed, and wouldn’t leave my side.  I’m not sure if being there helped D.O.G. or not, but I was not ready to be there without Snuff, so we went back to Einstein’s that night.

Thing two asked if she could pick up D.O.G.  the next night after work.  Her house would be the last place D.O.G. would associate with Snuff, so maybe she could begin to understand Snuff wasn’t coming back.

Have you ever had to help one pet grieve the loss of another?  What things have you found make it easier?  Were there things that didn’t help? I have tried to keep our routine as similar as possible (feeding time, walk time, play time etc)  Until a few days ago, I had not removed Snuff’s dishes or kennel and D.O.G. spent most of her time lying on Snuff’s bed.

To complicate matters, I found a flea on D.O.G.  Are you freaking kidding me?!??!?  I have had dogs, my entire life and have NEVER had to deal with fleas, ticks, mites etc.  So I turned to Google.  Big mistake!  Google had me convinced that we all needed to shave all hair from our bodies and that I had to burn my house down.  ( Ok that was only my initial reaction…but ewwww)

What I HAVE done after telling Einstein and Thing Two, is steam clean my furniture and carpet.  I have bombed (Raid flea fogger) my house 2 times, and washed all bedding and toys in hot water.  (this is the reason I broke down Snuff’s kennel) 😦  I have flea dipped D.O.G. and check her daily but I am overly anxious that it is not enough.  Have you ever had to deal with fleas?  What steps did you have to take to be sure they were gone?

I know I have alot of questions in this post.  I am feeling very overwhelmed at the moment.  I appreciate any suggestions you might be willing to share.

On a final note, Snuff’s ashes have been returned to me.  In addition to putting them in an urn, Einstein put some in a necklace for me and Thing Two and put some aside to be added to the tattoo I got of her paw print on my right leg were she always stood.

Time of Death 10:30 pm 06/15/2019

I don’t know if you remember, back in March of this year, we received the devastating news that Snuff had Hemangiosarcoma CANCER.  The vet performed surgery to remove her ruptured spleen, but the cancer had spread too far.  The vet said that we would lose her within the next few months.

While I am grateful that I had 3 more months with her, THEY WEREN’T ENOUGH.!!!!

Snuff took her last breath at 10:30 pm on Saturday.

As I looked at this “collection” of the snuff’s things this morning, thinking this is all I have left of her, I realized that I was wrong.  My heart is full of love for her, my brain full of memories.

So now Snuff is gone, but she will NEVER be forgotten!!!!!!!

So many road trips together

personality

“Helping” with the yard work

head cock 2

 

So

Much

Personality

 

 

 

 

 

 

 

 

 

 

 

Snuff,

I hope you know that it goes without saying that I would hold onto your forever if I could.  Watching you these last few days, I know the time has come that I have to let you go.  I can’t watch you struggle to rise each time I leave the room.    I feel that you are only holding on to make sure that we are ok.  We aren’t.  It hurts like hell, but worrying about you being pain hurts more.

0617191142a

Though you will no longer be by our sides, you will forever be in our hearts.

 

Rest in Peace MY GIRL