Showing posts with label wheelchair. Show all posts
Showing posts with label wheelchair. Show all posts

Sunday, September 23, 2012

Happy Bruceday

For our birthdays (fourteen years apart in life but two weeks apart on the calendar), my sister Cathy and I celebrated by going to see Bruce and the E Street Band play their first concert in the new MetLife Stadium here in New Jersey.  My daughter sweetened the deal by hiring a car to take us and my power wheelchair to the concert!  Woo hoo! 


It proved to be a…let’s see, how can I put this?  It proved to be an eventful evening.

My mobility is extremely limited, so it is really hard for me to get ready to go out.  Taking a shower and getting dressed exhausts me.   And since I rarely do go out, I was very anxious, nervous about getting around ok and worried about the level of pain I am struggling with.  Waiting for the car to pick us up, I was a neurotic mess.  My sister was talking me down, standing in the kitchen looking out the window when she says “Did you order a white stretch limo?”  And I start laughing because I think she is making a joke and she says “No, really, that’s what’s out there.”

So I pop up like a demented jack-in-the-box and to my horror I see that is exactly what is out there – a vehicle that we could never fit my power wheelchair into no matter how hard we tried.  I lurch out to the driveway, freaking out.  “What happened to the car I reserved?!?”  I cried.  The driver was like “What car?”  I told him we had to transport a power wheelchair and he said, oh no one told him that, but don’t worry, we’ll fit it in.

Then he saw it.

Acknowledging there was no way to fit the wheelchair, he started calling his office.  After forty five minutes of hemming and hawing, it was finally determined that I would have to go with my manual wheelchair, which meant I would be uncomfortable all night and my sister would have to push me everywhere.  By that time I had calmed down [somewhat] and was just grateful I was going to the concert.

On our way:


Cathy, innocently thinking the worst was behind us.

The rest of the limo.  We sat on the back seat giggling like mad.


Once on the road, he drove like a maniac.  We were plastered onto the back seat by the speed of the car.  Cathy kept murmuring “We’re gonna die.  I know it, we’re gonna die.”  And she’s the calm one.  I was actually relieved at first when we hit traffic, because it meant he had to slow down.  Or so I thought.  He would speed up to the car in front of us and then slam on the brakes, speed and slam, speed and slam, lurching the car repeatedly until I was so car sick I thought I was going to throw up.

At the stadium, which he had never been to before, he had no idea where he was going or where he was allowed to drop us off.  He finally unloaded us about a half a mile from the entrance we had to use and my sister had to push me all that distance, over uneven asphalt with few curb cuts.  Then I realized in the rush to get out of the car, as he had been blocking traffic, I had left my camera behind.  I was TICKED.

But we were here!!  We let all the car stuff go and were determined to have a blast!  We had floor tickets for Bruce!  It didn’t get better than that.  We gave in our tickets, went through security and got to the wheelchair section of the General Admission floor.  A staffer snapped “Where are your wristbands?!?”  Wristbands?  What wristbands?  “You need to get your wristbands at the white tent outside.”  Cathy goes, “I am not pushing my sister all the way back outside and then back again!”  He eyeballs me and replies, “Ok, you can leave her here, just take both tickets, they’ll give you her wristband.”  So Cathy goes and spends 15 minutes looking for the white tent.  But it actually was YELLOW.  He had told her the wrong color.  Then they wouldn’t give her two wristbands even though she explained the circumstances and she had two tickets.  Finally she got a hold of a manager who gave her two wristbands and initialed the tickets.  Inside, they stopped her and examined the initialed tickets as if they were classified government documents related to national security.  They would not let us sit until they verified the initials were valid!!  Finally we got situated on the platform, with strict instructions as to how we were to stay positioned.  We were exhausted, and the concert hadn’t even started yet!!

But what a concert it was!!  Phenomenal!  Bruce, 63 years old on September 23, played almost four straight hours.  He rocked, he mugged, he goofed around, but he was somber too.  He played a few more ballads than usual and gave some introspective intros.  He talked about the family ritual of going to Jersey Freeze for ice cream after dinner in the summer.  We did that too.  I often wonder if we were ever there at the same time on a hot summer night as children.  He told of his memories of his late father taking them to the cemetery to put flowers on his aunt’s graves.  My husband is buried in that same cemetery, not too far from Mr. Springsteen.  There are so many connections.  Bruce talked about how the older we get, the more ghosts walk with us.  As children we are afraid of ghost stories.  As we age, it is a comfort to have the company of the spirits of those we love.  That truly resonated when they showed a slide show of Clarence during Tenth Avenue Freeze Out.  At the line “…and the Big Man joined the band…” everything stopped and all those memories of Clarence flashed across the screen.  In some pictures they were so young!  It was really moving.  Then they started up again, clearly missing him but happy to have had him in the band.  Clarence’s nephew Jake is playing sax with the E Street Band now and he is fantastic.  And just so cute.

Bruce plucked a little girl from the audience to join him on Waiting on a Sunny Day.  She was absolutely adorable, he was hilarious, being a big ham, and it turns out she was the daughter of a friend of my sister’s.  Here is the video her dad took:





My sister went to get a drink and on the way back spoke to one of the staff about being able to get our car closer to the stadium to pick us up.  At first they said no, but she pushed the issue.  While the concert was going full blast, one of the staff came and screamed in my ear that they would get a cart to drive us to the car.  So I screamed back in her ear that was impossible, there was no way I could get in and out of a cart.  She got her team leader and he came over to me and screamed the same thing.  I was getting really upset.  I screamed back at him that I had paid a lot of money for these tickets and I wanted to enjoy the concert.  I added there was no way I could do the cart thing and I would discuss it after the concert was over.  I was close to tears and I was shaking with frustration and embarrassment.  He threw up his hands in an exaggerated gesture as if to say “This woman is impossible!” and that truly distressed me.  Bruce was about to start an encore, but this dispute had really taken a lot of the fun out of it for me.  Ironically, the band played something like six songs for an encore, so it was almost another hour before the concert was over.

By that time the team leader guy was gone and the staff member who oversaw the handicapped area of the General Admission section said to us, I will take you to your car and then said something else that made it sound as though they were going to let the car pull up.  But that was not the case.  She pushed me as far as the stadium border and then Cathy had to push me the rest of the way, a total of a half a mile again.  I gave the girl my card and I advised her that I was going to pursue this, as it appeared they were not complying with the Americans with Disabilities Act.  Not to mention, with very few exceptions, their customer service was appalling. 

It took a while to coordinate with the driver of our car in the parking lot, but finally we were on our way home.  There had been elements of the absurd and the stressful and the stadium fascists staff worked hard to make things as difficult as humanly possible.  But nothing could take away the pleasure I got from the great company of my beloved sister and an amazing concert by Bruce and the E Street Band.  


9/19/12  Saed Hindash/The Star Ledger

Next: The Limo Company and the Stadium Have Some Splainin’ to Do


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Friday, August 13, 2010

The Conference

So. About BlogHer.

I went into the city last Thursday, a day early, in order to get started bright and early on Friday, when the conference officially began.

This is how I spent my time getting ready for four days I would be away from home:

Monday – did nothing
Tuesday – did nothing
Wednesday – did nothing
Thursday – ran around like a lunatic

By the time I got into New York, because I had totally overdone it, I was doubled over in pain and exhaustion. The SheWrites get together in a swanky bar downtown? Scratch. All I could do was take a load of pills and fall face down on the bed.

Thanks, Multiple Sclerosis. Well, technically, thanks you procrastinating knucklehead. But if it wasn’t for MS, I just would have been tired, not incapacitated.

On the plus side, we had lined up a last minute third roommate, a delightful woman from D. C. Debbie blogs at Legal Speaks and is a fascinating person.

Then there was Hurricane Danielle. Except that I saw her sleeping with my own eyes, I never would have believed it. That child did not stop for one single, solitary second. She won more stuff than seemed humanly possible, including two laptops. And she found swag under every rock and in every cranny. Evidence:



So I started out with two wonderful, considerate, thoughtful partners in crime. We all have totally divergent backgrounds and interests, but we really hit it off.

Friday

The conference opened with two separate breakfasts, one for all attendees and one for women attending for the first time. Comic relief: Danielle kept running into the original roommate who ditched us and continually practiced giving her the evil eye.

The breakfasts were sumptuous, no kidding, and the welcome was warm. Everyone was happy to be there as we headed off to our first workshops.

There were three workshop blocks each day, each segment containing multiple tracks: Bloggers as Change Agents, Passions, Personal, Professional, Geek (tech stuff), Writing and Job issues. The subjects were very comprehensive, with sessions such as Creating Tangible Social Change, How to Build a Community Around Your Cause and Writing Inspiration: Stoke Your Creativity.

I found that the sessions I was most interested in were the writing ones, and that was the track I pretty much stuck with. It was awe inspiring to be in rooms filled with women who had published books already (one panelist actually even had one of her books made into a movie) or had projects in the works, most resulting from blogging.

I met many wonderful women, but I was especially happy to meet Kamy Wicoff, the founder of SheWrites, a marvelous online community for women writers of all sorts, not just bloggers. That was the party I missed on Thursday night. She was incredibly down to earth and friendly. Of course, on the site I announced I had been thrilled to meet her and spelled her name wrong in my gushing comment. Mortifying. But honestly Kamy! You have K’s where there should be C’s and C’s where there should be K’s. Way to addle a girl’s brain!!

Friday evening was punctuated by a frantic call from my sister regarding my parents, whose train has been coming off the tracks for two years now, a slow motion horror show. The situation was deteriorating and would get even worse over the next days.

My perspective of the conference was completely affected by having to use a wheelchair. The wheelchair determined where I sat in the dining room or at a workshop. Since all the meals were buffets, it determined what I ate and drank (although the staff was VERY helpful; one manager even made me a cup of tea and brought it to my table for me). As the elevators were in banks, there were only three serving the conference floors and the twelve floors above, where our room was. At busy times, I sometimes had to wait through five or six elevators before there was one with room for me and my chair. The second floor of exhibitors was completely inaccessible to me.

Without the chair the conference would have been impossible. But with it, it was still daunting and, at times, the chair was very marginalizing.

More to come...



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Sunday, March 28, 2010

MS Fund Raising Walk 2010

Three weeks from today, Sunday, April 18, 2010, friends , family and myself will be taking part in the annual MS Fund Raising Walk. It can be a fun day. There is a party atmosphere, we walk along the boardwalk and the company is great.

But it is an event I would gladly pass up. Because it is an annual reminder of the fact that I have MS and that this incurable disease has devastated my life.

Of course I am not the only one afflicted with MS. The walk is also a sobering reminder that as bad as it is for me, there are others who are even sicker. I can still walk some distances, although I need either a cane or a walker. There are people I know with MS who have lost that ability, so to a certain extent I am lucky. I do need a wheelchair for any length of more than a block or two. I hate it, but at least it allows me to get places.

MS has stolen much from me. It has distorted my relationship with my children, who are often required to be caregivers rather than simply my kids. The same goes for my friends, who are wonderful and generous and solicitous, but I would rather be a plain old friend. It has taken away the ability to do anything spontaneously. I have to always worry, are there stairs, where is the bathroom, will there be someone to help me if I need it? I was just laid off from my job. How much of their decision had to do with the fact that despite being one of their top producers, I was a very expensive employee as far as health insurance goes. It was a self insured company. My health care costs run in the thousands every month. I am a liability to a small business. There are wonderful jobs out there that I am fully qualified for intellectually and professionally. But I can’t travel easily anymore. I can no longer maintain the pace I demanded for myself as a department head. So my hard earned career, which was going nowhere but up, is now in tatters.

I am in pain all the time, either from muscle spasms or from haywire nerves. So I tend to do things less and less. Running an errand is a project. It is a struggle to even get dressed.

The disease progresses incrementally. There is no predicting how far or how fast it will go. Statistics say most people with MS will have their life shortened ‘only’ by about seven years. When the time comes, how much will I want to have seven more years? Or will it be sooner? As immobile as I am, will I develop a pressure ulcer? I am on a powerful and dangerous medication to slow down the progression of the disease. Will I contract an infection that my immune suppressed body will not be able to fight? Will my next stumble and fall (for I am always stumbling and falling) be fatal?

Here is the thing: it is crucial to know the ‘me’ in the preceding paragraphs is EVERYONE with MS.

That is why the MS Walk is so important. The NJ Metro Chapter has an excellent rating as a charity. Almost 86% of the money they raise goes into programs for those of us with MS and into research to find a cure. There have been so many developments to treat MS in the past decade alone. That is thanks to fund raising for research.

Whether or not you live in the New Jersey area, I would love for you to be part of my team. You can be a Virtual Walker, collect donations and never have to set a foot anywhere. Or you can come join us on the Belmar boardwalk. Or you can make a donation to our team. I would be thrilled by any of those. This is the link to my team page:

http://main.nationalmssociety.org/site/TR?pg=team&fr_id=13121&team_id=204925

And if all you can do is wish us well and keep us in your prayers, I am incredibly grateful for that as well.

Thank you to those of you who have already made donations and for your beautiful messages of support. I am astonished when someone calls me an inspiration or brave. I'm just me. But thank you for thinking and saying such lovely things.

Thanks to all of you for reading my blog. And thank you for anything you can do to support the MS Walk.

Please leave any comments about your own experiences with the walk or with MS. I would love to hear from you.


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Friday, May 22, 2009

Bruce on Wheels

(Cover your eyes, Crotchety Old Man) Christine and I went to see Bruce, et. al. this evening. They are the best. He is such an entertainer and puts on a great show. So much energy! Everyone in the band looked awesome. And the play list was really eclectic, a great mix of old and new. He closed with Rosalita as an encore. Such fun. The soundtrack of my college summers. A local boy. A good guy. He’s not perfect, but heck, who is? He does a lot of good around here that people never know about.


I watched the concert from the handicapped area, sitting in a wheelchair. It was my wheelchair debut. I have given up so many of the things I love because I can’t walk very far anymore, I am deciding it is time to buckle (ha ha, no pun intended) and take advantage of wheels.

It definitely felt strange, awkward and uncomfortable. I was very self-conscious. And separated from everyone else, because my eyes are now at crotch level. Not the ideal anatomical area to start a conversation with. Or smile at. (My dear friend Marc hilariously points this out in his films at www.wheelchairkamikaze.com .) But parking was a snap. I would hold up my handicapped placard and we were instantly directed to close, plentiful parking. At one point I breathed to Christine “It’s like…magic!” And we both cracked up.

Everyone on the staff was very nice and helpful. It was fun when Christine raced me through the empty hall after the concert started and we went to the ladies, taking a turn practically on two wheels, the two of us giggling like mad. And how lucky am I to have a friend who is just so matter-of-fact about the whole thing?

But I have a lot to think about as I adjust to a new stage in my life.




A wheelchair. Who’d a thunk it?


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