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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It's Just a Phase

The past few weeks have been a real transition phase for me and I have had a hard time writing about it as my ability to function independently continues to slither away.    I have now officially been declared ‘disabled’ by the United States government.  While this means some physical assistance and a steady, if poverty level, income, I am overwhelmed by the finality of the label. 

I am grateful for the fact that this benefit does exist, but it is tough to adjust to.  Even after six years, I am still relatively shell shocked by the whole chronic illness thing.

One very exciting development that occurred, however, is an opportunity I was given to write for the National MS Society Blog.  My first post, which I considered pretty simple and matter-of-fact, was so well received that at one point I was literally reading the comments with my mouth hanging open, I was so flabbergasted by the response.  With over 500 “likes” on the MS Society Facebook page and over 120 comments, I am humbled at the impact my words have had on readers, who apparently really related to my post on “The Five Worst Things I Have Done Since Being Diagnosed with MS” .  I’ll be contributing to the blog once a month.

Otherwise, trying to keep from being too wretched, I have been doing a lot of sewing, experimenting with projects and techniques I had never tried before. 

I made fabric texture books for each of my youngest grandchildren.  

Maddy's was first, so it is the the one I worked the kinks out on.  Also, it was well played with before I remembered to take pictures.

I haven't sent this yet, so don't tell him.  :)

I finished two memory quilts for a dear friend using squares cut from her late father’s shirts.  I am working on a third on for her brother and pillow shams to match for her nieces.

I am learning to make little things out of wool by needle felting.  This is a process that requires stabbing a clump of wool three hundred kabillion times over and over with a long barbed needle and shaping it into…something.  I am proud to say I only stabbed myself once.  Ok, twice.  Alright, alright it was really four times, but I only drew blood once.

The first one I did.  Got a little acromegaly going on, but I was just following the pattern.

Just finished this little bunny.

I learned how to make fabric yo-yos, little circles of scrap material that you then fashion into objects no one would want in a million years quaint crafts, such as table covers or toddler toys.  I chose to make a little caterpillar for my grandchildren because it was one of the few patterns that did not require about one thousand little circles, just a mere one hundred each.   

I also did a lot of embroidery, am experimenting with watercolor quilting (using graduated colored squares for effects), made aprons for my girls and my granddaughter (Paris-themed for the new bride who honeymooned in Paris and cupcake fabric for mommy and granddaughter, as mommy is a cupcake aficionado) and I’m making new curtains for my bedroom.    I’ll post pictures next time.  I also have joined a new site called Craftsy, where people post pictures of their projects.  It is fun to see what other people are making.  There is an incredible amount of talent out there!!  You can find my page here.

                                                                                                         






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Empowering People With Disabilities

Today I am taking part, with over 300 other writers, in an online event to raise awareness of what it means, and what it takes, to empower people who are living with disabilities.

Like so many others, I never expected to fall into this Club, one of any number that no one wants to belong to. People we encounter everyday all have their own struggles and heartaches and challenges, it is part of life. For most, hardship is occasional and short lived. For those of us with chronic conditions or permanent disabling injuries, daily living equals confronting limitations minute by minute.

As Multiple Sclerosis steals more and more from me, it has become harder to do things I completely took for granted my whole life. Getting in and out of bed, getting dressed, taking a shower are all normal activities of daily living that were done mindlessly and effortlessly before MS, but now all take exhausting effort. Once those things are done and I am finally out the door (doing an inventory in the car to make sure I haven’t forgotten something and I actually have all my clothes on) I have to then decide what am I going to use to get around. Will a cane suffice? Is it too hot for that? Then I’ll use my walker. Unless I have to walk for more than 10 minutes at a time, then I need the wheelchair. The cane and walker I can manage by myself. The wheelchair, I need someone to help me load, unload and push me. I can’t push myself because I have the added bonus of an almost useless right arm following a shoulder fracture.

My doctor has ordered a power wheelchair for me. We have already begun the battle with the insurance company to cover it. But my co-pay for the new chair would be over $1000. I don’t have $1000, so the whole thing is moot. Additionally, a power chair is so heavy I need a lift or ramp to get it into my SUV. I can’t afford those things either and they are not covered by insurance.

Are you still with me? We haven’t even left the driveway yet.

I was laid off in February. So if it is a job interview I am heading for, I have to weigh the pitfalls. Showing up with a cane or walker, how low on the list do I drop? It is clearly pretty far, as, despite a stellar resume, I have received no offers to date. But it is impossible to prove discrimination.

I always have to consider where I am going and how I will negotiate the landscape there. Are the doors easy to operate? Are there stairs? Is there a convenient bathroom?

Remember, we’re still in the driveway.

This is our daily reality.

Once out in the world, thanks to the Americans With Disabilities Act, there is more disabled access than ever before. Naturally, it is a work in progress. It is impossible to retrofit every existing structure in the United States to accommodate a variety of disabilities. My philosophy is one of patience and reasonableness. To be a gadfly on this issue would not serve me, or anyone with a disability, well. I see how people like that are treated, how they are resented, how they are not taken seriously and how they ultimately damage the cause they are trying to promote.

It is essential to recognize ADA compliance as an important issue that effects us all, not something that a few whiners with a sense of entitlement are carrying on about. It is important to be taken seriously and to be understood, because there still is so much to be done. And this needs to be a concern for everyone because every human being has the potential to become disabled.

For one thing, people need to be taught how to interact with people with disabilites , to behave just as they do with everyone else. This was emphasized to me when I went to the theatre with my friend last week. People, when they didn’t look away, gave me pitying smiles. Several leaned over, almost appearing as though they were going to cluck me under the chin, and asked if I was enjoying the show. “Very much so!” I would reply with a frozen smile. After a few times it got a little comical. Have you ever been asked that question by a complete stranger?!? Don’t be artificially nice to someone who is disabled. It is insulting and creepy.

I was raised in an Irish Catholic tradition of self effacement and a firm belief that pride goeth before a fall. Combine that with 1950’s traditional gender roles and chronically low self esteem and I am not a person who is comfortable with the word “power”. Or with asking for things I need.

On the other hand, I also have a deep vein of stubborn rebelliousness that has bubbled up my whole life, making for a constant dichotomy that has both kept me strong and gotten my ass in a heap of trouble on occasion.

This wacky combo allows me to be patient with the barriers that are place in front of me, but tough enough to challenge things that can clearly be changed.

This would be my wish list of disability awareness and empowerment:

• People with disabilities are just like everyone else. Treat us that way. Don’t treat us like exotic objects or creatures needing pity. We used to be you. You could be us.
• Don’t refer to the accommodations given to someone with a disability as “perks”. We don’t want special favors, or “concessions” as another person with a disability referred to the accommodations that are occasionally necessary. We just want to live our lives as normally as possible.
• Remember, we would gladly give up that parking placard for the capacity to walk again.
• Don’t make assumptions about a disabled person’s abilities. Someone in a wheelchair is most likely to be just as cognitively aware, if not more so, than everyone else. Don’t assume they are simpletons and talk to them like they are 5 years old.
• Don’t dismiss us from the job market. I am desperate to work again. But prospective employers see my limitations, not my years of experience. They lose the fact that I excel at trouble shooting and problem solving and, with my work ethic, would be an asset to any employer.
• If you are aware of an access issue either in your place of work or any other building, bring it to someone’s attention politely and with the assumption that it is either already under consideration or has not been an issue before. Do not behave as though it is a deliberate attempt to keep disabled people out. Like with anything else, you get more flies with honey than with vinegar. And yes, it is the law, but sometimes making it work takes an incredible amount of time and effort.
• Be sensitive to the architectural integrity of places that may never be capable of becoming completely accessible, such as historical buildings. People with disabilities do not want to destroy the historic legacy we have in the name of access.
• If the access we have is not ideal, such as is only achieved through the kitchen of a restaurant, don’t take it personally. Assume that they have done the best they could in terms of the architecture and be happy for the access that you wouldn’t have otherwise.

Finally I would implore, be an advocate for the disabled. Empowerment is something everyone should feel, no matter what their status. Awareness takes time and it takes teamwork. If you don’t already know someone with a serious disability, odds are you will. An accident or illness can put you there with the speed of light. So this is an issue for all of us.

Thanks. Just by reading this, you could make a difference.