You Know You Want to Look!

One of my past posts was entitled Longing to Fit In, in which I wrote that I longed to be in the “healthy mom/people” crowd.  (Which you can pretty much figure out on your own, but if you chose to read that post too, I’m not saying no!)

Anyway, Tracey from Just Another Mommy Blog (love that title!) had this to say:

“I’m glad you have this space… I just want to say that not all of us are looking with morbid curiosity or pity or anything bad. Some of us are able to look at a person in a wheelchair and not really “see” the disability.”

Personally, Tracey, I enjoy pity but apparently most of us disabled/chronics do not!

I started to write her back personally but realized what I started to write could be a blog in itself, so, thank you for that, Tracey!

I told Tracey that if she could look at someone like that, not see the disability, that she was pretty amazing.  (And I mean that in a sincere way!)

The thing is…even I always can’t, and I am often in a wheelchair or scooter of my own!

So, why do we look?

I don’t know all the answers and I guess I can really only speak for myself.

When I was well, I don’t know, you see a disabled adult or child and your eyes just GO THAT WAY, and I don’t know why I am so drawn to it.  But it does not mean that just because I looked, that I was thinking that person was a freak; most always I just feel sad and wonder what is wrong with that person.  I think that we who are in scooters or wheelchair, carry canes, etc. need to keep that in mind, that healthy people mean us no ill will, curiosity just gets the better of them.

Now that I am disabled ,I look at people using assistances and I just really want to know what’s wrong with them!  Maybe they have Lupus like me, or Fibro, or Chronic Fatigue!  I want to say “Me too!”  Sometimes I actually have and it’s been a good thing and I have found someone with a related illness!  I don’t know many disabled people in real life so it is sometimes nice to meet a fellow chronic!

How do I feel when I am stared at?  Like, I said, I remember how I stared or still do and why and I do not let it bother me.  Except when startled moms look at me riding a scooter with horror and quickly get their kids out of my way, fearing that I might run them down. (Which is probably wise, as I do find these scooters can be hard to drive sometimes and have crashed into displays, but never people.)  So I do feel bad when I scare moms and kids.

To those disabled who really still don’t want people to stare at them, I seriously tell them, don’t look at them! I usually take this approach, then I have no idea if people are staring at me or not!  This “don’t make eye contact approach” particularly comes in handy when I am putting up my handicapped placard around my rearview mirror, and what people don’t know is this perfectly looking healthy person is then going to get on the nearest scooter she can find!

If I have done anything in this post, I hope it makes healthy people realize that some sick people know you can’t help it and are even okay with it.  And I hope that those readers who are disabled have been made aware that people who stare at you are not necessarily awful, prejudiced people.

Why do you stare?  Or can you control it?  If you are disabled, does it really upset you?  Any “war” stories?

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An Hour to Kill on the Telephone

Inspired by Mama Kat’s Writer’s Workshop.

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Prompt 4.) You have an hour to kill on the telephone.  Who do you call and why?

With no offense meant to friends or other family members, the person I would call if I had the time, the energy and the health would be my cousin, “Denine”.

Growing up, there was a large age difference between my brother and I, and my other aunt and uncles’ children on my father’s side.  We lived in New Jersey and the rest of them lived in Connecticut, which furthered our “gap”.  We all saw each other about twice a year if we were lucky, something I truly regret.  Denine is about ten years older than I, which while you are growing up, might as well be a hundred!

I have a memory of her as a teenager, me as a little girl.  She was sitting on a couch and said to me, “So, Emmy, how’s it going?”, too cool for the room and certainly too cool for me.  All of my girl cousins called me Emmy and I really hated it.  The name is Emily, thank you!

As Denine entered her 20’s and became more mature, and I entered my teens, she began I guess to finally think of me as a “person”.  Plus at that time she bore a strong resemblance to Valerie Bertinelli, during her “One Day at a Time” years.  Valerie was my idol and I started to idolize Denine on her looks alone.  In my early teen years I always made it a point to get some “Denine” time every Christmas.

Denine moved out to Los Angeles, which I thought took a lot of guts and got a job, working as a liaison between movies and the artists who would do the movie’s soundtrack.  She was now uber-interesting to me and still so beautiful!

Denine had some extremely rough years during her marriage and ended up getting a divorce.  In 1997, when I was 27 I took her up on her invitation to visit her out in L.A. and I had one of the best times in my entire life!  She knew I wanted to see celebrities and took me to eat at every celebrity hang out, and we didn’t see anyone!  I remember her saying, “Brad Pitt comes here all the time!”  She did take me to a movie premiere where the then relatively unknown Julia Stiles was starring in a movie called “Wicked”, which you’ve probably never heard of.

I really got the full L.A. experience:  Farmer’s Market, Disneyland, museums.  I loved it and I loved being with her.  I was so surprised that despite her dealing with people in the entertainment world, she was still the same down-to-earth Connecticut girl she always had been.

We were very close after that, and talked pretty often on the phone, sometimes for a couple of hours.  I would tell her all about my boyfriends.  Somehow the conversations were always mostly about me.  I could and did tell her everything. She would always be ten years older than me, but by this point in our lives that no longer mattered.

When Grant met Denine he thought her as interesting and cool as I did and he too would make a point to get some “Denine” time.  She always had the best stories about Hollywood; who was gay, who was cheating on whom, and one time she even told us about a relationship she had with a “Rock Star Who’s Name You Would Know”!

We would see Denine almost every Christmas, with her parents hosting Christmas Eve dinner, which was my favorite meal of the entire year!  But we all get older and her parents no longer have their wonderful Christmas Eve celebration.  The cousins are scattered and unfortunately instead of one of them deciding to carry on the Christmas tradition, we’ve all been kind of doing our own things.

I keep up a bit with Denine a bit through Face Book.  She’s now about 50 and still looks amazingly beautiful, and I don’t even think she’s fallen victim to the Hollywood plastic surgery route!

Why haven’t I made the move to call her?  It’s the same reason I don’t call a lot of people I haven’t called in a while, or seek out old friends through Face Book.  It’s really hard to talk about my how hard things have been for Grant and I, with our health and our finances.  It’s downright depressing and I don’t want to tell her if I call her when she asks how I am doing how we really all are.

We’ll always be cousins, and I hope that some day it can be like it used to be.  In the meantime I will remember all of our good times and the fun talks we had, and what a unique, special person she is.

Tyler, "one-ish" in 2007, with Denine, "late forty-ish"

Tyler, "one-ish" in 2007, with Denine, "late forty-ish"

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Mental Illness: Breaking the Stigma

Yesterday I was getting my groceries wrung up by a young man who seemed to be coughing a great deal.  He was using the “vampire” method to keep me away from his cough as much as possible, but immunosuppressed me was a bit uncomfortable.

“Bad cold you got there,” I remarked.  “Yes, and I can’t take any cold medicine for it because I am Bipolar.”  I was shocked, in a pleasant sort of way, that he would be that forthcoming with me, a stranger.  I told him that my husband has A-typical Bipolar and that I too was being evaluated for it.

“Who isn’t bipolar these days?” I joked.  When I was done paying I praised him for being so open and willing to talk about his mental illness.

The thing is, the times that I have confided in someone that I have mental illness or that Tyler has anxiety and most likely OCD, I inevitably hear back from the other person, “I have anxiety too and I take Xanax for it” or “My husband has…” or “My child has…”

If so many of us have Mental Illnesses, why are so many of us still not talking about it, why are so many of us still so afraid to admit this?

The man with whom I conversed with yesterday was probably in his early 20’s. Perhaps his generation is comfortable talking about it, just as if it were a disease such as Diabetes or Arthritis, and…isn’t it?

I am liking the way things are heading.  How can you help?  By not being afraid to mention mental illness to people if it seems appropriate to the conversation.  Do an experiment and see if you get a “Me too” back, like I have.

The key to breaking the stigma of Mental Illness is to just keep talking, blogging, tweeting, communicating about it!

I hope you will join me in spreading the word and hope I have encouraged you to not be afraid any more.

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Photo credit by VinothChandar.

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Tuesdays With Tyler: Young Love

Today I saw the cutest thing.  I was so glad to have been the one to have dropped Tyler off to school today, and I hope I can do the story justice in my writing because it was a truly visual moment.

We put Tyler’s hat, coat and back-pack into his cubby and I took him into his room.  I scanned the room to see which of the children were there and Tyler at my side, pulled on my pants.  “Mommy, mommy, look!”

I looked over, and his eyes were on this exquisite Indian girl, “Antara”.  She looked back at the both of us and she got all shy and smiley and started twisting her hair with her fingers.  Is a four-year-old too young to blush?

I said to Tyler, “Honey, are you in love?” and he solemnly answered, “Yes.”

The magic was back!  You see, Antara and Tyler were the daycare proclaimed Brad Pitt and Angelina Jolie of the three-year-old set.  They were always together, and when they would nap, Antara and Tyler would sleep head to head, Antara holding a lock of Tyler’s hair as they slept.

Over Winter break of 2009, Antara’s parents were taking her to India to visit family. She told her parents that she wanted to take Tyler with her to India.

In January, Antara did not come back.  Her parents had decided I guess to leave her with the family in India, to better learn the language and culture.  Tyler was broken-hearted.  He did not like any other girls.

In May of last year, Antara came back to school.  All of the teachers and the director were thrilled because they loved to watch their “romance”.  But alas, time had taken it’s toll on their relationship and Tyler and Antara were “just friends”.

Until now!  I hope I did justice to their love story.  It’s like The Wonder Years, pre-school style!

Photo credit to Des In Real Life.

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GlassesUSA: A Great Way to Buy Glasses + Discount!

I was compensated for this post.  Certain links inside my posts were required as well.

I was approached by GlassesUSA.com to write a post about buying discount eyeglasses as well as prescription sunglasses online.  What a great way for a chronically ill person to get their glasses!  After all, don’t we buy everything we can online?

I really like what GlassesUSA is all about!   They guarantee their customers the highest quality – yet affordable – prescription eyeglasses online because they partner with the best laboratories in the industry  in order to offer their customers the best prices on every order! Their associates are specially trained to provide you with professionally accurate answers for all of your prescription eyeglasses needs, making sure that GlassesUSA is the only place you will ever buy your glasses online .

As a woman, I really appreciate the selection of frames they offer, over 300 of cheap designer eyeglasses and prescription sunglasses!

I really hope you will take a look at GlassesUSA and find out for yourself why they are different from other online eyeglasses stores.

And because your read this at Mama Sick, you can save 10% on your order of glasses with the code: Mommy10.  This is a way to get cheap eyeglasses at high quality, with your satisfaction guaranteed!

Here are some other specials for the month of March:

– 10% off any order of $100 or more with the code: 10FRSH

– 25% off any order of 3 or more pairs of eyeglasses with the code: 25FS

These specials include FREE shipping to the United States, but they do ship worldwide as well!

So, if you are in need of new glasses, or just want to get another pair(s) of  designer glasses on the cheap, go to GlassesUSA, and tell them Mama Sick sent you by using the Mommy10 code!

Thanks for reading, all, and I do hope you will click over to GlassesUSA.com!

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A Song With Significance

Inspired by Mama Kat’s Writer’s Workshop.

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Prompt 5.) A song with significance.

The following is written tongue and cheek.  I have no plans to hurt myself, nor do I wish to offend anyone.

I think that if I lived my teens and twenties in the 1970’s, I never would have made it out alive.  All those loves songs and sappy lyrics that when you are suffering from a broken heart make you feel that they wrote the song just for YOU and you wallow in their sadness.

America, The Carpenters (oh, please!) and Bread, oh, no, not Bread!

Yes, Bread. Here is a little “taste” of what I call “Lyrics to Kill Yourself By”: (and you thought you had to worry about Ozzy Osbourne?)

Everything I Own

You sheltered me from harm.

Kept me warm, kept me warm

You gave my life to me

Set me free, set me free

The finest years I ever knew

Were all the years I had with you

I would give anything I own,

Give up me life, my heart, my home.

I would give everything I own,

Just to have you back again.

You taught me how to love,

What it’s of, what it’s of.

You never said too much,

But still you showed the way,

And I knew from watching you.

Nobody else could ever know

The part of me that can’t let go.

I would give anything I own,

Give up me life, my heart, my home.

I would give everything I own

Just to have you back again.

Just to touch you once again.

Can you feel my pain?

I know a lot about love songs because I used to be an on-air radio personality and used to play a lot of them.  And sometimes I would be working odd hours where I was all alone and the water works would come.  “Oh, “Steve”, why can’t it be me? Why? Why?”

You get my drift.

The song with the most significance to me is a lesser known song by Chicago, that was popular on the Adult Contemporary Charts in the early 90’s.  And I had to play it, a lot.

Ready for some torture?

You Come to My Senses (with my commentary in italics)

(Okay, yes, I’m a girl and my love is a guy, not like the song says, but it’s still the perfect fit)

I picture you on the beach

Lying in the sand

Out of reach of my trembling hands

I picture you in the car

Blonde hair in the wind

I picture you in my arms

And the touch of your skin

The smile on your face

The way that you taste

(Alright, so we were never on the beach together, and he didn’t have blonde hair that blew in the wind, but so what?)

CHORUS

You come to my senses

Every time I close my eyes

I have no defenses

Driving home in the cold

January rain

I’ve got to find my way out of this pain

(Ohhhh, we broke up in the winter time, and “Larry”, it’s been so long and I can’t find my way out of THIS PAIN!)

I reached for you in the night

I dreamed of your kiss

I woke before it got light

With your name on m lips

Alone in my bed

Your voice in my head

(Oh, Larry, I cry myself to sleep every night, missing you next to me, I dream of you, and then when I wake up in the morning I cry some more because you really weren’t there!)

CHORUS

Oh, oh, oh, I picture you in my arms

And the touch of your skin

The smile on your face

The way that you taste

(You are in my every waking, sleeping, breathing thought, Larry!  Larry, come back to me, I love you more than she ever will!”

You come to my senses

I can’t stop this ache inside

Oh, I have no defenses

You come to my senses

Ah…

(you get the idea)

And then I would have to dry my tears, blow my nose and come on they air and in a nice soothing voice say, “It’s Chicago, You Come to My Senses, on Happy, 103.1 FM)

I used to tell Larry how I would cry about him during all of the love songs, because we always remained good friends, (even worse!)  and he used to say, “You, you’re alone too much.  You’re working nights and you’re listening to all these songs and they’re driving you crazy!  You…you need to get some cats or something.”

And so I did.

And after a WHILE, it got better, and now I’m happily married with a child….and, you know the rest.

But whenever I hear that song, which is now pretty rare, I still tear up.

http://www.youtube.com/watch?v=p3x-ealxU18

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Maxed Out

What we have worried about for so many months has finally happened.  Grant and I s’ three largest credit cards are all maxed out, leaving us with department store cards and some smaller cards they give to people with bad credit.  Some credit cards, seeing our pattern, have shut their cards off to us, others have lowered their credit, thus causing us to max out sooner.

The thing is, this debt is not due to excessive spending.  It’s due to being sick and out of work for so long.  We have gone through nearly all of our once considerable savings, money in the bank, both our 401Ks, and the worst, Tyler’s college fund. The disability process is taking so long, we are just wiped out.  We are using the credit cards just to live; for medical expenses, clothes for Tyler and even things like toilet paper or paper towels.

Grant and I most likely will apply for bankruptcy in the next few months.  As a person who once held a credit rating of 870, this has been very difficult for me to live with.

But it’s not just the credit cards I have maxed out on, I feel maxed out on life.  Taxes are due in nearly a month, I am in the middle of writing a hardship letter to Social Security and my Congressman and Senators, in an effort to get a disability hearing sooner.  I’m applying for low income housing, and just yesterday I got a letter from Food Stamps saying I am due for a recertification, and all the document gathering that goes along with that.

There’s neverending bills to pay, laundry to do, dinners to make.

I am maxed out on life.  I’m just too sick mentally and physically to take a whole day to put my nose to the grindstone and get it all done.  Instead, as many sick people do, I must take it in small doses, allowing time for more sleep and rest than most people need.

I complete one thing and then another huge project comes along.  I just wonder if I, we, our family, will ever get out from under.

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Longing to Fit In

I read Mr. Rosenblum Dreams in English as a member of the From Left to Write book club.  I was given a free copy as part of the book club.  This post was inspired by this book.

Mr. Rosenblum Dreams in English, by Natasha Solomons, is the story of a German-Jewish couple and their baby daughter escaping from Berlin just before the Halocaust. Jack formerly, Jacob, longs to fit in, to be a true Englishman, but can never exactly fool the English, no matter what lengths he goes to.

Jack believes a true Englishman should be a golfer and although he applies to several golf courses in London, finds that there are no openings for people named Rosenblum.  And so he decides to do what most everyone including his wife thinks is impossible and insane; he will build his own golf course, one where Jews will be included, and where he will be the one in charge of accepting or denying memberships.

Having chronic illnesses, I too long to fit in.  To assimilate into the “normal, healthy” mom crowd.  But somehow, it just doesn’t work for me either.  I don’t fit in. Not with the full time working moms, nor with the stay-at-home-mom crowd.  My child goes to daycare, now Pre-K, full-time, not because I am working, but because I cannot take care of my child on a 24 /7 basis.  It is always awkward at children’s birthday parties or at school functions.  Everyone wants to know what it is that I do. Since I stopped working due to my illness in March of 2008, I have made very few friends in real life.  I let very few people “in” to my world.

I want to fit in with the healthy moms for my child too, but some things are just impossible; taking walks, actually playing with him on the playground.  I stick out more than Mr. Rosenblum in my wheelchair or scooter when I take Tyler to museums or zoos.  People stare at me when I park in the handicapped spot.

And so, like Jack and his golf course, I created a place where people like me could fit in.  It is this blog.  Sick moms can come here and feel normal and say things like, “Me too”, “I cry over this too” or “Thank you for writing this.  You say the things that I can’t.”

I hope I have built a place of acceptance,respect and refuge for my readers.

But in the end, I cannot run away from my illnesses and my limitations any more than Jack could run from where he came from.  But I wish I could, oh, how I wish I could.

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On the Anniversary of My Father’s Birthday

Today is the anniversary of my dad’s birthday. He died at age 81, yes, I know he lived a full life, but it doesn’t hurt any less when you lose a parent at a “good” age.  He would have been 89 today.

It sounds a bit silly, that I am still counting, now that he is gone, yet I remember my father doing the exact same thing.  He had a yellow legal pad of the birthdays and deaths of his mother and father, and some other relatives that I cannot recall.  I remember him telling me, “Grandma “T’resa” would have been ‘X’ number of years today.” I never knew her as she died when I was an infant, and have really only shadowy memories of my grandfather who died when I was three.

My son never knew my father and that is a shame because as good as he was a father to me, I know he would have shined in the role of “Grandpa”.

My father died after a long battle with prostate cancer and suffered terribly.  I was diagnosed with Rheumatoid Arthritis the year he died and despite his pain he always asked me “How are you?”  “How are you doing?”  We seemed to be kindred spirits in our pain.  He “got it”, although I think he would have understood even if he didn’t have a chronic illness.

With things so dire right now, between Grant and I s’ illnesses and our financial situation, I often think how things would have been for us had he been alive.  How much I still need him now.

At his funeral, I was pretty much going through the motions, as many people do when they lose a close loved one, and when you look back on it, it’s all kind of a blur. One thing that did stay with me was something the priest said at the funeral mass.  That God had a room for my father in Heaven.  I pictured Heaven as a kind of modern, sketchy mansion with an endless amount of plain rooms, each with a person in it, and it comforted me.

It still does, I guess.  I try to teach Tyler that Grandpa Joe lives up in Heaven.  He is the grandpa that Tyler cannot see but is always watching over him.  Since Tyler has been alive we have lost two fish and two cats and to comfort Tyler I tell him that they are up in Heaven with Grandpa Joe and he’s got the fish in the fish bowl in his room and he plays with the kitties and they are all happy and don’t feel any pain.

I’m not sure if Tyler sees the picture but I sure do.  Happy birthday, Daddy, in your room in Heaven.

My father walking me down the aisle, his hair growing back after the latest round of chemo.  Thank you for living to see my wedding, daddy, it meant the world to me.

My father walking me down the aisle, his hair growing back after the latest round of chemo. Thank you for living to see my wedding, daddy, it meant the world to me.

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Tuesdays With Tyler: The Dada Artist

A couple of days ago Tyler had re-discovered one of his Spider-Man books patterned after a Where’s Waldo type of book.  He then became inspired to create his own Dada art by piling everything he had that was Spider-Man related into a carefully thought-out heap on the floor. While Mom was dead asleep, the Artist and his helper stayed up until midnight until he was finally satisfied.

A Bird's-eye View of the Masterpiece

A Bird's-eye View of the Masterpiece

The Art, close-up

The Art, close-up

Portrait of the Artist:  Serious and Brooding

Portrait of the Artist: Serious and Brooding

The Artist with his eccentric assistant, of whom the Artist graciously said, "I couldn't have done it without you."

The Artist with his eccentric assistant, of whom the Artist graciously said, "I couldn't have done it without you."

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