Forgetting Everything I Knew

I read Expecting Adam as a member of the From Left to Write book club.  I was given a free copy of this book. This post is inspired by the book.

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs. My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

In Expecting Adam by Martha Beck, Martha and her husband must let go of all they have learned from their Harvard education and open their hearts and minds when they learn that Martha is five month’s pregnant with a baby with Down Syndrome.  Martha especially must face judgements from the Harvard academia and even her doctors when they are shocked to learn that she has decided to keep the baby.  Along the way, Martha discovers a way of living and thinking about a life that not only can be just as good, but is even more rewarding than she could ever imagine.

Before being diagnosed with Rheumatoid Arthritis (RA) in 2003 at the age of 33 I, while no Harvard graduate, had always excelled in everything I did.  In 2000 I had decided to give up my on-air radio personality career and go in a completely new direction, taking a job with no experience necessary, in order to train as a Recruiter.  I enjoyed the business, learning everything I could about recruiting and of the niche I was recruiting in.  In a couple of years my position changed to where I reported directly into the President.

Two months after I got married I felt the first pain of what would wind up being the rest of my life, ironically while I was on the treadmill in the gym.  It took me six months to get a diagnosis of RA, in between which my feet were swelling so badly I would have to take ice packs to work and even on business trips.  I worked in this manner for a few years, sometimes just being at my job numb from so many pain killers.  I tried to never miss a day, even if that meant vomiting in the morning and then getting ready for work.

In 2005, I appeared to be in remission, and feeling that I was in the best health that I would ever be in, my husband and I decided to try to conceive, which we were successful at on the first try.  My pregnancy went very well from a Rheumatological standpoint and I continued to do well until my son was about a year old.  My pain started to increase by the day, my hands swelling.  I would fall asleep driving to and from work, I was lucky I didn’t kill myself or anyone.  I was swallowing narcotics two at a time just so I could feel some relief from the pain. But I was a full-time working mother and I thought it was just my 6 a.m. to 11 p.m. hours of being a mommy and working.

Through the five years I had been working with my diagnosis, and with the help of the internet, I had seen hundreds, even thousands leave their full-time jobs.  That was unthinkable to me.  I was the main breadwinner in the family.  We were going to buy a home, help our son with college.  Not working was just not possible, not in the way I wanted to live my life.

In 2008 I worsened.  At the same time, my satellite office of the new job I had been at for a year was closing and I was laid off in March.  In July I got my diagnosis of “Lupus with RA overlap”.

I never went back to work.

And I lost everything.

My 401K, my son’s college fund, my credit rating.  In fact, this month the woman with a credit rating in the high 800s is filing for bankruptcy.

I always used to think “those people” with chronic illness who stopped working were just not as strong as I was, that my will was mightier than theirs.  That their families did not depend on their salary the way mine did.

Turns out I was wrong.  It wasn’t that I wasn’t any better than those who had just “given up”.

I just hadn’t become sick enough yet to the point where my body said, “This is it.  I am not going to do this any more for you.  I just can’t do it any more and I won’t.”

People wonder what I do all day, especially while my son is in school.  What I do all day is…be in pain…have trouble walking…thinking…sleep and rest.  I go to doctors, I apply for disability which is akin to writing one’s dissertation.  I wait, so far for over two years to see if the United States government decides to declare me disabled.  I file paper work for WIC and Food Stamps, things I never dreamed my family would be on.  I advocate for myself and for those like me.

At 42 years old, this certainly isn’t the life I thought I would be leading.  But with the pain, with the worry of living under the poverty line, there is also joy.

I get to spend more time with my child than most working mothers do.  I am home when he comes home from school and I am always there to watch my child walk in the Halloween parade or to partake in the Mother’s Day tea.

I get to write.  Something I never knew I wanted to do and something that I never knew I could.  Was my brain so full of thinking about work that there was no time to let my creative side be free?  Would I have ever even become a blogger if I had not become disabled?

And finally, I get to make a difference in people’s lives.  For those mothers who are sick like I am and for those who are mothers of special needs children.  For those who are mentally ill and need a voice.

Life certainly did not work out the way I planned it, but it is certainly not all bad.

 

 

On Being Remembered

(I read Cleopatra A Life as a member of the From Left to Write book club.  I was given a free copy of this book.  This post is inspired by the book.

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs.  My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

One does not have to read Stacy Shiff’s book Cleopatra A Life to believe that one knows all they need to know about the Egyptian queen.  Many of us have read about her through Shakespeare, or confuse her image with Elizabeth Taylor’s portrayal in the 1963 movie, Cleopatra.  Even if one has never read about her through plays or watched the classic film, Cleopatra is as notorious or famous now as is our modern day Lady GaGa.

And yet, without reading this book or a book that writes about Cleopatra’s actual history, you would have many misconceptions.  She was not a great beauty “a la” Liz Taylor.  A temptress maybe, but she did not have much time to do this tempting as she was dead by age 39.  There is only evidence that she actually had sex with only two men in her life, but they do happen to be pretty important ones, Julius Caesar and Mark Antony, sound familiar? She was married twice, each time to a brother.

Most will not read this book or any other that is historical, and so the misconceptions about the Queen will live on.  But above all, Cleopatra was a shrewd strategist and an ingenious negotiator, who in her short life, reshaped the ancient world.

As I read this book, I thought about how I would want to be remembered.  Poor Cleo must be “rolling over in her tomb” if she is able to.

What do people think of me right now?  If you are a faithful reader to this blog, I would say you know me pretty well, better than a lot of my friends and family.  If you are not a regular reader of this blog, a first-timer, you may wonder how anyone could be so sick, or think they are so sick that they could give up a successful career as a headhunter, a good salary, and raise her child in poverty.  How could anyone do that?  Isn’t their something this woman could do to support her family, instead of living off of our government for food stamps, and seeking disability, when she is only 41 years old? Maybe it makes you mad when you think that somehow she is taking your tax dollars to live off of. That if you were sick, nothing would stop you, that you have a family to support and whatever came your way, even if it was cancer, you would still get up every day and go to work, that you would have to, that you MUST!

Perhaps you wonder how anyone could have 15 diagnoses and live?  Is this woman telling the truth?  Is she one of those bloggers who makes up a life in order to get successful through advertising?  When will she die?  Surely, no one could claim to be that sick and be able to throw her child a birthday party or celebrate Christmases or take her son to karate classes.  Something just does not add up here.

If you see me in real life, with bandages on my wrists and elbows, you may wonder what in God’s name is wrong with me?  What the Hell happened to her?  If you know me well and know that I am on an immunosuppressant drug and that I catch colds and weird infections frequently, you may be scared to be around me.  When exactly the opposite is true, it is you who are a danger to me.

What do I want to be remembered for when I die?  It is something I do think about frequently as if you do the math, it does not appear that I will live to a ripe old age, that at 41, my life is more than half way over.

Maybe Cleopatra didn’t think much about what her legacy would be, but I have had plenty of time to, as I am not busy ruling over a country and am more likely to be found in bed in my pajamas.

When I die, I know a world will not mourn my death, or be thinking about me over two thousand years later, but I know those who are my readers, close friends and family will.  I would hope that with this blog and the way that I live my life and through my conversations, that I have brought comfort to a few thousand or so people who are sick and raising children, just like me.  That I have educated healthy people on what being chronically ill is like and that NOT just the uneducated, those mothers who are not sure who their “babys’ daddies” are, or illegal aliens need food stamps; that there are disabled people who need them too.  That those who use scooters or wheelchairs are not just old, quadraplegic or have a terminal illness.

I would like to be remembered as someone who used her 15 illnesses to make a difference in this world.  Maybe not to millions but to those few whose lives I have touched.  I would like to be mourned not as a sick person who died slowly, but as someone who lived every minute of her life to the fullest.  As the best mother she knew how to be, the best wife, relative and friend that she was able to be.

And now let’s talk of my death no more.  I have a life to lead now.  I have to get ready to start my day which includes getting an ultrasound done on my thyroid, picking up a big bottle for a 24 hour urine test, making a shopping list and buying a few things at the grocery store, and planning tonight’s dinner.  I am thinking about what my son and I will do when he comes home from school. I am looking forward to the new episodes tonight of “Gumball”, “Adventure Time” and “The Regular Show” on the Cartoon Network, which my whole family loves.

Maybe you are going to do some of those things too.

You Are NOT The Only One

(As Invisible Illness Awareness Week continues, I am dedicating my posts to those with Chronic Invisible Illnesses, and to helping those who may know of someone with an Invisible Illness better understand them.  It is an honor for me to be a part of this cause!)

Not only do I blog about chronic illness, I “talk the talk” as well.  Having been chronically ill since 2003, I seemed to have developed somewhat of a “sixth sense”.  it is weird, but I have this instinct for being able to “see” people who have Invisible Illnesses.

This summer I was getting coffee at a Dunkin’ Donuts and I saw this pretty young woman carrying her infant in the removable car seat.  Everyone was remarking how beautiful the little girl was and she had one of those traditional names like Charlotte or Lily that I love.

I said to the woman, “How are you doing?”, and I told her how I remembered how heavy carrying a 20 pound car seat with a ten + pound baby was.  She said, “Yes it is hard and…it’s not just that…I have M.S.”  I told her that I had Lupus and I had Rheumatoid Arthritis when my son was born.  “You did?  You do?”  I told her my story, the short form, about how I used to have to crawl to Tyler when I could not walk and Tyler was crying or needed to be changed or fed.

And then, she started to cry.  “There’s no one else like us in the world!”  And she broke down.

I put my arm around her.  “Aren’t you on any support groups for your M.S.?”

“Oh, no. Those places are just depressing. People just moan about how bad they feel.  And they don’t understand what it is like to have M.S. and have a baby.”

I guess I had been living in a bubble.  I had thought if you had a major disease in this day and age, you would be on at least one internet support group.  And that if you were a mom with a major illness you would be on several!

But I live in the world of Social Media.  I am a blogger, a tweeter, I am on Face Book, Google+.  I never would have made it, literally, not have been on this planet today without the support of my friends that I have found on the internet.

“Rachel, you are wrong about you and I being the only ones!  There are hundreds of thousands of women just like us who are raising children while dealing with not just one disease but many!  They are doing it every day.  They are getting through it, and you will too!”

I told her about sites like But You Don’t Look Sick and Chronic Babe.  That they weren’t the depressing, “poor us” sights she thought they were.  That they were fun and the people on them were interesting and cool and beautiful and they were from all over the world.  And that we laugh and that I have made REAL friends that I can share my life with, and yes, when I am in trouble, I have their phone numbers because sometimes I need to speak to someone…

Just like me.