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.