Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe,¬† and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:


Don’t Ever Think ‘Equality’ Is A Dirty Word

We need women (and MEN) from all walks of life, from all occupations, from all age groups, to get on the bandwagon with the idea that equality is worth it. Already my nephews, aged 10 and 6, have started reciting the ugly words, “Boys are smarter than girls.” They certainly didn’t learn that from me or their parents. Now our work is even harder with trying to turn that thought process around (if it is even a process – because they are more parrots at that age than scholars).

I want all girls and boys to grow up to appreciate differences while embracing each other for their value as human beings first.

I want women to receive equal pay for equal work.

I want men to stop claiming all space as their own, including women’s bodies.

I want women to be supportive, rather than see each other as competition to be beat.

But in addition to that:

I want people who are labeled “disabled” to be out in the work force (if they are able) and have a social life filled with inclusion, and to be portrayed correctly in advertising, TV and movies.

I want “inspiration porn” to end.

I want the freedom to practice – or NOT practice – any and every religion of my choosing.

I want churches to start paying taxes.

I want people of ALL races to be valued, truly, but I want privilege to be acknowledged and then driven to extinction.

I want our actions to match our words.

I want choices, whether it’s the company I keep, the job that pays the bills, the food I put in my body, the chemicals I keep away from my dwelling and the doctors I see. The more we work towards total inclusion, the better our lives will feel, period.

Are You There, God? It’s Me, Chelsea

Judy Blume wrote from the perspective she was most familiar with – her own. It’s what we all do. It’s what makes our stories unique, especially when we look at the story teller as female vs. male, as tall vs. short, as narrow vs. wide, as black vs. white, as wheeled vs. walking.

Something that Judy Blume would have no perspective on is the experience of a girl going through puberty and dealing with questions about her body and her sexuality while also experiencing a physical disability. For instance, would it be so easy to use a tampon if your hands did not have the dexterity and strength that most girls had simply because you had cerebral palsy? It seems unfair that a girl with CP have to advertise to the world that she had to install a brick (aka pad) in her underwear because a tampon was just too damn complicated.

For me, my baldness has flavored many stories. I didn’t choose to lose all my hair. I had absolutely no control on it falling out, and I have no control on it growing back. However, wigs have gotten so good that I can “pass” to the untrained eye. I still get a once- or twice-over.

This woman is hugely disappointed because she has never been catcalled. I’m sure she’s faced many, many types of discrimination, but she is heartbroken because she has never been desired simply for her appearance. She is always going to be liked for her personality, and only after she has been passed over by many, many men. She has never written in her journal that some stranger said something sexual and inappropriate to her, and she told him to fuck off and then ran-walked away.

Right now I only use a cane to help me walk – my walker stays in my closet. But I know a bit about what she feels. I am treated completely different when I’m walking with my cane compared to no cane. I even feel different, more vulnerable without it, because I know that when my feet are slapping together and my face is paralyzed, I’ve lost all desirability.