Saturday, February 28, 2015

Come at me #RareDiseaseDay

It’s Saturday morning, and I’m making pancakes.  As I’m stirring the batter, my IV pump beeps at me, nagging for my attention.

It’s Saturday morning, and I’m making pancakes, that people never believed I would eat.  The rest of the day will be spent celebrating the birthday of my boyfriend of three years, and undoubtedly working on homework for classes to make sure I graduate with my master’s degree in May, as I’m anticipating.  Milestones that we were told I would never meet because I wouldn’t see a birthday after I turned two.

Today is also “International Rare Disease Day.”  People are all supposed to “raise awareness" on this day about illnesses that don’t roll of the tongue quite as easily as cancer, or tend to get resources, support, or even diagnoses sometimes.

I can’t quit explain it, but stuff this puts a gross taste in my mouth (you’re supposed to find an “event” in your area, to “celebrate” Rare disease day? What?)

No offense to those who are all about it, and the cheerful, colorful logo, that makes having a rare disease look like an invitation to Mardi Gras, and sorry to use the phrase, but:

I literally just can’t even.

I think part of it is that my life has become devoted to raising awareness, of everything.   EVERY DAY.  Then all of a sudden there is one day, and people are supposed to listen?  Then they can go back to their own typically developing life and go “wow, I didn’t even know half that stuff existed.  Glad that’s not my life/my child, etc.”

The other thing is, my “messaging/personal brand/identity/whatever,” is based on the fact that I don’t spend time dwelling on how aware I am of my rare disease, CAUSE TRUST ME, I AM AWARE.  It is a huge part of my identity, but at the end of the day, it is NOT who I am.  I also tend not to jump on the “disability/chronic disease pride,” wagon, and you will not catch me posting photos of my central line, or medical accessories on THE INTERNET on “tube feeding awareness day,” or whatever.  

Because, I believe I can create awareness without me showing my body (or anyone else's) in ways others would not (unless they were getting paid mad money-  it’s on my CHEST, get me?)

I’m not trying to hide anything about my life, but why should it be the center?  My sister and I actually used to photo-shop our central lines out of photos, like other people remove red eye, or whiten their teeth.  We’re not denying who we are, but that’s not the point of the picture. 

The point of the picture is that we’re at the beach, spending time with friends and family, living our lives.

When I was younger, I used to play the whole “I wouldn’t change a thing” game, about my disease, but guess what?  I’m an adult now, and now that I’m the one doing everything to manage my health (and insurance coverage) I’d get rid of it in a heartbeat.  It’s bullshit.

No, I don’t know who I would be without it, and granted if it all of a sudden it were gone (without a transplant or anything else that would ultimately destroy my quality of life…. I mean like a genie came and bam, it was gone) it would be weird, and I’d have to reassess a lot of things in my life, because my life, and ultimately my career has been BUILT on advocating because of my illness, which truthfully, was not my plan.

What I wouldn’t change, is the people in my life, the opportunities I have had, or the wisdom I have gained because of my diagnosis.  I am happy, and honored to now be able to show the young families and up comers with my disease (Microvillous Inclusion Disease- Google it, this isn’t a biology lesson) that there is LIFE after a diagnosis, and it doesn’t have to be a death sentence. 

What if I didn’t have my “rare disease?”   Maybe I would still be in my hometown, living in a trailer with a couple of kids, going through the motions like everyone else.  But maybe, I would have been able to grow up with even less limitations and I’d be in a different industry, working for a fashion magazine, sprinting around a city in heels, not spending my time wondering how I was going to get to the next doctor’s appointment in 100” of snow.

But guess what?  What ifs don’t raise awareness, and that’s not my life.   Now if you’ll excuse me, I have to go finish making breakfast, and enjoy my Saturday before it is time to be aware of my rare disease again.



Also- As I’m posting this entry, my girl Britney’s song “Do Something,” came on.  So listen to the woman and don’t just change your profile picture.  EVERY day is time to “raise awareness.”

I see you lookin' at me
Like I'm some kind of freak
Get up out of your seat
Why don't ya do somethin'?


Anonymous said...

Ok- As someone who's guilty of the Rare Disease posts and all the other days, thank-you for this. I feel like blogging has been my answer to every day is rare disease (or epilepsy or undiagnosed) day for us. And yes, BEING and LIVING in community also does that.

I sort of feel the same way about Valentines Day - I'd be ready to bail on it in an instant if couples (not my husband of course) could just be sweet and thoughtful and wonderful the majority of the time. So I guess I feel both ways. Also, these posts are necessary. I didn't know you weren't expected to eat pancakes, so I love hearing that it's not all doom and gloom though it still is hard. HELLO SNOW!

In conclusion, all the thoughts and feelings.

As usual, thank-you for sharing this.

Anonymous said...

MS Awareness Week starts on Monday. I get it. These awareness campaigns & fundraising efforts make me groan. I don't know how I'm supposed to feel about various Boston landmarks being lit with orange lights on Monday night. It does not make me feel understood, proud, or safe.

A necessary evil? In two weeks I'll be in DC with my standard issue bright orange "pashmina" trying to secure NIH funding and making a case for a rehab equipment bill. I've spend 15 years avoiding being part of the herd it will be interesting to feel what it's like on the other side.

I'm a happy person with a nice life, but my life is different than many. I don't have a problem living with the physical manifestation of my disease, the suffering come from the way the physical symptoms interfere with how I want to participate in society. Living with a chronic illness and a disability changes my relationship to my Government. I wish government policies and public attitudes were less punitive.

Peace. While I was "lucky" to get the most common neurological disorder we are all on the same team.