Saturday, March 1, 2014

Orange Is the New Pink

It's March. It's my first MS Awareness Month since I've been an MS patient. And I'm not sure what to do with that.

like to purchase pink things that support breast cancer research. I have had several friends who had breast cancer. Not all of whom survived it. 

But if I am honest with myself... I buy pink stuff because I like pink stuff. I like my pink boxing gloves. I like my pink Sharpie, I like my pink t-shirt that reads "Fight like a girl."

Aside--Pink also has the added bonus of keeping my son from wanting to play with my stuff. 

I really hate orange. 

Multiple Sclerosis Awareness has been assigned orange by the colored-ribbon brigade. Last year, my role during MS awareness month was to kick in $20 for a co-worker's MS walk. But--to be completely honest--MS, and its honorary month, just wasn't on my radar. 

Maybe that was because I really hate orange.

This year is Year 1 AD. After Diagnosis. And I can't figure out what my role is in this and all future months of March. 

I've gotten several invitations to attend conferences and seminars this month that discuss what I should be eating, how to cool myself, and things I should prepare for. All this, and a free chicken dinner. It should be a barn burner. 

I've gotten several fundraising requests. But I don't want to spend any more money on MS. I don't want to spend any more on cancer research, homeless pets, or Restless Leg Syndrome. And then I feel very guilty about spending money on a trip or a concert instead of contributing to making a better world. 

I get requests to participate in MS research studies. And I feel guilty not wanting to spend 60 additional minutes of my day in an MRI machine. 

MS Awareness Month tries to educate the public about my disease. I know that the public has a lot of misconceptions about my scarred-up central nervous system. But I don't want to be an MS ambassador.

I want any "extra" money I have to go towards making memories. To experiencing new things. For me. For my son.

I want to see Guernica. Hagia Sophia. Havana. The Northern Lights. 

I want any "extra" time to be spent feeling happy, content. I don't want one additional minute of feeling like a patient. 

I want to spend time on road trips. Seeing Broadway shows. Taking a painting class. Falling asleep to the sound of the ocean that is right outside my window. 

I don't want to be MS girl. I want to be Mom, Eese, and Velma. I want to be someone's Love. Best Friend. Partner in crime. 

I think I know how I can reconcile all of these contradictory feelings. I've decided the best way that I can help. MS researchers can have my brain (and whatever else they want to study) after I've shuffled off this mortal coil. The rest of me should be ashes, given to my son with the requirement that he scatter them somewhere he has never been, in order to make a memory. 


  1. interestingly here in the UK, we have MS Awareness WEEK - seems much more realistic to try to maintain interest for 7 days - but a whole MONTH??

    if i remember rightly, one year in i was still at an early stage of grief (lots of anger with a big dollop of denial) - i'm still conflicted about this sort of awareness thing - it's good for people to find out more, as long as it doesn't scare the bejeesus out of someone who's newly diagnosed (and their family).

    i'm also tired of the daily updates - liver! the contraceptive pill!! Vitamin D! not-too-much Vitamin D! eating soil! hay-fever tablets! on any given day of the week, any one of these will be the cause or the cure. take your pick.

    but i guess these awareness raisers mean well - it's just not what you want to hear for a whole month - my levels of awareness are PRETTY HIGH already, thanks...

    1. Every time one of those updates comes out, my sister swears she caught MS. At one point or another, she has also caught testicular cancer, polio, and pregnancy.