New Year, New You?

It’s the first day of a shiny new year. The day when all the mistakes of the previous year are behind us and anything seems possible.  By now at least a month of partying has been put to bed, its memories tucked away on Instagram. My liver and credit card are holding hands and whispering Thank God. We’re safe now. The fun is over and as we face that icy, unforgiving bitch, January, it’s hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t technically require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of 2015 while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year’s. It’s up to you. 

For others a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes, looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, start day drinking, stop using LOL, finally make that enemies list, start being nice to the cat. Look, I don’t know what you’re into. The point is Anything is Possible.

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Many start the year with big plans for major changes only to find themselves failing by February. So why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams is an important step to realizing them. A new year is a time to reflect on what’s positive in our lives and what needs improving. Even if we never keep our pledges, the act of making them means we take stock, examine what we like and don’t like. We get to know ourselves a little better and identify what’s working and what needs changing.

In chronic progressive illness the measuring of time is tricky business. By definition we’re supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control. 

So this year I am choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh and then commit to spending more time with them. I will pay attention to what makes me feel crappy and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear because dwelling on the worst case scenario is a waste of my imagination. 

It’s 2016.

Embrace unrelenting optimism. 

Happy New Year, Trippers.

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Happy Birthday to the Banker

I am coming off a week of infusions and feeling way too yucky to party but it’s The Banker’s birthday and saltines and ginger ale are a poor substitute for cake and champagne so we will have to postpone a proper fête. In the mean time, here is a little toast to my bae.

This is a song I wrote and recorded with my Brooklyn Bestie. It is for and about The Banker and his incredibly hopeful, enduring and sustaining love for me. Through all the murkiness of life with MS he sees sunny skies and endless possibilities. When I am my grossest, he somehow maintains the best version of me. And when the noise in my head gets too loud I always know I can turn it off and give it over to him. He just seems so certain, to know absolutely where the light is.

Have a listen.

We climbed another hill today
and looking back I can’t believe how far we came
Looking up I see the sky
And knowing that you’ll catch me I feel I could fly

Through your eyes I’ll always see 
an endless road stretched out beneath my feet
and through your eyes I’ll always be
the best of all the guesses kept inside of me
I see the future and all my fears subside
I see it through your eyes

We watch the daylight fade away
and one by one the stars all try to take it’s place
moonbeam shadows dance and fold
but in your arms I barely feel the cold
I’m right where I dreamed I’d be
I’m right where I wanna
you’re right where I dreamed you’d be
Wherever you are is where I wanna be

Happy Birthday to The Banker

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Thanks again

Last week I wrote about how MS has made me resilient and how I am grateful for that. Since then I’ve heard from a couple of people who had their own examples of surprising blessings. They were different from my experience but it totally resonated. So.

I need your help.

I want to write part two of this story but I need to hear from you. Has this ridiculous experience facilitated anything that you are grateful for? Please send me a private message and I will share our stories, anonymously of course.

Thanks for reading,


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MS Sucks. Can I Be Thankful For It?

How can I be thankful for something that takes so much?

I’m grateful for MS. I know. I just threw up in my mouth. Tastes like blasphemy.

I’m grateful for MS, but this isn’t a post about silver linings or looking on the bright side. I will not ask you to drink from your half-full glass of rose-coloured rosé before you put your head back in the sand. Let me be very clear:

MS fucking sucks. 
There is nothing inherently good about this loathsome disease, and I wholeheartedly believe in saying it sucks, when it sucks. And it sucks.
Sucks. Sucks. Sucks.
And I will keep saying just how much it sucks as I suffer through every miserable moment of rage, and angst, and grief, on the highway to Sucktown. I will mourn every loss, and every lost potential. I will scream and I will cry. I will let it out. And I don’t want anyone telling me to feel better.
What I do want from my posse is for them to listen, to pour me a glass of wine, to put their arms around me, and to whisper that they love me. I want them to hand me the tissues while telling me they don’t know how it’s possible, but I’m even prettier when I’m crying. 
When the dust settles as it always does, I will take a deep breath and say I’m grateful for every single shitty thing that has ever happened to me. Of course it’s way easier to do this long after a crisis has passed. Time affords healing, clarity, and perspective. And ultimately, the ability to recognize what I’ve gained throughout it all, and that is resilience. 

Resilience is one of the most valuable skills we can cultivate and there is simply no other way to get it than through first hand, tough as shit, life experience. MS is the steep price I’ve paid for that which has turned me into rubber. 

Tough, bouncy, resilient, rubber. 
Most of the blessings we name at Thanksgiving are transient and temporary. Eventually we may lose some of the material things we appreciate. We most certainly will lose loved ones we hold dear, and eventually all of us will confront our own struggles with health and mortality. How not to get swallowed up in the overwhelming suckitude of it all?  

Giving thanks for the fragile and fleeting can ground us in the present. It’s important to count these blessings. But this Thanksgiving, I’m feeling particularly grateful for something less tangible, but perhaps more enduring. Something I might even have a little control over.

Dear MS, Thanks for the awesome life skills. What I really wanted was a Chan Luu scarf, but I get it. In this economy.
Blah, blah, blah, hardship builds character, right? I’m not convinced I would actually choose a strong character over strong legs, but since I’m stuck with ‘life experience’, when the next MS meltdown strikes, I can remind myself that my ability to adapt has been earned and learned and lives deep within me. Even if my body breaks, I won’t be broken. 

I’m still here. 

I know how to do this. I’m sure my resilience has a threshold. We’re talking rubber, not steel. But I’m surprised and grateful to learn I haven’t reached it yet. 

In the immortal words of the great Chumbawamba, 
I get up again.

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Look better, be less of an asshole garbage person

I remember an old “look better, feel better” breast cancer campaign that helped women cope with chemo by providing a makeover and a new ‘do. While nobody was suggesting any of these cancer patients needed a personality overhaul, in my case this has proven to be a welcome side effect to improving my appearance.

Looking one’s best can boost spirits. What I didn’t realize was just how much I genuinely behave differently based on what’s going on with my hair. Turns out the degree to which I am put together is directly related to how sufferable I am. And sadly, looking like an insomniac beast person can make me act like, well, an insomniac beast person.

While I am mostly nocturnal I am not actually a beast person. In fact, I am all girl. I delight in dresses and makeup and pretty things. You wouldn’t know this though, because most days I am at home, braless, in faded track pants, the shirt I slept in and a messy ponytail. When someone unexpectedly knocks at my door I turn into a stealth but frumpy ninja so they don’t know I am home because I don’t want to be responsible when they see me and turn to stone.

My poor, neglected pretty things.

Lately, I have been leaving the loft in this half-assed state of I Give Up and Please Don’t Talk to Me, deciding I don’t have energy to invest in my appearance AND in going out. On my last such venture I noticed myself being a cranky pants right from the start. I was pissy in the car with The Banker and I didn’t really know why and

unwarranted pissyness is THE WORST kind of pissyness. 

I felt better at the theatre during the show where it was dark and nobody was looking at me. After, when there was talk of going for a drink, I knew there was a problem because I was back to being pissy and I didn’t want to go. And that is super not like me because I love drinking.

There was a connection and I decided to test a theory. The next time The Banker and I went out it was to a dingy comedy bar. I didn’t need to dress up for this crowd but I did. A little. I put on a simple knit dress, a chunky necklace and some gloss. What came next was

Cinderella level TRANSFORMATION.  

Suddenly I was sunshine, smiling at everyone and ready to party. Completely distracted from my weary and uncooperative body. I was being pleasant. Not only was I not acting like a beast person, I no longer felt like one. Could lipstick really do this?

Looking better makes me feel better and by extension you will feel better because as it turns out I am moody and kind of a jerk without accessories. The good news is that unlike MS there is a cure for my bitchiness and it is called mascara and a properly fitting bra.

So, am I vain? Obviously. I’m not proud of it. But if there is a connection between what I present to the world and how I feel about myself then who am I not to harness the awesome power of what’s in my makeup bag?

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