Saturday, January 16, 2016

My Blog, My Book, My MS, My Pony, My Case Manager, and My Bravery

I'm tired of making proclamations and commitments about blogging more often. So I won't. I'm here now.

I have a lot of random tidbits to share about still having MS. I think about and start writing individual essays about MS-related stuff all the time, but my perfectionism keeps me from finishing and posting them. So here it is. My brain dump. My list of blog topics, if you will, that may or may not turn into individual posts.

My Book
My New Year's resolution for 2016 is to finish my book. My original idea was to write Maybe I'm Just Lazy: One Woman's Journey Through MS and Life as a journal of my first year living with the disease. I was on track after I was asked to write an opinion piece for Lola, the now-defunct, free Boston Globe magazine. I was energized and motivated and felt like nothing could stand in my way. I was going to be on Oprah, I'd have a story on This American Life, and I'd become a regular on the Moth. Well, that piece was published more than eight years ago. So, what happened? I could list a whole bunch of practical, logistical excuses about single parenthood, working full-time, travel, etc, but I don't think any of them are really true. It's insecurity...about my idea, my writing talent, and the uniqueness of my voice. Do I have a good story to tell? Am I able to write it well and in an entertaining and authentic way that people will want to read? In other words, am I good enough?

I'm done with that crap. I made the mistake of listening to those voices. Life is too short. I'm inspired by words. Here are some quotes I'm using to help me keep my resolution and finish my book this year.

"We are just going to take this bird by bird. But we are going to finish this one small assignment." --Anne Lamott (To me, this means I need to break the project into manageable chunks. Not even chapters, but individual essays I want to include in the book. One DRAFT essay a week to start. I'm starting with my story of waking up nearly blind in one eye which led to my diagnosis with MS three days later.)

"Trust yourself. Create the kind of self that you will be happy to live with all your life. Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement." --Golda Meir

“There is no greater agony than bearing an untold story inside you.”  --Maya Angelou

“If there's a book that you want to read, but it hasn't been written yet, then you must write it.” --Toni Morrison

“You can't wait for inspiration. You have to go after it with a club.” --Jack London

“And by the way, everything in life is writable about if you have the outgoing guts to do it, and the imagination to improvise. The worst enemy to creativity is self-doubt.” --Sylvia Plath

“The only way you can write the truth is to assume that what you set down will never be read. Not by any other person, and not even by yourself at some later date. Otherwise you begin excusing yourself. You must see the writing as emerging like a long scroll of ink from the index finger of your right hand; you must see your left hand erasing it.” --Margaret Atwood (And when it's time to show your writing to someone, choose very carefully who that reader will be. The wrong reader's feedback has a way of fanning the flame of  that insecurity. I'm thinking about a writer's group of supportive, fellow writers who are honest AND supportive.)

"For me, and most of the other writers I know, writing is not rapturous. In fact, the only way I can get anything written at all is to write really, really shitty first drafts." --Anne Lamott 

"Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy." --Dale Carnegie

So, then there's the MS itself. My book is about having and living with Multiple Sclerosis, a chronic (but definitely not fatal) neurological disease. I am one of the lucky ones. Most of the time, I am symptom-free and the nerve damage I experienced at the onset of my disease has been pretty stable. I was diagnosed in 2007 after an MRI and a neuro-ophthalmologist determined that MS was the cause of my sudden vision loss. Apparently, the disease attacked the protective myelin coating that covered my optic nerves and there was some damage when the nerves were exposed. It's mostly stable and I've been able to get used to my visual impairment. I generally enjoy seeing the world through my wonky eyes. It's an endless source of amusement for my friends and for me when my brain gets it wrong in determining what I'm seeing. An unfamiliar wooden structure in the middle of a cranberry bog on Cape Cod, for instance, becomes a blue, square cow, even though I know there is no such thing. I also discovered that some of my optic nerve issues were caused by active inflammation and that eliminating gluten and dairy and limiting sugar (always a battle for me) reduces the inflammation and improves my vision. Kind of incredible but true.  Swear to God. I used to see blurry black and white shapes in my right eye and thought I must be imagining things when I started to see color and was able to distinguish known objects.My neuro-ophthalmologist has confirmed that my vision has improved slightly.

But I still have MS. A recent exacerbation reminded me that my disease is alive and well and I can't ignore it--mentally, emotionally, or spiritually. Even if I am taking my prescriptions, getting enough sleep, exercising, etc., relapses can happen and, if I'm not in optimal mental, emotional and spiritual condition, it can knock me on my ass. I can fall into a hole of self pity where I can't even stand myself.  My theme song changes from Beautiful to Loser. Writing about my MS saved me in the beginning. It allowed me to "change the things I can," the really important line for me in the Serenity Prayer.  And I need to keep on doing that, no matter what.

My Pony
I've written here about what I fondly and incorrectly refer to as seeing-eye ponies. When I saw this Amazon Prime commercial, it reminded me of how much the existence of these miniature horses made me smile as I was facing increased vision loss. I'm lucky. Some people have to work really hard to find the funny but it kind of comes to me naturally...when I remember to look for it.

My Case Manager
I firmly believe that everyone diagnosed with MS (or any chronic illness, for that matter) should immediately be assigned a personal case manager. "Hi Julie. You have MS and this is Fiona, your case manager. She will communicate with you in the manner of your choosing--email, phone, text--to manage prescriptions, appointments, tests, symptom and medical history, etc." In some cases, it might just be a reminder but, if you wish, and perhaps for an extra fee, your case manager will actually make the appointments and the phone calls for you. If I had a ton of spare time I would prioritize this as a focus for my activist nature. I think that relapses would diminish and quality of life would improve dramatically if we had case managers. We are all, presumably good at what we do. I am a mom (who sucks at it some days, but I have 16 1/2 years of experience in the field), a writer, and a marketing professional. That's my skill set. Managing a chronic illness is not one of my talents so why should I suddenly have to get good at it just because I happened to be diagnosed with a chronic illness?

My Bravery 
Let's end this verbose post with a song. I usually hate when people tell me "I'm brave" about having MS. This song and its amazing music video make me feel better...much better...about that word. Be brave, y'all.


  1. I love this, Julie Baker. You and I are alike in so many ways. Thank you for posting this. Really. THANK you.

  2. Good luck with getting enough words together for this book you know you're going to write, eventually. Have faith, and leave the perfectionist outside while you get it done.

  3. Hi Julie! From another MS blogger! I came across your blog while continuing to do research for my MS Resources page and your blog is one of over 150 MS blogs that I have found so far.
    I am reaching out to many on that list, to other MSers about a recent idea I had for fundraising for MS. I call it the "Orange Man Project" and I explain it in this post ( I have NO idea whether this is something that will gain traction or ever get off the ground, but I aim to have fun while trying. Who knows, maybe Orange Man will be MSer's version of the ALS Ice Bucket Challenge that went viral last year. I have visions of seeing Orange Man on top of the Eiffel Tower, napping in Central Park or attending some huge concert. I realize that these are lofty ideas, but my folks always did tell me to dream big.

    What I like is that it's not asking anyone for a donation; only to be crafty and a bit creative and to then share. If folks do, then a wonderful picture book could be created and that would monetize the project. I would love it if you would read the post, watch the "how to make an orange man" video, participate and then SHARE w/ me (and Orange Man) but also with other friends and family that might be interested in "playing."
    My email is I would love to connect with you - even beyond Orange Man. Reading your latest post it seems we have more than just the MS in common. (Single mom, DX in 2007, have a book that I wrote but haven't pursued publishing because it scares the shit out of me that I might NOT be successful:)
    Meg (aka BBH)

  4. Hi Julie:
    Funny story but I just read your article in LuLu from 2008. It was in my mothers apartment when I packed her up to move her in with me! I loved it! I was diagnosed in 2007 and have been blessed with one exacerbation and many "Is that me getting older or my MS" moments! I just went on amazon to find your book thinking it would have been published by now 8/14/2016. When I didn't find it I found your blog!!! You have a talent for words emotions and life! Please write that book!! Hope you are well! All I wanted to do when diagnosed was to be strong until my kids could drive! They are off to college now! Little things get us through!! Thank you for sharing!! Carol Hawk Basalt, CO