Blogging Again

I am writing almost every single day, but not here.

I am telling stories a few times a month but, usually, not about my MS.

I am taking my second memoir class at Grub Street this year and I am committed to writing my memoir. But not the one I started with this blog.

I often forget about my MS. I'm not in denial. I know I wasn't miraculously cured.

I am a writer and I'm realizing that I can work on multiple projects at once. I participated in National Novel Writing Month (NaNoWriMo) last November. I develop stories and essays and had my turn at fiction, too, so why not blog regularly, as well.

So, I hope you'll be hearing from me a lot more. 

Goodbye, Mom

I was asked to write my mother's obituary. This is kind of miraculous because we were estranged for 30 years. We only reconciled shortly before she was diagnosed with terminal brain cancer and I helped care for her in the weeks before she died. That process was incredibly painful and incredibly healing. Writing this was healing, too. There will be many more stories about my mom and me, but this is what I'm capable of sharing now.

~ 

Sharen Seedman Baker passed away peacefully in her Hartford home on March 28. At 77-years young, she left the world too soon, just 50 days after receiving a diagnosis of glioblastoma. But she was ready, reminding her devastated family that “Even the very hairs of your head are all numbered. Fear not therefore.” (Luke 12:7) Sharen died the way she lived--on her own terms, with hospice care in her beloved Armsmear apartment, surrounded by her family, friends, books, and art.

Sharen was the daughter of the late Willard Seedman and Nellie McGann. After graduating from St. Joseph’s College and the University of Connecticut, she worked as a special education teacher in Connecticut, Wisconsin, Nevada, and California. She was a lifelong learner, a member of MENSA, a Reiki master, a painter, a social justice champion, and a spiritual seeker. Sharen was a long-time member of Grace Episcopal Church and sang in the choir there. She also studied Sufism for many years and meditated daily. Sharen loved travel, visiting every continent and participating in medical missions in Africa and South America.

She is survived by her sister, Kim Orthner (Walt); her brother, Bill Seedman (Shannon); her brother, Paul McGann; and her four children--John Baker (Gay), Julie Baker, Laurie St. Laurent (Norman), and Tom Savage (Elizabeth). She was “Nani” to seven grandchildren--Emily St. Laurent, Ruby Baker-Poveromo, Christian Savage, Madeline St. Laurent, Daniel Savage, Zane Baker-Poveromo, and Tatiana Savage. She’ll also be missed by her cousins, nieces, nephews, and countless friends and neighbors.

Calling hours are Friday, April 5 from 4:00pm - 6:00pm at Brooklawn Funeral Home, 511 Brook Street, Rocky HIll.  Funeral Services will be held at 10:30am on Saturday, April 6 at Grace Episcopal Church, 55 New Park Avenue, Hartford.

“Out beyond ideas of wrongdoing and rightdoing there is a field. I’ll meet you there.” ~Rumi

Checking in: My Memoir, My Pause, My Storytelling

I just applied for a scholarship for Grub Street's Master Memoir workshop so I can finish this mother once and for all. The mother in question is my book, Maybe I'm Just Lazy: One Woman's Journey Through MS and Life. According to the Multiple Sclerosis Foundation, more than 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States. I'd say that's an audience.

For those of you who don't know, my high-tech marketing job was making me sick so I quit my 20-year career in December and took a minimum wage job as a barista at a coffee shop a 3-minute walk from my house. It was either that or a mental hospital and maybe colon surgery. That''s a whole other book and a whole other blog which is not yet public. My working title is either The Power of the Pause or Operation Pause.

I'm also doing a ton of live storytelling these days (The Moth in Boston, South Shore Story Slams at Doyles, Massmouth, Now Listen Here, and random other story slams). Also working on setting up a blog for that to generate some paid gigs as a storyteller for kids and/or a storytelling teacher.

Just checking in. I still have MS and MS still doesn't have me.

Yoga

My new way to start and end the day is with yoga. Ok...full disclosure...it's only been two days and each session is only 20-minutes long, but all good habits have to start somewhere and I figure writing it here will increase my chances of sticking with it.

Shortly after I was diagnosed with MS, my neurologist at the time (the second of four, I believe) suggested I practice yoga to maintain my balance. I wish I had listened, but it's never too late. I have done yoga on and off over the years, but never on a daily basis, until now!

I've actually done yoga in some pretty cool places:

In the atrium of the Museum of Fine Arts ("Face the Chihuly sculpture in your warrior pose")

Morning Yoga on the dock at Ponkapaug Pond in the Blue Hills

And, now....in my living room with Rodney Yee's AM/PM Yoga for Beginners.

Namaste.

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

My MS
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.

MS on TV

Last night, my 11-year old son and I watched Guy's Grocery Games--a Food Network cooking competition show where families run through a grocery store then cook meals with challenges like "canned food only." (Don't judge me. Everyone has embarrassing TV viewing and mine could be way worse....he hem...Housewives franchise, anyone?)

Anyway, when one of the contestants was asked what he would do with his winnings, he said he would help his mother who was disabled due to Multiple Sclerosis. Then a picture popped up showing a woman slumping in a wheelchair. I took the opportunity to remind my son (for the umpteenth time) that "20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device"...which means that 2/3 won't need a wheelchair and those numbers will be even better for those that take disease modifying drugs.

I started thinking about how often I hear "MS" on TV. Lest you think we are a household of couch potatoes, you should know that, although I have been known to have marathon viewing of Showtime series and my teenager watches way too many shows about little people, there are days when the television isn't even turned on...much to the dismay of my children.

I used to watch the medical drama program House on a regular basis. More times than not, Dr. House and his team of diagnosticians had to rule out Multiple Sclerosis when they were trying to diagnose a mysterious paralysis. I don't drink anymore but I always thought it would be a great drinking game to do a shot every time someone mentioned MS.

Remember West Wing? The show made headlines when viewers learned that President Jeb Bartlett had a medical secret.  Yup, you guess it:  MS. Viewers learned a lot about relapsing and remitting Multiple Sclerosis including symptoms that came and went and injectable disease modifying medication.

According to the National MS Society, an estimated 2.3 million people have MS. So, I guess I shouldn't be surprised I keep coming across so many characters on TV who have or may have MS. And then there's all the real-live famous folks:  David Lander (aka, Squiggy); Richard Pryor (RIP); Montel Williams; Teri Garr; Jack Osbourne; Annette Funicello (RIP); Richard Cohen; Tamia; Clay Walker; Ann Romney; Kelly Sutton and Trevor Bayne (NASCAR); Joan Didion; Alan and David Osmond; Josh Harding (NHL); Chris Wright (NBA); and, according trashy tabloid sites that came up on a Google search for "celebrities with MS," even one of those Housewives may or may not have MS!

They're in good company.

Remember Me?

I haven't blogged in a really long time. I can fill this page with excuses about how I've been parenting, working, volunteering, having fun with friends, traveling, and falling in love, or I can commit to myself (and since it's public, to all of YOU) that that is going to change...right now.

I spoke about having MS and low vision at the Perkins School for the Blind last night for a launch party of a friend's new company--Visual Vitality. (If you want to learn more, visit their site at VisualVitality.org).

Telling my story and talking to people afterward has given me a desperately needed kick in the butt to re-devote myself to this blog and my book.

I was given 5 minutes to speak and I wanted to make sure I didn't ramble so I wrote some stuff down ahead of time. This is, more or less, what I said:


I’m thrilled to be here for the launch of Visual Vitality. My friend, June asked me to speak today as a representative of people with invisible disabilities.

So, here’s my story:  I was just going along, living my life as a fully abled person, not really cognoscente of that fact that everything could change at the drop of a hat until…well…until everything changed. One Wednesday morning in August of 2007, I woke up nearly blind in one eye. I assumed it was pink eye or the result of something equally innocuous. It took three days, a dozen specialists, and hundreds of thousands of dollars in tests later (thank God I lived in Boston and had health insurance) to learn the cause of my sudden vision loss.  After hours going back and forth between MGH and the Mass Eye and Ear Emergency Room, Dr. Kenny Chang, pulled me into a private room to give me a diagnosis.  Now I’ve watched enough Gray’s Anatomy to know it wasn’t good news. They can tell you about negative results in the hall. And I was right. I had MS--Multiple Sclerosis.

Until that day—September 1, 2007—I knew almost nothing about MS. I thought everyone with the disease was in a wheelchair or would be soon. I didn’t know that MS could affect any part of the central nervous system. For me, it was and is my optic nerves. My vision deteriorated still more and, before they were able to stop the progression, the damage had been done. You see, MS attacks the myelin coating over our nerves, I think of it like a big ugly rat eating the plastic cover on an electric wire. When the nerve is exposed, there can be permanent damage. For some, it’s the spine (hence the wheelchair) and for others, it’s the optic nerves. I once heard that if you put a hundred people with MS in a room, they would have 100 different sets of symptoms.

In the last 7+ years, I’ve learned a lot about Multiple Sclerosis and living with low vision, including that people don’t always know. As I often say to people who tell me I don’t look like I have MS, it’s not a disease of the face. I no longer drive, I read large print, and sometimes I have balance issues and trouble navigating unfamiliar or crowded spaces. But I don’t wear a sign or use a cane. And if I don’t need a cane, should I have to use one for people to make reasonable accommodations for my disability?

When I go into a doctor’s office and they hand me a stack of forms to fill out, I always ask them if they are available in large print. They usually aren’t. Most medical staff are more than happy to read the forms to me but that’s not what I asked for. I learned how to read at 4 years old and I want to read them on my own. And I should be able to. The technology exists to make that possible for me. Why not hand me an iPad where I can make the forms the size I need or listen to an audio recording of the medication side effects myself? What if doctor’s offices and other businesses could be trained about how to provide this kind of equal access to people with disabilities?

I am not bitter and I do not feel sorry for myself. I believe that MS is a gift in my life. I’ve learned so much about myself and the world, I’ve met amazing people in the MS and other disability communities, and I believe I am a better person because of my MS.

People with disabilities—minor or major—want to fully participate in life. Sometimes we need accommodations to make that possible. Visual Vitality is going to help everyone get the equal access promised by law.

Thank you very much and congratulations Visual Vitality. You’re doing important work.

Watch this space. Lazy Julie is BACK.