In September '07, I was diagnosed with Multiple Sclerosis. In an effort to maintain my sense of humor while integrating this new reality into my life, I started this blog, which has become my public journal, an opinion column, and a rough draft for my book. MS prompted this project but it's also about life in general. My life, that is.
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
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 occurs more commonly among people with northern European ancestry, but people of African, Asian, and Hispanic backgrounds are not immune.
Most people with MS are diagnosed between the ages of 20 and 50.
Two-three times as many women as men have MS.
MS is Lazy!
I just read this on an MS support group site and it made me feel better about feeling "lazy."
When the myelin covering on the nerves is lost/disappears/whatever it does, the nerves don't conduct brain messages nearly as effectively. It's kind of like the nerves have to find new pathways for the messages from the brain. So the messages are much slower in reaching their destination and it takes more energy, trying to find the right paths. This made a lot of sense to me and helped my not feel so 'lazy'.
I would love to give the proper attribution for this story but I have no idea where I found it! I think it may have been posted to an MS community site.
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about MS. She came to doctors with me and she saw me walk with a cane. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.
I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have MS”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.
So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with, which you wont know until you wake up. To answer your question we’ll start your day with twelve. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out the12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon.
I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my shoulders and back hurt I wont be able to put on a bra. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.
I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a virus comes, or a treatment reaction, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so dizzy, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.
I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.
I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say that she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
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. 
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