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.
I received this email from a number of friends and thought I'd share it here:
Make a donation to Planned Parenthood in the name of John McCain and/or Sarah Palin. When you make a donation to Planned Parenthood in someone's name, that person will receive a card stating that a donation was made in her/his honor.
This is brilliant!We can financially support a beleaguered organization that protects a woman's constitutional right to choose what to do with her own body AND protestthe threat to female rights by one of our own.
1235 S. Clark Street 1st Floor Arlington, VA 22202
I've received some feedback that I have abandoned my focus of MS and life and, in its place, I've used the public forum of my blog to spew my ill-informed political opinions. Ya, so? Remember: McCain and Palin do not support a woman's right to choose, their foreign policy will keep us in Iraq longer and will make our enemies hate us more; and they do not support embryonic stem cell research which is the best hope for a cure to MS. Please register and vote for Barack Obama and Joe Biden.
It's Rosh Hashanah and time for Jews to atone for mistakes and change the behavior moving forward. Since I'm Unitarian and we embrace the best of all religions, I felt the need to mark this important time in the Jewish calendar. But, because I am me, I will do it in my typical fashion.
I just watched the first debate between Barack Obama and John MCain. Clearly, I had a bias going in but, since this is my blog and the election is very personal for me this year (see embryonic stem cell research posts below), I will tell you why I think Obama "won" the debate. (If you have a different opinion, you can comment here or feel free to start your own blog. They're free, you know.)
Barack Obama did a fabulous job presenting his strength as a bridge builder. He is someone who will talk and listen to people (and nations) with different beliefs and perspectives, not just people who are already like-minded allies of the US. He clearly sees the US President as an important role model, peaceful coalition builder, and leader in world politics. His opponent, however, seems to think that the President should be the chief evangelist on a mission to spread American democracy, capitalism, and exploitation of all the earth's resources.
To me, Obama came across as smart, thoughtful, personable, innovative, and calm in the face of adversity, even after McCain insulted him several times via comments to Jim Lehrer. McCain never full embraced the freer style of this debate which allowed him the opportunity to address Obama directly. McCain actually never made eye contact with Obama. Weird.
I've decided to draft a post-debate letter to Senator McCain:
Dear John,
I saw your debate with Barack Obama tonight. You know--the one you were going to cancel while you played party politics in Washington? I guess it's been a pretty shitty week for you. First you said that the US economy was fundamentally sound, then there was a major crash on Wall Street. Then, although you suspended your campaign to rush to the nation's capital to finalize a bailout plan, you actually helped obstruct the plan and ended up showing up at the debate anyway. Bummer.
Thank you very much for your many, many, many years of service. I would like to suggest that, instead of spending your final years in the Oval Office where you'll make the rest of the world hate us even more and put more soldiers into harm's way, and invalidate as many constitutional rights as possible, that you instead focus on getting help for the post traumatic stress syndrome that I imagine you are suffering from the torture you endured as a POW. If you love soldiers so much, become a peer counselor. A bracelet and a story of a dead soldier's grieving mother is talking the talk. Trying to bring peace is walking the walk.
I don't really care what your opinion is on abortion. When you grow a uterus, you will have a right to have and express your opinion about reproductive choice. Until then, no one cares what you think. Just keep your hands and laws out of my womb.
Regarding embryonic stem cell research, all I can say is WTF? Neurologists are currently proving that the embryos that would otherwise be thrown in the trash, hold the hope of a cure for MS and other diseases. Why do you reject this exciting scientific discovery? Do you think infertile couples that don't use all the embryos they create, should simply discard them? What about the legal right to abortion and the embryos that are trashed after a pregnancy is terminated? If you believe that embryos are a precious life to be protected, how do you justify putting them in the garbage rather than using them to improve the life of a living, breathing, viable human being?
And, let's talk about the environmental ramifications of your energy plan. You say "exploit our national resources," but what you really mean is drill, pillage, kill polar bears, and generally desecrate the planet. Have you heard of something called wind power? And did you know that, in other countries, there are plug-in electric cars and not just hybrids that still bring in bucks for the auto and oil industries.
Thanks, too, for sending health care back to a bad, bad place of deregulation where poor people may die if they can't afford adequate care. You want to reorganize health care so people purchase their plans across state lines, but what happens to the people who don't have as much to spend? Their insurance premiums skyrocket (if they are lucky enough to have insurance) and they only seek medical attention in an emergency when the problems are more life altering with bills to match.
I'll close this letter with one of the nation's most pressing and timely topics: economics and the crisis in the financial, credit, and housing industries. Screw the people who have lost their retirement funds; jobs, savings, homes--let's pay the CEOs on Wall Street billions more to "fix" what they broke. Seriously, John?
I want the United States to be peaceful and prosperous. I want my country to be a world leader and a friend to other nations. I want all people, regardless of gender, sexual orientation, disability status, ethnicity, religion (or lack thereof), or bank account to have the rights that are afforded us in the US Constitution,
I wonder if they would give me trouble for wearing my T-shirt with an image of George W. talking into an iPod. There's a version of the Macintosh apple logo with the tagline: iDiot. I love it and it only cost $1 at the Boomerangs thrift store to benefit the Aids Action Committee.
Hmmmm. To be on the safe side, perhaps I should just wear my peace sign shirt. OOOOOH. Or, I could wear the T-shirt I make to be Sarah Palin that says, "I'm a foreign policy expert. I can see Russia from my house!"
Those were the words that completely and totally energized me.
They were spoken by a published author and an old friend of one of my closest committee members. I like and respect this woman's writing a great deal which is why I was even talking to her about my book at a Lobster Bake in Maine a couple weeks ago. She asked me what my book was about and, in an attempt to encapsulate the theme, I said that it was a collection of essays and a journal of my first year with MS. I added that I wanted my book to speak to people with MS the way that Anne Lamott's Operating Instructions spoke me when I was a new mother and when I have Terrible Mother attacks now.
Believe me. I know that I am not Anne Lamott or even in the same league. I was trying to explain that I wanted to be authentic, brutally honest, and beautifully human about my MS in the way that Anne Lamott writes about being a single mom in Operating Instructions. I admire Anne Lamott's ability to tell the truth even when it's embarrassing. Especially when it's embarrassing. She digs deep and finds the ugly stuff, the stuff we don't want people to know, the stuff we don't even want to know about ourselves, and then she writes about it and puts it out there for all the world to see. And then, it's ok. It's ok that she feels all that ugliness which makes it ok for us to feel it, too. And that's when the magic happens. The ugliness becomes beautiful.
Anne Lamott is my Lance Armstrong, my Pavarotti, my Meryl Streep. She is the best at what she does. She is the best at what I want to do.
So....when I heard that I was no Anne Lamott, I felt ashamed. I worried that I was trying to be something way beyond my abilities and talents. I thought "Who are you kidding, Julie? Of course you're no Anne Lamott! Why don't you just write your marketing copy and be happy with that!"
But, you know what? Those feelings passed. The negative self talk slipped away and I took all that energy that I once used to tear my self esteem to shreds and focused it on making positive connections and taking steps toward getting my book published.
Although I have aways feared "networking," I started reaching out to all the people in my various social and professional networks and asked for advice and encouragement. And I got it! I even sent emails to writers I admired to make new connections. Several responded to my requests to add them to my network. Other writers offered to be my readers/editors; a former co-worker turned life coach promised me three free sessions; a friend who just launched a PR agency offered to promote me and the book; others gave me the names of books and websites to read and visit for more information; and several people offered to connect me to their agents and/or publishing contacts.
This woman was right: I am no Anne Lamott . But you know what? I am Julie M. Baker. I am me and I'm going to make the most of that. Life is way too short to focus on what I'm not and what I can't/shouldn't do.
Is this MS or just age, lack of sleep, lack of exercise, stress, or _______________ (fill in the blank)? I am so tired that I literally closed my eyes and fell asleep for a few seconds in the bathroom stall at work this afternoon while taking a pee. I have floppy head syndrome (my name for the feeling that my neck is not totally holding up my very heavy head). I felt tingling in my right hand and my eyesight isn't great (I thought my coworker who sits maybe 10 feet away was eating a muffin and she was actually biting into an apple). I'm going to wait a bit before calling the neuro because he told me to call after symptoms lasted for 3-5 days. I'm trying to stay in the day and not imagine the steroid infusions, MRIs, etc. Just for today, I am taking my syringe of Rebif up to my room, giving myself my shot, and going to sleep.
Was tonight's episode of One Tree Hill really that sad or am I just hormonal? Was it really good scriptwriting or was I looking for a reason to cry? Am I sad? Why am I sad? And why the heck is a 44-year old mom watching teeny-bopper nighttime soap operas?
Unlike many smart people I know, I think TV is awesome. I'm not talking about all the bad stuff: advertising, most reality programming, violence, or any of the other scary crap that literally broadcasts the demise of our civilization. I'm talking about fiction....drama...really entertaining stories that allow me to completely lose myself, that make me feel things that are either different or deeper than whatever I was feeling before.
For example...I open the computer to write about how sad I felt watching a bunch of fictional characters mourn the loss of a fictional teenage basketball player and then...TV TO THE RESCUE!!!!!!!!!
I switch the channel and happen upon a movie called Fall and the tears are gone. The feelings aren't gone, though. They just changed. For the better. A lot better. This movie is most definitely not porn but it is very, very erotic in a really smart way. It's about a writer turned cab driver who falls in love with a married super model who is so much more than she appears on magazine covers and runways. They have a very, very steamy affair that reminded me of Kim Basinger and Mickey Rourke in 9 1/2 weeks but much, much sweeter.
Uh-oh. Lots of great sex and love scenes; cool cinematography; awesome music; great street scenes in New York, Madrid, and Paris; and intelligent and funny dialogue. But now I think it's ending sad.
It is. Shit! My novel is going to have to be my channel switch because I absolutely positively need to go to bed....and I'm sad again.
I'm very, very tired although I slept most of the day today. My legs and hips ache although I stretched and took a long walk. My eyesight is not great either especially with reading. I'm broke although I have a full-time, good-paying job.
That's the bad news.
But, since I don't plan to be a pathetic woose filling up valuable space in the blogosphere with a bunch of pessimistic whining about having MS and being a single, working-class parent, I will now switch to the good stuff. There is ALWAYS good stuff.
I have a roof over my head and enough food in the cupboards to make it to payday on Monday; Ruby, Zane and I have full bellies (we had turkey fajitas for dinner--mmmmm); my two healthy children are sitting next to me on the sofa watching Harry Potter and The Sorcerer's Stone; I have friends and a boyfriend who love me; I have a job I like; I have a higher power; I'm sober; I have health insurance; I have filled my prescriptions already, I'm going to a Lobster Bake in Maine tomorrow and Ken's driving; and I know that tomorrow is another day.
I am special just the way I am and Mr. Rogers told me so!
I don't exactly have a plethora of happy childhood memories so I cherish those that I do have. When I remember something fondly, it makes me feel warm and fuzzy and a little teary-eyed. If that feeling came in a bottle, pill, a powder, or you could roll it and smoke it, I probably would have become addicted to it. Hmmm. Maybe that's what I was hoping to find in that bottle, those pills, those very skinny cigarettes, and that powder. But I digress. Mr. Rogers was one of those warm and fuzzy spots in my childhood and, when my friend Liz sent me this picture of his famous sweater from her visit to The Children's Museum of Pittsburgh, it triggered my fond memories of this geeky minister on public television.
I moved around a lot growing up but I know that when I was four-years old, I lived next door to Tracy Ferresso. I remember that Tracy's dad was a really nice guy and that he had baby chicks that hatched from eggs in the garage. I also remember that Tracey and I got in very big trouble when we had a yard sale and sold our parents' belongings--or maybe it was just me who got in trouble. I also remember that Tracy went to preschool in September and left me all alone.
I asked my mother why I couldn't go to preschool and she told me that it was to teach children how to read and, since I already knew how to read, I didn't need to go. I think she told a bit of a fib but I kind of get it. The year I was 4, my older brother, John, was in first grade; Laurie was only 2 and Tom was a year old. So, I can only imagine that preschool cost money that my parents didn't have or it would have been a logistical nightmare to organize dropping me off and picking me up with two littler ones.
So, every day, I was all alone with no one to play with. I'm sure my mother was taking care of the little kids and I spent time alone, reading and watching PBS. Mr. Rogers and Sesame Street were my companions.
I've been told that, when Mr. Rogers took his dress shoes and jacket off and put his sweater and sneakers on, I mimicked his moves. Then, I talked to the television. When Mr. Rogers greeted us with "Well, hello! How are you today?" I responded, "Fine, thank you."
Throughout each show, Mr. Rogers reminded me that I was special just the way I was and that he was proud of me. He also taught me how to be kind and that it was ok to have my feelings and talk about them.
For a child that grew up in my chaotic household, these were revolutionary concepts. But I believed him!
So, when Saturday Night Live skits and other comedians made fun of Mr. Rogers, I never laughed along. I LOVED Mr. Rogers.
When I worked on ARTHUR at WGBH, I was very excited to learn that Mr. Rogers was going to be animated and voice an episode. In the story, Arthur is embarrassed when Mr. Rogers comes to stay in the Read home. He's afraid that his friends will find out and make fun of him for watching a baby show. Naturally, Arthur learns that everyone likes Mr. Rogers and, more importantly, people who like him, will like him just the way he is.
The really cool part was that Mr. Rogers came to WGBH after the episode was completed. Because he is so popular, Children's Programming decided that only people on the ARTHUR Team could go to the gathering where he would be. Thank goodness I was on the team!
I showed up as soon as the doors opened and got a seat near the end of the large conference table where Mr. Rogers would be sitting. I felt like I was waiting for a movie star or the pope or something! Mr. Rogers did not disappoint. He thanked all of us for the experience, told some stories I don't remember, and was generally just his very sincere, very sweet self.
Then, he stayed in the room to greet every single person individually. When it was my turn, I approached him nervously and reached out to shake his hand. He took my hand in both his hands and before I had a chance to say anything, he told me that he saw me in the group and he really appreciated how I smiled and was so clearly listening to everything he said. He told me that he was always a little nervous meeting new people but that my smiling face made him feel welcome and comfortable.
I couldn't believe it! I told him that he was a very important part of my childhood and that I remembered my time with him on TV each day very fondly. Then he said it. "You are very special just the way you are and I am very proud of you."
I'm really glad I didn't die in that moment but, if I did, I would have died happy.
When Mr. Rogers died a year or so later, I cried and definitely felt the loss of such a wonderful man. A few months after that, a woman on the ARTHUR team was leaving WGBH and found a photo of that very special moment when Mr. Rogers held my hand in both of his and told me that I was special. How lucky and I that one of the best meetings in my life was photographed for posterity! (Forgive the quality of this image. I had to take a photo of the original that's on my fridge.)
We need to make this election about Obama, not about Palin or even McCain. I try really hard to be a glass half full sort of person and that means focusing on what's good about Obama and Biden and not what's bad about the Republicans.
Ok. So, I've established where we need to be....and where I want to be. And now, here's where I am. I thought this was HYSTERICAL. What do you think?
My last post about the importance of voting with an aside about my intention to vote for Obama incited more anonymous negative comments than ever before.
I believe I heard that goats are kind of like pit bulls when they bite onto something. They have a lot of trouble letting go. I am most definitely a goat.
McCain Anti-Choice Video where he plainly states that "life" begins at conception and, as President, all policies will be "pro-life," from which I draw the logical conclusion that that would include the opposition to embryonic stem cell research. McCain Anti-Embryonic Stem Cell Research Video where, in speaking to the same Christian Minister in what looks like a crowd of very sympathetic and very White supporters, he talks about how "pro-lifers" can't support embryonic stem cell research.
Palin Anti-Choice Video #2 where she says she would always "choose life" and would not support a rape victim's right to abortion. I'm guessing that, if she would allow a child who was raped to give birth to a rapist's child, she would also ban embryonic stem cell research.
My sister and I could not be two more different people. It's really hard for me to believe that we grew up in the same house (and for my first 14 years, in the same room!).
But every now and then she surprises me. One time was when she switched churches so I could be my niece Emily's godmother. The priest from the first church said that the world was divided into sheep and goats and that, as a goat (non-Catholic), I was not a good choice for a godparent.
This time, my surprise arrived in an email. I get a lot of forwarded emails from my sister. There are the urban myths, the tear-jerker stories about children dying, and the "celebrate national women's month" or some other such contrived holiday emails. So, when I opened the message copied below (written by someone else with my editorial comments in italics), I expected more of the same. I was wrong. ---------------------------- This is the story of our Grandmothers, and Great-grandmothers, as they lived only 90 years ago. It was not until 1920 that women were granted the right to go to the polls and vote. The women who made it so were innocent and defenseless. And by the end of the night, they were barely alive. Forty prison guards wielding clubs and their warden's blessing went on a rampage against the 33 women wrongly convicted of 'obstructing sidewalk traffic.'
They beat Lucy Burn, chained her hands to the cell bars above her head and left her hanging for the night, bleeding and gasping for air. They hurled Dora Lewis into a dark cell, smashed her head against an iron bed and knocked her out cold. Her cell mate, Alice Cosu, thought Lewis was dead and suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking, slamming, pinching, twisting and kicking the women.
Thus unfolded the 'Night of Terror' on Nov. 15, 1917, when the warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they dared to picket Woodrow Wilson's White House for the right to vote.
For weeks, the women's only water came from an open pail. Their food -- all of it colorless slop--was infested with worms. When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited. She was tortured like this for weeks until word was smuggled out to the press.
So, refresh my memory. Some women won't vote this year because -- why, exactly? We have car-pool duties? We have to get to work? Our vote doesn't matter? It's raining?
Last week, I went to a sparsely attended screening of HBO 's new movie Iron Jawed Angels. It is a graphic depiction of the battle these women waged so that I could pull the curtain at the polling booth and have my say. I am ashamed to say I needed the reminder.
All these years later, voter registration is still my passion. But the actual act of voting had become less personal for me, more rote. Frankly, voting often felt more like an obligation than a privilege. Sometimes it was inconvenient.
HBO released the movie on video and DVD. I wish all history, social studies and government teachers would include the movie in their curriculum. I want it shown on Bunco night, too, and anywhere else women gather. (Lazy Julie note: I had no idea what the heck Bunco night was all about so I looked it up. If, like me, you are not familiar with "parlor" games, check out this site.) I realize this isn't our usual idea of socializing, but we are not voting in the numbers that we should be, and I think a little shock therapy is in order.
It is jarring to watch Woodrow Wilson and his cronies try to persuade a psychiatrist to declare Alice Paul insane so that she could be permanently institutionalized. And it is inspiring to watch the doctor refuse. Alice Paul was strong, he said, and brave. That didn't make her crazy. The doctor admonished the men: 'Courage in women is often mistaken for insanity.'
We need to get out and vote and use this right that was fought so hard for by these very courageous women. Whether you vote Democratic, Republican or independent party -- remember to vote. (Lazy Julie note: If you want to help find a cure for Multiple Sclerosis, I urge you to vote for Barack Obama and Joe Biden on November 4. According to the Pew Forum on Religion and Public Life, both John McCain and Sarah Palin oppose EMBRYONIC stem cell research.)
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".
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