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 quit smoking about 12 years ago. I have not had a single puff of a single cigarette during that time but that does not mean I have not wanted to. Many times, I've walked by someone smoking, inhaled the smoke and thought, "Mmmmmm." To a non smoker that may sound strange but nicotine is the most addictive substance I've every used. (And I've used plenty, believe you me.)
My father quit smoking at the same time as I did but the damage had already been done. Watching him die from emphysema and struggling for each breath definitely removed any residual cravings for cigarettes.
Just in case that craving returns, I now have another reason not to smoke. According to this article, smoking can quicken the progression of MS.
I slept 8 hours Friday night and 12 hours Saturday night and I think I'm sane again....well, relatively. My thoughts are a LITTLE more organized and I'm no longer in danger of buying an exercise stripper pole I saw advertised on an infomercial at 3am or dying my hair purple. Now if only I could stay focused on editing my book and writing the proposal.
I almost said something when a woman ahead of me at the store purchased cigarettes for more than $8 a pack with a credit card. I am SO lucky I do not smoke anymore. If I did smoke, I would probably be sitting in the dark.
On my train ride home from the MS clinic, there was a woman dressed sort of like wonder woman but she was not in costume. She had red cowboy boots on, a royal blue, flouncy mini skirt, and a tight white tank top. She was probably at least 5' 11". As I heard Roseanne say once, "She was so sexy that I got a boner." The guys around us on the train had trouble pretending to keep reading their Metros.
Why do I like to cook but hate to clean?
Why did my town DPW department take the garbage from my 40-gallon barrel for a solid year but today they left my two measly garbage bags behind with a sticker saying that I had an "improper trash container?"
If I plant a tree in a memory ceremony for my dad, would it be inappropriate to sing Jim Croce's "Bad, Bad Leroy Brown?"
To paraphrase Paula Poundstone from the This American Life podcast I listened to on the train, "Why was no one suspicious about Bernie Madoff. With that name, no wonder he made off with everyone's money? Would you go to a counselor named Dr. Cantkeepasecret?"
I think I've already asked this elsewhere in this blog, but I do have a brain disease, after all: Why do people who could possibly have trouble speaking have a disease that is as difficult to pronounce as Multiple Sclerosis? It's just mean. If it was just called Many Scars, that would be much easier to say.
You know the voluptuous young, barely legal women on the late night sex chat commercials? Do the men who call REALLY think they are talking to those women? And what about the women that call? Do women call?
How can I be tired and wired at the same time with absolutely no desire to clean the house or do work writing?
Do Swedes furnish their homes with Ikea decor more often than Americans?
I'm at the MS Center for my monthly infusion of Solumedrol. I am actually a week late and I can really feel the difference with my fatigue. I have been literally falling asleep at my computer the last several days after inadvertently blowing off my appointment last week. More incentive to remember appointments. I'm thinking I need to win the lottery so I can hire a professional organizer to help me remember appointments...and pay bills.
The MS Center understands when you forget an appointment--after all, MS is a disease of the BRAIN. The gas company, however, is not quite so understanding. Although I had plenty of money in my bank account, apparently I am long overdue on paying my bill and received a shut-off notice today. I called up to pay the bill over the phone and learned that I had lost this privilege because it was SO overdue. Then, when I tried to pay online, I was told that I would have to wait 7-10 days until my checking account was validated. The customer service person I spoke with was no help whatsoever and could not guarantee that it would not be shut off this evening. My only option is to go to one of the in-person payment sites, which I guess I will have to do. I'm not sure when, though, and I'm thinking I can get by without natural gas coming into my house for a few days.
Uh-oh. I just remembered that I invited a friend over for dinner tonight and, you guessed it, I have a gas stove. Hmmmm. Maybe I can make chicken on the George Forman Grill and pay the bill tomorrow? I'm not TRYING to be a scofflaw but I will be hooked up to the IV until 4:30 and then I have to take the train home which takes about an hour.
When these kinds of things happen, I feel like a total LOSER. I am 45 years old, work a full-time job that pays a living wage, and my gas may be shut off.
I need a professional organizer to help me figure out how to do this stuff regularly, consistently, and on time. Maybe I can barter my marketing/PR writing skills in exchange for some sessions. Hmmmm. Ok. This is one of those "this is not the least bit inspirational it's just me bitching and moaning and updating my status" kind of posts. Forgive me.
I haven't given myself my Rebif injection in about two weeks. I'm not quite sure why. Perhaps, since I'm consciously trying NOT to engage in my typical rebellious activities while I'm working on my Fourth Step, I've decided that medical rebellion is the way to go. I'm not escaping with dating, sex, or relationships; not completely out of control with food; no recreational drugs, alcohol, or cigarettes; not spending excessively; so why not neglect my MS drugs. Hmmmm.
Apparently, I'm done with this latest demonstration of my rebellious nature since I'm telling on myself in my blog. When I start confessing, it means I'm getting ready to cut the shit.
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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