Maybe I'm Just Lazy: One Woman's Journey Through MS and Life: No Volvo and a Long Needle in My Back

Saturday, September 29, 2007

No Volvo and a Long Needle in My Back

I know the Universe has a better Volvo out there for me, but this was a huge disappointment yesterday. Ken and I drove down to Scituate with the plates from my minivan, ready to pick up my new car only to learn that the seller didn't fix the completely broken and inoperative emergency brake as promised.

Here's our email exchange before and after going to pick up the car. First, the email I received from the seller's wife on Thursday, confirming the fact that they were fixing the car and that I was picking it up the next day:

Hi Julie, We dropped the car off at the repair shop and told him it must be repaired tomorrow. He is reliable so I'm not worried.
Then, I received the following email from the seller himself on Thursday night:

The car should be ready at around 1-2 pm. I will keep on him to make sure this gets done.
I emailed him the following day before I left home AND followed up with a voicemail message:

John, I am leaving my house now for a 12noon appt. so I won't be on email. Are we all set to pick up the car, title, and bill of sale at 2:00pm-ish? Please call my cell to confirm: xxx-xxx-xxx, I won't be able to answer during my appt. but I will call you back. Thanks, Julie

He responded via a message on my voicemail saying that he would see me in Scituate after 2:00pm. I ran around like a chicken with my head cut off, getting a cashier's check (made out to myself, thank goodness), got to Ken's, took the plates off my van, waited for Matt to get off the bus so Ken could drop him at a friend's, and got on Rt. 3A and into tons of Friday afternoon traffic. (I called during the ride, got Seller John's voicemail again and left a message, saying that we we were running a bit late, I could be reached on my cell, blah, blah.)

Around 3:00 or so, we got to Scituate and I knocked on the door. Seller John's pretty daughter answered and shooed back the pretty dog inside. Seller John came out, hiked up his belt and said, and I quote..,"We have a conundrum." Picture this guy. Very, very white, balding (but not in a hot Ken way), wire rim glasses, polo shirt, khakis, Blackberry strapped to his belt, big huge house in Scituate, his own law firm out of his house...you know the type (not that moi would stereotype someone based on their appearance). He told me the emergency brake was still broken but that is was no big deal ("how much do you really use it, anyway") and that he would take a couple hundred off.

I tried not to cry or spit at him, told Seller John that I needed a car that was ready to pass inspection and drive, as is, with no repairs. I said something about him calling me if and when he fixed it. Then Ken got to hear every swear I know on the way home.

After we got back to Ken's and I put the plates BACK on the minivan, picked up the kids, had dinner, and went to a much-needed meeting that has babysitting for the kids, I came home to find the following email from Seller John:

My apologies regarding the brakes. My Mechanic spent all day getting the check light out and was only able to tighten the brake cable. It needs some more work. I will be bringing the car in on Monday and advise you as to the results.

I thought this deserved a response and I did not hold back:

No thank you. I no longer feel comfortable doing business with you and I plan to continue my search for another used Volvo.

Just to set the record straight: I left you a message at 2:30 p.m., telling you that I was leaving Weymouth to drive down to Scituate with my boyfriend who was rearranging his schedule to do me a favor. In that message, I told you that, if you needed to reach me, I would be available on my cell and I left that phone number once again. You did not choose to call me but, instead had my boyfriend and I drive all the way down to Scituate on a Friday afternoon for what felt like a fool's errand. Your offer to "take off a couple hundred" was inappropriate and manipulative. You knew I wanted the car, had a check in hand, and thought I would just say "yes" so I could drive off with a new car. You were wrong. Had you called me and told me the emergency brake was still not functioning properly in order to pass Mass inspection at any inspection station of my choosing, I would have said, "please fix it or no deal." I made it very clear that I was looking for a car that needed absolutely no work to be inspected, registered, and drivable.

You are an attorney and you made a deal with me. We agreed, orally and in writing, to $2500 AFTER you repaired the valve that made the check engine light come on and AFTER you repaired the emergency brake to working order. While "your guy" may have let the illegal and inoperative emergency brake pass inspection, I care about my safety and the safety of my children and other passengers. An emergency brake is required by law for a reason--SO YOU CAN STOP YOUR CAR IN AN EMERGENCY.

Since you are an attorney, perhaps you are familiar with the Massachusetts State law requires a private seller to have a car inspected or ready to pass inspection. As ou know, the Volvo's sticker expires on Sunday. Good luck selling your car.

Maybe this isn't a good thing, but sometimes I love what how bi&%$y I can be in writing when I'm mad. (Some of you may remember my letter to Dan Shaughnessy after his "tiny teen angels" comment about the women's olympic gymnastics team. He, he, he. It pissed him off so much he called me to argue his point further! He, he, he.)

So, the Volvo search continues. Someone offered me $1500 for the painted minivan (I'm holding out another week in the hope of getting $2000.) No test drivers have shown up yet for the Buick. If no one buys either and I find a Volvo, I will donate both and get the write-off. Maybe the MS Society takes car donations...?

Oh, to top things off, I found out yesterday that I STILL have to get a lumbar puncture even though my second MRI on 9/17 confirmed the MS diagnosis. The neurologist told me that it's too establish a base line or something like that before the disease modifying drugs start "changing things." It's scheduled for 9am on Friday, 10/5 (for anyone who wants to send me reiki/prayers/positive vibes/good thoughts). I'm scared...no TERRIFIED...of the pain. I'm sure it will be like most things...way worse in my imagination.

1 comment:

AnonymousOctober 4, 2007 at 1:44 PM
Hey Julie,
Last night I sent you reiki for Friday's test, from Thurs evening through Friday evening. It was a pretty cool experience, my hands were really pulsating strongly the whole time. I called Colleen to ask her to do the same. Now if I read right from a more recent entry, is this test postponed? Either way I know you can use it. xoxo, Laura
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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'.

The Spoon Story

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".

Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Saturday, September 29, 2007

No Volvo and a Long Needle in My Back

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Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Saturday, September 29, 2007

No Volvo and a Long Needle in My Back

1 comment:

Sharing is Nice

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Where are you?

MS Books and Related Titles

MS Blogs

The Facts of MS

Info About MS

Who Gets MS?

MS is Lazy!

Blog Archive

The Spoon Story