Wish I never had Multiple Sclerosis

Disease: Multiple Sclerosis

Child with Multiple Sclerosis
Child with Multiple Sclerosis

It is a disease in which the body’s immune system eats up it’s own protective sheet (myelin) that covers your nerves. This damage to myelin causes interference in communication between your brain, spinal cord and other areas of the body specially the limbs.
Symptoms: Numbness or fatigue in one or more limb, double vision or blur vision, Pain in body parts, tremors, lack of coordination, electric shock sensations with head movement, slurred speech, heat sensitivity and dizziness.
Treatment: The disease is irreversible and has no cure. It can only be managed and certain medications can be used to prevent MS attacks and stop the further progress of the disease.

This is how an MS patient Christine Miserandino writes in order to explain her life and her experience with the disease. The tasks that she can’t perform like normal people and how she explains her life with examples. A must read for all.

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 spend 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 spend most of our time laughing.
As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick.
MS
I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS.
She had come to the doctors with me, seen me getting MRI’s, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn’t walk another step, what else was there to know?
I started to ramble on about the vitamins and the changes but she didn’t seem satisfied with my answers. I was a little surprised as being my roommate 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 healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me…having MS.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. 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 person with MS goes through every day with clarity?I could have given up and 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 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 together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an 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 their actions will have. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the “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, 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. Little did she know how serious the game would become.

I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of spoons.
But when you have MS and you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn’t guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 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 the game 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 her day, including the most simple tasks. 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 your eyes open and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!”
I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.

Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn’t want to scare her too much in the beginning.
Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order.
You cannot simply throw clothes on when you have MS…its just not that easy.

I think she started to understand when she theoretically didn’t even get to work yet 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 has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling.

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 the 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 on her computer for too long. She was forced to make choices and to 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 two spoons left. If she cooked, she wouldn’t have enough energy to clean the pots.
If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. 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 maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, “Christine, how do you do it? Do you really do this everyday?”
I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can’t ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on 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 to do everything. I fight this very 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 the 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 and my own body before I can attack any one 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 having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom.

I miss never having to count my spoons.

After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say 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 and we walked out of the diner. I had 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 every day? I don’t have room to waste them, and I choose 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 look at their own life a little differently. 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 words, every time 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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9 thoughts on “Wish I never had Multiple Sclerosis

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  1. Great post! It brings the subject to light, Of how important research must be done to find a cure and people need more understanding about what it is, I’ve seen how difficult it is for many.

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    1. Thank you for your time. The main purpose why I started this category is that people need to be aware of how the ones with chronic diseases feel. They are amongst us and are struggling real hard. Apart from the appropriate cure social acceptance can also minimize their pain.

      Sent from my Windows Phone ________________________________

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      1. I was thinking the same when I was reading your post, While on the subject of acceptance on my post. I’m glad you brought the subject to light, something people need to be more aware of 🙂

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      1. In school, I had to almost demand a 504 for my daughter. She has only so much energy available. Some mornings she could not get out of bed even though she went to sleep by 8 or so.

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      2. Handling these kids can be a real challenge for parents as seeing little kids in pain is not easy at all. But if the parents work hard on this cause they can give their kids a new direction, a new way to make up their mind and thoughts.
        Because the disease itself is not a misery, its your mind and thoughts which make it one.
        I hope you are going really well and happy with your daughter. I wish the best for that little soul. Stay blessed and happy. 🙂

        Like

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