PLEASE WATCH!!!

Bev Knaup is a dear friend of mine from college (she also went to Marshall High School, for the locals). She attended Rose-Hulman Institute of Technology with Jackson and her husband, Brian, and Jackson were fraternity brothers and good friends all through college. While serving in the US Air Force, Bev was diagnosed with Lupus and is very involved in fundraising at a national level! Please watch this video to see her story.



If you would like to donate, click here!

The link to her blog is on the right-hand side of the page also.

Also, she posted this story (her summary of someone else's story actually) on her blog awhile ago that puts things into perspective. It is impossible to know the struggles associated with Lupus if you do not have Lupus, but this story gives us a tiny glimpse into "a day in the life".

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This is worth the read, I promise, it is lengthy but an easy read. So I will summarize the best I can.

The author of this theory has lupus. She was out to dinner with her best friend. Her best friend asked her what it was like to have lupus. So she struggled with trying to find the words, looked around and saw spoons on the tables. She quickly grabbed up the spoons and handed them to her friend. She said, "Here you go, you have lupus."

The friend was a bit confused by being handed a bouquet of spoons. She goes on to explain 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 her explanation, she used spoons to convey this point. She wanted something for her friend to actually hold, so that she could then take away, since most people who get sick feel a “loss” of a life they once knew. If she was in control of taking away the spoons, then her friend would know what it feels like to have someone or something else, in this case Lupus, be in control.


She asked her friend to count the spoons. Her friend asked why and she 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.

Her friend counted out 12 spoons. She laughed and said she wanted more. The author told her no. She also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

Now to put the spoons to use. She asked her friend to list off the tasks of her day, including the most simple. As her friend rattled off daily chores, or just fun things to do, the author explained how each one would cost her a spoon.

When her friend talked about getting ready for work as the first task of the morning the author immediately took away a spoon. Practically jumping down her throat saying, "'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.”

A spoon was quickly taken away and her friend realized she hadn’t even gotten dressed yet.

Showering cost her 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 the author cut her a break; she didn’t want to scare her right away.

Getting dressed was worth another spoon. She then broke down every task to show her friend how every little detail needs to be thought about.

You cannot simply just throw clothes on when you are sick.

You have to see what clothes you can physically put on, if your hands hurt that day buttons are out of the question. If you have bruises that day, you need to wear long sleeves, and if you have a fever you need a sweater to stay warm and so on. If your hair is falling out you 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.

The message to her friend was starting to sink in when she theoretically hadn’t even got to work, and she was left with 6 spoons.

The author then explained to her friend 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”.

She also explained that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, 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.

The author wasn't trying to depress her friend, but wanted to be realistic, and unfortunately being prepared for the worst is part of a real day for people with lupus.

They went through the rest of the day, and her friend 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.

The author 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 she explained, that she didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway.

So she decided to make soup, it was easy.

The author then said it is only 7pm, you have the rest of the night but may 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.

Her friend had gotten the message. It seemed to be just the right way to explain to a non-lupus person, just exactly what it is like to have lupus... every day... for the rest of your life.