Death, Dying and Other Uplifting Topics

I am lucky to have not experienced many deaths in my life. I can count on one hand the number of funerals and memorial services I have attended. While in one way this is a blessing, in that most people close to me are alive and well and I haven’t borne witness to many true tragedies, in some ways my psychological and spiritual knowledge of the concept is somewhat stilted and immature. I haven’t thought much of death, or my own opinions on the afterlife, simply because I haven’t had much necessity to do so.

The people I surround myself with in my life, both in “real time” and in my online dabblings, lean towards the intellectual. While a well-crafted “your mom” joke is certainly appreciated, and goofiness is welcomed, most of my friends and acquaintances tend to have very strong and well-researched opinions and knowledge on a wide variety of subjects. I have friends who are particle physicists, social workers, artists of various mediums, literary Doctorates, lawyers, computer experts in both software and hardware, engineers and more. The majority are college graduates, and a large percentage hold a post-graduate degree, some with several. So, it goes to say, that I often find myself in the midst of debate on particularly heady topics.

Recently, an individual I follow on Twitter, who is a college professor and holds a Doctoral degree, was discussing his theories on the afterlife. From his scientific viewpoint, he speculated, we’re all just matter. There’s nothing that differentiates our particles from any other carbon-based life form, and when our physical entity ceases to create and consume energy, that’s the ultimate end of our existence. Interestingly, he chose to cite Heidegger, a philosopher, rather than any scientific evidence as support for his thesis: that the concept of life after death conflicts with many major scientific concepts. This struck me as being somewhat intellectually arrogant, and also devoid of any emotional ideas or feelings about death, which I feel are impossible to completely separate from any “facts” one might propose, and shared this opinion with him. Then, of course, he was curious as to what my opinion on the matter was, and what I based my beliefs on.

This was the moment where I realized: I have no idea what my opinions on the afterlife are. Or at least, I didn’t think I knew. Taking a moment to collect my thoughts and attempt to condense them into 140 characters, I realized that my opinion, as well, is based more on science than religion. The reason I don’t propose one answer or one distinct concept of what the afterlife is like, is because I have no personal data on the subject. I don’t know, I haven’t been there, and no other living human being can even begin to think that they have concrete proof of what happens or doesn’t happen. I don’t really subscribe to any one religious or philosophical dogma, and while I have my hopes as to what the afterlife will hold for me and those I love, I simply have no idea what it is actually like, or if it exists at all.

And, it dawned on me shortly thereafter, I am entirely comfortable with this. I’m not foolish enough to think I can predict what will happen during my own life, so why waste energy fretting about what happens after it? This was a pretty big “a-ha” moment for me, as I’ve always been very keen on planning and controlling my own life as much as possible, and often would find myself inconsolably panicked and distraught if things didn’t align to my own plans.

Well, the past 4 years have pretty much succeeded in shooting many of my plans to hell, so I’ve been forced to come to the realization that to some degree I have no idea what is going to happen in my life. I can strive to be financially and personally successful, and surround myself with people who make me happy, but other than that it’s pretty much a crapshoot.

Since 2006 my husband got been sick–very sick–and was diagnosed with a syndrome that can pop back up whenever it feels like it and render our lives far more difficult than we could have imagined. I’ve also had two jobs from hell, encountering individuals whose behavior was far more sociopathic and malicious than I ever could have imagined. I  made a complete and total career change, supported my parents through a very difficult time wherein professional allies turned out to be enemies in every sense of the word, survived a bout of depression that landed me in a psych ward, and, the icing on the cake, been diagnosed myself with some major and chronic health problems which you’ve all heard plenty about lately.

All of these realizations about my complete lack of power over the course of my life and the afterlife have come at a somewhat poignant time, as I near the first anniversary of the death of my grandmother. Not knowing for myself is one thing: but not knowing what a loved one experiences in the afterlife, if anything, is more difficult for me. While the thought that good people go to heaven and bad people go to hell is comforting, what about good people on earth who go through living hell for no reason? My own struggles in the past few years pale in comparison to what some people are forced to live through.

It does bother me to think that I don’t know exactly what happens when the people I love leave this earth. No matter how strongly one believes in one’s faith and its description of the afterlife, the reality is that belief and knowledge are two different things. This creates, for me, a philosophical and spiritual query wherein I can see only two options:

1) Resign myself to not knowing.

2) Come up with my own thoughts on the subject, based on my own grab-bag of religious and intellectual concepts.

A true intellectual would say that option #2 is just a safety blanket to protect one’s feeble mind from a giant scary unanswerable question. However, in my experience, most “staunch” intellectuals are, frankly, often completely isolated in their own brains and incapable of interacting with the majority of the human race. They are often, also, arrogant, pedantic pains in my ass.

So I guess, for now, I’ll go with option #2, and begin to start forming my own thoughts on the subject. Based on my recent life experiences, I would have to say I don’t think I believe in hell, at least in a traditional Judeo-Christian sense, because I think life affords us all plenty of hellacious personal experiences, and human beings and animals as a whole suffer plenty at each others’ hands on earth.

And I know what I would want for my loved ones: My MomMom, paternal Grandmother, and both Grandfathers who are now all no longer with us. That is, I would want it to be whatever they want it to be. I would want them to be happy, and beyond that the specific parameters should be whatever they desire them to be, based on their own personal and spiritual beliefs. No matter how intellectual one is, I think everyone shares this hope. And, logic would dictate, that if every human being can agree on this fact, that they would just want their loved ones to be happy, then doesn’t it stand to reason that maybe that is the reality of the afterlife.? I hope so.

June 20th will be the one year anniversary of MomMom’s passing, and, also, my 6th wedding anniversary. While the day will be difficult for me, or at least bittersweet, I can hold on to the hope that at least she’s had a better year than I have. I hope she had a great year, because it’s what she deserves. That’s the best I can do: to hope, and for now, I’m okay with that.

“Spoon Theory”- aka Life with a Chronic Illness

I’ve seen this article before, prior to being diagnosed with Fibro and CFS and all that happy horseshit, and at the time I didn’t think much of it, but now , having a new first-hand perspective, it resonates with me a great deal, and is probably the best analogy I’ve seen to help explain to people how your every day life has to be adjusted when dealing with chronic illness.

To my fellow Fibro friends–I promise, I’m still working on getting a dedicated page on here just to discussion of Fibromyalgia/ME/CFS stuff, it just hasn’t quite happened yet.

I’m also still planning a domain move–I’ve been courted by a few but have yet to make a decision or even have time to do so as the academic year comes to a close. My summer promises to be more leisurely, so you’ll be hearing more from me here and on Twitter and Gather.

Without Further Ado-“Spoon Theory”

by Christine Miserandino www.butyoudontlooksick.com

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 Lupus 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 Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. 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 Lupus. 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 Lupus”. 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 Lupus, 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. 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 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 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 Lupus.

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 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 I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. 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 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. 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 nauseous, 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 “Christine, 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.”

Its 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 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 Lupus, 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”.