A Time to Grieve

Hello out there; it’s been a while. Sadly, I have no earth shattering progress to report for the time being, but I have been keeping it together for the most part. I’ve been reading (and re-reading and re-reading) A Time to Grieve by Carol Staudacher and can relate to the majority of the thoughts and feelings expressed by the survivors. The great thing about this book is that it’s designed to be read a page at a time, which fits rather well with my current ability to concentrate.

This morning, there were a couple of entries that struck me:

“I get so tired of having to put up a front and say I’m okay when I’m not.”

“Being in public takes its toll.”

The crux of the first is that when others ask how we are, we are likely to respond with “fine, thank you” even though we are not okay. (I am long past being able to put up such a front and fluctuate between trying to reacquire the will to be able to pretend again and saying screw it while allowing the brutal honesty to fly. I’m sure at times people are thinking “Put it back in! Put it back in! I know too much!”, but I just don’t have the energy or desire to pretend anymore a lot of the time). Anyway, the point is that we are so concerned with being socially acceptable that we don’t reach out for support when we need it most. I can relate. The author urges survivors to let those who are close enough or caring enough in and not try to hide their feelings or disguise their state of mind.

The second phrase is followed up with the quote: “When one is pretending, the entire body revolts.” It discusses the enormous amount of energy that is used up doing things that we perceive as being socially required. Staudacher states that trying to create and maintain an artificial front contributes to that stress, which manifests itself in a variety of ways throughout the body (headaches, insomnia, the inability to concentrate, the impulse to be on the move, to name a few). She urges survivors to be kind to themselves by reducing the amount of time and effort they put into doing what seems socially required, avoiding false situations or performing in a way that differs significantly from their truest selves. She reminds survivors that their bodies will revolt against pretending and encourages them to look after themselves by not forcing certain actions or responses, regardless of the pressure put on them to do so.

Smart lady. A big shout out to the person who gave me this book. It’s been really helpful; thank you very much. I’ve given copies to a few other people who are struggling to come out on the other side of their own grief. Hopefully it will be a useful tool to help them work through too.


Power Tools

I’ve been playing with power tools lately in an attempt to spruce up my surroundings.

“Power tools?” said Owen. “I can’t see you doing that. Where I can see you is sitting on the sidelines, criticizing someone else’s work.”

Though I agree that would typically be a role to which I am far better suited, I am in the process of expanding my horizons. First came the driving across the country (Joey was typically the driver in the relationship), then came the power tools (he worked; I criticized). Next thing you know I’m going to take up golf. But let’s not get too crazy.

My goal is to switch things up in here enough that it still feels like home, but has better energy and isn’t left to stagnate. First came the couch, then I found a cabinet in storage that I was unaware we even had, then I finally assembled a Christmas present (Shelley’s trunk of rocks) that we got from Momma R and Daddy G for Christmas the year before last. Next in line are the table and chairs, hence the electric sander. On the plus side, they can’t look any worse than they do already. On the downside, I am struggling not to strip their spindly little legs too thin or they’ll snap like toothpicks when guests come over and sit on them.

Is it wrong if I still consider that an improvement?


The Spoon Theory

I found the story below on a CF blog that I stumbled upon. Although it’s not our story, in a sense it is. The writer does an excellent job of articulating why my niece has made the decision to crawl through mud under barbed wire, get electrocuted, climb over the wall and jump off the other side (There’s 10-12 miles of this kind of stuff by the way). She wants to give people with CF, people like her Uncle Joey, a few more spoons. I know he sure would have appreciated them. Maybe if he had a couple more he could have gone skiing with two broken arms instead of one.

What a tough mudder.

The Spoon Theory

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 Cystic Fibrosis(CF) 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 CF. 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 CF. 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 Cystic Fibrosis”.

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 CF, 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 CF.

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 Cystic Fibrosis, 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”.

Tough Mudder


I’ve become a touch slack on the blogging lately, however, I’m choosing to look at the positive side of this. My energy is limited and I have been busy doing other things. I’ve been being more social, scheming on how to rearrange things in my house (I need change), and of course, working on getting better. It is shocking to me how much energy it takes to do things that seem so simple and that actually would be simple were I feeling more normal. That said, I think I’m making progress.

Here’s my big exciting news of the week: my niece Siarah has signed up to do the “Tough Mudder” in Whistler and I could not be more proud. In addition to actually surviving the obstacle course itself, she is also taking the initiative to turn it into some kind of fundraiser for CF (the event is already a fundraiser for veterans, so she’s doing a double whammy). I was thinking she should collect pledges for CF as a start (I know I’d sponsor her for sure). Does anyone else out there have other ideas? For more info on the Tough Mudder, click on the following link:


Good thing she’s a feisty little devil! She’ll need to be to pull this one off. What can I say? The kid takes after her Uncle Joey.