If there was an award for world’s worst blogger, I’d be buying a dress and heading to the ceremony at this point. At the very least I’d get an honorable mention.

There are a few reasons for my lack of attention in this area. First off, I haven’t had a reliable internet connection lately and sitting on the floor with my computer hiked up at an awkward angle is not my number one choice of how to spend my time, especially when not sitting on the floor with my computer hiked up at an awkward angle is an option. Second, I have a feeling that some people figure that I should be farther along and acting more functional than I am, so blogging about how I am still devastated, still miss Joey every minute of every day, and how basic tasks seem insurmountable at times makes me feel weird. I guess I have shut down to some degree because the thought of talking to people who don’t want to hear about it is…well, what’s the point really? It’s damaging. As a result, I am still talking to people because that’s how I’m going to get better, but I am just being more careful about choosing those people. As a result, I’ve been having a hard time getting inspired to write. Finally, I have been busier. I consider this a success, even if it has been simultaneously discouraging because I get tired, emotional and overwhelmed easily, even when I’m doing positive things. It’s still progress though and I’m happy I get the chance to see people and am getting out more.

So here’s what I’ve been doing for the last little while:

I went to Vancouver, did some visiting, and ran some errands. It occurred to me that I am turning into a real Powell River person again because I had to be organized, as my trips to the city are becoming more infrequent. Gotta see a people! Gotta get out to IKEA! Gotta hit up Costco! What a great deal on corn! Etc.

Highlights from the trip included time with the fam:

I was even able to have a rendezvous with April and Emma at IKEA. Now that’s efficient.

Once I was back in PR I did some more visiting with family that were in from out of town. I also actually went out (it’s as shocking to me as it is to you), attended the world’s worst play (I use that term loosely) and ate the world’s worst meal. Here it is:

This one was in competition with the “Spinach Cheese Slice” ala St. Paul’s hospital. Gluten free food isn’t delectable at the best of times, but this was a whole new level of bad. Dry, sauceless, nearly vegetableless rice noodles. When I put my fork in to take a bite, the whole plate moved. After I wrestled off a couple of chunks, I was done. My friend Drew, still hungry from his own substandard meal, then took a run at my leftovers. The highlight came when the plate was cleared out from under him while he was still eating. “Were you finished with that?” I asked. “I guess so” he replied sadly. Well worth the outing.

And then of course there is the work that comes with trying to be a healthier person again. It’s exhausting. For me, anyway. That’s still in full swing and new approaches are being tried with the hope that something will help nudge me forward. Any progress is good progress in my books. Happy that I’m continuing to make some. Go Cuba. That, combined with finally having a short term plan seems to have been a turning point.

Til next time,

K-Dub

My friend sent me the following picture the other day with the heading: “If Joey were on Facebook”.

I thought it was funny.

K-Dub

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.

K

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?

K-Dub

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”.

Yo.

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:

http://toughmudder.com/about/

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.

K-Dub

My friends and family are awesome. Have I mentioned this lately?

Let me count a few of the ways.

Last night, we had Joey’s first Powell River Pub Quiz night at Ang and Drew’s. Never mind that the majority of the group attended one that was organized for the food bank on boxing day, or that I am fairly consistently drilling people about CF related causes and organ donation awareness, and that this has been going on for years. People still came. People still care. Not just about me and Joey, but about making things better for other people with CF. That warms my heart in a way that I can’t explain. I feel very, very lucky to have such supportive people in my life. Or maybe they just came for the kick ass trophy:

The “Not Sure of Muches” were very humble in their victory, which was solidified after a nail biting tie breaker. The proceeds that were raised are being donated to the Vancouver CF clinic to help purchase another “kitchen cart” so that people with cepacia can make better use of the facilities while they are in the clink. (Cepacia is a bug that doesn’t affect healthy people, but if you have CF and catch it, it’s bad news. People with cepacia are not allowed in the CF resource room to prevent infection in other CF patients, but can send in friends or relatives to retrieve stuff for them, if they are lucky enough to have them around when they need stuff. The kitchen carts mean that people with cepacia are basically going to eat better/at all when they are in hospital since they will have items like a mini fridge, toaster, etc handy in their rooms. If you are interested in helping purchase the kitchen cart, donations can be made to the St.Paul’s Hospital Foundation Adult CF Clinic Patient Enhancement & Equipment Fund. In the memo write: CF clinic fund #01866164, kitchen cart. That’s a eyeful). In case you need a reminder of why this is important, allow me to refresh your memory.

Would you like to eat this?

Or this?

Or this?

Didn’t think so. Joey didn’t either. I believe that one of the young folks from Mountain Park Middle school in Calgary said it best when he sent Joey a card that said: “I hope you get better food soon. Dear staff: get better food”. A man after my own heart.

So our friends helped to get a start on purchasing another kitchen cart. I also get random emails and texts offering emotional support. Sometimes I get TV show recommendations because people know that I’m at a loss of where to start and that Joey would always find me the funny shows, or the trashy shows, or the movies I would like to distract me and cheer me up.

Sometimes they send me funny pictures of their kids enjoying raspberries:

Or sit around and drink coffee and let me mope when I need to. Or help me move in and assemble couches. Or do basic things like grocery shopping because they know that sometimes I just can’t get it together to be okay out in public.

I have the best friends and family in the world. I am very, very lucky.

K-Dub

I have a picture of a tree that is hacked to bits around its’ trunk, but is still standing. Barely. The caption underneath reads:

Recovery

Time heals all wounds. But it usually leaves a pretty big scar.

I feel a certain kinship with this tree. It has been through the wringer, but it is tough. It’s in terrible shape, but it hangs on nonetheless. It’s roots run deep and strong. It will pull through provided its’ basic needs – food, water, and love – are met. Things will get better. The tree and I are one and the same.

I showed a friend of mine the tree picture a few weeks back.

“That tree is going to die”, he said.

So much for time healing all wounds.

A year ago today, Joey died. Our family is still struggling, but we are hanging on. I hope things will get better. That said, I am realistic. There is always going to be a piece of me missing and I am not the same person that I was before. I am trying because I know that is what he’d want and I know that it’s what I have to do for my own health and for the people around me that care. It is difficult. I am far from wonderful. That said, I haven’t given up. But sometimes you just need to acknowledge that you are sad and lay around and cry. Today is one of those times. Good thing I have a comfy couch to do it on.

On the last page of “A Widow’s Story”, Joyce Carol Oates wrote:

“Of the widow’s countless death-duties there is just one that matters: on the first anniversary of her husband’s death, the widow should think ‘I kept myself alive’.”

Mission accomplished.

K

February has been rough and there’s still more to go. That said, I am hanging in okay, although I have been more slack on the blogging than I usually am. Been having a hard time getting motivated and am struggling for something to say to sum up how I’m feeling/what’s been going on. Here’s a quick rundown:

• Cuba was bittersweet. I thought I knew the meaning of that word before, but it seems like my understanding has been heightened. Going was a good move and on the whole; we had a good time and I think I’ve returned in a better headspace than I was in before I left. (Phew! Hope it lasts). That said, it was tough being there without Joey. Even when I am having a good time, there is always something missing; hence my newfound ability to experience joy and sorrow simultaneously. I felt the same way when Gus was born. Honored and elated to be there, but indescribably sad that Joey couldn’t be there in person to get all up in Kimberly’s business. And how much would he love checking out how Gus looked when he ate his first avacado:

Or drive across Canada with me? Or be there for any number of special occasions with the special people in our life? You get my drift.

• Valentine’s sucked, but not as badly as I thought it would. I think the key to limping through the rest of my life is to embrace all of the “crazy widow shit” that will be a part of who I am from now on. As if I wasn’t loopy enough before. The journaling, the ceremonies, the locket rings that Richard claims “make me look like a cokehead”, I’m embracing it all. I am tackling my grief head on because I don’t want it to bite me in the ass later. Or at the very least, chomp with gums and not teeth.
• I got a new couch; I am trying to restructure to some degree. It is interesting that those who know me best feel that this is a very positive step forward. Plus, now there is somewhere comfy for people to sleep when they come to visit. I’ll be accepting bookings soon.
• I’m still working on trying to get better and am branching even further out of my comfort zone to try new means to achieve this end. Better, but not perfect. Better than abysmal and better than completely hopeless. That’s a damn good start.

Happy February.

K-Dub

Shortly after Joey died, Richard, Caroline, and I decided to go to Cuba. As some of you might remember, that is where Joey and I went for our honeymoon. I figured it would be best to time it for his birthday, as obviously, it was going to be a rough day. We had the best frickin’ party possible, short of him being present, which, I think he was. We went on a boat ride, snorkeling, Richard and Caroline swam with dolphins, and we went to what Joey and I thought might be the most beautiful beach in the world (though we were likely a touch biased because we were so damn happy when we were there). Here’s the pictorial rendition.

A drink for me and a drink for Joey:

Richard and I performing a little ceremony for him:

Caroline, Richard, and I doing Joey’s model face. Blue steel!

Joey’s birthday card. This was much tougher than it looks; the ocean kept washing it away. Hence the enthusiasm when we finally got it:

Leaving Cayo Blanco:

Dancing on the boat:

And they even let Richard drive for a bit. Note the expression of concern on the captain’s face vs. Richard’s confidence. It didn’t seem to take long for the captain to realize his mistake:

Happy birthday baby. We miss you.

K-Dub