Saturday, October 30, 2010

Lost Days

I can't believe October is almost over. After all the busyness and productivity in September, I suppose I should have expected to crash in October. But of course, I didn't. Every time I have a string of good days, I optimistically believe that my brain is really healing. You would think that after six years, I would recognize this pattern, but I didn't and I don't, and my broken brain bit me in the butt again.

Niels and I got a lot done around the house last month, getting it ready to list. We had all the bathrooms and basement painted, we replaced most of the light fixtures and mirrors, had baseboards put in downstairs, we did a TON of cleaning and de-cluttering and organizing. We met with five realtors and made frequent visits to all the local home improvement stores. The house looks really nice, but we can't yet list the house because we are STILL waiting for the outcome of my disability hearing.

So, since my brain seemed to be running in high gear, I turned my attention to the holidays, particularly the photo album I wanted to create for the grands as a Christmas gift. In my pre-injury life, one of my responsibilities was paginating each of our catalogs, that is, deciding how to place each advertised item on each page. It could be a daunting task, especially as last minute items were added. I figured making a photo album would be the same general idea, except that I didn't have the stress of a deadline (at least not a hard one, I've been known to give gifts after Christmas), advertisers or expectation. I spent the better part of two days looking at themes and formats, and then my brain crashed.

It's been one of my worse crashes since I got married and had Niels looking out for me. It's scary to crash now that Daniel relies on me to care for him all day. I do know enough not to leave the house when I crash, and I was able to function enough to feed him and keep him in clean diapers. This is where the routine we establish come in handy. I can follow it without a whole lot of thought, which is good, because there's not a lot of thought to be had. So for ten days, we stayed home, napped a lot and Daniel got to spend a lot of time with his Elmo DVD. Fortunately, we are blessed with a kid who loves to play independently. He plays with his toys, cooks in his kitchen and reads, reads, reads. On a few days, though, Niels had to come home or stay home.

I think the hardest part of these crashes, beyond the fear that I won't be able to care for my own child, is the letdown of realizing that this TBI is just not going away. It feels so great to have good days where I don't need a nap, and my thoughts come easily and I can do the things I want to accomplish and I have energy to proactively play with Daniel and I can make dinner and I'm not brain mush by the time Niels comes home. I have a vague recollection of my old life and the old level of energy that I have. And when I get those moments, I want to soak them for all they are worth because I don't know how long they will last or when they will show up again. Niels, on the other hand, watches me very closely during these times, because he knows my tendencies. He'll ask me stop what I'm doing, make sure I pace myself, get lots of rest. Usually, I listen to him, but sometimes I'm stubborn and want to ride it out. Of course, he's right and I crash.

It's so hard to come out of the fog. I feel myself going through the motions, but it doesn't seem real. This has been a foggy, foggy month. My formerly pristine house is dusty and dirty and cluttered again. My neatly stocked pantry is lacking and our freezer full of leftovers is empty. I just can't seem to shake these cobwebs. I look at my cookbooks to make our menu and I can't make sense of the recipes. I look at the stack of bills and am overwhelmed with the math. I see the messy kitchen and I'm lost at how to get started. I rely on Niels to do so much, but he can't do everything.

But I'm used to all this. It's the same cycle that's been repeating for six years now. Eventually, the fog will lift and my thoughts will settle and I'll get ahead again. The truly frightening part of this month has been Daniel's first health scare.

Daniel and I have both had a cold for a week or so. All the more reason for us to stay close to home. While I seemed to be getting better, Daniel was getting worse. Then one night, he was coughing so badly he couldn't get a good breath. We called the nurse and she thought he had croup. Niels took him into the bathroom so the steam of the hot shower could open his airways. He wasn't helping at all. After 30 minutes on the phone with the nurse, she told us to go to the ER. The most terrifying moment of my life was sitting in the back seat of the car, looking at Daniel and not seeing him breath. Fortunately, he was, and after a few very scary days, he's on the mend again. The doctors have ruled out croup, RSV and pneumonia, but not before several breathing treatments, an X-ray and many tests and exams.

And like that, October is over.

Thursday, October 21, 2010

The Spoon Theory

The article below was written by someone with lupus, but it's very applicable to someone with Traumatic Brain Injury (TBI), like me. It's been six years since my injury, but I still have to "watch my spoons," and I reluctantly realize that I will continue to have to do so for the rest of my life. I especially like the last couple of paragraphs. I constantly struggle with feeling bad for having to cancel plans and have a hard time articulating how grateful I am to friends who are willing to meet me wherever I am that day (physically and/or emotionally). So, thanks to my friend, Janice, who sent this to me, to the friends and family who stuck with me through the transition from old Jen to new Jen, to my post-TBI friends here in Ohio who have taken the time to learn about my limitations, and most of all to my amazing husband who has taken that whole "in sickness and health" thing to the limit with grace and love. - Jen

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 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; 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".