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".

Books for a Bad Brain

So, it's been a slow couple of days around here. We had grand plans to spend Labor Day weekend at home to work on some house projects--namely packing up the clutter in the basement! But, between the fatigue I've been fighting and a killer headache on Monday, we didn't get much done. I have a headache every day, but I can usually tolerate it if I'm careful to not do too much. Most of the time, I have an idea when a bad one is coming because I haven't portioned my energy well, but occasionally I get blindsided. That's what happened on Monday. Fortunately, Niels was home for the holiday because it was bad enough that I would have had to have him stay home that day. So, not much labor got done this Labor Day weekend.

So now that Daniel's finally napping, I'm in basement, working on the clutter. Niels and I have been married for over three years now, and we are just now starting to really integrate all our stuff from our collective 74 years of life (gulp!). Needless to say, it's slow going. And it's only going because we're putting our house for sale...whenever we get done de-cluttering!

First up...the books. Anyone who's known me in the last ten years know I (now, we) have an impressive home library--a nice benefit of 12 years in the publishing world. When I lost my job, I started selling off my books on Amazon. I sold enough to pay my mortgage for two months. By the time I moved to Ohio, I had sold about one-third of collection, and it still filled up 11 bookcases!

As we pack up the house, we're doing another purge, which makes the packing process painfully slow, but our inventory is getting updated again and hopefully, we'll make a little cash to help out with the costs of selling our house.

I'm packing by category, and today I came up my brain injury books. These are the books have been most helpful to me (and others) in understanding and living with my TBI.

Over My Head by Claudia Osborn. This was the book recommended by my occupational therapist. I had a hard time understanding what was happening to me. Reading what happened to someone else is this memoir of a doctor who sustained a TBI was really helpful. Niels read this book when we first started dating to understand TBI.

Where is the Mango Princess? by Cathy Crimmons. Another memoir, this one by the wife of a TBI survivor. This one taught me how just how long recover from TBI can be, and that "recovery" is really a euphemism for adjusting to your limitations and "new normal."

Coping with Traumatic Brain Injury by Stoler & Hill. This book was recommended by my neuro, and was helpful to understand the physical, emotional and vocational effects of TBI.

Brain Injury Survival Guide by Cheryle Sullivan. I learned of this book about a year ago. It's the kind of book I would have wanted to write about TBI if I could still write. It's filled with tips about living with TBI.

Surviving Information Overload by Kevin Miller. Zondervan published this book while I was trying to return to work and I because it's biggest fan. I gave copies to everyone on my medical team. This book isn't written for the TBI market, but the strategies contained it have made my life a lot more manageable.

Conversations with the Voiceless by John Wessells. This is really a book for the soul, with the subtitle of, "Finding God's Love in Life's Hardest Questions." The author works with brain-injured patients.

Hallie's Heart by Shelly Beach. A friend from my writing club wrote this novel, which features a character with a TBI.

Finding Grace by Alyssa Brugman. Another novel with a character living with TBI.

Parenting Help

One of the things I enjoy about long car trips--besides spending time with my family--is the opportunity to catch up on my magazines. For some reason, hanging with a 20-month-old all day doesn't give me a lot of leisure time! So, when we take off on a trip, I load up a bag with a few magazines and use that time to catch up.

On our trip to Minnesota a few weeks ago, I had about 30 hours of travel time. I found a really great article in the September 2010 issue of Parents magazine. I'm hoping it gets posted online at some point because I'd love to send copies to some of my friends. Of course, first I have to figure out where I put the first page of the article with the title on it! (I like to rip out the articles and recipes to file away and recycle the rest of the magazine).

At any rate, the topic of this article was about raising kids when you have a chronic illness. It's really well done, covering some of the challenges of having a condition that makes an already exhausting job even more difficult, as well as encouragement for making the most of the energy and abilities you have.

The part that I really appreciated was the sidebar, "How to Help a Sick Mom Friend." I feel like, after six years, I've come to peace with my new normal, even as every age of Daniel's life bring about a new level of acceptance. But where I struggle is finding my place with other moms, and balancing Daniel's need to be social (i.e. playdates) and the challenges I face not knowing how I'll feel day to day. This is what the author of the article says...

HOW TO HELP A SICK MOM FRIEND

Trying to be there for another parent can feel awkward. Some ways to make your offer of assistance easy to accept, from Dr. Elvira Aletta:

Let her know how simple it is for you to help. Say something like, "I'm going to the store. What can I get for you? or "I made too much for dinner. I'm bringing over some lasagna."

Keep asking. On average, chronically ill people have four days a month when they can't function normally. So the more you ask, the more likely your offer will fall on a day when even a fiercely independent friend needs a hand.

Come up with a recurring plan. Enlist three or four friends to make a hot entrée, say, every Wednesday, or offer to incorporate caring for her kids into your schedule, like taking them on Saturday trips to the playground. That way, she knows we can count on some downtime.

Just stop by. I was in the area and felt like walking your dog" or "Can the kids join us for some ice cream?" have a spur-of-the-moment appeal.

Phrase your offer as a specific suggestion. "My boys could use some company. how about I pick up your kids at noon for a playdate?"

I really like these suggestions, not only for the content, but the way they are presented. No one wants to feel like a mooch, and I think living with a chronic condition really brings up insecurities about our ability to parent. That's part of the reason it's hard to ask for help. When someone asks to help in a way that makes it sound like we're doing them a favor (helping them get rid of extra dinner, like in the example above), it's a much-appreciated ego boost, and make it easier to accept the help we need.

For me, personally, a goal I have is to provide a home-cooked meal for my family. Even on a bad day, I will still make that a priority. I plan our meals in advance each week, and we shop together for our groceries each Saturday as a family. The menu is posted so Niels knows what's for dinner. On a good day, I'll have dinner ready when he gets home. On an average day, I might have it started, or be waiting for him to help me make it. On a bad day, he cooks while I rest. So, for me, unless I'm laid up for awhile (recovering from surgery, etc.), I want to cook my own meals. But that's me. I enjoy cooking, it relaxes me, and get a sense of accomplishment from doing it.

On the other hand, we're getting ready to sell our house, and there's a lot of work that goes into de-cluttering, de-personalizing, deep cleaning and packing. It takes a lot of mental energy that's hard for me to sustain. Concentration, multi-tasking and organization don't come as naturally to me since my TBI, and I get frustrated trying to use those skills while Daniel is "helping" me. The process is slow enough, but even more so when I can really only make progress when Daniel is sleeping or with Niels. So for me, offers to host a play date for Daniel are greatly appreciated, as are offers to come over and help me clean.

I would agree that I have about four days a month when I can't function normally. Some months are more, a rare month has less. Perhaps in a future post, I describe a typical day. As a worst case scenario--maybe once every couple months, Niels will need to stay home or work from home. That's because my headache is so bad that I can't get out of bed and need the lights off and a quiet place to rest. On other bad days, Daniel and I stay home and I lay on the couch while he plays. It both saddens and comforts me to know that he seems to sense when Mommy isn't having a good day.

One of the challenges of having a brain injury is that I look fine, so it's sometimes hard for people to understand my limitations. I am often told, "You seem fine to me." It's meant as a compliment, so I try to take it that way, but what people don't realize is that I don't leave the house unless I'm having a good day. Most weeks, that's only once or twice a week. The rest of the time, Daniel and I stay home all day. I don't let people see my bad days, so they don't think I have them. As we've been developing friendships here in Canton, there have been times when our friends have seen me crash. It's humbling, but ultimately helpful for their understanding.

My Husband, My Helper

I've come to the conclusion that there really won't be any rhyme or reason to this blog. I know my last post was about the organizational strategies found on my frig, but I'm taking a detour today to write about the best thing that's happened to me since my brain injury: meeting and marrying my husband.

I'll admit that when I sustained my TBI at age 32, I pretty much lost faith that I would ever marry. Unemployed, overweight, brain-injured, broke women over 30 don't top the list of descriptions for your average guy's dream girl.

But, God smiled on me, and imported this amazing man into my life. He also answered my prayer that the right guy would be very clear in his pursuit. When Niels and I met, he Googled me, and learned about both my brain injury and the book I wrote. He read up on brain injury and ordered my book from Amazon. He jokes that I'm easy to understand because I came with an owner's manual.

There are a million reasons why life is better with Niels. The fact that he's my sugar daddy takes all the financial stress away, which is a huge help. But beyond that, his easy-going nature and knowledge of all things technical has made my life much better. He is my advocate: to my family, our friends and my medical team. And he studies me and knows how to make my life easier and stretch my limited mental gas tank.

One small thing that Niels does each night that makes a big difference to me in the morning, is tidy up the front living room (aka Daniel's Disaster Zone) and kitchen. My brain doesn't do disorder very well, so when I wake up to clean counters and an organized play room, it's the equivalent of walking out to a warm, running engine in the middle of a Minnesota winter versus standing out in the cold trying to flag someone down to give you a jump. It takes him maybe 15 minutes to put away the toys (Daniel is finally old enough to help!), clear the table and countertops, clean the sink and start the dishwasher, but it gives me about an hour of extra energy the next day.

My Brain on Ice

Last night we hosted our small group for Bible study. I always like when we host because it gives me a chance to cook, which I'm growing to love more and more. It also gives me an out if I need it, and I can easily slip upstairs if I'm too tired or my headache is really bothering me.

The topic last night was how to use our unique spiritual gifts, heart/passion, abilities, personality and experiences to serve others. I was especially interested in this topic because I've been struggling to figure out how I can benefit others when my post-TBI life is so limited.

We had a special guest to walk us through the questionnaires we filled out. As new visitors usually do, Trent comments on the various lists, calendars and other visual cues around the kitchen. People mistake these things for organization, which might have been true in the past, but are now my brain out for the world to see. On the frig, I have my short-term memory.

I found this stackable dry-erase calendar at a discount store. I don't think they make it anymore, which makes me even more grateful to have it. We use it in many ways:

1. To keep track of the days. Basic, I know, but you'd be amazed at how often I couldn't tell you the day of the week.
2. To note appointments. Not surprising, as it is the main reason people keep a calendar. We go a step beyond that, however. By putting my commitments (especially anything that would require me to leave the house) on the calendar, we can see at-a-glance any potential for a crash. (A crash is when my brain is overstimulated and shuts down, causing me to have to stay in bed for a day or two). As a general rule, we try not to schedule 2-3 things a week. In a typical week, that might be church, small group, and storytime at the library. Out of necessity, most things wait until Niels can be with me: church, small group, groceries, errands other than dropping of a check at the bank or mailing something at the post office.
3. To strive for balance. I really struggle with knowing how to use my limited cognitive energy effectively. Our appointments are color-coded so we can easily see trends in priority. Some weeks I have a lot of appointments, other weeks I do more with Daniel or church. I tend to focus on one thing at a time, and am terrible about losing touch with people that are important to me because I run out of time and energy. I haven't figured out how to fix that...yet.

My Brain on Ice

Last night we hosted our small group for Bible study. I always like when we host because it gives me a chance to cook, which I'm growing to love more and more. It also gives me an out if I need it, and I can easily slip upstairs if I'm too tired or my headache is really bothering me.

The topic last night was how to use our unique spiritual gifts, heart/passion, abilities, personality and experiences to serve others. I was especially interested in this topic because I've been struggling to figure out how I can benefit others when my post-TBI life is so limited.

We had a special guest to walk us through the questionnaires we filled out. As new visitors usually do, Trent comments on the various lists, calendars and other visual cues around the kitchen. People mistake these things for organization, which might have been true in the past, but are now my brain out for the world to see. On the frig, I have my short-term memory.

I found this stackable dry-erase calendar at a discount store. I don't think they make it anymore, which makes me even more grateful to have it. We use it in many ways:

1. To keep track of the days. Basic, I know, but you'd be amazed at how often I couldn't tell you the day of the week.
2. To note appointments. Not surprising, as it is the main reason people keep a calendar. We go a step beyond that, however. By putting my commitments (especially anything that would require me to leave the house) on the calendar, we can see at-a-glance any potential for a crash. (A crash is when my brain is overstimulated and shuts down, causing me to have to stay in bed for a day or two). As a general rule, we try not to schedule 2-3 things a week. In a typical week, that might be church, small group, and storytime at the library. Out of necessity, most things wait until Niels can be with me: church, small group, groceries, errands other than dropping of a check at the bank or mailing something at the post office.
3. To strive for balance. I really struggle with knowing how to use my limited cognitive energy effectively. Our appointments are color-coded so we can easily see trends in priority. Some weeks I have a lot of appointments, other weeks I do more with Daniel or church. I tend to focus on one thing at a time, and am terrible about losing touch with people that are important to me because I run out of time and energy. I haven't figured out how to fix that...yet.

I've been thinking...

As I write this, I realize it has been nearly two years since my last post. It's not that I haven't wanted to write. It's not even that I didn't have an idea of what to write. It's that I can't write. Well, maybe can't is a strong descriptor. In actual fact, I can still write. It's just that, before my brain injury, I couldn't not write. I was constantly writing down snippets and ideas. I had notepads in my car and by my bed. I sent emails to myself from work so I could work out my words when I came home--and could still catch my train of thought! I often woke up in the wee hours to write several pages at a time. I couldn't type fast enough to keep up with my thoughts.

Now, my mind is quiet. Words are hard to come by. Descriptions fall me as I struggle to name my thought. Ideas are few and far between. And the quality of my words isn't nearly what it used to be. I miss that part of my mind more than anything else.

Every once in a great, great while--like tonight--I get a taste of my old brain, and the words come. Not in a torrent, but at least a trickle. When I can, I set down at my keyboard and let them out. Sometimes, in my new life, my words come at a bad time, like when my toddler son wants to play, or be fed, or be changed. Sometimes I fight against his needs for my wants. But in the end, the words slip away and I wait the weeks or more often, months, until they return.

Two weeks ago, I finally met with the administrative law judge for my social security disability hearing. It was a humbling day, the culmination of six years of coming to terms with my brain injury, and three years of muddling through the disability process. I realized, sitting before the judge and explaining my life as it is, as well as the life I lost, that what I miss the most is my ability to write: clearly, concisely, compellingly...as well as quickly, continuously and professionally.

It's been hard adjusting to my new normal. Once of my greatest challenges is knowing how I can contribute to the world. I do realize, that able-brained or not, at this point, raising my son would be my priority, and my contribution to the world is raising a healthy, happy boy. But he'll be in school before I know it, and when he is, I wonder how I'll fill my days.

I love being a mom. It gives me purpose again. When Niels and I were first married, I stayed home. I would tell strangers that I stayed home because I was new to the area and there wasn't anything in my field. That sounds better than telling them I'm brain injured. Making new friends is hard enough. Now that I'm a mom, I can say that I stay home with my son. Voila! Instant respect.

But, in our church and among our friends, I'm still struggling to find my place. I've been cooking a lot. And really enjoying it. When I make a meal for my family, I feel like I'm contributing. It's also a way for Niels to gauge how I'm feeling. If dinner is ready when he gets home, it's been a pretty good day. If it's not, or if I ask him to make it, he knows that I'll be going to bed early.
I don't think people realize how much I rely on my husband to help me function. Of course, not having to support myself is a huge stress relief, which is a big part of it. But I've also learned to implicitly trust him. He can see when I'm teetering close to a crash long before I can. If he sends me to bed, I know I need to listen to him. I am more confident because he is my advocate. If I'm not having a good day, I know he can explain or excuse me. But most of all, I feel like we're on the same team, and every day is planned to make the most of my diminished capacity. We plan for down days. We limit how many times a week I leave the house of my own. We avoid crowds, concerts, restaurants, malls and any other place that would muddle my mind. These places aren't totally unavoidable, of course, but we realize that when we venture there, it will take me time to recover.

It's like I used to drive a Prius with a full tank of gas. Now I have a clunker of a brain that's only ever 1/4 full. I have to watch my cognitive mileage vigilantly. People talk about how organized I am. I used to be. I'm not anymore. Not really. I can have an idea, but the part of my brain that gives the steps to accomplish that goal is gone. That's where Niels saves me. He helps me break things down into little steps. My brain doesn't work that way anymore. When I'm frustrated or confused, he takes over the project and finishes for me. I have lists and calendars and notes all over the house. Not because I'm organized, but because I can't function without them. I carry a camera with me at all time because I can't remember things for very long.

Here's an example. We just returned from a week in Minnesota. Every day was packed with activity. We take tons of pictures. At night, we go through the pictures so I can relieve them and try to remember what happened. Each night, Niels writes up an entry on our blog so I can go back and relive the details. I upload pictures from our camera and write captions to remember the story. Even with these opportunities to make memories of my moments, I still forget so much. I remember emotions, not memories.

While in Minnesota, we visited one of my best friends. She and I have been friends for nearly twenty years. We've lived a lot of life together, and shared a lot of words. She was an early supporter of my writing career. I love that no matter how much time passes between our visits, we can always pick up where we left off.

Steph and I were talking about all this, and she was learning from both Niels and I more about what my life looks like now. We were talking about some of the tricks I've learned to cope with my limitations and she encouraged me with the idea that all my intelligence, organization (!), ideas (!) and contribution to the world were still in my head somewhere, they just needed help getting out. And I have help. I have an amazing husband, a great medical team, and a growing group of supportive friends. I may not write any more books, but maybe I can use this blog to share some of the things I've learned.

I told Steph that there's a reason that there aren't many books about brain injury written by brain injured people. It's because the part of our brains that make us able to organize, create, edit and develop a book is no longer working. She countered that I don't have to put it all together. I know how helpful to me it has been to read other people's stories. Many I can do some good here.

Later.

Right now, my head hurts and my brain is spent.