My Neuro Psychologist says that the majority of brain injury patients fall into depression – after their therapists have given them the go-ahead to return to “normal” life, that they are now free to live their lives without having their weeks plotted out for them and mailed to them on a rotation anymore. Instead of being happy, they are deeply depressed.
“And why’s that?” I recall asking.
Being a shrink, he gave the question back to me: “Why do you think that is?” Because, you know, my answer is more relevant than his facts. How I see it, what I think of it, lends insight into how I would feel.
I imagined it must be because it was easier for them not to have responsibility for their own lives, which were being dictated for them on a daily basis. Now they were on their own, they would fail or succeed by their own merits. Maybe I wasn’t ready to be done myself, maybe after two years I was dependent on them after all.
But today was my last “Family” Meeting at the brain rehabilitation center, and I can tell you right now how I’m going to be feeling in the coming weeks:

A.) Relieved to have my own life back.
B.) Disappointed that for some reason I have been thinking for the past couple of years that when the therapists moved out my life could pick up again right where I left off. No one promised me that, but I’m pretty sure they did promise more than what I’ve got.
C.) Wishing things could have happened differently. Wanting to bargain with somebody somewhere in the past – What if I had been more aggressive about getting the level of therapy I really needed? What if they had gotten me into Occupational Therapy sooner? What if I’d had some kind of case manager who could have helped me to get those things done?
D.) Angry because there are things that I’m always going to struggle with. Angry because I want to be like everyone else and skip the naps and burn the candle at both ends and push my way up to the top of the heap.
E.) Guilty for not being grateful enough for all the things I have, for remembering with every breath that I am alive, and that is all that matters.
F.) Wanting really badly to just forget that the whole thing ever happened, to pretend that I’ve always been here and always been this way, and I’m okay with that, I’m doing fine, I don’t want for anything. The bills are being paid and there is food in the house, I have my bus transportation and my friends here – I don’t need anything more.
G.) Daring to hope. Always at the end of everything bad, down at the bottom of a great big pile of bad, always I’m looking for the hope therein. I think of what a beautiful world this is, what wonderful kids I have, how much I love my family, how much I love Dennis, my friends. How I still have a lot to say in life. I’m not teaching in a classroom, but there’s something shining inside that I have got to share with others, and I can still do that in writing, in painting – in how I love others.

My sister wasn’t able to be at the meeting this time around, but she sent an email that pretty much summed things up: “…My understanding is that this will be the last family meeting at that you are all done treating Heather. Please let me know if Heather's interpretation of the situation is incorrect. I wanted to thank you and your staff for all the hard work you've put into Heather's rehabilitation. It's been a long and interesting process and I've been happy to help as soon as I realized how involved I needed to be. It's been very educational. I also just wanted to make sure that I understand where Heather is and what will be needed for her from here out. There are a lot of skills and steps that Heather has progressed with through the combined efforts of [you, and Heather’s] Tuesday group. Obviously this list isn't exhaustive, but off of the top of my head: · Speech and conversational skills · Information Processing · Memory and scheduling compensational skills · Physical exhaustion management · Surviving relatively independently · Initiating an application for social security · Transportation · Neural fatigue management · Accepting changes to her quality of life (ongoing)
“Obviously Heather could not recover to her full capacity from before the accident, so things that she will continue to struggle with and hopefully improve on include: · Neural fatigue (which leads to greater problems managing even skills that she is typically doing well with) · Information Processing · Problem solving · Sleep hygiene · Medication management · Scheduling and memory compensation · Budgeting · Driving skills
“Things that she is currently unable to do include: · Drive at all other than the 15 minutes from her home to work · Complete more than roughly 4 hours of work a day · Manage a day successfully without a nap in the middle of the day · Complete her masters degree in education · Work in a classroom · Work in a fast-paced position · Work without compensation for her disability
“Questions that I still have include: · Will you provide a therapy wrap up/release statement that details her capabilities? o Heather's understanding was that she could contact your offices whenever she needed a statement for Social Security, housing, food stamp, and other considerations. Is that accurate? What kind of turn around can she expect when she needs something like that? · What happens if she moves, or changes jobs? o Will she need further driving instruction? o Will she need further vocational therapy? o Where can she get further therapy if she moves away from Lansing? o Could she get a referral? I might have more questions that I haven't thought of yet. but this is basically what I would have brought to a family meeting were I able to attend. Once again with sincere thanks...”

Judging by what I understood from the meeting, Thea wasn’t wrong in her assessment of my situation. Origami is signing off. The Vocational Therapist will touch base with me a couple of times within the next couple of months to help with the transition between my old boss and my new boss (There’s actually kind of like a whole committee of bosses, who fortunately are going to be sticking around to help as well). I am by all reports doing well in the quiet, organized atmosphere with the routine schedule (Unless I’m overtired, which is when all bets are off regardless of what I’m doing).

“Heather, we have discussed that you might be able to work a couple of extra hours if you were to have a more repetitive job, but you have expressed concern that you might not be challenged enough by such a job and, frankly, I would have a really hard time with a job like that myself. If you were to change jobs at some point in the future, know that I’m always here for you if you need me. Meanwhile, I’m happy to see that you have finally been contacted by the social security administration regarding your claim, as you will need to be compensated for the work that you are no longer able to do. Although they do usually turn everyone down initially, I think you have a good case with them, given the extremely debilitating effects that neuro fatigue still has on you after two years of recovery.”
The Occupational Therapist then listed things that she feels I am doing well. Since January (when we had our last meeting) and now, I have transitioned into independent housing and am caring for my children relatively well. “And we have a new system in which Heather is keeping her weekly grocery money in envelopes so that she can keep track of her spending and also use the checking account solely for bill paying purposes. So, Heather, how’s that going so far?”

“Um… I lost the envelopes.”
“…and we implemented a new pill reminder system so that she will stop forgetting to take her pills…”
“It’s kind of working – I only missed them twice last week…”
“Well, ANYway, Heather is probably always going to struggle with budgeting, sequencing, organizing, problem-solving when there are sudden changes in her plans or schedule. Rest breaks and time management are always going to be the key to her success in any endeavor. I estimate that we should be done within the next two weeks.”

Why am I so organized at work and not at home? Because I get the great privilege of working first thing in the morning, when my brain is working to its fullest capacity. Also, work has a built-in schedule, tasks that are the same from week to week, and people who worry that things won’t get done, or notice when things don’t get done, and are sure to remind me. In other words, I have the same level of supervision as I did when I lived with Thea and Paul. More. And the bonus is that I actually get paid for doing this stuff, which surprisingly I really enjoy doing. I think it’s because I love people and helping people out, and there are enough creative things to do to keep that side of me satisfied as well.
But I sat at the meeting and marveled at how I could have been just a few classes short of a master’s degree in teaching just a couple of years ago, working full time and considering a job teaching online -- and now I’m weighing the pros and cons of a part time office job over an assembly line job at a factory. With no one but myself foreseeing my ability to do much more in the future.
The medical doctor from the rehab who has been prescribing my treatment told me at the meeting that they are all very proud of how far I’ve progressed, that they would write up a summary of what I have done and what their recommendations will be for my future. She explained that sadly they had not gotten a report back from the driving inspector regarding my future at the wheel yet, but that in the meantime my family should be compensated for helping me go back and forth to pick up Stuart and Lucy for the weekends, and in the future the auto insurance company is still obligated to cover any travel I need to brain-related medical appointments or therapies. The brain rehab will contact me via email when they get further information regarding the driving issue. If I have any further brain-related problems in the future, they are, of course, always there for me... I just have to get a referral from a medical doctor before approaching them.
Now that they are closing shop, it's probably too late for my Neuro Psychologist’s Office to get further therapy for me. He had said that I needed it, and had told me several times that he had sent the recommendation to the new doctor and therapy program he wanted for me (that he felt would be better than what I actually got), but even with his referral and several phone calls on my part, nothing ever came of that in time to be of any use to me. I mean, what are the chances that the auto company, after finding out they are all done paying for my brain treatment, are going to welcome more payments toward an all new therapy program for me? Certainly not after getting the report from the brain rehabilitation folks stating that my therapy is finished and that I am doing the best that I can do now.
That’s it.
It is kind of depressing, isn't it?
I'm not sure anymore if ANY therapy was really ever going to end with any kind of peace or sense of closure -- Maybe I could have gotten OT sooner and would be further along (the neuro psychologist thought so), but regardless I'm still stuck unable to do the things that I used to do, or to live the life I planned and spent thousands in college to achieve. There's no way this was ever going to be a happy conclusion... Except that I do love my current job, still get to paint and to write, and if I can master my fatigue and time management, I now have more time to do those things.

Maybe it was the only way that was ever going to happen, and maybe that's what I can look at as the reason behind it all. I am not one of those people who really believes that everything happens for a reason -- sometimes bad things happen, and they are random, and they will never make any sense. The “reason” isn’t the important thing, but my reaction is. Writing and painting have been my calling since a very young age, and somehow, despite all the distractions and sincere efforts to do other things that seemed more practical at the time, these are what I have left in me that I can still do without any doubt or question.
It’s all still up to me, and always has been.
That’s not depressing at all.

The Feel Better Box

Depression.

Anger.

Guilt.

Hopelessness.

Grief. 

Hurt.

Melancholy.

Misery.

Sadness.

Agitation.

Rejection.

Suffering.

Hysteria.

Overwhelmed

Agony.

Shame.

Apprehension.

Regret.

Anxiety.

Worthlessness.

Alienation.

We all have all of these feelings at some point. The majority of people struggle to keep them hidden, because no one likes a "Negative Nelly." (Puh-lease! This is a social network, a public forum. How can you be so crass as to express such negative emotions for me to stumble upon in the midst of my cute kitty pictures and inspiring quotations?!) 

To be clear, the Feel Better Box was not my idea.

It originated in therapy for PTSD and Borderline Personality Disorder, and I'm sure they got it from some other place as well-- possibly Marsha Linehan, creator of Dialectical Behavioral Therapy.

( https://en.wikipedia.org/wiki/Marsha_M._Linehan ) There's both good and bad in this model -- one of the bad things being that group therapy can sometimes have a detrimental effect for people who are shy or severely damaged, and because in the hands of the wrong therapists the model seems to me to undermine all progress some people who are brain atypical have made. But that's all a subject for another blog entry -- Tonight I'm simply telling you how and why the idea of a "Self-Soothe" kit appealed to me, and also that it works.
The process of creating your own Feel Better Box (My daughter named it that) involves learning how to be kinder toward yourself and to make healthy choices when experiencing powerful emotions or a personal crisis.

A personal example: I ask someone for the 5,000000th time if they can please help me get to an appointment (I haven't been able to drive since my car accident almost two years ago now). They turn me down rather sharply. Doesn't sound like much of a crisis compared to the Twin Towers, does it?  But I'm feeling as if the sharp end of this rejection has punctured my composure, releasing the all of the emotions listed at the beginning of this topic in a hiss of steam, and I'm feeling them all at once, like a punch in the face. These feelings have been building up for nearly two years now, and this one additional crush of shame and helplessness breaks my composure. I've been toughing things out for a long time now, pushing back anything that might be misconceived as weakness or drama queen material by others. I know that this moment won't last forever, but in the moment I feel helpless and dependent, and all the shame society places on that state of being. What should I do? Well, Marsha Linehan says this: 

A more serious example: A couple of years ago I lost my fifth apartment since my divorce and had nowhere to go. At one point I had spent all morning looking for a new place to live, a better job to afford living there, transportation, food, and help moving my things as well as figuring out where I was going to store them this time. Five o'clock rolled around and I still hadn't solved anything. I was alone in my apartment with no heat or electric, one stick of butter in my fridge and one random of watercress in my cupboard. I couldn't do anything else that night to solve my problem -- I just had to wait it out and survive it. My primary instinct was to to curl up in a ball under my quilt and sob. I tend to want to suffer somewhat, tend to believe my circumstances are my own fault and I should be ashamed of myself for not having it all together like everyone else seems to. But really what I needed to do was simply get through that moment, move through those negative feelings and embrace a more positive outlook on myself and my life. I read Number 3 in the blue text box above as: "You could fall into a deep depression and never leave your room again!" but different people might express their fear in different ways -- You might scream at someone who is trying to help you, you might consider doing drugs or drinking if you have an addictive personality, you might be a cutter, you might be suicidal, you might isolate yourself from all your friends instead of reaching out and asking for help because, like me, you aren't so sure that you deserve any help." I have been depressed before. Although I've never abused alcohol and never tried drugs for fear of my addictive personality getting the better of me, I do know what it is to be so depressed that you don't know how you're going to get through each day. For a long time the only way I could cope with my feelings of worthlessness ultimately was to isolate myself so no one would have to see me that way, to ignore the problem and power through, or to try snapping myself out of it by being stern with myself. All of these approaches seemed only to make things worse. I was emotionally distraught, overwhelmed, and I just couldn't think anymore.

My Feel Better Box: Everything 
You Ever Wanted to Know About 
Helping Yourself Feel Better 

The idea behind The Box is a simple one -- To have some good things available with which to distract and/or help yourself in times of emotional distress until things start getting better again -- And hopefully to feel better about yourself regardless of your circumstances. The goal is peace

To put together a Feel Better Box admittedly poses some potential challenges:  

1. Lack of creative ideas or imagination might make it difficult to put together, but you could always just use my ideas, or simply Google "Self-Soothe Kit" and use the best ideas you can find that way.
2. Creativity can often come of as seeming very childish and self-indulgent -- but pay no attention to that and everything will not only turn out fine; It might even turn out to be a lot of fun. The sillier you get with it, the better. Most importantly (from an amateur psychiatrist standpoint), consider the wounded child from within, or at least picture yourself as a child. Remember all the things that once made you happy, and revisit those things. It's only a visit, after all. There's no harm in that. In fact, it's a beautiful feeling.
3. It's easy to get hung up on the idea that you have to have money to buy fancy stuff for the box, but really you could make one that doesn't cost you more than paper, pen, and maybe a Ziploc bag for easy storage. 
4. Probably the hardest part of making a Feel Better Box is making yourself use it. You will come up with all kinds of excuses, including that it's actually easier to be upset than to get up and do anything about it. Or maybe you are so depressed that you can't act in your best interests. 






5. You have to make something in that box worth getting up for, worth going to when times are tough. And it's kind of like getting up and going to the gym -- If you have everything set up in advance and get up and go first thing in the morning without thinking twice about it, the momentum can help you get it done.

Here are some examples from my own personal box, and also some items I'd like to add eventually. Because of these things, one break-through idea for me was to create tickets to cover the items I couldn't fit in the box. Because I really didn't have a lot of extra income at the time I put together the box  that I've got now, I created some tickets for free things that had the 

potential to cheer me up. With these tickets, I was 

giving myself permission to take care of myself. 
I highly recommend it -- You can really get used to this taking care of yourself business after a bit, and not know why on earth you haven't been doing this all along in the first place -- but be kind to yourself about it.
That's the whole point.

Lilac-Scented Wax to Warm

SMELL

In Dialectical Behavioral Therapy, they suggest that you try to fill your box with things that soothe all five of the senses. Not that you have to be soothing them all at once or anything, but I like the idea anyway. Who knows in any given moment of anxiety or depression if you might be uplifted by something as simple as the smell of the lilac bush in the yard of your childhood?

We can't all go to Ireland,
but you can purchase things
 that make you think of
someplace pleasant that you'd
like to escape to for awhile.

I've got a sachet of sweet-smelling heather plucked from the purple and yellow hills of Ireland that I bought while I was there. This eternally fresh odor brings back happy memories and a sense of being part of a world too beautiful to be overcome by misery or fear -- memories of standing on the top of the hills out on the moors with the wind blowing in my face and rolling hills of bright green, yellow with the gorse and purple with all the heather. It was such a strange and wonderful feeling to stand there on that spot and think of how ancient were the castles and outposts -- older than the oldest of stone buildings at home in the States. Along with the sachet I have a little ornament that depicts the Celtic letter "H," and some Euros that I brought home in my pockets. Do you own anything that always reminds you of something that was absolutely perfect from your past, from moments in time when you felt as if you should live forever and ever because you were strong and beautiful and full of hope and promise? Keep those things. Tell yourself that you will have even more adventures in time, for you will, one day. And if nothing else, you had those moments that no one else can take away from you. Be proud of that person that you were, be proud of  who you have become. The rocks and the rolling hills and the heather have survived so many years -- and so can you. You'll always have ground underfoot.

Bubbles! How about a little plastic container of bubbles, smelling like summer in the backyards of my childhood? For for some reason I find the smell also bring to mind those little plastic, water-filled bird whistles -- I should find one of those and put that into my box, too.

Cinnamon sticks. That's for Christmas and French Toast and multiple other delightful things -- apple pie, apple crisp... I just have to be careful not to go running for too much to eat when I smell them. I had some cinnamon sticks in my box, but I think they were hijacked by my daughter. I fully intend to keep after that child to create a box of her own for days when things don't seem likely to go right for her. I think passing along this one important concept could make a huge difference in the lives of my children -- The sensation that bad things do happen, but you can get through them without self-abuse or shame. In fact, you get through the mood created by trying times just that much more quickly, and in the space it leaves behind you can find peace.
How about a really good, soothing lotion with a fresh, clean smell -- or something flowery if you like instead? Other things I mean to pick up and add to the box over time: More scented candles and candle warmers, scented bath oils or salts, and room spritzes with pleasant odors. Maybe one of those misters.
How about good old-fashioned scented markers to color with? Coloring is very soothing if you can get past the fear of appearing childish (If I troubled myself to worry about that my life would be very dull indeed, and I fear I could never paint again. Not worth the loss!) I imagine a visit to Bath & Body Works just might possibly be in order.

SIGHT

So many lovely things to see! I've been creating an illustrated dream journal, which is really just a fancy way of saying that I cut and paste things out of magazines into a book. There's this theory that if you visualize something often enough and with enough concentration, you can manifest that thing in your life. With that in mind, I'm cutting out pictures of my dream house, my favorite writers, and various works of art in random forms.


One year I created 100 Positive Self-Affirmations and then strung 100 pretty beads into a bracelet for myself. When I'm feeling especially crushed and miserable, I lay my hands on these and feel their smooth surfaces as I tick off each happy thought like a rosary bead. Another spin on that would be to use the beads as a tactile gratitude list. "I'm grateful for the love and support of my family, I'm grateful for my friends, and for the sunshine..."
I can always go back to the bubbles, blow only one or two at a time, and then just do some deep breathing as I watch them float effortlessly away and pop, imagining each one to be a fear or worry that has now disappeared right before my eyes.

A book of my favorite photos of my children and family, and optimistic pictures for me to color  and then use as stationary for my letters to my kids

Decorated stationary that I use to write "Thinking of You" notes, letters of encouragement or gratitude for my friends and family, and letters to my children. I've actually got an entire box of stationary and stickers to send love letters to the kids. When I focus on them, my problems fade a little, too.
Pictures of my children and my family -- all my favorites.

I go to my book of family photos, but only the ones that make me feel happy instead of bittersweet.

I can put on nail polish of several different shades. I could buy one small jar a week and have all kinds of colors to play with. Anything can really be soothing if you focus solely on that simple act.
I wrote myself a love letter one day. Or here's a thought --- Write yourself an encouraging letter and -Mail it to yourself. Silly waste of money? Or you could see it for what it is, which is deciding that your happiness and well-being are well worth the price of a postage stamp? I hope it's worth much more!!!
--

Positive or encouraging little notes and quotes. You may have noticed that I've got an obsession, Each quote connects us to both the wisdom and the folly of the past, lest we "forget and live to repeat it."
A mandala coloring book -- very soothing. You'd be surprised. You can turn on some peaceful music and get right to work coloring an intricate picture with some colored pencils. Don't let yourself get so hung up on being an adult that you forget what made coloring fun for you as a child. Hum to yourself as you work.

Be sure to keep and save every special card or letter you ever get from a friend, or any other memento from when someone did something special that made you feel loved. Write down every single compliment you ever hear and stick that in the box, too. You never know when you might find yourself needing to see it and be reminded to believe it for yourself again.
If I could add anything else to my sight collection, it would be pretty little postcards, illustrations of pretty places, pretty colored pens, a fun activity book, and a magazine on a favorite topic.

TASTE

You could store some of these ideas right in the box. I'd go with dark chocolate, Jelly Bellies in all my favorite flavors, mint chocolate, raspberry chocolate, dark chocolate orange, minty gum, packs of hot cocoa or tea, a snack bar -- or maybe some Pop Rocks!
Because I have some self-control with food issues, I generally use my tickets in the box in place of actual edible items. If I grab one of those things from the box, it would say"Eat one square of chocolate, mindfully."

"Make yourself some homemade chocolate pudding and eat a bowl of it warm, get some crisp, fresh fruit, some sugar snap peas in season, or some sour candy." Whatever you like, but make sure first if you're doing it for the right reasons, and if you can have enough self-control not to eat it ALL. Stuffing your body with junk food is only stuffing your emotions inside someplace where they don't belong, and that can cause you over time to turn into a person you never meant to be.
Oh, but for the chocolate!
Dark, rich, delicious chocolate!
My absolute favorite is Godiva's raspberry granache truffles...
Yes, So, anyway, I write myself a coupon for such things, and I give it a lot of thought beforehand to make sure that I'm not going to eat an entire box or bag of something.
Love myself, love my body, etc.

TOUCH

Well, this one can sound really weird or maybe mildly inappropriate, but let me
show you:

The little pebble on the right I plucked from the sand back when I
was 12 yrs old. It's smooth surface feels like a time capsule to me.

Fuzzy fluffy stuff to rub against my cheek. Is this a toddler'type coping mechanism? Yes. Yes, it is. But I've got PTSD, and I can tell you for a fact that in that case you need to resort to childhood's comforts, because when you're thinking out of anxiety, fear, and a sense of helplessness, that's the wounded child inside of you crying for love and comfort. Give the poor kid a blanket or a lovey, and for pity's sake don't judge yourself for that.

Rock I got in divorce care group.

Seashell buttons. The ridges and smooth contours felt wonderful on my fingers, but I seem to have misplaced them. Lucy gets this box out and uses it sometimes, so she's a prime suspect. I think it was worth it if it helped.
Tactile rocks are solid and grounding in the midst of a panic attack, after a nightmare or a flashback.
The affirmation beads come back into play here because you can physically feel their cool smoothness as you tick off your positive traits in your mind.

Floam like I've got, or Play-Do, if you prefer. How about clay? Take up pottery-making -- the feel of your fingers slipping along the outside of a pot with the wheel in motion is one of the most soothing sensations I've ever experienced. A bean bag or stress ball are helpful, or you can use a rubber ball like I do, to bounce ideas up against a wall (Yes, I got the idea from House MD, but it works!)
Other ideas I've had but either not been able buy or not able to fit into my box would be: My great, big fluffy blanket, one of those heated neck pads, magnets if you believe in them, bubble bath doubles as a touch-related experience, exfoliating scrub for your face or your feet, soft, warm clothing, or a nice warm heating pad. A travel-sized Mancala game, or marbles, or a bag of jaxs. A pair of warm fuzzy socks! Your imagination is the only limit, which is why I'm lending you so much of mine.

HEARING

This category universally brings to mind rain-sounding mood music,
a waves on the beach track, crickets, a tinkly little music box if it makes your heart glad. I think a white noise machine would work equally as well, or a sweet-sounding little bell or chime, or the sound of drums, or fluting, and music from your childhood that brings up only your happy memories. I've got Celtic Lullabies, and I listen to Deep Relaxation music on Pandora or You Tube. I had a little i-Pod Shuffle that I liked to listen to on brisk walks when I was especially troubled. I put only happy, fun-

loving songs in there, and then a few Girl Power types as well. Unfortunately, mine is broken and I'm left waiting in hope that someone remembers to get me a replacement for Christmas.
And I made a little ticket for myself to seek out of video of a laughing baby on YouTube, because almost everyone I have ever met has not been able to resist smiling at that bubbly, uncomplicated burst of joy that pours out of a happy, healthy child.

Frankly, I made this box because I reached a point in my life where it felt like I was ensnared in an endless loop of misery that was never going to go away. Time really does heal most things -- But wouldn't it be better if we stopped passively waiting out the storm and instead started actively pursuing our happiness?

 The Artist's Date Book  is a Great Resource for Adding Variety to Your Box!

I am mostly happy these days, when once it seemed I would be crushed under the weight of my own grief.

I hope that you are inspired to create a Feel Better Box for yourself --or a drawer, or cabinet, trunk, or a child's wading pool just chuck full of happy thoughts for yourself. Decide that you are worth it and get it done. I'm always available for thoughts, kind words, encouragement and advice. And give me a message or a post on my wall any time you run out of positive thoughts about yourself. I know plenty, and I'll bet a lot of other people do, too.

Pictured last is my original Feel Better "Box," created for me by my daughter when she was only seven years old. She said that it was mine to keep for when I miss her and she's away at her dad's house without me. I never once complained, and have always tried not to let them see how much sadness I have tied into their comings and goings from my house to his, but somehow her sturdy little heart found me out and created this magical bag that brings her close every time I open it and look at its contents. It is full of photographs, little drawings all folded up to squeeze them in, a note that says "I Luv yoo,"tiny little toys that she one played with and enjoyed, a Scooby Doo Valentine, a bracelet that she must have found somewhere out on the dirt road her dad lives on (It was missing several fake diamonds and crusted with dried mud), the "Love" pillow that she ripped off an old teddy bear, and my very own Frog Prince in case I should ever get lonely and decide to settle down with someone again. These days the entire bag resides right inside my Feel Better Box with the rest of my things for me to take out and look at whenever I'm sad, anxious, or simply missing my children. Looking at this bag once again brings to mind what I said when I was discussing money at the beginning of this entry, when I said that you don't need a whole lot of money to create a box that will lift your mood and help you carry on. This simple little bag  with my daughter's huge heart sprinkled inside really warms my heart for me exactly as it is. No, the really important matters of the heart only need a little bit of love and a lot of patience and kindness toward yourself. 

With Love, 

~ HH

The Corey Project

She was beautiful, smart, funny, friendly, and kind. She was in theater. She loved Dr. Who and ugly sweaters. She was creative and artistic -- unique. Meeting Corey was like meeting her mother from thirty years ago.
It's funny how, when you try to measure time by a specific memory, it always seems as if you've gone through a wormhole and skipped a few decades. The years speed past us, leave us wondering where they'd all gone to in such a hurry.
It seems like one day Corey's mother and I reconnected on Facebook, and in the next moment Corey's Senior pictures were posted on her proud mother's wall.

And then Corey was gone.
Her passing rent a great, gaping hole in the fabric of our universe, the balance of our world. I like to think of her knocking around in some alternate universe with The Doctor, with lots of planets and people to save. A good mother's child is generally a good child, and I know no better source of compassion than to have a kind and understanding mother. So Corey, she will be very kind, and clever, and brighten the very souls of every living being she meets. But in this universe, there is still that empty hole, and what do we do with that?

Corey would want us to fill it.

And so I find myself with a whole awful lot of running to do.
Corey was seventeen when she died, as she will always be in my memory.
And in the heart and memories of her mother, Corey will always exist as the infant, the toddler, the elementary student, and the happy teenager. For her mother there was so much more to lose. As each memory, each anniversary, each holiday and every birthday without Corey multiplies in the two years since her death, I know another little piece of her mother's heart gets torn fresh. It's hard to know how to comfort someone when they have lost their only child. I heard or read somewhere that Rose Kennedy, upon asked about her sons' deaths, said something about how unnatural it is for a parent to outlive their children, and that's a level of pain I can not fully even comprehend.
I think of how much it hurt when my ex-husband got physical custody of my children because I had no home to take them to, how the pain was so bad that I scarcely got through it alive. But to lose them altogether?
I think back to the days after I had to give them up, to the unnatural quiet in the house, to the empty rooms and unused toys mocking me every time I walked past their doorways, and most of all just how pointless my life had become all of a sudden. It had revolved around them, and now it felt as if there was nothing. I remembered I cried. I screamed at the relentlessly cold universe.
But I still had my children to live for. And this is the thing not everyone understands about being a mother, being a parent: You are always a mother (or father), whether your children are with you or not. I hadn't lost them, and I was still their mother. They needed me to figure out a way to live, and to thrive, so that someday I could show them how. You will always carry your children with you, in your heart and in your head. They're in your face and they're in the sounds, sights, and smells that accompany every day of your life.
"Lucy loves that flavor of ice cream."
"I remember when I watched this with Stuart; He cracked up at that part."
"That sounds like Lucy's laugh."
"I haven't been on this street since that time Stuart fell and skinned his knee. He carried on so much you'd have thought he was going to die..."

It was Corey's Mom who started it, my cherished childhood friend. At Christmas she mailed me a card and a packet of smaller-sized business cards with encouraging messages on them, to hand out to random people I meet, especially anyone who worked a thankless job, seemed in any way sad, or simply because my heart wordlessly led me to them.

Because Corey's mother still has her daughter to live for, as she will always carry her with her, always see and feel and hear her with all of her senses, all of her memories, because their hearts and minds connected in a way that only a mother can know.  In this sense, Corey has not left us at all. How much the rest of us mothers take for granted! All the little things that could at any moment be subtracted and replaced by a huge hole.

One thing I learned being without my children was that there are a lot of these holes out there in this tired, cynical old world, more than any one person could ever fill. 

But as Corey's mother, my friend had to do what Corey would have done.

In August, she challenged her Facebook friends to come up with seventeen acts of kindness, one for each year of Corey's life. If enough of us did that, those little good deeds would add up to something like the number of things Corey might have done, or would have us to do.

I promised that I would meet that challenge, and set out to work at it. I don't need accolades for anything I came up with; I didn't do them for that. I'm writing because I promised Corey's Mom that I would share these things with her, and then later it seemed that as many people as possible ought to know, and to do at least one small kindness -- for Corey.

My first kindness with Corey in mind was for a man I met at work who had served our country in Saudi Arabia. He had done his duty and then returned to the states using a walker, which he has had to use ever since. He was one of the nicest men I have ever met, and I think Corey would have liked his quirky sense of humor his liberal-mindedness, and what a really good artist he was. 

While I stuck to coloring mandala coloring books between calls  at the center where we both worked, David created scenes and stories with pictures he drew from memory -- A place he'd once lived, a man he once knew, a soldier, a desert -- This sailboat, which he gave to me on my last day at work. While I had an expensive set of 72 watercolor pencils, David worked with three #2 pencils, a couple of highlighters, three colored pencils in primary colors, and a charcoal pencil. He often stopped at my desk and told me how much he envied me my fancy "art kit," so I decided to go out and buy him a set of his own. I was curious to see what he'd do if he had a wider range of colors and a better quality pencil. The plan was to leave the pencils at his desk on my last day at work, so that I could slip out without having to endure the embarrassment of a "Thank you." I don't know why they make me feel that way, but they do. I want to do something really nice, but I don't necessarily want to be complimented for it. Go ask Freud.

One day David got to work three hours late, looking harried and upset. 

"What happened to you?" I asked, feeling that vague but fearful empathy of not knowing more than the expression on someone's face.

"I had an appointment at the VA hospital this morning," said David grimly, "The appointment was at nine, but I just got back."

I checked the time on my monitor. Three-thirty.

David was about to elaborate, but it was time for an impromptu meeting that had been called. Everyone shuffled out for the conference room and settled in, a buzz in the air about how this was the time of year when the call center started laying people off. We were all there on time, but the person from Human Resources was late, so David continued his story: 

"I stood there in line for awhile, but then had to take a number and go sit in the waiting area. It was like they just forgot about me. Three hours later, when I went to ask the lady at the desk what the hold-up was because I had to get to work, she looked at me like I was trash and accused me of being some kind of a problem. She said, 'Maybe if you had any kind of patience people would actually want to help you. You need to go sit down.' And it was like someone was going to escort me out of there if I said another word."

"Wow," I said. "It's terrible how they can spend so much money to send soldiers out to die for this country, but then they can't come up with better services for people after they've come home."

"You're telling me," he said glumly.

"If it isn't too much to ask -- What did you have to go in for?"

"My eyes," he said, "I noticed some blurriness, and I thought that it was just that I needed a new prescription, but turns out I've got cataracts."

I didn't get a chance to do more than shake my head before the meeting started, and it turned out people were right -- Tomorrow was our last day.

David had been hoping he could stay on because it was the only job he knew of available to him.

I had already interviewed for another one and gotten it, so I was only sorry for his sake.

Corey didn't have to nudge me very hard.

The next day, when David came back from his break, I was on the phone with a customer, but I listened nervously for a reaction. 

There was a box of 150 colored pencils sitting on his desk.

I heard the box open, and the sound of him riffling his fingers through them all. He settled himself into his chair, paused, and then I heard the gentle rustle of paper as he unfolded his note. After a few minutes of silence, I heard him draw in a deep, sniffling breath, and then release it. 

It occurred to me that this had actually all been a terrible mistake, that the man still had four more hours of work to go, talking on the phone with one customer after another, fighting back tears.

I hung up my phone.

David tapped my shoulder, so I swiveled my chair around to face him. 

"Did you do this?" he asked solemnly.

Sensing some strong emotions, I was almost afraid to nod my head. David clutched the note to his heart and mouthed "THANK YOU!" through his tears.

And then all I could do in return is mouth the words, "You're welcome," because I felt as if I might start crying myself. 

"She was her only child?" he asked. 

I nodded again. I'd been worried about what I might do if he were too proud to accept the gift, so I'd written explaining that the pencils weren't from me, that they had nothing to do with me at all. 

The next day, he came in and told me "You made my wife cry with what you did."

As a general rule, I don't think it's a good thing to make someone else cry, but the way he said it expressed further gratitude and a desire to let me know what a profound thing had taken place here. In David's smile and the warmth of his voice, I felt something more than just a "little" act of kindness, and that as soon as they could do so, the couple would pass that kindness on to somebody else. David would be sure to explain that it was for Corey.

We tend to get caught up in the idea that doing something important for someone else requires a lot of time, work and money. It's overwhelming how big we think it has to be when we reach out toward another person. I didn't have time or money, and simply doing my job from day to day was exhausting, so I'd had to come up with something more manageable. But how many acts of kindness does it take to fully represent seventeen years of life? Some of the things I thought of were things I know I would have done anyway, just little things, but it was kind of nice to think of myself as having Corey for a partner in this venture. I would stop and consciously try to decide 'How can I brighten the day, or maybe just one important little moment of the life of the average Joe out on the street?" What would the creative, thoughtful young woman have chosen to do?

And so Corey...

1. Gave me a pat on the back for helping David and then pressed me to move on, to
2. send a special picture to another of my grieving friends,
3. Give a painting to another of my friends who was worried about losing her job,
4. had me tell my daughter Lucy all about her and the project she had me working on, and how I could use some help carrying out her work.
5. helped us come up with the idea of donating money to a dying child around Lucy's age who wanted to swim with the dolphins,
6. pressed us to help someone clean up a mess that wasn't actually any concern of our own,
7. told the man washing the windows at the restaurant that he was doing a beautiful job helping us to see the flowers, and he was so pleased and astonished that we were pretty sure no one had ever taken the time to tell him before,
8. which prompted us to stop and make contact with every janitor we came across, to really see them and tell them how much we appreciated their hard work,
9. had us read a story to a crying child in a waiting room until the little girl laughed instead,
10. found something special for me to post on the wall of each of my Facebook friends, one for every day of the month,
11. made certain that I stopped and stooped down to pick up litter wherever I walked outside that month,
12. helped me contrive something nice to do for my mom on her birthday by cajoling one of my rides to stop at Meijer for us to buy her a cake,
13. had us talk to people in waiting rooms about the lives of their families and their friends instead of staring down at my phone,
14. reminded me to slow down for the rest of the  summertime I had with Stuart and Lucy, and work extra hard to look them in the eyes, listen to what they had to say, and then find the right responses,
15. Gave my boyfriend a little shove to help an elderly woman get something off the top shelf at the store instead of standing there muttering to himself about her being in our way,
16. encouraged me to leave my phone downstairs, on mute or in silent mode, and instead of feeling badly about our time together not seeming long enough and not being ideal, focusing instead on the quality of the time that we had left.
17. and asked me to stop feeling badly about myself when the kids were away, stop focusing on the hole I felt inside myself, and instead to spend that time apart from my children filling in holes in the hearts of others.

I had set about trying to heal the world's hurts 

one person, 

one small act of kindness 

at a time.

And I discovered

 that there is no "small" act of kindness.

Corey taught me that.

A Very Nice Surprise

Tonight I broke down and ordered a Junior pizza for dinner. The kid who answered the phone sounded sad and timid, so I was the most patient, charming version of myself and thanked him very much for his help when he was done taking down my order. 
An hour later, a teenage boy arrived on my doorstep carrying an additional 20 oz Pepsi and an order of cinnamon bread. 
"I'm sorry," I said, "I didn't order those."
"I know," he said awkwardly, "I'm the guy you spoke to on the phone. My boss told me we weren't delivering pizzas because of the roads, but I told him you're the nicest person I've talked to all week, and the only person all night who didn't get mad and yell at me. I hope you like Pepsi, and I gave you an extra thing of frosting, too. Um, thank you for being such a good customer."
I have no idea if he paid for these extra items for me or what -- Presumably his boss sanctioned this gift, since he allowed him to deliver it. How very nice. Now if you'll excuse me, I'll get back to painting. 

All In My Head

I've been having an interesting time with brain rehabilitation... I was going to say "lately," but it always has been of vital interest to me, considering it's my life I'm talking about here.
Tonight when I arrived at the Neuropsychologist's Tuesday night Traumatic Brain Injury Education/Support Group, I found myself sitting alone across the table from him because none of the other group members wanted to brave the weather.
Well, technically one of them left a message stating that he'd had a bad couple of days and now couldn't actually locate his car keys at all, let alone drive over.
I took this as an excellent opportunity to pick the good doctor's brains for items not seeming to connect as my neurons attempt to fire.
The Brain Rehab people have begun to flip-flop a little in their services. They've done an amazing job helping me with my speech and language/cognitive coping skills and accommodations, so much so that I will be done with that portion of my therapy by the end of next week. And I've been out of physical therapy for about three months now.
Every three months they hold a "family conference" that includes all the therapists, the psychiatrist, care coordinator, any social workers or counselors involved, and of course any of my family members who care to be there as well. These meetings are an exercise in frustration for me, because I keep hitting up against this wall that I've been trying to get a feel for. I don't know how high or how long it is, and I'm not sure if I'm going to find what I'm expecting behind it.
Basically, each member of the staff gives a summary of their area of therapy and what my goals are in that therapy. They all smile at me at once as the person who has the floor says, condescendingly, "You are working on re-training your eyes to converge and diverge more effectively..." Then they spell out what progress I've made and what the game plan is, just exactly as if we haven't been talking about these things individually for the past nine months since the accident. I know what I'm working on, and I know what I'm working toward. What I want to know is how they intend to get me there -- not by each individual skill set, but in terms of The Big Picture.
Now, in their defense, I know they can't predict with 100% accuracy how far I will progress, nor in what amount of time. The reason they provide all that basic information in the meeting is to help outside people (counselor, sister, etc) to understand what I'm working on and how I'm doing, and they can't very well ignore my presence and address my sister instead of me. I get all that, but my sister already knows all that coming into every meeting. What she wants to know is:

1. How are they going to transfer me back into the regular work world? I'm doing volunteering at
   
   the school two mornings a week, and it's causing headaches and dizziness. I asked the vocational therapist what to make of it, and she suggested I keep a journal of all the details surrounding these symptoms so that we can adjust my environment as much as possible and get a realistic idea of how much of what I can tolerate. Then I do a part time job, and then I go back to the real world and work a job...except that she has no idea what a good job for me to go into would be because she's not a certified English teacher, and neither is she me. 
2. Is there a specific end goal that I'm working toward, and what is it? Can I go back to teaching? How? How do all these therapies lead up to getting my life back on track?
3. Why can't they approach the insurance company more proactively as opposed to reactively? They get me all worked up and concerned about what the insurance company might do, and so far none of their dire predictions has taken place. It seems very unprofessional.
4. When I asked about counseling with an expert on PTSD for my car accident dreams and terrible fear if the car happens to move the wrong way while I'm in it, why did they look and smile at each other as if mentally shaking their heads at me? 
5. Why did the care coordinator tell me privately that, although I deserve to have all the therapies my neuropsychologist recommended, I should probably not pursue it (again with the insurance company in mind)?
6. Why aren't they organized enough to find out our concerns and address them directly as things progress? They remind me of driving with an adult as you're getting your license: They've done these meetings and worked on these kinds of cases so much over the years that they don't even think to explain some of the things that they know automatically. They just assume we will know. They asked us if we had any questions and, when we didn't, they all smiled across the table at one another and shook their heads, which gave us the impression that no one else ever  asks questions at that point. My sister and I decided to write them down next time, and to call or email the therapists in charge of each of them.
7. Why are they completely ignoring my brain-hand coordination and communication issues, and faulty fine motor skills in my right hand? I will bring it up the occupational therapy for that and they blow it off and tell me it's not going to help me. Fine if it won't, but don't I have a right to have it addressed elsewhere, then? Maybe I should start looking...

Anyway, all this hanging  in the balance and I find myself getting a two hour one-on-one with my trusty advocate, so naturally I settled in and started asking questions.

The doctor was very disappointed in their approach, but told me that they've been burned by both the insurance companies and lawyers quite a bit over the years, and things are getting harder and harder to get covered all the time. This tightening of the fist has squeezed out some of their enthusiasm quite a bit, and naturally so, but he will continue to insist that this isn't good enough.

"Why should you be punished for being smarter than many of the rest? You deserve the same amount of treatment as anyone else whose sustained a 47 point drop in their IQ. It should not matter that you were well above the average to begin with. Just because you're now average because of the car accident doesn't mean that it's good enough for you and what you are used to being able to do. You shouldn't have to beg for treatment that they're supposed to be giving you anyway. Let's get to work here and start talking about a game plan for you. They're good people at the brain rehab, but sometimes they need to get a little nudge. You hit a plateau and they consider you done, and of course we're glad they've helped you make so much progress, but now there's nothing wrong with you casting out a bigger net and handling these other issues.They've become more noticeable as you've eliminated the most debilitating of the symptoms, but that leaves time and room to work on the remaining symptoms."

I got out a sheet of paper on which I'd written all my questions and a pen in order to record all the answers as he gave them to me. It's a lot harder for me to take notes than it used to be. I used to be very well organized from thought to paper, but this may be something I can get back again over time. It's in my head somewhere; I just need a little more assistance in teasing it out. Here's the feedback he gave me:

Regarding My Volunteer Work

• I will need to record a list of symptoms and environmental triggers that may be causing them, and I will need to continue working at the school until I've got enough data to examine for a solution.
• I shouldn't be doing any one task for more than an hour at a time. 
• Two hours on the copy machine were bad for me because of the constant noise, reading directions and working out how to follow them, looking down and then up again as I did so. My eyes do not look back and forth from one job to another now without having focusing issues. This action repeated over a two hour time span brings on neural fatigue. 
• The doctor is going to dash off a note to the vocational therapist to suggest that I need to be in a well-organized classroom in which I can follow the same daily routine.
• For my part, I need to pay close attention to my symptoms and remind myself that if I overdo it my brain will quit on me, and he doesn't want me to set myself up for failure. And for mercy's sake don't try to push through if I am experiencing symptoms too strongly. If I'm feeling dizzy, then I need a break.
• I will have to discuss my limitations with the school secretary, who is very kind and helpful, and also with the teacher I'm working with.

Big Picture

• After volunteering, the doctor would like for me to get a repetitious job as the next step toward
  
  getting back to work again, some kind of bench assembly where I can sit and do the same task for up to four hours a day in order to determine how long it takes for me to become overly fatigued. In this way they'll have a better measure of how much I am capable of doing at a time without all the distractions. He says he doesn't like to have to subject me to something so tedious, especially since there's a lot of really low-functioning people doing that job at the place he's got in mind, but has to recommend I swallow my pride anyway because it's only another step in a process and not something I have to be locked into for the rest of my life. 
• The third step in the process of getting back to work will be to progress in the assembly line job to doing quality control checks where I've got an example to check side-by-side with the finished parts. In this task, as well as any other I undertake for now, I need to avoid doing a lot of up and down and back and forth work with my eyes, as that is bound to bring on dizziness, headaches, and the onset of fatigue again. 
• In the fourth step, I will need to do some job in which I have to overlook the progress of others -- He's thinking maybe as a shipping clerk, so we can see if I'll be able to build up toward a part time position of four hours a day that challenges my brain as closely as if I were teaching without actually putting me back into a school until we know how I'm progressing.
• For the fifth step, the doctor says that if I'm almost done with my degree then I should finish my degree. He says that I can go back to college with accommodations, finish my thesis, and have that master's degree to get a job teaching online. This would be an idea job for me because it will provide me with the kind of time and structure that I need to succeed.
• I didn't know this, but the brain rehabilitation center can get tutoring assistance for me to help me finish what I started at the university. He says there should be no question that the accident stopped me from finishing my class, and that therefore this loss must also be compensated for. 

Addressing Additional Therapy Concerns

• The doctor says that whether they like it or not, the brain rehab will be receiving a letter from him detailing all of the above, but additionally to remind them of his other two recommendations.
• He will see to it that he specifically insists and spells out that I need occupational therapy for my fine motor and organizational needs that have yet to be addressed. Occupational therapy (OT) is the use of treatments to develop, recover, or maintain the daily living and work skills of people with a physical, mental or developmental condition.^[1] Occupational therapy is a client-centered practice that places a premium on the progress towards the client's goals.^[2] Occupational therapy interventions focus on adapting the environment, modifying the task, teaching the skill, and educating the client/family in order to increase participation in and performance of daily activities, particularly those that are meaningful to the client. ~ Wikipedia
• And finally, there is a specific therapy method for PTSD that has turned out to be The Magic Bullet for the long-sought cure/coping skill set to help PTSD sufferers get the control and calm they want for their lives, helping them once again to live effectively.
• The doctor wants me to see someone who specializes in that method of PTSD treatment. I've been having car accident dreams. There's also my fear of the car going too fast at a certain angle, or last night when my brother-in-law hit some ice and the vehicle we were in slid out into the opposing traffic lane and then overcompensated to the right again -- these kinds of things terrify me, and I shouldn't have to live with this problem the rest of my life. If the brain rehab won't help me get the treatment, I may in fact have to look into finding someone myself. I'm not sure where to start, but the doctor is aware of my needs and planned on going home to work on them yet tonight.

My two final thoughts on these long-belabored problems are these:

1. I don't care for the way the brain rehab shrugs off my additional symptoms as if to say, "So you can't sleep in peace or move your right hand effectively? Wow, sorry about your luck, but it's not debilitating enough for us to address. Congradulations. You're average. Have a nice life."
2. Thank God for a neuropsychologist who really cares about his patients as individuals and goes to such extremes to get them the help that they need. This man doesn't seem to ever go home any earlier than eight o'clock on any night, and even then he takes files home with him and goes over them. In my case, he's planning to night on writing a more specific list of recommendations for the insurance company and the brain rehab. He's also going to write a pointed letter to the vocational therapist outlining his plan to help me reclaim my future. 

The accident put my life on hold and altered my course. I thought it had also taken any chance I'd ever had to finally achieve the self-sufficiency I've been fighting so hard to claim, but because so many of the people in my life care about and encourage me every step of this journey, I feel as if I've almost gained more than I had to begin with.