Reblog: Onions, Diagnosis, Attention and Grief

A great piece on grieving, and how it affects us differently.

ADD . . . and-so-much-more

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Dealing with Grief is like Peeling an Onion

(c) Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
Part 1 of a two-part article in the
Grief & Diagnosis Series
– all rights reserved

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You will get more value out of the articles in this series
if you’ve read Part 1:

The Interplay between Diagnosis and Grief.
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An article entitled Helpful Tips for Coping with Grief, available on the HealthCommunities Website, asserts that “Grief is a normal response to loss.”

By “normal,” no doubt, they are referring to a state that is to be expected in an emotionally healthy human being.

The ten paragraph, ten part, ten web-pagelet article goes on to say quite a few helpful things about grief, many of which I am…

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What I’ve left behind

Somewhere, someone cares about your loss

I’ve been thinking a lot, lately, about the things I’ve left behind over the years. The people, the places, the things… as well as the abilities and interests that have gone away, due in large part to TBI. With Thanks-giving fast approaching, here in the U.S., and travels to old haunts and family activities on the horizon, I have been thinking a lot about how things are different now than they were before — as well as how things might have been different, had I not fallen in 2004 and gotten screwed up with that head injury.

I’ve also been thinking a lot about how I handle my life now, compared with before, due to my TBI recovery work, and my discussions with my neuropsych. The professional I see for rehab work is not very big on acknowledging or dealing with the losses I’ve experienced — in part because my perception of those things has been pretty heavily skewed, and it isn’t always accurate. And my NP is there to get me to move forward, not stay stuck in the past.

In any case, they don’t seem to believe me when I tell them about how things were before my injury. Like so many people, they make up their minds about who and how I am, and they use that as a reference point for dealing with me. Their reference point isn’t always accurate — but then, my own reference points are not always accurate, either. So, between all these different reference points, without having any confidence in specific details about Who I Really Am and How I Used To Be, I just keep moving forward, keep living my life, and I don’t try not to worry about.

But aside from the general haziness of who I really am and how I really am, I have been dealing with a lot of sense of loss, lately. I have immediate family members who have either passed on, or are in their late-late golden years and may not be around much longer. I also have family members who make what I consider really un-healthy decisions and are locked in a constant struggle with drama they have invented with their own personal choices. All in all, it’s pretty depressing to go visit my family, because there is so much unhappiness — due in large part to people making decisions that are not healthy or helpful for them and those around them. The worst part is, they can’t seem to see any way out of their decisions, as though they “have” to do those things that hurt them.

Am I being vague? Here are some examples of choices by loved-ones that depress me:

  • Moving in with someone and then marrying them, despite the fact that they have a drinking problem… then being stuck in a marriage that looks great on the outside to everyone who cannot see that your spouse is structuring their entire life schedule around getting drunk — and you’re stuck in that schedule, too. For years. Till you leave them and start living with someone else who doesn’t seem like a much better choice.
  • Losing your spouse to cancer at a relatively young age, when you have two young kids, and never getting those kids proper counseling help for their loss… and marrying someone who looks exactly like the spouse you lost and you don’t really love, but is a good parent for your kids… and burying yourself in a very extreme religion to dull the pain of your choices.
  • Having a lot of health issues that are directly related to lifestyle — eating foods that are bad for you, keeping a schedule that is unhealthy, and ignoring the warning signs your body is giving you — and being progressively more crippled each year from the foods you eat and the way you live your life.
  • Spending your life in a profession that is combative and antagonistic, and bringing that combativeness and antagonism into the home where you verbally attack anyone who disagrees with you, hurting and pushing people away “on principle”.
  • Choosing to marry for practical, popular reasons instead of love, then spending the rest of your adult life pining for a deep emotional connection with your spouse that has never been there, and never will be… refusing to accept responsibility for your choice in partners… and being on heavy-duty meds to dull the pain of your choices and your refusal to make different choices in your life that would suit you better but be less popular with others… Basically medicating yourself to avoid taking any responsibility for your life.

I don’t mean to be cold or unkind — my frustration comes from knowing just how much better life can be, and feeling great pain for the individuals I love and care for, who seem so stuck in the ruts they’ve grooved into their lives. We don’t have to be victims! I want to pick them up and shake them and let them know there is a better way. But it’s like we’re living in parallel universes and speaking in a different language, and they cannot hear or understand what I’m saying.

Now, I know life is never going to be perfect, for sure, and there is much pain and struggle for all of us. Most people struggle with inner demons that no one else can see, but we fight with daily. But the fight doesn’t have to be miserable. We can see it as a regular part of life that can bring us some freedom and relief — and help to define and refine our characters.

So, there is hope. At the same time, there is so much grief and loss and pain. This time of year is very hard for me, because I lost some important people around this time of year, and the autumn-time experience of loss still stays with me to this day. It’s like it’s in my cells — and I re-live it each year, even decades after those losses.

So, the theme for my life during this time of year is mourning. If I don’t do something constructive, the grief just takes over. I know I have many, many reasons to be thankful — and maybe that’s the thing that will save me — Thanks-giving — yet I cannot seem to shake this grief, this sense of having lost so much over the years of my life, thanks to TBI and the results of it, starting in childhood and on into my adult life. I cannot help but wonder, what might have been possible, had I never gotten hurt like that… had I gotten help… had people known about TBI when I was a kid, and given me half a chance. I cannot help but wonder, what might have happened, had I told someone about my head injury when it actually happened in 2004, instead of lying about it and then watching as my whole life went to hell for no apparent reason.

But no, it didn’t happen that way. And I am bereft.

This is something that I think many people fail to see and address — the losses of TBI, the importance of recognizing and mourning of those losses, and dealing with the deep grief that comes from knowing that once upon a time you could do better… that once upon a time, you took certain things for granted… that once upon a time, so much was possible… but now it’s all different. It’s not like that anymore. Maybe somewhat, somehow, but not exactly. And you have to start from scratch in many ways, and fight your way back to where you want to be — if you can ever get there at all.

Sometimes, you can’t get there as quickly as you’d like, or not at all, and then you have to let it go. You have to just cut your losses and move on.

But “cutting losses” doesn’t factor in the pain that comes from those losses, and that’s what I want to talk about today.

When I try to explain to people what it was like for me before I fell in 2004, I get blank stares.

When I try to tell them how I used to be able to just pick things up — new programming techniques, new ideas, new information, they just look at me like it’s no big deal. When I tell them how I used to be in the thick of craziness on the job, day in and day out, without any real negative side-effects, they almost don’t believe me, and they cringe if I tell them what it’s like for me now (if I even do – because nowadays, I don’t).

When I try to tell them how fluid my approach used to be, before I fell — I would see a challenge and I would rise to it without giving it a second thought — they almost don’t believe me, either.

And when I tell them how much money I used to make and how much money I was worth, the flat-out disbelieve me. Because that would be impossible for someone my age without a college degree, doing the kind of work I used to do.

This is partly because they didn’t really know me before. They didn’t know the line of work I was in, and they didn’t know what it was like to work for my employer. They don’t come from the world where I work, each day, and they have no idea just how good things were for me, and how well I could function in those circumstances, and how rewarding it all was. For people who know me now but didn’t know me before, my accounts of how things used to be just sounds like confabulation — or me making things up. Because the difference between now and then is so dramatic and so extreme, that they probably could not begin to imagine me as I once was.

As I believe I once was.

See, there’s the rub — maybe I was that way, or maybe it was my perception of how I was. Maybe I was “all that”, and maybe I wasn’t. I may never know. My memory plays tricks on me all the time, and the best that I can do, some days, is muster a “feeling” about the past that seems true.

I know things used to be different for me. I know I used to be different. Looking at my bank account, and considering the kind of work I do today, compared with 10 years ago, there is a radical difference. Like night and day. And the fact that I am struggling terribly with money these days, just maddens me. It was never like this before. Never. Ever. But now it’s a daily challenge to keep my finances in order and keep myself on track. I manage, but it’s not nearly as easy as it once was.

Money doesn’t lie. That’s the bottom line. And what my money says, is that I’m a very different person than I was before.

Hence the sense of loss. A profound and sometimes debilitating sense of loss. And I am pretty much alone in this sense, because either nobody understands what it’s like to have so much, and lose it. Or they don’t believe I ever had what I once had, in the first place. Or (even worse) they think that nobody deserves to have what I had before, so it was a kind of karmic justice that now I have such troubles.

Loss. Lonely, lonely loss.

But I cannot stay tied down in my depression. I am working my way out of a hole, and I have to handle this alone, so I have developed ways to deal with this whole grief thing.

The first thing I do, is to acknowledge it. Not minimize it. Recognize the experience of loss and grief and mourning as very, very real. And very, very important.

The next thing I do, is understand what it is that I am mourning the loss of.

I recently realized that I can group my losses into two different categories:

  • Invented Loss – the “loss” of things that I once-upon-a-time decided that I wanted and needed, but I never really did want or need. These are losses like:
    • false friends (who I once thought were my real friends) who ditched me when I stopped having so much money
    • possessions that other people told me mattered, but I just didn’t care about
    • 100% devotion and dedication to employers who were more than happy to pull the rug out from under me when I ran into trouble, and
    • public approval and a sterling reputation, regardless of how sleazy the people were whom I wanted to respect me, regardless of what I needed to do to uphold that reputation
  • Genuine Loss – the true loss of things that I really did want and need, but couldn’t hang onto, like:
    • being able to read things and understand them immediately
    • constant abundant energy
    • clear, quick thinking and definite decisions
    • my ability to earn top dollar almost without thinking about it
    • my ability to learn new things quickly and use what I learned quickly
    • confidence in my memory – things didn’t used to seem this foggy before (I’m not sure if this is a genuine or invented loss, however, because it could be that my memory was always spotty, I just wasn’t aware of it)

In some cases, it’s hard for me to tell whether my losses are genuine or invented. My memory is a classic case — it really wasn’t until I started working with my neuropsychologist that I realized how spotty my memory was. And in fact, when I think back, there are big parts of my past that I don’t remember — people always assumed that it was because I had been traumatized as a child and I blocked a lot of things out, but more and more I think it was a lot of other things, including a spotty memory during childhood, thanks to repeated head injuries.

Furthermore, human memory is notoriously unreliable, even with people who have no history of TBI. Just ask the cops. People who see the same thing will have different interpretations, and each person will be convinced that they’re right. That’s just how we’re built. It’s just how we are. TBI or no, memory is a tricky thing, so it doesn’t make that much sense for me to be upset over the crappiness of my memory. Who’s to say that anyone’s is any good?

But still — I think the thing that gets me the most is the loss of my old confidence about who I was and what I was all about. So much changed, so much has altered with me in the past years — 8 years, since my fall down the stairs a day or two after Thanksgiving in 2004 — that some days I don’t know who the hell I am, where I’m going, or what even matters to me.

Some days, I wake up a complete blank — I have no point of reference, I don’t know what day it is, what I should be doing, what I want to do… anything. It’s like everything has been wiped clean. Then I’ll sit for a little bit, re-orient myself, look at my lists, and it will come back to me. Some days, it feels like I’m starting from scratch. Completely. With no experiences from before to guide me.

And I miss that old feeling of knowing who I am and what I’m about and what matters most to me. The things that used to drive me — reading and writing and studying and grasping the secrets of my universe… the subjects that used to absolutely drive me are just not there anymore. What’s left? Other things. New interests. Different subjects that draw me in… if I can remember them.

Ultimately, that’s probably the biggest loss I deal with — losing my sense of self, who I am vs. who I think I was — and losing my confidence about who that “self” once was, and now is. The second-guessing, the not-knowing… it’s a lot to learn to handle, and it’s a lot to learn to manage. I will manage, somehow — I AM managing somehow — and do that keeps my mind off my troubles. But some days, it just gets to me.

Like today. Like right now. I have this deep and abiding sense that I have lost something very important to me, but I’m not exactly sure what that is. I’m not sure if it’s one big thing, or if it’s a lot of little things, and as much as I am determined to build back my life, I just don’t know if/how/when I will be able to do that to my satisfaction.

Because building “back” is a point of confusion, to begin with. My memory of how things once were is not great, so where’s my point of reference? My memory of how I once was, is also not great, so how do I know if I’ve even gotten “back”? I think the thing for me is having the old feeling again — having a sense of who I am and where I am and how my life is… getting that old sense back. If it’s even possible.

Of all the issues that come with TBI, the grief business is probably the most difficult to handle, because it is so hidden, it is so personal, and it’s hard to find others who understand the extent of your loss. Everyone wants you to move on. Everyone wants you to focus on the positives. Everyone wants you to get back to normal and quit feeling sorry for yourself. But TBI can take from us the very things that make us who “we” are — and when you lose that… even if it’s just for a while… it can be vastly unsettling, and it can linger at the back of your mind, like a jabbering monkey, making it hard to just get on with your life — and do the things that will bring you back to where you want to be.

I’m not saying it’s the end. But grief and mourning for the things we have lost — especially realizing that the loss does matter — is an important part of recovery. And until we really look at it and find a way to deal with it constructively, it can overtake us and run our lives without our even knowing.

That’s what I think about it, anyway. And now, it’s time for me to stave off this depression and get my circulation moving. Time for a walk — perhaps in the woods.

Onward. To the future.

What gets lost – and what is found

The other day I got a surprise. My mother has been going through old pictures and early childhood notes she kept, and she’s been sending them around to all the kids. Mine came in the mail — I wasn’t expecting it at all — and what a surprise… and a mixed one at that. It was also revealing, in what was said and what was not said.

When I was very young, my mother paid a lot of attention to me and my development. I was ahead of my peers in terms of development and speaking, as well as energy and activity. My mother has often said that she was a little dismayed when I was very young, because I was up and around and walking and talking well ahead of the others my age, and while other infants were just lying there and looking around (if that), I was up and around, talking and interacting.

There are a number of notes about things I said when I was 2, and my activity level, and the friends I made early on. Apparently I was a gregarious, outgoing kid who loved to talk and explore and stir things up. Then the notes slowed to a trickle and at the end of the notebook, there’s a fair amount of reports of me being disciplined, complaining about being punished, complaining about my parents giving me a hard time, and generally getting in trouble.

I’m not exactly sure what precipitated the change… I had another sibling born 2 years after me, which could explain why the notes slowed, aside from reports of having trouble with me. I also am pretty sure that I got hurt when I was in child care when I was around 3-4 years old — I fell and there was a lot of commotion, and then people watched me very carefully. I may have gotten hurt even earlier than that, because I was in the care of a woman who had a young son who was “special” and big for his age, and who (so I’m told) loved to play with me. Who knows if he played a little too rough and I got knocked around a bit?  I had a fall down some stairs when I was 7 years old, and when I was 8 I got hit on the head with a rock, and even as a kid, I noticed a dramatic (and uncontrollable) change in my behavior.

And it didn’t stop there. I kept having accidents and mild TBIs throughout my childhood, each one taking a slightly different toll, each one making my life (and the lives of others around me) that much more complex and confusing. I went from being a lively, gregarious, happy kid to being withdrawn, angry, sullen, temperamental, and violent. Some change. Who I was by the time I was 11 was completely different than when I was 2.

After I looked through the notes last night, I went from being excited and intrigued and entertained, to being a little dismayed… then a lot dismayed. I had started out so well, had so much going for me. I was ahead of the curve, I was making great progress. Then what happened? It really upset me, and I felt a keen and painful sense of loss, wondering what might have been, had I been able to stay that lively, gregarious, outgoing kid through the years.

The more I thought about it, the more crushing it felt. I had been such a bright light, at the start. And it didn’t last. I went from being a real source of joy and wonder, to being a source of pain, frustration, embarrassment, and anger. And it didn’t stop for decades. When I think of everything my parents and friends and teachers went through… What a difference. What a loss.

Eventually the tears came. Bitter, bitter tears. Anguish. And no escape from it. That was my past — the hope of my first few years dashed like so much pottery thrown from a cupboard during an earthquake. Broken, shattered, some of it impossible to retrieve or repair. The past was the past… and the thing that made it all the more bitter was that I had not started out in bad shape — I had started out ahead of the curve, with some great advantages. But they were lost, soon enough. Too soon.

But such is life. And with TBI (and so many other kinds of injuries) so it goes. Things are lost. Things are shattered. And some of them can never be put back together. They’re gone, and in some ways it seems like it would be easier, if they’d never even existed, so you don’t have a memory of how things once were… and dreams of how things might have been.

In some ways, it seems like it would be better, if there were no memory of how things once were — if my injuries had resulted in amnesia about how things were once upon a time, so I didn’t know what I was missing.

But I do know what I was missing. I have notes. And there it is. Now I have to walk through the day ahead of me, remembering what was lost, remembering what my parents had to go through with me. I am quite sure that my parents didn’t help in certain ways — nor did the doctors who had no clue about TBI, nor did the teachers who just beat up on me because I didn’t understand. I got punishment, not compassion. I got judgment and strict discipline, not attempts to understand. I got yelled at and yanked around by my mother, and put down and called names by my father, not guidance and examples I could follow.

All in all, it was the perfect storm of ignorance and injury, and here I sit now, looking at the tough row that I hoed all through my childhood… increasingly amazed that I turned out as well as I did. I got hurt. I got hurt early and a lot after that.  Each injury added on the previous one, and it’s only by the grace of God (or whoever else is looking out for me) that I actually ever got help, long after so much damage had been done.

Last night, as I lay in bed all torn up over this, the thought came to me… I am certainly not alone. I am not the only person who has every been injured and not gotten good help. I am certainly not the first or the last to struggle with these things. We all, in some way, have been broken, shattered, lost. And we all in some way have had to battle back against seemingly impossible odds to make of ourselves and our lives what we can. And in the end, it’s not so much about grieving the things that are gone for good — though that’s part of it. It’s more about taking what you can from the experience, building back your life, connecting with other people who have been shattered in their own ways, and helping one another pick up the pieces and go on.

Each of us knows what it is to struggle. Each of us knows what it is to lose. I don’t care if you’re rich or poor, triumphantly super-smart… or now and then dumb as a rock (I’m raising my hand here 😉 It doesn’t matter if you’re young or old, if you belong to a certain race or nationality. The fact is, we’re human. And we all have things to overcome — things that are all but impossible, some that sometimes take us down (now and then for good) — and if we lose sight of that fact that we all share, then the world becomes colder and harder and it feels more like a rock spinning through space than a green, living planet that keeps us all alive.

In the end, I have to wonder… if I had stayed super-smart and stayed ahead of all my peers, would I be the person I am today? Definitely not. There is a very good chance I would have no compassion for others, have no patience, have precious little understanding, and I might sail through life with riches and power and influence, but never have the kind of life that is worth living to the fullest. We appreciate so much more, when we lose something we value.

I lost the hope of my childhood, the promise of my early years. But in the end, I still have the present, and I still have my future, and I have a deep and intimate understanding of what it is to lose much that is important. — I understand that on a profoundly personal level. Knowing this makes all the difference. For myself, for my family, and for every person I meet and come in contact with. It’s the kind of knowledge I probably never could have gained, had I stayed in one intact piece.

And for that, I am (somewhat) grateful. It almost seems worth the price.

But still…