Grieving a TBI to Heal a TBI

I Have to Deal With What?

Our society does not deal with pain and loss very well, particularly pain that does not disappear after a week or two. So it should come as no surprise that we may not know how to deal with the pain we experience because of our loss of capacity. Close loved ones also need to grieve the loss, especially if their own lives have changed as a result.

Note: This is a long post, with an introduction to grieving and then an exploration of each of the seven stages of grief. Feel free to return as often as you need to absorb it. Print it out, save it to your notes, whatever works for you.

How We Grieve

Grief is how we deal with loss. Everyone grieves differently; however, there are stages of grief common to most of us. Elizabeth Kubler-Ross in her book “Death and Dying” defined five stages of grief, which apply to any loss. I have added the final two stages because Kubler-Ross’s last stage leaves us with accepting the loss — there is still a lot to do if we want to contribute to the world around us.

There is a temptation to view these stages as a means of controlling our grief. When I first learned of them, I thought “Ahhh, I go through each stage and then I am done.” Wrong. There is an unpredictable spiral to our grieving. We may not go from one stage to the next systematically. We may spend months or years in one stage and hardly notice another. We will return to various stages over time so we can work through them in a way not possible before.

Most of all, we need to realize that grief is never truly done. Even if we fully recovered, we would still have the loss ability during that time in our lives. We must give ourselves permission and freedom to grieve so that we can experience the healing it offers.

Grieving is not fun, but it is freeing. And the deeper our support from loved ones and community, the easier our journey. If you feel you need more support, please contact your priest or minister, the groups and resources in the link on the left, or myself (“Contact Deacon Patrick” at the bottom of the page). Though we must each travel this journey, we need not travel alone.

Spiral Staircase 11–01–2003
Written nearly one year after my disabling concussion. Simply naming that we’re grieving can free us to experience this challenging form of healing.

Grieving, they say, is a process of
Denial, anger, bargaining
depression, and acceptance.

It is not so clean as that.

The steps are all there,
if not so neatly lined up.

They are arranged in an inwardly descending
spiral staircase to the soul.

The first four steps are only
for the purpose of accepting and integrating
the need to decent the rest
of the staircase.

It is a journey well worth taking,
when necessity requires it,
for with each step into the depths,
One is added into the heights,
where, without the anchor of the depths,
we do not last.

To take the journey, I must first grieve
that I am grieving. Amen.
–Patrick A. Jones

The seven stages of grief are:

  1. Denial: This is not happening to me
  2. Anger: Why is this happeing?
  3. Bargaining: What if?
  4. Depression: I don’t care anymore.
  5. Acceptance: Wow. This really is part of my life.
  6. Integration: What’s different now?
  7. Co-Creation: I’m ready to contribute and reconnect now.

Let’s explore each stage as it relates to TBI more indepth.

Denial: This is not happening to me.

Stage 1

In its simplest form, denial finds us trying to convince ourselves that “this is not happening!” However, there are some very sly ways we can do this — all of which are futile attempts at controlling reality. One example comes from my own experience.

For the first several months of my disabling TBI, I kept trying to will my symptoms away. I had had nearly twenty years of unknowingly willing various symptoms away (looking back, in reality I was ignoring or “cutting through” my symptoms rather than making them disappear) so I could live a normal life. I was quite successful at this, until the symptoms became to great to “cut through” or ignore due to my disabling concussion. I failed miserably, yet for some time was unwilling to acknowledge reality. I kept trying to will it away.

Reality, however, has a way of asserting itself and forcing us to acknowledge it. Typically when that occurs, we move into the next stage of grieving: Anger

Fly Without Wings

02–01–2003

I wrote this at 2:30am after learning I had TBI and the damage was permanent. I tried to will my symptoms away. I was trying to deny the very reality of my disability, attempting to control it.

I have tried, desperately,

to make this up.

If I am, if I can,

I can make it disappear.

I am not and I can’t.

This is real and

it is happening to us.

Not a nightmare, really,

they are different:

we wake up from them,

their pain dissolves with

consciousness –

there is no waking up and

reality is even clearer with

consciousness.

So we face into the wind

billowing forth upon this brink

on which we stand

and prepare to learn to fly

without wings.

–Patrick A. Jones

Anger: Why is this happening?

Stage 2

Once we accept the reality that we are suffering, we begin to get angry that we are suffering. Why is this happening? And of all people, why is this happening to me? We want to believe there is a purpose to suffering, particularly our own.

At first we may be angry at the circumstances that led to our suffering, or the person who caused it. However, we eventually realize that God, who knows all, sees all, and can do all, allowed this to happen to us. Why?! Why God?! Suddenly we realize we are angry at God. Will God punish us even more because we are angry with him? Was it God punishing us in the first place? Is punishment involved at all?

Angry at … God?

White Hat or Black Hat?

Which hat does anger wear? We often believe anger is a bad thing. It can be, if we give it free reign and allow it to control our reaction rather that viewing it as a sign that something is amiss and needs our attention, either within ourselves or within a relationship. Anger can very easily wear the black hat of hate and destruction.

If, however, we recognize anger as a tool for telling us that something is not right and then seek to understand and remedy ourselves or our relationships, then anger is a very positive thing, wearing the white hat that helps root out what is wrong! The story of Job offers us examples of anger wearing both hats.

Job

The book of Job tells the story of a man who feared the Lord (fear in the Hebrew sense means less “afraid” and more reverenced, held in awe, followed and obeyed). Then an accuser or adversary (not “Satan” in the sense we think of) asks a profound question: Does Job fear God simply because it is profitable?

Horrible things happen to Job. Job curses the day he was born — certainly angry that these things are happening! Much debating occurs between Job and his friends. Only Job addresses God. Through much of this, it is easy to picture job shaking his fist in anger as he says: “Oh, that I had one to hear me! … Let the Almighty answer me!” (Job 31:35). Finally, in chapters 38–42, God and Job bicker and banter back and forth, each clearly angry with the other, yet caring so much for the other that they keep at it. Through it all, Job remains faithful to God and is ultimately rewarded for his faith.

Playing with Job

Read the book of Job in the Bible (it is just before the Psalms).

Reflect, struggle with, play with, and write on the following questions:

  • What does the story of Job have to say about suffering?
  • Why does Job suffer? Is it because he was unfaithful? Had he done something wrong? Was it simply a bet between God and Satan?
  • Who shows anger and which color hat does their anger wear? God? Job? Jobs friends? Satan?
  • Are you comfortable showing your anger to God? Is God able to handle your anger? Do you fear retribution from God for being angry toward him?
  • How does the story of Job end? Is everyone angry with each other? Who helps heal the relationships? Why does God care about the relationship between Job and his friends? Between God and Job? And God and Job’s friends?
  • Does this story ever answer why suffering happens? Or does it simply offer that it happens and that God cares for us enough to be with us and guide us through our suffering?

Cruel Land

05–15–2003

To shake our fist at God and demand to know “why?!” is to love God. To be angry yet act demure is to deny God.

Why so cruel, bitter, and hard, Lord?

Why must I travel this bloody blasted land?

With gravity so strong as to

draw me down, yet so weak

as to allow me no bearing.

Its local inhabitants ritually enact

clanging chaos, bewildering and exasperating

in its frequency and result:

The air thickens to work the lungs,

exhaust the body, fog the mind.

What cruel land is this

through which I trek?

It is mine — the result

of damaged brain.

There is no way out but death,

Yet I choose to stay and live,

to trek this land, love my Beloved and our wee ones,

and accomplish what God put me here to do.

God, grant me strength and fortitude.

Amen.

–Patrick A. Jones

Bargaining: What if?

Stage 3

Whose Fault Is It?

If I blame the person who ran the red light, or somehow caused the accident I am likely to be angry at them, curse them, but I ultimately realize that they do not have the ability to change what happened.

At the core of bargaining is the question: “Who do we blame for what has happened to us?” Whomever we blame is the one we need to strike some sort of deal with to make it all better.

If I blame myself for not looking before I went, or not … then I will chastise myself with the terrible “what ifs”. What if I’d looked before I entered the intersection? What if… What if… Again, though, we eventually realize that this is pointless because, well, our ability to change reality is still as dismal as it was when we were in denial, doggonit!

So who do we know who can change reality? Hmmmm. God! If God wanted, God could make this all better. The conversation usually goes something like this:

Me: OK God. You are all powerful and knowing. (gotta butter him up first!) I know I haven’t been living like you want me to, so if I change how I live, make me better, OK?

God: Hmmmmm. So, you think I caused this to happen to you? Because you weren’t living quite right? Wow. You must really think I’m a jerk. I hope you get to know me better. This thing has caused you to turn toward me, so that’s a good sign. I do indeed have the power to heal you. But I also have the power to do far more. You see, you have this gift, and I can help you learn how to use it. In fact, it’s ironically easier to use because of your disability. What do you say?

Me: Uh. Well. Ummmm. That’s not what I had in mind. I want to be better. That’s what’s on the table here.

God: Ahhh, yes. Well, you see, what I have on the table is how to help people know who I am. And you are in a unique position to do that, because of your disability. Kind of sucks, I know, but I have figured out a way that good can come out of this bad thing that happened to you. What do you say?

What if…

05–03–2004

The whatifs gather, gripe and moan.

In my mind they oft do chide,

Hounding me from every side.

Seeds of unrest so easily sown.

Each gathers heavily upon my back.

Amuse them, bemuse them, lower I stoop,

I haven’t the strength to even recoup.

Tenacity is one thing whatifs do not lack.

–Patrick A. Jones

Depression: I don’t care anymore.

Stage 4

Acceptance: Wow. This really is part of my life.

Stage 5

God with us

Acceptance comes when we finally stop trying to change reality and we know that God is with us. The more we can experience God being with us, especially during the harder times, the easier it is for us to accept what we are going through.

I often hear “God doesn’t give us something we can’t handle.” Horse apples! If that were true we wouldn’t have suicide. It also assumes that God gave us this blasted TBI in the first place. God always offers us the grace to handle our challenges, but we have to turn toward God and accept his gift.

How to Accept Grace

Accepting God’s grace usually means letting go of something in ourselves that is less than what God created us to be.

Who did God create us to be? Genesis tells us that we are made in God’s image. God created us each to be a unique expression of him. That expression is the fullness of who God created us to be.

However, because we have an inclination toward ignoring God and doing our own thing (sin), we often pile mud and muck all about ourselves and mistake it for who we are. Sometimes accepting God grace, the very grace we need to handle life’s challenges, means letting go of some of this mud and muck that isn’t really us.

Signs of Acceptance

Signs that we are beginning to accept the reality of our TBI include: not flinching when we mention to someone that we have TBI, beginning to be aware that others around us have challenges also, being thankful for all that we do have, and starting to ask ourselves “What can I do?”.

Deciding to Enjoy Life

Happiness is nothing more than being content with what is. Happiness is a decision to enjoy what is. It is not some elusive butterfly that flitters from flower to flower. Happiness is the decision to seek the joy rather than the pain.

Disabled

2–11–2003

Words are important and powerful. I am convinced that until we can accept the word disabled, we can not accept our disability.

I am not differently abled,

I am disabled.

There are indeed things

I can not do.

There are many I can.

I feel the loss,

I see others daily

doing what I can not.

This is not merely different,

It is wrong.

I am, however, powerless

to change what is

and so I focus on what I can do.

Because in this I

Find life and hope.

–Patrick A. Jones

Rejoice!

01–08–2003

Written before we had any idea I had TBI.

Rejoice! My heart leaps in gladness

as I gaze across our stream and remember

all that I have done.

Rejoice! It screams out through the

fog of vast spinning, questions, uncertainty and fear,

that what I have done may perhaps be

lost from me forever.

How thankful am I that I have run

on frosty morns through the Garden of Eden and

seen sun’s gleam upon golden aspen’s shield,

on the path where deer, bear, and cougar tread!

How thankful am I that I have, in

wobbly kilted grace, glided upon our next door lake.

Sharing my clumsiness with my beloved and our wee one,

Skating with a crystal breeze upon our face!

How thankful am I that I have lived

as full and well as I may.

Because I now find myself upon the

threshold of journeying in some new, unexpected way.

Blessed are you Lord, God of all creation,

for in your goodness you have given me the life

I’ve thus far led. Grant me the courage to live

the one that waits, and may I always run and glide,

even in the crisp clear memory of a tear.

Amen.

–Patrick A. Jones

Integration: What’s different now?

Stage 6

Does TBI Make Me a New Person?

I have read that TBI causes us to become a new person. That is quite a stark statement. It startled me into realizing that I should not expect to be able to do what I used to. I have let go of my expectation, though not my desire, to be present in the same way I used to, to do the same things I used to, live life the same way I used to.

However, I am not a new person. I am the same person I was before I became disabled. My wife and close friends still relate with me similarly. We have not had to begin these relationship anew, as we would if I was a new person. My capacity has changed, but who I am has not.

TBI can cause personality changes. Inappropriate behavior, different reactions to similar situations, memory loss, and sudden, intense, uncontrollable anger can all be part of TBI. These are the changes that I believe have led people to make the statement that TBI causes us to become a different person.

Same Person, Different Capacity

Even in the face of what can be extreme changes, I still believe we are the same person with different capacities due to TBI. God created me as a unique individual with a unique purpose and nothing can change that. Many things can change how I am able to live out my uniqueness. TBI may make me less able to do the things I did before. But I am still the same person God created.

The challenge of integration is to mesh my new, decreased capacities with who I am. This is why it is so important that I view myself as the same person God created. I need someplace stable to begin figuring out what it is I can do. TBI will likely show me things about myself I did not know before, and it may help peal away parts that were never really me (or perhaps the opposite, if I’m creating new defenses against reality!). All of this I need to integrate into my awareness of who I am and what I am capable of.

Less Capacity Leads to Focus

One of the ironies of being disabled is that we have to focus our energies on a few things. We have to prioritize what is truly important and focus only on those things. If we prioritize well we may be able to accomplish more than we ever thought possible or even than did before our disability!

Erosion

03–27–2004

If I was a sandstone arch, I wouldn’t feel much different that I do now.

Rock. Solid and whole.

Time. Water and wind.

Parts of me, gone.

Sorrow. Grief and loss.

Not realizing I’ve been

Sculpted. Shaped and shorn.

Holy now, if not whole.

Gaping holes, gentle curves,

loss is gain,

beauty sculpted out of rock.

Me.

Beloved Lord,

Shape me as you do the stone,

Remove what must be to reveal

your beauty — present all along.

Amen.

— Patrick A. Jones

Co-Creation: I’m ready to contribute and reconnect now.

Stage 7

Co-Creating with God

Because we are made in God’s image, we have the built in desire to help create God’s vision by doing what we can to make the world a better place.

That may seem like quite a large task. It is. Our part in it is, however, quite manageable. Sometimes the hardest part is figuring out what our part is. “What does God want me to do?” is one of the tricky questions in life. It doesn’t need to be. And being disabled may ironically free us to see the answer that has always been in front of our noses!

What am I passionate about?

What am I passionate about? Where does my enthusiasm lie. What do I enjoy doing?

Answer these questions and you are well on your way to knowing what God wants you to do. After all, God made you and gave you those passions for a reason (however misguided they may have become!). But there is one thing that always is a part of what we are each called to do: build relationship.

Building Relationship

Each of us is called to build relationships for they are what truly matter in life. Everyone of the Ten Commandments is about upholding right relationship. Healthy relationships help people become who God created them to be and this always leads to changes that are truly lasting and can literally change the world.

How you build relationship can be as varied as we are. It is usually profoundly simple things: being present with our children, our spouse, our close friends; volunteering to mentor a boy or girl; doing nothing, yet uniting our suffering with Christ’s and serving as the light on the hill that can not be hidden. To often we define our lives by what we do rather than who we are. Who we are can have tremendous impact on others. Simply by how we choose to face adversity, others can discover hope, faith, love, and come to know who God is in their lives.

My Cross

12–08–2003

“Take up your cross and follow me,” says Jesus our Christ.

So this is my cross — the gift of Jesus to his friends.

How right they were to tell us this would be a long hard road.

It is. Arduous. Barren. Bleak.

This cross is heavy and I can not put it down.

I am merely a foolish pilgrim, making my way in the hope that

The dawn from on high shall break upon me.

That hope strengthens me, allows me to look around.

On my journey I see tremendous grace.

In my Beloved, as she gives so freely of herself,

My wee daughters as they discover the wonder about them, within them,

Our friends and community who help us day to day.

Pilgrim’s glimpses of what is yet to be.

This cross is no longer heavy,

though the road is still long and hard.

I am merry, lifted by this roadside grace.

My feet lilt a jig, my breath pipes a tune.

I am the merry foolish pilgrim conducting my God given

errand ere I head for home.

God grant me always the grace of foolishness

that I may see your grace boundless about me

and joyfully travel this pilgrim’s journey

as I strive to be your hands and feet.

Amen.

–Patrick A. Jones