Miracles and Ambiguous Loss

Joel 2:24-26 (NIV) The threshing floors will be filled with grain; the vats will overflow with new wine and oil. "I will repay you for the years the locusts have eaten.... You will have plenty to eat, until you are full, and you will praise the name of the LORD your God, who has worked wonders for you; never again will my people be shamed."

The symptoms of unresolved grief from ambiguous loss are similar to post-traumatic stress disorder. Ambiguous loss is also a psychologically distressing event that is outside the realm of ordinary human experience; like the events triggering PTSD, it lacks resolution and traumatizes. But with ambiguous loss, the trauma (the ambiguity) continues to exist in the present. It is not post anything. Ambiguous loss is typically a long-term situation that traumatizes and immobilizes. Ambiguous Loss by Pauline Boss (1999) p. 24

Dh's being here today is a blessing and a gift. I'm certain he is still alive and part of his family for a reason. Briefly, I'll recount the miracles that led us here.

I don't remember being given dh's chances of survival, but now as I type this I remember that maybe I was, "fifty-fifty." After a week or so, I was told he would survive, but be in a coma or coma-like state for possibly months, after which "he will have to learn everything all over again." Later no one would ever tell me if he could walk again and his therapist would caution that even if he could walk with her, it would be a far cry from walking in a community setting with uneven surfaces and distracting surroundings. Early on, a consulting neurologist told us dh was blind. And months later, even after he came home, we were told the left arm very likely would remain unresponsive. As for being independent, I was told that dh would be able to stay at home, but would accomplish activities only if rigorously trained to rely upon lists. Though dh has a far way to go, he has greatly surpassed all of these expectations.

Still, almost everything he does must be planned, organized, directed, and evaluated by another brain - usually mine. Though generally dh has a pleasant demeanor, his emotional life remains very shallow. When I strained a muscle trying to fold the wheelchair he no longer needs, he watched impassively, not asking if I was okay, not empathizing with my pain. The few flashes of emotion expressed are anger. When in bed I reached out to pat dh on the shoulder and accidentally touched his face, dh grabbed my hand and twisted it, letting go only when I repeatedly told him not to hurt me. Not dismayed at his lack of control, he also did not apologize without being told to do so.

So many things are mixed blessings. I think God I have a sound mind and body (such as it is!). Just as a silly but telling example, we've camped once since his accident and I'm planning for us to again this weekend. Of course, I do the planning, all the packing, loading, unloading, tent set-up etc. Then all night long I'll be escorting dh back and forth to the bathroom. A consequence of the brain injury can be an overactive bladder and, Mark insists, trees are not a suitable substitute for the restroom. Dh had been the parent who was more adventurous, who would take the kids mountain climbing, mountain-biking, fishing, kayaking, etc. Once I could walk the dog and children along trails. Now dh's walking speed is so slow and balance precarious enough that his job is to hold down the fort at fireside. Mine is to attend to him.

Dh is not the man he once was. We hold on to realistic hope that things will continue to improve for months and years to come. But our lives, particularly the lives of our 9 and 12 year old children, can't stand still waiting for Daddy to come back. What is it like to watch movies with a man, whom you once looked up to and relied upon as the bedrock of security in your life, who now guffaws at puerile humor that as a nine-year-old you don't think is funny anymore? You have a dad who thinks he still takes you to school and helps with your homework, but really has to be told when to go to bed before your own bedtime. Your dad once spent all Christmas holidays making rockets for you and now doesn't remember it, can't cross the pastures launch the rockets, and doesn't understand how they work anymore?

Of all the losses experienced in personal relationships, ambiguous loss is the most devastating because it remains unclear, indeterminate.... People hunger for certainty. Even sure knowledge of death is more welcome than continuation of doubt. (Ambiguous Loss p. 6)

Ironically, the greatest source of ambiguity is dh's improvement. How will he finally be re-integrated into our family? As a dependent who nevertheless still can help around the house or as a person with his own thoughts, feelings and desires? Even better, as someone who has a concept of the future and who recognizes others' feelings and still cares for them?

How does ambiguous loss make people feel helpless?

1. The loss is confusing and not amenable to problem-solving. Lack of mastery ... increases not only perceptions of helplessness but real helplessness. (p.79)
2. Because of the ambiguity, adjusting roles and rules in the family relationships is difficult.
3. There are no symbolic, supportive rituals (such as funerals) to help the greater community to validate or verify the loss.
4. The clear evidence of the unfairness of life as well as the ambiguity constrains community and extended family members from lending support.
5. Ambiguous loss goes on and on, exhausting caregivers in the grip of relentless uncertainty.
6. In the midst of turmoil, the family must reconstruct itself and manage daily lives in a new way.(paraphrased pp. 7-8, 20)

Recent Blessings

Psalm 10:17

You hear, O LORD, the desire of the afflicted; you encourage them, and you listen to their cry.

I've met some lovely people lately who fill me with hope. One, a stroke survivor, can explain what things are difficult for her and why. I marvel at her making an independent life for herself as a single mother. I've also recently met a neighbor whose husband had a brain injury ten years ago. In all that time she had not yet met a wife supporting a spouse so devastated in the prime of life and yet so unaware. I'm grateful I have the family and community support and dh is well enough that I can care for him at home. I met a brain injury survivor at the rehab program who similarly is blogging her life, which includes twin pre-schoolers. And one of the first caregivers I met at the program amazes me with her dedication and spirit. Her husband recently was recognized Texas Brain Injury Survivor of the Year.

Today dh returns from a two-day, one-night men's retreat with our church. I'm grateful to the men, dhs friends and mine, who volunteered to take dh and look after him. In return, they gleefully took dh's presence as the excuse necessary to rent a golf cart for the weekend.

Another Miraculous Story

For some reason, pregnancy seems to give license for people to share their horror stories of labor. My experience regarding brain injury has been the opposite. Rather than stories of despair or deterioration, stories of amazing recoveries abound. I've just seen one such touching story recently in an online chat.

My cousin was a sheriff's deputy who had the misfortune to have a bomb planted underneath his cruiser. It blew and he wrecked. He was in a coma for 4 months. The docs told us that he would never regain consciousness and would remain a vegetable for the rest of his life. They said there was absolutely NO brain activity and that machines were the only thing keeping him alive. They wanted his wife to sign the papers to disconnect all life support. She refused and he is alive to this day, more than 20 years later. He came out of the coma with amazingly few deficits considering. His gait is awkward, his speech is sometimes slurred and he has some memory issues, but he knows who we are and has fewer executive functioning problems than my husband [also a TBI survivor]. He can drive himself, takes an active role in his church, helps coach little league, etc. As I stated before, WE WERE TOLD THAT HE WAS COMPLETELY BRAIN DEAD!!!! He did have to undergo extensive cognitive and physical therapies to learn to walk and talk, etc, but he is by no means brain dead! Do not give up hope!!!!! Until [the] last breath, there is always hope.

Psalm 37:4 Delight yourself in the LORD and he will give you the desires of your heart.

Winter Comes

But you never know what season M thinks it is. He's been fairly accurate about dates lately, but today he told me it was September. No telling why. I see now I last wrote here in September, so sorry.

M's progress continues, but more slowly. Today, for the first time, M tapped on the car window to let me know that the door was locked. Up until now, he would just stand there until I noticed that I had not yet unlocked the door. And a few weeks ago, he completed a task (stemming grapes and putting the bag of grapes in the freezer) without my direction and while I was out of the house. M does chores much better, with more common sense.

We've been waiting for M's next step in therapy to be approved by the state's Department of Adult Rehabilitative Services. I expect he will return to a rehab program soon. But I have been told the approval process can take months. In the meanwhile, I'm doing therapy for M at home. We're following the exercises his last OT, PT and speech therapist gave him to do. I'm seeing lots of progress is M's being able to stay with a particular exercise once I direct him to start. In addition, almost every weekday M walks on a friend's treadmill (he's up to a blazing 1.7 mph for 15 minutes) and walks in the water for another half hour at the city's pool.

Please continue praying for us. God has been so good to us. Bless you all.