I saw Alexander Payne’s “The Descendants” recently. And as I sat in the dark theatre my heart and my head began to quite literally quake. “The story”. The epic journey. The pain. The sadness. The fear. The unimaginable “story” was back. And after 7 years it is a journey that still haunts. My journey as the caregiver/fiancé’ of a TBI survivor resurfaced like a bad tooth ache, heart ache, ripped open wound…now freshly salted and full of flavor. The film in itself was haunting, Kauai is haunting, George Clooney’s portrayal of a lost man who begins to recover himself as a man, is haunting.
Alexander Payne has become a favorite director of mine. "Sideways was fearless and gave those of us that are not quite perfect a place in the sun! But I had no idea he would be telling a story so similar to my own. And when Alexander Payne decided to tell a story, he freaking…tells it like it is.
In talking to Mr. Payne at the Q and A after the film (Thanks Roger Durhling) I found out the actress that played Clooney's wife,Patricia Hastie, was hired as a Featured Extra. Featured Extra's make the bare minimum and usually the demands are not great. According to Mr. Payne, Patricia took it upon herself to become the character, losing 20 lbs. gradually as the fading spouse. Coming to set deliberately grungy and demanding no one talk to her. She learned to control her REM movement. Not easy, especially when actors are yelling at you. But the moment that brought me to my emotional knees, was when Matt (Clooney) kisses his wife Elizabeth goodbye. I remember that mouth. The mouth of someone in a coma. It is to be very frank;rotten,dry and smells putrid. But he kissed it and I have kissed it...because when the people we love are leaving us; we will kiss what ever is left of them. Letting go is so very hard to do. And the simple act of pressing flesh while the person still has a pulse is strong and lasts forever.
I cried for days after seeing this movie. I cried for the loss, for my sons loss, for the pain, for the betrayal, for the time we gained and waisted....I just cried. And in all of those tear came a deep cleansing. When I spoke to Mr. Payne he asked if I had felt that...if I did feel that now and I said, "you know...I do...I feel clean. Thank you Alexander...thank you for reminding me."
The “Descendants”, is a brilliantly bold and honest picture of the effects of TBI on not only the patient but also the family. How TBI affects the people closest to the victim. The anger, misery, pain and at last, the truths that surface from the now silent victim, the forgiveness..oh God the forgiveness…and then…the release.
I had no idea what the film was about until, as I sat on the second row of the Riviera theatre a few Saturdays ago, the story began to unfold. My seat felt hot, I felt hot and a tremor emerged from deep inside my body and what’s worse, my soul.
The survivors/patients are rightfully BUT the caregivers often have a story too. We live through what might possibly be the worst experience any human can have as a non-injured victim. But a victim of a very different and painful kind…the kind that is often in the shadows and not acknowledged. Very often TBI loved ones come out of the experience worse than the patient. We hurt too. And the process is lonely and potentially crazy making. Life changing and remarkable. As courage building and life balancing as the experience can be, it can, in a flash be akin to a detonated mine -- kneecaping you emotionally. Sending jolting uncontrollable short circuits of pain and looming bolts of unending anxiety…and then...the guilt. The beating question in every brain of every survivor…”why them…why not me?”
No film has ever done the experience of the caregiver or the ones left behind justice, until “The Descendents
Once the TBI patient re-claims their life and begins to recover their abilities and/or deal with their disabilities, this is where the time sensitive and grueling work begins. People do not just wake up, stand up and go back to their life. Because the life before is now gone and in many cases completely. But the brain is insanely resilient. Theories I believe in, such as the “phantom brain”, are new and controversial. All though there is little evidence to support them. If any science were to be classed as a “faith based” science, it would be neurology. Neurology is a NEBULOUS science. It is subjective and there are no definitive answers. It is like crossing into a prism of infinite space.
“Rosencrantz: …'Tis too narrow for your mind.
Hamlet: O God, I could be bounded in a nutshell, and count myself a king of infinite space—were it not that I have bad dreams.
Guildenstern: Which dreams indeed are ambition, for the very substance of the ambitious is merely the shadow of a dream.”~ Shakespeare
I remember seeing the 1991 film, “Regarding Henry”. Harrison Ford plays this briskly-brovadonous New York attorney who one moment is a shark-skinned-snake in the courtroom and in the next moment a drooling non-responsive - TBI survivor.
Unfortunately, it was NOT an accurate account of anything I have ever seen in my limited, yet vast experience as the caregiver/loved one to a TBI survivor. TBI patients DO NOT become adorable child-like idiots! A more honest account would be …they might become as simple and eager as a child one moment and as vicious and dangerous as a full-blown psychotic the next. There is no knowing, no gauge, and no way to measure the recovery of the brains patterns of synopsis. So if you are lucky and know some sort of faith…it helps. Nebulous science neurology. Not a science for pussy's. The patient's families always want answers and very often the answers are "no answer" answers. Now that is an art form.
When people ask me, “How are you doing?”
It is such a normal every day question, meant for every day people, who have had every day lives. But do I really think my life has been “normal”?
I try not to talk about this part of my life.
Trying NOT to answer the question?
To tell…”the story.”
For me “the story” dominated the conversation every moment of every day for eighteen months. A suspended state of anxiety took peace from my center. My center became about another person that was not my son. And these days we have learned, my son and I…just not to talk about it. It depresses people. It depresses us. They do not know what to say…so why bother. In fact, many people, many “friends” quite simply-- run away. It is ok. It is too much. If I had a virgin mind to this experience, hell-I might choose to run too. Seems people think these afflictions to our mortal coil are in a word catchy….ya know like divorce and defaulting on a home loan. Basically I guess it is just a case of having something nobody wants.
The story becomes jaded. The preverbal “snake story”.
Too many people “think” they know what happened. The reality: the people that really know will always know, but there will always be different stories…different perspectives. I can only describe my own experience.
Life is very often not fair and very confusing. Yet in these moments of obliterated reality we find out who we really are and what we are capable of. Did I ever think I would argue on daily basis with a neurologist? Did I think I would learn how to tap out an IV? Read monitors for breathing, heart, brain, and neurological function. Change an adult diaper, restore cap-cath onto my partner’s penis or tie him down into four point restraints when he could not control his own body. Did I ever imagine the days and nights that passed from February 14 2004 until June 2004? No.
My life was so changed by the experience. It is the memories that haunt and hurt now. Nothing real is there to hurt my son or me. And there in lies the rub. Do I become another victim of my partner’s brain injury or do I take what I learned and move forward? How do I share the experience and not become a broken record of misery. Can I help anyone with what I know and what I have learned? That is what life is for isn’t it? To “ be a-part” of the human experience for humanities sake? We are here to be in relationship and to be of service—right?
When I watched the Gabriel Gifford’s interview on TV I thought, “Wow! That is a great story. That is the story people want to hear. THIS is the story I wish I had.” The progress is inspiring. The power of love is and can work miracles. Gabriel Gifford’s is making an incredible and miraculous recovery. This is the way the story should always end. The great story. The story everyone wants to hear. Gabriel Gifford’s had a good spirit to begin with and that is very important. The progress she makes from here on out will be about her authentic nature. TBI has a tendency to strip away ego and reveal a persons true nature.
The way she uses music as her catalyst and motivator. She does not seem to mind a bit and she is very aware of where and who she is at this point. It is a one-in-a-million story.
We want to hear her story and watch it and we long for more. This story, for now, is leaning toward a happy ending. Never did the love of a good and decent man and the support of a community shine more brightly than in the case of Gabriel Gifford.
But what happens if your story is bumpy, fraught with disturbances, manipulations and in the end has a not so happy? What if NO ONE really wants to hear your story?
TBI to PTSD…. and back again*
Sad to say the stories around the caregivers and family of TBI patients are more often than not fraught with intricate moments of human frailty and decisions no one should ever have to make. They are not happy, there is no peace and they may take the rest of a life to understand.
It was a beautiful morning, Valentines day 2004. My partner and I were making the bed as he prepared for a paragliding competition that would take him from Santa Barbara to Ojai. While the white sheets floated in the air and then gently landed on the bed we laughed and talked and he said the words, “will you marry me?” And my response was my usual cynical reproach, “well yeah cause God knows, no one else will have ya.” That was how the day started. The plan was to have a few friends over for Valentines Day Dinner and celebrate…. love and friendship.
My son and I kissed him goodbye and wished him luck.
He told me which channel to tune into on the walkie-talkie that sat on his home office desk. “Debbie” would give updates on conditions and pilot activity. I figured he would be home around 5pm. I cleaned the house, set up the dining table for 12 and then went to Costco for lots of meat. At Costco a tall Carolina Jasmine caught my eye and landed in my cart along with a twenty-pound rib roast. I was stuck in a line that was about eight deep when my phone rang. It was one of our paragliding friends. He assured me my partner was okay, just a little beat up and that he was being transported to the hospital in Ventura. I did not know what to do exactly. I was stunned I guess-in shock and for whatever reason I stayed in line and paid for my goods. Nothing had sunk in. Soon I had fielded about eight phone calls, the last was the wife of another “pilot”.
The joke that was never a joke…when I first met all of his paragliding friends and their wives, the women all said, “welcome to the paragliding widows.” I never quite got it until that moment. The last phone call was, “we are coming to get you and take you to the hospital in Ventura…it is bad and you need to prepare yourself.”
I called my parents come to take care of my son. They lived in Lompoc at the time and I had no idea how long I would be in Ventura so I asked them to pack a bag and stay with us for as long as I needed them. This decision would later cause intense anger within my partner’s family. They never understood why my parents were in the house. They must have forgotten I had a 7-year-old son. What ever it was it crated tension and resentment and it could never be undone. I simply wanted someone to watch my son. No diabolical plan. Just someone to look after my child while I was at the hospital looking after the man who had become my fiancé’ only twelve hours earlier.
When I arrived at the hospital in Ventura I was never allowed to sit, two nurses hooked me like chain link fencing. Walking and talking. Handing me a clipboard and some paper work to sign as we walked quickly into the ER. I saw my partner lying on a gurney his head was being shaved as they spoke to me. His head was swelling so fast that from one moment to the next it expanded like a balloon. And that was the problem, the thing they had to fix first. The list would grow through the days and weeks. The nurse spoke in a low calm yet stern voice…
Something about his chances, “he has been gravely injured and we need to do brain surgery as soon as possible…his brain is swelling and we need to relieve the pressure in his skull…” I asked about his recovery and they quickly shut me down, “Let’s see if he lives through surgery…and then we will go from there…he may not live…there is a 50/50 chance.”
I was considered as his next to kin as his fiancé’. I signed forms for a first surgery…a second…a third and so on. Four surgeries in two days. I was being educated but fast in TBI with complications. He had a crushed chest and face, a torn shoulder, multiple fractures. He went into the initial brain surgery with a 50% chance of surviving and NO idea what his mental state would be post-trauma.
Once he had survived the brain surgery his heart became the priority. He was transported back to Santa Barbara Cottage Hospital Cardiac Care Unit. This made it easier for me to be there for him and take care of my son. He survived the heart surgery but then developed pneumonia. It was like medical ping-pong. For over ten weeks I had to deal with daily shifts in the priority of the “medical 911 du jour.” He was in Cottage ICU for over three weeks and then moved up to the 5th floor- surgery-med, still in a coma. He would wake up slightly and for the sake of his many injuries they kept him in a medically induced coma. As the periods of awake time increased, I looked for ways to jog his memory.
My son had had some neurological issues and we had parquetry blocks. Bright primary colored blocks in various geometric shapes. I played music he liked, read to him, sang to him. I put up pictures of family and friends.
All the while a venomous daughter was fighting every move I made with no gratitude and no kindness toward my son or me. She would come by before going drinking and dancing with friends. I found an attorney to handle his affairs while he was in the coma and much to my surprise this same attorney along with the daughter would change course and instead of helping him, helping her. Ex wives came out of the woodwork! Everyone had an opinion about his relationship with me. My rights. The hyper Christian right swooped in and they were taking hostages.
While this poor man lay in a coma his blood relations engaged in conversation over his bed as if he were dead.
They argued about property and holdings. They argued about my right to be at the hospital. and later my right to be in my own home.
My concern was to take care of him, his home and business. I ignored the negative and just focused on the positive. I saw him move when no one else did. When the Dr.’s said he would never walk or speak or feed himself I stayed quite but I knew there was more hope. The family at one point wanted to warehouse him. I was becoming weary from the fight. He transferred to SB Rehab and then Solutions. Solutions works specifically with brain injury patients in helping them recover their abilities. It is a really wonderful place. Just a house in Goleta that has been transformed into a place where miracles happen. I loved the staff. They were straight, supportive and deeply-deeply compassionate. They counseled me as the primary caregiver and it was there devotion to the truth that got me through the bad days.
In his fifth month of recovery something happened.
As he was regaining speech, movement and some of his long-term memory, his family began tell him things about me and even my seven year old son. (As if a seven-year-old boy could have done anything.) His mind was unable to handle the pressure very often. He had headaches that would break my heart to see. He would become so agitated and threaten suicide. His partner in an investment property was trying to get him to sell. Debts were mounting and his daughter had taken the Conservator ship over him and his property. She would often just walk into our house and take things. Money, property (mine and his) and she began to demand things. His son called me one day in a panic. He told me the family was going to “evict “ me and move into his home. I spoke to adult protective services and they told me this happened more often than not. He was calling me from Solutions night and day. On one home visit I took him to see my parents and again he proposed. Said he would not be alive if it had not been for my love and devotion. But at the same time he would have these horrible rages. Child like tantrums. Moments of mental instability. Unable to control his rage he would fall into a pitiful state of loss and depression often crying for hours. One moment I was the angel of his life and the next… don’t know what I was to him.
His friends told me to leave. To go on with my life, that I had done enough and I needed to take care of my son and myself now. But I could not give up on this man. I guess I have had a really effective Catholic upbringing. I am a born co-dependant. I felt I had to stay. I was bound spiritually to finish this process.
But one day on a home visit he flew into such a rage, we could not subdue him and then he threatened to kill me and my son. It took three police cars and six officers to restrain him. His threats stuck in the air of our once peaceful home even after he was returned to Solutions. He would phone all day and night. Threats, threats and more threats. The folks at Solutions called me a few times and told me he had gone “AMA”
(Against Medical Advice) and that I should protect myself.
Adult Protective Services visited me and told me that this kind of thing happens more often than not. They explained I had done enough to help him. “You were there for him…you did more than anyone to bring him back…but brain injuries in men…often have this outcome” He had no inhibitors, no editors, he was strong and his brain injury had made him irrational. It was simply time for me to take care of my child and myself and get away from him so that he could not hurt us.
A group of friends swooped in and helped me and my son find a place to live. Within ten days we were out of our home. By the time we had moved the exhaustion and anxiety had taken a toll on my physical, mental and spiritual being. My son and I were suffering from PTSD. We put locks not only on the doors to our new home but also on the bedroom doors. My Ex Fiancé’, this man became a nemesis. He found a way to hack my email and emailed every one I knew horrible things about my son and me. My son was in 2nd grade, SECOND GRADE and this man trying to torture even him. He had figured out how to create checks in my name and forged several against my account. He used my name and SS# to apply for loans and credit. I applied for a restraining order not only for my son and I but also for my parents and sister. He found my new address and stalked me physically- daily. The police said they could do nothing if he did not come within a certain distance. I told the police he had a gun. They still could not help. This went on for months and months.
A year and half later I met someone who was NOT afraid of my “story”. A man who knew pain and anguish too. Some one who could see the damage and the survivor.
The thing about TBI’s is so much attention goes to the victim that the caregivers are swept aside. Un-noticed caregivers become victims themselves. We walk around in this suspended state of anxiety for weeks-months-years and it takes it’s toll. By the end of the third month after I left my brain injured fiancé’ my endocrine levels had crashed. My thyroid had stopped functioning. PTSD made it hard to walk out of the door in the morning, to find or keep work.
My son had fears no seven-year old should have. He feared for his life daily for almost a year.
So while Gabriel Gifford’s heroic story will lift the hearts of many and be told often…there is another story. There is a story not told on national television. The story people don’t want to hear. There is a story that those of who have experienced it would rather forget. I now I have learned to just leave out “that story” from that time. Unless it is to serve a purpose. I am intentionally vague. I self protect.
The upside? We survived and we moved on. We live our lives with the knowledge that we can and have endured the unthinkable. Quite often my son will say, “I don’t think about it anymore Mom…. but that man was scary…those people were scary and we could have died and we did not…let’s just be grateful.”
And so we are. This kind of gratitude is highly distilled a very precious. Precious pain-hurts the worst and brings the most reward. Every once in awhile I get a call about A TBI patient. I get a call for help and for that small miracle, I am grateful because it reminds me I am just a human being and the degrees of separation are small. We are all a part of each other for as long or as short a time as it takes. The lesson here for me was to believe I could bless and release and then just breath. To believe I had done my best and to be grateful I was there to do the job. What I learned in a big was how to be an advocate. How to talk back to the God-complex-ridden Doctor and how to say thank you…over and over to nurses and nurse techs and therapists…they are all living breathing Angels. The family caregiver can be a thankless job, but the professional caregiver has to deal with ungrateful family members every day with grace, dignity and tact. One day while I was visit my fiancé’ I crossed paths with a visitor calling a nurse to bring water…not for the patient…for her and I quickly and with no regret chimed in…”hey ya know this isn’t a cocktail bar…these people are not waiters…you have legs under that skirt and there is water at the end of the hall…okay?”
The nurse cracked up…even the woman cracked up and then they both said…”ya know…you should work here!” Gulp!
Today my son is recovering from ear surgery and I think I am pretty good for the home-nursing-Mommy stuff.
Lot's of gratitude.
If your path takes your down the "Caregivers highway" above all things remember when to ask for help...and take it!
And don't forget to breath!
Love your caregivers!
There should be a National Caregivers Day!