Recovery is hard.
Harder when you have to deal with inconsistencies in cognition and bursts of confusion. There is no switch that flips in between the two. It is a long winded bridge from confusion to clarity. And there is no telling how long this journey will take, if at all. This is a very fundamental fact that we have all had to accept. Being blunt and honest has been an effective method to come to terms with the reality in order to persevere.
Imagine being rudely woken up in a reality where you cannot speak or understand what others are muttering about; just noise. In a reality where you cannot walk and are bound to a wheelchair. In a reality where the right half of your body is incapacitated and you are completely at the mercy of others to help you move. In a reality where your food comes in through a pipe directly fed into your stomach. In a reality where all you could do is silently scream and hope the nightmare passes through.
I hope the rest of us only have to imagine.
For Jitish, this has been a crude reality.
Despite the calamity, Jitish has been gradually gaining his cognitive faculties and overcoming his physical shortcomings; slowly but surely. It has been 475 days since the accident. I could recount almost every day of this new life; painfully, with a new comprehension of mortality.
In these 475 days, he has made great strides.
- Danger of being in a vegetative state; overcome
- Tracheostomy – breathing tube; overcome
- Gastrostomy – feeding tube; overcome
- Dysphagia – difficulty to swallow; overcome
- Aphonia – inability to produce sound; overcome
- Broca’s Aphasia (expressive) – speech disorder; all he used to say for months were the words “engine”, “speed”, “53”, “35” repeatedly
- Wernicke’s Aphasia (receptive) – comprehension difficulty; everything he heard was just noise
- Apraxia – difficulty with motor planning to perform tasks or movements when asked; progressing with physical limitations
- Physical Disability – Inability to walk; has close to 60% of his balance and gait
This list only scratches the surface of the aftermath of a Traumatic brain injury. There is such a long road ahead, the thought of which is quite unsettling and exhausting.
Jitish has been following orders and commands ever since he woke up 21 days after the accident. When all that your brain wants to do is sleep and take rest, the world yanks you up and commands you to fight. Wake up at 7 am and sleep at 9 pm in an effort to reset the circadian clock. Physical therapy sessions that are required to shock your brain into standing up and walking. Speech therapy sessions to learn how to swallow and bite and eat. Occupational therapy sessions to learn to use your hands and coordinate once again. People telling you to walk. People telling you to eat. People telling you to lift a ball with your hand. Not being in control of anything that happens to you. At all.
If this ever were to happen to you, wouldn’t you be mad? Wouldn’t you want to scream and shout and bring the roof down?
If you are dealing with a TBI, yourself or your loved one, understand this.
Anger is a dominant part of recovery.
During the recovery stages from a traumatic brain injury, the brain kicks into ‘survival’ mode. The cerebral cortex houses logic and judgement, the thinking brain, which takes a hiatus for a while. After a TBI, your brain powers down and prioritizes tasks; in quite the same way as a computer operating system does. This reboot process could take anything from a few hours, to days, even up to years. While the cortex recovers, the emotional part of the brain, in particular the Amygdala, gets flushed with a cocktail of hormones. This leads to an uncontrolled surge of emotions. Two of the most common emotional outbursts come in the form of anger and depression.
We had been warned. Anger would be uncontrollable and often unmanageable. Sometimes lasting a few minutes and then just dissipating. Other times lasting for over days with no signs of respite.
In the months following the accident, Jitish moved through the Ranchos scale at a slow and steady pace. With more awareness of self and the environment came more confusion and anger. At first it was triggered by physical movement, wanting to be confined to his bed. It took months to break that pattern. Once there was more movement, Jitish began to realize the weakness of his right limbs. The inability to comprehend his state led to dissociative demonstrations. He started to detach himself from his right arm and leg. Demanding to ‘kill it’, ‘take it off’, ‘get a new one’ and refer to his arm and leg as ‘he’. This separation from self was a defense mechanism. To make sense and table the problem. In the next some months, the anger didn’t abate.
I have scoured the internet in search of anger management techniques for traumatic brain injury. Read research papers, hospital websites, brain injury helplines and spoken to therapists and doctors to find tools to equip ourselves with. With all the homework and preparation, when a strong guy with the loudest voice screams at you, all the prep is put to shame. I remember my chest vibrate with shock. His screams just made my knees buckle. A lot of yelling and screaming. Throwing of things. Biting. Inconceivable and violent anger.
Unfortunately for us caregivers, we were the only advocates he had. Since his brain hit ‘reset’ on his social and emotional memories, we were tasked with re-establishing those emotional norms. I hate what I had become. The emotional matron. Telling him to pipe down as soon as I see anger simmering. Telling him that getting angry was NOT OKAY, when I knew he deserved to shout and let it all out, just seemed to rob him of his emotions. Letting it all out, however, was not on the recovery manual.
We tried silence. Zero stimulation. Isolation. Incentives. Time outs.
He was quick to adapt to our strategies. We could stretch one tactic maybe three times and he would turn immune to it. Although, it was an encouraging sign. A sign that his brain was analyzing and setting priorities. Such a double edged dilemma.
When all else failed, Medications were the last resort. Prepare yourself to cross that bridge when it comes.
A lot of things hinge on compliance. The hospitals wouldn’t keep Jitish for long if he was constantly angry and refused to participate. Therapy sessions were cancelled when he refused to get out of bed. Forcing him and commanding him at some points only made it worse. He would curl up into a ball and lay of the floor. With the added complication of a deep vein thrombosis, taking his scheduled medicines were vital. It was a clear life and death choice. Medicines had to be taken. And so there had to be some force. More than I was comfortable in wielding. I have sat on the floor with him for hours, holding him, forcing him to stay calm, until he would take his medicines. Emotionally exhausting.
It was critical that we as caregivers looked inward and managed our own emotions as well. The calmer we were, the better chances at managing him. Only that this was no easy task. When we lost our cool, matters quickly escalated. After months, he started to register humor. Luckily this could be used as a deflection tool. For a short lived period.
These emotions were difficult to handle, but absolutely necessary in powering up the will to survive and succeed. So while we were wary of every outburst, we at least knew he was fighting!
I am terrified of the possibility of anyone dealing with TBI armed with no tools. There is no sound reason to walk into this with blindfolds. Learning and understanding helps your loved one and yourself have a better outcome. It is monumental that caregivers understand the triggers, learn the management techniques and adapt with every interaction.
Months later, the anger returned. Without any warning. When the focus shifted back to his hand. This time it intended to stay for longer and make a show of it. None of the incentives worked. He just flat out refused therapy. Refused to walk. Refused to eat. Refused to exercise. Refused to get our of bed. Repeatedly demanded to get a new hand. “Cut it off. Replace the right side. Get a new one”.
I still have nightmares and those words ringing in my ears.
Hopefully, this is the final tidal wave. Hopefully, we have the patience to weather this storm. And hopefully, he will gain more clarity and gain back some of his ‘fight’. It is all up to that amazing brain of his; and the desire to fight back. Pray he accesses it.
A quote by Rumi has been nagging at me for months,
“It’s your road, and yours alone. Others may walk with you,
but no one can walk it for you.”
Until then. Lots of candy. Head low. Prayers.
Food for thought: if anger is an outburst from the limbic system, and not from the logical and rational cortex, then next time you are angry or have to deal with someone who is, take the high road.