About a week ago, a therapist and friend of ours texted me, asking if Patrick might consider coming to the hospital, to meet with a new patient of hers who was very depressed. For the sake of privacy, we will call her Jane Doe.
Both Jane and Patrick’s injuries, and the circumstances by which they occurred are similar. Jane was 31 years old when she, like Patrick (who was also 31), was struck by a car as a pedestrian. Her brain, like Patrick’s, was severely damaged by TBI. Because of the massive swelling of her brain against the inside of her skull, she needed a Craniotomy to save her life. A large piece of bone was removed, and she, like Patrick, was given a cumbersome helmet to wear, so as to protect the soft spot of her head that was now exposed.
This is where the similarities end.
Patrick had been in a coma for 11 days.. and by the two-week mark, was only minimally conscious. He was unable to control his body; not even the muscles of his face, could move to create expression. Jane, on the other hand was awake and walking around with minimal assistance. Eventually, we realized that Patrick was paralyzed on his left side, which then gave way to tone and spasticity. (Now, at almost three years post-accident, this is still a daily battle for us). Jane on the other hand, showed no long-lasting physical deficits that could not be restored with therapy. Yet, as I texted with my friend, she told me that Jane was battling cognitive issues that Patrick didn’t have.
“Plus, she has a little girl at home; just two years old,” she said. “And her spouse is not supportive. I think if she could talk to Patrick, it could really help. He’s such an inspiration.”
I told her that I would talk to him and get back in touch. But then life came at me full force, and I got caught up in a million errands, phone calls and appointments, and forgot to say anything to Patrick. The truth was, that I wasn’t sure how he would respond to the idea of meeting with someone, who might provide a mirror image to his past. Would it be too much? Would it bother him? Perhaps, I subconsciously forgot to mention it.
Over the weekend, I finally brought it up to Patrick, and to my elation, he was excited at the idea of speaking with Jane! So, I texted our friend to ask when would be a good time to come in and meet with her. But when I heard my phone “chime” with a reply, and began to read, my heart dropped.
“OMG, Andrea.. would you believe they discharged her yesterday?” she said. ” Just like that. They let her go. I can’t keep fighting for these people. It breaks my heart to watch the hospital make money, and a person’s life be lost.”
Jane had been sent home at two weeks post-severe-TBI and craniotomy, with no support system in place. A doctor who was filling in over the weekend, and who knew very little about TBI, was making rounds, when he met Jane. She, like EVERY SINGLE TBI PATIENT WHO HAS JUST BEEN INJURED, lacked awareness of her own injury, didn’t think she needed to be at the hospital, and wanted to go home. Despite the fact that the entire team of therapists, and the neuro-pysche advised that she was not cognitively ready, would not be able to care for her child, and did not have a supportive spouse, the doctor discharged her, because it was “what the patient requested.”
As I read the text, I felt anger boiling in my veins and a sickening, profoundly sad pile of rocks, drop into my stomach. Jane had been let down by the medical system, and was now on her own. We as a society, would never allow a child to be legally treated this way; to leave a hospital because they for instance, have cancer but don’t want treatment. This is because children do not have the cognitive maturity or awareness to understand adult things. So it is with a severely brain-injured person, yet the loophole of adulthood is that without someone to declare her incapacitated, and without someone to fight for her who loves her, she can call the shots for herself, even if the shots are dangerous and unreasonable.
My friend and I both know that Jane won’t get the therapy she needs at home. It can be extremely difficult to get Cognitive therapy especially at home, and out-patient is sparse at best. If her husband decided to fight for her and really advocate, it would still be nearly impossible to get her back into an inpatient facility, for once she is discharged of her own free will, the hands of the hospital become tied. She COULD go back after her skull cap is restored for quite some time, but again, someone would have to fight for her.
Her husband, if unwilling to learn about TBI will likely leave her, as do 78% of all spouses after TBI. He will take the little girl with him. And Jane, depending on the severity of her injury and cognitive deficits, could very easily end up in a state-run home, in jail, or homeless. (Two out of every three people who are homeless, have also suffered a TBI).
I stared at my phone, thinking of Jane. I thought about her daughter who is expecting her mommy to come home to her, but has no idea that the woman who was “mommy” will never come back. She has no one to teach her about her new mom. I thought about her husband; the fear, anguish and grief that is suffocating him, and blinding him to his vow to love, honor and cherish his wife, who needs him now more than ever, regardless of whatever issues they had in their prior relationship. (I don’t blame him for leaving, btw, as I do not judge ANYONE who finds themselves faced with TBI. The reality is though, that he can go on and live a new life. But Jane… what will Jane do?)
I thought about how cruel TBI is, how pathetic our insurance and health care system is, and how anybody with a good heart like this therapist, must want to give up fighting the tides of politics and money every single day.
“You have no idea how important it is to have somebody supportive like you to be there,“she wrote. “Patients fall through the cracks without it.”
I put my phone down. Lowered my head. Took a breath.
Something about Jane made me realize in a new way, that though my life-work’s hadn’t been music as I thought it would be, it had become something much more valuable. I had kept Patrick from become Jane. And I had never felt so honored, useful, purposeful, and so tremendously privileged to have been able to help Patrick get his life back, as I did in that moment.
In those early days when I was unsure what I should do regarding Patrick, (after all, he was not my husband, brother, son, or even boyfriend at the time), my heart told me what I had to do, and that was to stay. And to fight. I knew that if I left, Patrick would end up like Jane. Patrick would not recover. Patrick would be lost. And Patrick needed to recover, because he was a beautiful, vibrant, wild-heart man that had so much to offer the world.
Patrick, like Jane, and like every other TBI survivor needs a corner-man, to cheer them on, and to keep them in the ring, no matter what, if they are to recover.
Because we could all be Jane in one, horrific instant.
She is a wake-up call.
She is the face of TBI.
And she needed a voice.
Her story needed to be told.
So Jane, wherever you are…. I hope you wake up this morning with a stillness of peace inside you. I hope you know that you have a voice now, through me.
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Thank you. All our love, Anj & Patrick)