I should preface this blog with acknowledging that when I look back on my career, I should have discharged people much earlier. I should have reminded them that attending occupational therapy is a choice. When a survivor loses sight of their choice, that is when motivation begins to slip. You can hear the subtle shift in the tone and word choices of your client. When they begin to “have to come” to therapy or you learn that their partner is the main reason for continuing on: This is the one and only time that motivation cannot be built. If all of the effort and desire to change is external, then there is nothing to build on.
When should you quit rehab? The short answer is never. However, that is a difficult and often painful decision. If you have the luxury to decide when you are discharged, the most logical answer is our brains are plastic, so go somewhere where you can get as much exposure to stimulating neuroplasticity as you can. Work with a specialist who can create situations that are uncomfortable, thought provoking, and challenging. This is how you achieve the recovery that you envision. Without it, recovery may come in different forms or it may not come at all.
Whatever you practice will be what your brain recovers. That said, if you religiously create challenging speech homework, then go walking, then exercise your arm.. AND THEN you’re sick of hauling yourself to therapy. By all means, go it alone. You can do it. There are thousands of blogs, books, survivor gurus, and podcasts to guide you. It can be done. However, if you are not among the .001 of the brain injury population that are self motivated then go to therapy as long as you possibly can. If you go home and watch day time television for six hours a day, likely you will not get back the skills you once had and your mood may not return to your prior level of health.
It is essential that a survivor knows that when they “graduate” or quit therapy, the work is never done. Therapy is not supposed to be a glorified gym, but a place to learn skills: reproducible skills. In the case of brain injury, stroke, TBI, or concussion, it is not a cure all. Let that sink in. It will not FIX everything.
The work of brain rehabilitation is layered, complex, and the result of many competing factors. There are physiological, anatomical, psychological, and genetic imprints that determine the course of your recovery in many perceivable and imperceivable ways. Personality, socioeconomics, relationships, and education play as a big a role as the original insult in some cases. This explains why a person with a huge deficit that cannot walk can have incredible gains and a sunny outlook, while a person with a comparatively small injury, has no motivation in therapy and succumbs to depression. Much of this is not a choice on the part of the survivor or the caregiver.
I have had long term clients in my career that relied on me almost solely for their motivation and as their barometer of change and success. I let this happen. It is one of my biggest regrets and a situation I am now quick to avoid.
It happened with these two people that I took on the responsibility of their recovery. I would say anything to soothe their psychological discomfort at the idea that “this was it.” They had to progress and get better or I was not doing my job. I got in this profession to help people. If they are not making measurable gains, well that meant I was a bad therapist and they couldn’t know that. I had to live up to my degrees. I could not tell them that no one on the face of the earth could tell them definitively when they would “get back to normal.” Instead of allowing them to feel their feelings, I soothed and soothed. I threw myself completely at the problem. Taking courses, researching after work, and committing 100% to every session. I ran so head long into the problem that I obscured their role in it. I took on their anxieties and worked them harder. I said that the brain takes a long time to heal, but I pushed them to heal faster. I began to take ownership of recoveries that were not mine to own.
If they did well, I did well. If they had a hard day, I had a hard day. They were my barometer and I was theirs. In psychological terms this was a projection and some very poor boundaries as a new therapist.
This is a source of a lot of pain to discuss. When I open this vault and dust of the well worn transcript in my head, I feel exposed which is an improvement to the shame spiral I used to feel. Instead of being their guide, I took over and it hurt me deeply when they quit. This is not how it is supposed to work. I did not create healthy boundaries with my patient’s because I did not know how to. The only examples at my workplace of a therapeutic relationship were protective. The client was left at arms length and language was used to distance the rehab specialist from the “patient.” They were discharged as soon as possible to prevent forming any kind of relationship therapeutic or not. No one became attached to their patients and it felt as though nobody cared.
In truth, there were some therapists who should not have chosen a “people profession” and would have thrived in a lab or as a self righteous computer engineer or some kind of bureaucratic cog in the machine. However, I have witnessed other therapist: PTs, OTs, and SLPs who were exercising good therapeutic boundaries. In my altruistic naïveté I did not see them for what they were. I did not understand that they were exercising kindness and giving their clients a gift. Even if those survivors went home and sat on the couch, they had ownership of their story. They had a choice. They got to determine their success and their failures on their own.
Freedom of choice in recovery from brain injury is vital. Whether it is a well meaning therapist, wife, or child, when a survivor begins to shrink into the background of their story the ground for recovery becomes arid and dry. Choices create lush fertile ground for recovered thinking, habits, and resilient skills.
In answer to an unanswerable question, quit therapy when: you need to protect yourself from an overbearing therapist, you are not being challenged enough, you do not feel like you have a voice, or you feel as though you are better served working on your skills and can maintain skills by yourself.
Either way, this is your journey, so choose fully. Own the ugly and low with the high and beautiful. Whatever you choose you are the hero or heroine of your survivors journey and there is not one way forward, but many paths, several pauses, and occasionally the peace of knowing that you are here, despite everything you are here.
As e.e. cummings wrote, “for life’s not a paragraph--and death i think is no parenthesis.” In other words, mine to be exact, your life has been punctuated by the threat of death, but that is not your whole life, so live now--not in retrospect. Own your present story, choices, and actions.
