People with brain injury who are highly sensitive to sensory stimulation (light, sound, touch, scent, etc.) face a horrible dilemma: be seen/tested by a doctor in an office/hospital that may very well harm them, or ask for accommodation to be seen, be scoffed at, refused, and turned away from medical care.
I know this from personal experience as well as from the experiences of the hundreds of brain injured people I have supported through email support ministry and this website. I will share my personal story here, but suffice to say the far too common response from doctors is both ignorance of brain injury and it’s realities and arrogance in denying service.
As a Catholic deacon, I used to attempt to serve at Mass at least once a year. I often took 3–4 days to recover after due to the scents and sounds (heater and air conditioning units in public building typically pulse horribly, blowing up in my brain). At one Mass, the priest forgot I could not have singing. Rather than kick in my adrenaline, I shut down. He did not notice and did nothing, but continue Mass. My wife wasn’t sure what to do (she knows now to just walk up and get me). So I stayed limp next to the altar throughout Mass. I needed months of recovery, and ever since, I have been far more sensitive to stimulation than even I was before. I have not tried to serve at Mass since.
For reasons I’ve yet to ferret out, my doctor, who specializes in brain injury, is requiring (before signing past-due insurance papers) that I see a neuropsych for 8 hours of testing and an ENT (ear, nose, throat) specializing in vertigo to determine if my vertigo is caused by ear or neurological issues and what therapies might be helpful or new. Sounds good on the surface, right? It seems reasonable to have current, objective data. But there are a number of problems:
Today was my ENT appointment. This is what we brain injured so very commonly experience seeing doctors and how we are responded to.
My wife worked with them to find the quietest exam room while I waited in the car. She walked with her hand on my back (which helps me mitigate the vertigo in challenging environs) to get me through the foyer and waiting room to the exam room. Still amazingly loud and pulsing HVAC, that I could feel on my skin as it pulsed, blowing up in my head. But quieter than what I’d just been through.
Wait a few minutes, and they take me through highly scented hallways with various and changing pulsing HVAC fun to get my hearing tested. The “sound” room also had a pulsing HVAC opening, so was far from quiet to me. The earphones I am supposed to hear sound through creaked and popped on their own on my head, and even more so when the wires attached to them moved. Sounds and speaking at various volumes through just one ear or the other happen — all challenging on my brain, while trying to listen to the beeps over or under the HVAC, popping and crackling of the room and earphones. The doctor later told me that room is quiet (no, it is not) and that I show low frequency healing loss. I doubt it. I think the more likely cause of me missing hearing those sounds is my brain injury and being unable to filter out background noise that the ignorant, arrogant doctor thinks does not exist.
My adrenaline kicked in heading back to the exam room when someone suddenly and urgently steered me a different direction because I went into a wrong room. That was it. I was done. Adrenaline and friends kicked in and I burst out of there in a rage, like swearing up a storm (welcome to TBI rage!). All before seeing a doctor.
My wife helped me to the car, then went back to see the doctor and explain things and ask for accommodation so I could be seen. She put me on a speaker phone call with the doctor. We explained my needs and he said he could see in his offices there. I said I was asking for accommodation, so I could be seen despite my disability, that I was like someone in a wheelchair asking for a ramp. “Absolutely not the same at all,” and refused to explain why it was different when asked. He said he would not take me as a patient (whew! I don’t want a doctor so ignorant and arrogant as that) but would provide referrals so I could be seen elsewhere.
I replied “Going from torture chamber to torture chamber to see which is less torturous does not seem the best way to go about this.”
His response? “This is NOT torturous!” When I called him on it, asking him if he had brain injury, he dug in his heels even more, interrupting every attempt I made (calmly, according to my wife) to ask questions (that apparently were threatening to him). The doctor was the one hot headed and not allowing me to finish my sentences or thoughts and just kept loudly repeating “This is a quiet office! Those things are not torture!” (update, I just learned from my wife that she was escorted out of the office at the conclusion of that call. My wife, the very picture of decorum and grace, holding a baby in her arms. This is a system unable to treat people with due human dignity.)
This is not a system capable of understanding, let alone helping heal, many of the brain injuries people have. Until doctors learn what it is to listen to a patient, be compassionate, and put the patient first, treatment for brain injury will remain tortuous and possibly even harmful. This is a sad and sinful state for our medical community.
I am done paying the price for seeing doctors without the doctors knowing. I no longer accept that I must be tortured to be seen. I require accommodation to be seen by the medical system and I will leave any situation that is overwhelming to me, just as I do anywhere else.
If you have an acute medical issue, bones sticking out for example, our medical system is brilliant and providing the care you need. However, if you have a chronic, long term medical issue, such as brain injury, our medical system is no only inept but often harmful and incapable of recognizing either, blaming you instead. Let me explain…
When I first found my current main doctor (a rehab doctor familiar with brain injury), I was excited. First, he believed me (so many doctors despite brain scans clearly showing the damage to my brain, did not). I eagerly tried his recommended drugs. They wholloped me and I learned that at least my brain is too sensitive to the effects of drugs to find them helpful rather than harmful.
Drugs. That was it. That was his arsenal against brain injury. My disability insurance company required me to see him less as the permanency of my disability was clear, so I ended up usually seeing him for 3–5 minutes a year. I would excitedly tell him whatever I was doing that was helping (going barefoot, diet changes, creating a sanctuary, etc.). He always seemed surprised when I’d mention the HVAC system being hard on me.
Did he inquire to learn more about how what I was doing might help others with brain injury? No. Was he interested in learning why these things helped me? No. Here I was, discovering foundational things that help brain injury (I believe most of them help chronic issues in general universally, including brain injury), and he has yet to see it as anything other than the weird things I do that help me and me alone. Seriously?
What happened to the eager medical doctor who yearned to know more about how the human body actually works and in the face of a wall of inability to offer anything helpful sought to learn more about God’s natural law and how to help people? Fiction, perhaps? So rare, it is more rare than my neurological vertigo, which is less than 1% of vertigo, and no one I’ve ever met understands it.
What helps me? Foundational things. Things that help my body help itself. Longterm, slow working, persistent, diligent things that nurture and promote recovery and capacity. Rather than run headlong into the wall of what I can’t do, I focus on what I can do, figuring that in doing those things far more often and paying minimal price for doing them, I will end up pushing the envelope in other ways, and slowly build neural connections. My therapy is what I eat (high fat, low carb. See “Grain Brain”). My therapy is running through the forest for a long time, activating my body’s natural healing mechanisms inherent to endurance activity, which includes natural levels of the same things found in illegal drugs (in a dose and form I know my body can handle and won’t harm my brain). My therapy is popping out from my Hobbit Hole sanctuary to play with my children for the 5 minutes that I can. When the problem is acute, the best therapy is head on. However, when the issues are chronic, the best therapy is focusing on what can be done, being sustainable, nurturing, healing and recovering. That’s how we recover long term.
Yes, it is incredibly odd that I can run for hours without food or water on the slopes of Pikes Peak but could not walk unassisted out a doctors office after being there for 30 minutes yesterday. Yes, to many ignorant folks, many doctors included, I no doubt seem uncooperative because I refuse to be in an environment harmful to me, though they do not even hear or see the things that are harming me.
The medical system is precisely the system you want to be in when you have bones protruding, or a heart stopped, or a blood clot in the brain. These people are amazing at handling trauma. If your issue is acute, these are your folks. You want them on your team.
Unfortunately, the same traits that make the people and system so excellent at acute issues are the same traits that make them inept at handling chronic ones. There is no equation for which drugs work because none of them actually are helpful, and science is showing more and more that they are likely harmful in many cases (see statins for heart care). They can’t even get basic nutrition right, believing a low fat, high carb diet is healthy. No, the anti-nutrients and lack of healthy fat is causing the epidemics we experience now. Cholesterol? Healthy. We need it. And lack of cholesterol is causal in metal deterioration such as alzheimer’s, MS, and others.
In being excellent at focusing on the broken needles and branches of the forest in their acute care, they miss the tree, let alone the forest.
Brain injury is a chronic, long term, life term recovery. Acute answers from acutely trained people are not answers at all. They diagnosed me, and they sign my disability paperwork (at least they have, we’ll see). But none of the things that have helped me have come from the medical community. And many of the things that have harmed me have.