Deacon Patrick’s Log
Minimalist set up of three different positions I rotate through throughout the day.
We have set up my “Hobbit Hole” to be a sensory sanctuary for me. It is where I write, communicate with the world, do my ministry, and recover from the bombardments the world tosses at my wimpy brain.
In my experience, the more cushioned and coddled our situation, the longer my recovery takes. I used to have a cushy zero gravity chair and a complex set up to make that work with a computer. That’s gone. So are all the chairs, beds, and tables in our house (yes, our whole family find tremendous benefit in this!).
Here is the set-up, with four basic positions that humans have used comfortably for hours at a time throughout our history. They each promote different experiences and interactions with the work environment and I love swapping between them throughout the day, going to whatever feels right for what I’m doing.
More photos below, of each position in use. What set up do you use and how do you find it works for you?
Reading at the sitting nook in cross legged position.
Alternative sitting positon at the sitting nook.
Writing at the standing desk.
Writing at the kneeling desk.
A hospital stay is never recommended, especially for someone with a bludgeoned brain with no ability to filter out sensory input. For me artificial scents and mechanical sounds are like bombs going off inside my head.
I knew something was wrong and suspected appendicitis starting at 6am this past Friday morning. I waited to see if it got worse. It did. My wonderful wife called my doctor and got them to call the ER to let them know I had special needs and to please accommodate me in every way possible. This worked amazingly well. They did tests, rushed me into surgery, I spent the night, and came home early yesterday morning.
We actually chose the small, local hospital, hoping it would offer more personable care and less chaos. This appears to have been a wise move. With the exception of one nurse who bulldozed her way through her duties with me (I fired her after that), all the nurses were wonderful. Some of them didn’t work out because they were too scented. They simply left the room quietly and a new nurse was assigned to me. That couldn’t have been easy on them. My wife did a wonderful job of explaining my needs to the nurse assigned to me, with the basic concept of “move like you would around a wild animal you didn’t want to disturb” and “explain what you are about to do, even if it’s as simple as turning on a light”. It worked amazingly well.
I was allowed to wear both my earplugs and noise-canceling headphones the entire time, including in surgery (though I was “under”, I’ve no idea what effect the noises of a chaotic OR would have had, so I wore them just in case).
I was discharged after being in the hospital for less than 24 hours and while I have both brain and surgery recovery time ahead, I am amazed by how well I weathered the unexpected but life-saving stay in such a hostile environment. They made it the least hostile possible.
We all know how challenging it is to live with brain injury today. Imagine doing so 100,000 years ago in what is now Israel. The pre-teen who died at 12-13 years old had received a traumatic brain injury that “possibly result[ed] in personality changes, trouble controlling movements, and difficulty in social communication” (don’t we know it?!). After years of living (and presumably being cared for in whatever ways his brain injury required), they loved him so much at his death they gave him a ritual burial.
As a sardonic aside, how is it that these paleontologists know more about brain injury than so many medical doctors?
UPDATE: See update below for some good news!
Massive change in regulation as a result of Obamacare hit our nation on January first, 2014. Doctors are afraid, and they should be. So should their patients. I understand from a hospital board member that the penalty for a doctor’s first offense of not following the regulation is a $100,000 fine. Second offense is lose of their medical license. If that’s true (and I’ve every reason to believe it is), our government is giving doctors less benefit of the doubt than various criminals, who at least get a three-strike rule in their favor before the heavy consequences hit.
Some of the doctors I know are shifting out of the medical field because they can not see a way to be a doctor anymore. It would seem to be true.
I have been looking for a new doctor since I fired my doctor for failing to take my need for accommodation into consideration when requiring tests before he would sign my insurance papers (He saw me at Thanksgiving, had no substantive questions, there was a delay in him receiving and submitting my paperwork, and then January hit. I presume there was a review of his cases and some bureaucrat told him what care he needed to give me (a complete reevaluation of all my symptoms as though we didn’t have any tests or scans showing the cause of vertigo and cognitive issues, albeit 10 years old). Here’s the full story. I took 36 days to fully recover from attempting to fulfill one of his tests.
I still do not have my disability insurance paperwork signed by a doctor. I’ll be seeing my primary care doc today to hopefully address that issue while we (my wife, primarily, because of all the details), continues to find an MD doctor who understands brain injury and sees chronic brain injury patients.
So far, recommendations have turned up empty. Everyone recommends the doctor I fired, and he is the first and usually only doctor recommended in the Colorado Springs area. The head of rehabilitation recommended a doctor in Pueblo, but he specializes in sports injuries and getting athletes back out on the field, and will not see someone who is addressing the issues of chronic brain injury recovery. The head of rehabilitation’s only other advice? Fix things with your old doctor or perhaps a general practitioner is the way to go. Perhaps.
Doctors, doctors everywhere, but not a one to see.
The medical field is extremely broken. Yes insurance requires I be seen by an MD doctor who will certify to my ongoing disability. The real brain injury specialists are neuropsychologists (who are PhD’s, not MDs). MD’s do not often address brain injury, and when they do it is not chronic, long term recovery, but acute medial care they provide. Learn about the difference here.
Most doctors still practicing fail to understand the benefits of restoring God’s engineering, such as going barefoot, floor living, Ketogenic diet, exercise, and more. It’s not acute care and it does not make any sense to them. Yet the medical world has not been able to help me in any way except a diagnosis and filling out paperwork. That’s sad. I want a doctor who can help me with my long term recovery, who understands the rules of long term recovery are different from acute rehabilitation. But that doctor does not appear to exist.
Doctors, doctors everywhere, but not a one to see.
UPDATE: I just saw the GP I used to see and my wife sees. Wow. She knew what a ketogenic diet was and what some of the effects were. She understands chronic, long term recovery and brain injury. Her nurse deeply understands brain injury from personal experience with a family member. The fact that I sat on the floor with ear plugs and noise canceling headphones one phased no one. This great doc has agreed to see me and handle my insurance paperwork. Yes!
Since the onset of my brain injury, I have had cravings for intense flavors. I think I may have finally figured out why. Things like cacao (chocolate), ceylon cinnamon, vanilla beans, coffee, and others have what are called flavonoids. Flavonoids trigger various effects in the brain that change neurotransmitters, among other things.
Yesterday, for the first time, I tried a stick of ceylon cinnamon. Ceylon cinnamon is known as the “real cinnamon” and is sweeter, more subtle, and has almost none of the stuff that harms your liver compared to what most of us are used to buying in the grocery store (which is not cinnamon, but a close cousin in the cinnamon family).
I’ve still been clawing my way out of the adrenaline pit from my doctor’s visit over three weeks ago. Immediately after starting to work on this stick of cinnamon (it is crumbly and easy to break off and chew, unlike it’s poser cousin) my head felt cleared and less mired in a swamp. But I didn’t have the racing heart and other stimulant effects I get from caffeine or from the poser cinnamon stick I tried on a different day.
Then, this morning, sitting up in bed with our one-year-old, something happened that hasn’t happened since my brain injury. Usually I watch her with focused fascination as she crawls to a toy, crawls to me, then unexpectedly (to me only) flings it toward me suddenly. The sudden motion overloads my brain and I need time to recover. Not this morning. This morning I saw it coming. First time ever since the brain injury in 2002. More eating of ceylon cinnamon sticks is needed, but it seems a very strong candidate for the reason I saw this coming. I wonder what else is in store?
In addition to eating the sticks, I plan on making my own chi tea with vanilla beans, cloves, chocolate, ceylon cinnamon, and possibly others. We also use a lot of tumeric and cumin in our cooking, which help stimulate and heal the brain.
If you try the cinnamon and/or chi, I highly recommend getting organic spices. So many of the pesticides used are neuro-inhibitors, and we don’t need any help in neuro inhibiting. Sardonic grin.
May God startle you with joy!
Here I am in the reading nook, aka a sitting cushion that folds up for when I’m on the computer at the kneeling desk.
Living with brain injury includes having a brain that is easily short circuited by loud sounds, bright flickering lights, scents and any other sensory input. Thus, the concept of a sanctuary, which I call my hobbit hole.
I was blessed to receive from Catholic Charities and GE Johnson Construction the gift of new windows and increased sound proofing in the walls (a friend took several years arranging it). The result is beautiful. I am going to keep things very simple.
At this end is my desk (I kneel on a kneeler) and the floor couch (think thin sitting pad) for visiting with my family in the quietest room in the house. The other end houses my cloths and is my walk in closet and reserve bedroom for when the town is too loud and I need somewhere quieter to sleep. Not bad for 200 square feet.
One of the therapies that is very effective at restoring God’s Engineering and helping me both function and heal as much as possible is floor living. Our whole family sits, eats, plays, sleeps on the floor. This keeps the body’s core very strong, keeps us shifting positions every 20-40 minutes, and keeps us feeling lithe and limber all the time. Our bodies did not evolve to be in chairs or cushie beds. Quite simply we feel far better all the time because we live on the floor. I never need to stretch before running or biking, I just go. It also uses space much more efficiently.
The earphones are Bose noise canceling headphones. The mechanical rumble still comes through the walls and windows a wee bit (there is a fan on the restaurant across the creek that runs 24/7 that none but me can hear, and it puts out sound that carries through most things — the longer the waves the harder they are to stop). So unless I am talking with the family, my earphones are on.
The windows and walls now stop the infra noise that was finding its way into my hobbit hole, and that is perhaps the biggest gain. I have been able to write and think far more in the week I’ve been in the new hobbit hole than in the months before (at least until the doctor’s office debacle). We’ll see what the noisier spring and summer bring!
Here I am at the kneeling desk on the computer. The desk is two night stands connected by a board in the middle, which happens to be the right height for kneeling.
Here I am in a wider shot, and you can see the small couch area in front of me, where is works to meet with family in a quiet room. Before I couldn’t have many conversations with my family until the town quieted down in the evening (if it did, in summer it stays pretty loud (for me)).
“Are your eyes covered? I need a drink.”
This is what my wife asked me last night as I was in bed. It seems absurd. Yet with brain injury it makes perfect sense, and it well illustrates what families with a brain injured person do all the time to accommodate their brain injured member.
I’ll break it down for understanding. If light changes suddenly, unexpectedly, my brain short circuits. I’m done. In that instant, I no longer have the brain energy to ignore the constant vertigo. I instantly need help to walk or I have to slump to the floor. Thus, before anyone turns a light on or off, regardless of where I am in the house, they announce it, give time so I can cover my eyes, and then turn it on. This has become normal for us.
“Are your eyes covered? I need a drink” was my wife’s shorthand for “I’m turning on the kitchen light and getting water, watch your eyes.” Just part of normal life with brain injury that most folks never see or understand. After all, a light going on or off makes no difference to them.
We are Catholic and embrace life with wild abandon. I don’t mean just that we strive to find the gift and joy in every moment despite the challenges we face from my brain injury and disability, among other things. We absolutely do that. I also mean that we do not use birth control or family planning of any kind, trusting to God’s wild abundance and life.
This openness to life baffles many who interact with us, including some family, friends, and possibly my doctor. My doctor was stunned to learn that I’d had more children. I can’t help but wonder if that didn’t somehow unconsciously effect his choice to stop believing me and stop talking with me and working with me on my treatment plan. I am disabled and should not have more children and thus be more of a burden on the system. Never mind that is God’s concern, not his or anyone else’s. Never mind that I am not receiving more from the “system” because we have more children.
There is a constant attack against the family and against life in today’s society. It takes many subtle, devious, undermining forms. This judgement for having children despite my disability is among them. Whether my doctor fell for it or not, it is something we have experienced painfully first hand.
Pray for our families, especially those struggling with disability in any form, that they may have the faith, trust, and courage to embrace life with wild abandon!
The medical system to all people claiming brain injury:
“Brain Injured? You’re faking it until proven otherwise. Even then, if we see something we don’t understand about you, you’re back to faking it. We won’t ask you about it. We will simply order a barrage of invasive tests after your disability paperwork is past due, all asking if you have brain injury and what the source of your symptoms is. As though you have no diagnosis, no scan results or test results showing objective proof you have brain injury.”
This is the presumption of guilt I have consistently experienced since 2002 when I received my most recent of over 8 concussions. I naively thought having brain scans showing my brain is essentially missing the function of key areas, blacked out because they only get enough blood to live, not function, would eliminate this. But here I am, 12 years later having to once again prove from ground zero that I have significant loss of capacity due to brain injury.
I fired my doctor today because he treated me in precisely the manner described above.
When I tried to talk with my doctor, he turned dictatorial on me. When I turned to the head chaplain at the hospital I received this response following our one conversation and his promise to talk with my doctor to learn what he could and get back with me (I never heard from him except for the following response two weeks later):
“I did what I could do. And I wish you success in your pursuits. I would be less than honest if I did not say that I find you isolating yourself from those who might want to help you out by your personal attacks on physicians and the system.”
So it is isolating myself to request actual medical care that does no harm? And this is being treated well compared to how so many with brain injury are treated.
Pray for all brain injured, their caregivers, and for the softening of the hearts of those who provide medical and pastoral care to those whom they do not understand.
So we know, and our doctors know, we hold them to a high standard of care, expect them to treat us as chronically injured in need of long term care than does not harm us and that we are not faking or exaggerating what our brain injury does to us any more than someone with quadriplegia does their disability, I propose we begin having the doctors we see sign this Brain Injury Patients’ Bill of Rights and if they do not that we go to doctors who will.
Thoughts? Suggestions? Ideas for changes (what should be added, removed, etc.?)?
Brain Injury Patients’ Bill of Rights
We the brain injured name, assert, and require rights which by common decency ought not require statement or demand but which the current state of common medical practice requires.
We have a right to be the primary person in charge of our care (or our caregiver if they are our legal guardian), to make the decisions regarding what testing is best, if any, and under what circumstances that testing will occur so that it will not cause us harm.
Every brain injury is different. You may have seen one or ten thousand people with brain injury before you see me, but not one of them has my brain injury. Do many of us have many things in common? Absolutely. But the brain is the most complex organ in our body, controlling everything about us, so any combination of things can be scrambled. Do not make assumptions about my brain injury or its effects or my capacity. Ask me or my caregiver. We can answer whatever questions you have. You are a partner in our care, not a dictator or judge.
Brain injury is physical harm done to organic matter in our brain. We have a right to be trusted regarding our experiences and challenges and successes and needs and symptoms rather than to be presumed to be faking or exaggerating, or treated as if our issue is psychological. We have unseen physical damage. Because of this, things unseen or not realized by you can deeply harm us. This is not psychological, but use responding to protect ourselves against real harm that we really pay a price for. Respect and trust that. For example, you may not even hear the HVAC system that is pulsating and exploding in our brains. So what? We do and it has a torturous effect on us.
Once brain injury is established by means of objective testing or scans, we are to never again be treated as if no one knows the source of our symptoms. We are to receive accommodation so we have access to medical treatment without needing to recover for days from the overwhelming of our brain by stimulus others may not notice or other issues specific to our brain injury.
We require your inquiry toward understanding and patience along that journey rather than judgement at what seems odd, out of place, objectionable or otherwise wrong in your perception. Just as blind people may cross a cluttered room in the complete dark while a seeing person would stumble, so can people with brain injury who have learned to adapt do amazing things. Rather than question the brain injured person’s integrity, be amazed at their resourcefulness, ingenuity, and inquire by what mechanism they have made progress to perhaps others can as well, in the same way you would admire the blind person who has learned to navigate their world.
This document is not legally binding. It is, however, morally binding. By signing it, you the doctor I hope to see, agree morally with the above rights. This is not about liability, it is about with is right. If you can not sign it for any reason, please tell me and I’ll be on my way. If you choose to sign it, thank you, and I look forward to working with you for the best care possible for my brain injury.
Signed by Doctor:______________________________
This Brain Injury Patients’ Bill of Rights is created by Patrick Jones of www.MindYourHeadCoop.org and may be freely distributed.