Trauma hits: the heads side of your coin is now tails, whether you are the victim or the care giver. Who are you now; what to do now?  This collection of tips is NOT medical advice. For that you go to your neurologists, physicians, and therapists. Rather, here is a description of things that TBI and Post-Lyme survivors have found useful. Some are from my personal experience and many have been gathered from the Facebook closed groups for survivors and care givers.  We hope you find some of these helpful.

                                                               

I'll first share some general thoughts about the rehab experience, followed by specific tips.

Once when I went to rehab I said to the receptionist "You must love your job, watching all of us with our assistive devices and our clothing held together by Velcro as we slowly get our lives back on track." She replied, "Sadly, maybe half get discouraged and just give up." What a tragedy that is, but I understand. 

I sometimes wished I were being treated by a good veterinarian rather than undergoing the long, detailed and tiring interrogations by the neurologists. I like to think that if one is using my fusion surimono collections for healing, there is a bit of veterinary wisdom in them. Consider dog obedience training: “Oh, good doggie. I do not know how you did it, but that was just right. Here is a doggie biscuit.” And when you want your donkey to make progress, you hold a carrot out in front and you keep moving the carrot farther and farther after each success.    

Neurologists now know that our brains are remarkably plastic. If you are caring for someone who has been challenged, do encourage them to keep working and patiently watch what's possible. Eventually I could make art and write and I even learned how to make this web site myself so I could share with you all. Yes, it is challenging to deal with many changes all at once, but know that whether it comes all at once or little by little, change will surely keep on changing! May these collections bring you comfort and perseverance.                                                                                        

                                                                                         - Marnie

This Songs of Seeing web page is designed to be Inclusive and Safe. The images are primarily nature-based and the words have an element of poetry about them. The subjects rarely show age, gender, or race. You can picture yourself enjoying the scene no matter who you are. The increasing complexity means you can find some you can enjoy. All the surimono have some degree of story to coax you to contemplate.

 

Since mental issues are invisible, they are commonly misunderstood, but they are nothing to be ashamed of. I call the holes in my memory tasks just Memory Lace. It can be very difficult for caregivers to understand that you might be in your own familiar territory and feel lost. How frustrating that one can program a smartphone to call for help but the person forgets what a phone is for. Remember Polaroid cameras? How slowly the image developed? Our brains can react that way and we would be wise not to get in the way with a lot of negative static - think fear, anger, shame, age stereotypes etc.

 

So here's one more veterinarian metaphor: don’t beat the doggie when you are not getting the action you wish. That does not really accomplish training, but leads to aversion, shutting down, negative reactions. Remember, it is also worth praising yourself when things go well. More of that please, Brain.

Marnie's Rehab Tips

Balance Issues

When we have issues compromising our vestibular systems, we discover how unpleasant that can be. A pair of trekking poles may give you better support than a cane. You get more sensory information and the pair of poles may catch you better if you start to fall.

 

To give your brain more information about which way is UP, check things you know are verticals such as picture frames, wall corners, etc before you try heading down stairs. Touch walls or railings or your helpers with your elbow or finger tips. Accept a hand but explain that you do not need actual support, just more tactile information.

An on line search for Epley maneuver instructions or videos might be very helpful.

 

Fatigue

You might try 20 minute “naplets”. Perhaps you do not need sleep, just the refreshing that can come from meditating. You can allow yourself to fall asleep or not. You can set an alarm or train yourself to know when 20 minutes has passed.Ten or twenty minutes of “down time” in morning and afternoon can be remarkably refreshing but that is not something we are accustomed to doing!

Fatigue may not actually be a feeling in your body but a sensation of neurofatigue in your brain.

For more about mediation and sleep techniques see

https://www.health.harvard.edu/blog/mindfulness-meditation-helps-fight-insomnia-improves-sleep-201502187726

 

You  might also download the PDF of my book Island Meditation from the download page. 

Aphasia

Often we have trouble retrieving a word or the meaning of someone else’s words. I had a dream that clearly told me I was inventing a new kind of haiku-like three line poem. In the first line I was to say aloud something I could. The example that came to me back then was “I mean that woman who used her whole name before that became popular.” Second line:” You know, she was married to a man who became governor or Arkansas and then President.” Line three:” Yes, Hillary Rodham Clinton.” My family thought people would l think I was very strange but no one ever commented and 100% of the time I was successful in retrieving the words I wanted. I learned later that it is important to say the lines out loud. Have you noticed that we seem to file names and words phonetically? Apparently we store the things we hear in a different place from where we store what we read or see or think.

Memory Issues 

Writing lists and using Post-It notes have no doubt occurred to you.  These days using Alexa or Google Home to set reminders is another option. However you help yourself, remembering to be patient and allowing the memory slowly to develop or be retrieved is a good idea. It won't help to fill your mind with the static of recriminations and impatience. 

 

People often comment that they cannot recall the exact instant when they were injured. While this might be valuable for insurance issues, it might be wise to recognize that your brain is protecting you. Healing is a forward looking action; not a backward process.  

Refueling

You may think you need to refuel your body with a snack. Try feeding this hunger not with caffeine or alcohol but get a lift from fruit juices or smoothies. Your gut biota will thank you for yogurt, especially homemade.  (Cultures for Health is a good source for renewable cultures.) Set portion sizes and eat just that whether or not you want it and stop whether or not you want to. For a time I had considerable difficulty chewing and swallowing. I set the table with a tiny figure to remind me that I would surely be successful if I took things slowly and thoughtfully.

Overstimulating Situations

The ear plugs that band players wear when performing can lower troublesome sound levels while still allowing you to hear conversations and enjoy music. They are available on line and suitable ones do not cost more than around $20. The ones that include a case and a cord that links the ear plugs are most helpful.  Don’t underestimate the distraction of light at night, the lights of appliances in the bedroom or even the dawning of day. Silk eye masks may be great help as light block, a comfort and a signal to relax that your brain comes to recognize. And you do keep your sunglasses handy, don't you? 

I found it helpful to realize that I had a limited tolerance for stimulation. I recognized a sort of point system, a limited diet of emotional calories so to speak.  When I neared my limit I had to figure how to take time out. I explained to my caregiver and those close to me that I had used up my points temporarily. This explanation satisfied everyone and caused no recriminations.

 

Body Temperature Regulation

It is not uncommon to find that your body’s temperature regulation is off. Surprisingly enough when you find yourself dealing with these hot flashes or night sweats, you can

sometimes deal with them by fighting fire with fire in a manner of speaking.  It may seem counter-intuitive but picture your body core as furnace firebox and turn up the flames. I think of that as hollering at my hypothalamus. Once I get the attention of this regulator, my hot sensations calm down in a matter of minutes. (I discovered that back in my menopausal days!) Inexpensive fleece throws and silk underwear can also be a great help in keeping you comfortable.  

Overreacting

When you are hostage to wildly fluctuating reactions your emotions are described as labile. When you find something funny you almost pee your pants. Sad, and you may start weeping.  And the real challenge, anger. Here is a perhaps helpful metaphor: Your pattern recognition system is down so tell your weepy, hysterical or furious self, “That’s not my bus,” and "I'm not going there". The train may have already left the station with you on it but you can ring the emergency cord. Stop. You want to get off.  How to do that? Feel your breath moving in and out of your nostrils. It is impressive how effectively you can teach yourself calming routines.

It may also be useful to think about what Hospice training calls the Target Zone. You cannot fight death so you strike out at anybody near you, in the target zone. Sadly, that is often the best doctor or nurse, or the most loyal family member. This is very hurtful so these good people need to know not to take that lashing out personally. The frustrated person faced with the unsolvable crisis might also want to take a look at what they are unintentionally doing to others around them. 

 

Likewise, anger that cannot be directed at the brain injury itself might be directed at those in the Target Zone.  

It may be helpful to think of your past as just inner layers of your Golden Onion skin. You are not denying a part of yourself, not erasing your history, just making it irrelevant. Your present faces the future.  All your good rehab work forms new golden layers.

 

Olfactory Issues

If the olfactory nerves passing through the bony plate at the base of the skull are damaged, one may lose the sense of smell, a condition known as anosmia. A condition that might be described as phantom odor, is called dysosmia.  In my case dysosmia triggered diabolically awful smell sensations with every inhalation.  Eventually I devised a meditation to deal with the dysosmia phenomenon. Figuring that if my brain was causing it by coping in a dysfunctional way, my brain could solve the dilemma by retraining itself. I went outside and said to myself “Eyes, this blue sky is what air which does not stink looks like. Ears, the sound of nearby waves is what clean air sounds like. Skin, you are my largest organ and you know that this is what non-smelly air feels like. Oh, nose, thank you but I do not need a report from you; I have enough data." Within a little over a month the dysosmia disappeared. My sense of smell has not returned but I take especial pleasure in what celery and other foods sound like when I chew. I am aware of many tastes and flavors. Interestingly enough, cinnamon would taste like floor sweepings if it was not carried by butter. Taste is much more complicated that the simple flavor map of the tongue that we were taught in high school biology.      

 

Dealing with Many Medicines

 I have about a dozen prescription meds to take. I keep the vials in a shoe box-like container. I may write additional directions on the labels. Each morning when I have the container in front of me, I take out all the vials, line them up, and one by one take my medicines. If I am interrupted by a phone call or other distraction, the vials of the meds I have not are still out of the box. Of course I could use the weekly pill boxes with labeled compartments but I prefer looking at each label. Also, in case of an emergency, EMTs may take whole box to the hospital, I find I do not need to worry when the prescription pills come in another shape or color- I have the reassuring label on the vial.

 

Changing Recognition of the Brain’s  Plasticity

Back when I had my head injury, the doctors told me that in a year we would know what was broken and a second year would reveal what was fixable.  Fortunately I never accepted that limit.

Diann Roffe, Olympic Super G Gold medalist, once told me that most world class skiers have had injury and rehabilitation in their past. After the discipline of that they get really good.  I am now 80 years old and I no longer ski downhill, limiting myself to a rather shuffling, flat-land  cross country skiing. But look out world, I am not finished asking my own brain to help me.

I was fortunate that I was familiar with Japanese Zen artists who painted elegant roosters after meditating, long after observing the actual bird.  Alan Watts and D.T. Suzuki had brought meditation to the USA during my youth.  Using my brain to banish dysosmia probably saved my life. My husband had been warned to watch me closely because people plagued with the horror that is dysosmia sometimes committed suicide. I was also fortunate to be able to join a group visiting traditional hospitals in China. Far Easterners are much more familiar with the idea of using the brain to change itself. (I surveyed various meditation techniques around the world and produced a small book called Island Meditation which was used quite successfully when I taught meditation in Adult Education here on Deer Isle. See Downloads for the free PDF.)

Neuroscientist Antonio Damasio describes the importance of the personal envelope of emotions in which we each wrap our reactions. Everyone has an individual history of these. I used to refer to my awareness of this as 'consulting Dr. Brain', metaphor for the ideas I developed in the many neurologist interviews I sat through. Beyond what fancy imaging machines and tests could determine, my own brain had to be consulted.  I am assured by brain- injured patients of today that that is still the case. 

May you find some helpful ideas here and fashion them according to what your own Dr Brain prescribes. Look out world; here you come!