Things to know if you’re a friend/lover of someone with a TBI

Yes. This. Doesn’t matter what kind of relationship, whether acquaintanceship, friendship or romantic. Every point is valid and accurate. Just ask me how I know….

“Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few things you might find yourself saying that are not helpful:

1. You seem fine to me.

The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

2. Maybe you’re just not trying hard enough (you’re lazy).

Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy.Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!

Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety,chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to deal with someone who is grumpy, moody, or angry all the time. [It’s also incredibly hard to BE that person, and to KNOW it’s happening and be unable to stop it.THAT’S the worst part.] Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?

It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

7. Let me do that for you.

Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.

That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.”

  • No author listed, or I would happily give attribution.

Oh, PLEASE poison me with your perfume!

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I went to Family and Children’s services to do some medical stuff, and was meeting with a woman who knows all the issues, including the multiple chemical sensitivity to fragrance. (Anything with fragrance and/or other strong chemicals, like turpentine, bleach, etc)  in it causes an allergic and toxic reaction – coughing, sneezing, burning eyes, difficulty breathing (allergic); and mental confusion, severe migraine, nausea and finally, nonstop vomiting. Fragrance is literally poison to me. It can take anywhere fr4om a minimum of 6 hours up to 72 hours for the symptoms to subside. It only takes a molecule to trigger, and it doesn’t matter how much you spent on the stuff. Same toxic chemicals in all of it.
So I am to meet with this woman, who knows all of this, and with whom I have already had discussions about the stuff in her office. So she takes me back, and I get a whiff of her – covered in scent. Lotion, perfume, shampoo, conditioner, fabric softener, cologne, aftershave – all have the fixatives to make the scent last, which are the same petrochemicals and toxins and carcinogens found in secondhand smoke, fyi. I enter her office, and take the chair furthest from her. She makes me move to the closer chair, “feeling uncomfortable with people so far away.” I bit my tongue, and explained I had to take the furthest chair due to her fragrance and my condition regarding same. (SO sorry I made YOU feel uncomfortable as YOU were POISONING me. So teddibly sorry.)
Adding poison to insult and injury, she had several plug-in air fresheners going – and those REALLY ARE poison to me. I was already developing the headache warning of impending migraine, and this is in the first 30 seconds.
So, she decides to move the chair to the other side of her desk, by the door. By then, too late, plus it didn’t help – the room stank to high heaven. I was even facing the hall, as she fiddle-faddled with paperwork, mindlessly chatting away. As the migraine developed and headed straight into nausea and I was sitting there turning green, I finally said “I cannot be in this room any longer, I am about to hurl.” And got up, she followed me outside, where I told her point blank “I am going to have to see someone who is not using plug-ins and wearing a ton of perfume. I am not going to put myself through this.” and she went to see if anyone not stinking to the heavens was available. Nope. So she said she’d reschedule and turn everything off and try not to wear anything. (Problem being the stuff accumulates on surfaces, and even if that office is clean, air vents will carry the stuff in from other offices. Been there, experienced that. So, if – as she said – everyone on the floor is using those damned devices, it’s a no go. Meet me outside. No reason for me to torture myself at this point.
It really did piss me off, given she knew. If she didn’t I wouldn’t have a problem. But she apparently didn’t believe me, or didn’t think it was as severe as I said. And once you KNOW about it, to do that which you know causes harm is BEYOND insult. In this case, where things now stand, it’s freakin’ attempted homicide. It’s happened time and again, and I’ve even had people, thinking I was making a joke, spray me with the stuff.
And it really pisses me off when people tell me “You need to get out more.” YOU THINK I LIKE BEING A FREAKIN’ PRISONER IN MY APARTMENT? I assure you, that is not so, and I would LOVE to “get a life,” which I’ve also been told. I used to have one. But as you can imagine, this condition has caused me to drop most of the activities that comprised my life – theatre, going to concerts, festivals, dinners, parties, ballet, plays, bookstores, even restaurants, and at times, grocery shopping. You’ve no idea just how many fools I’ve had to suffer gladly over this issue, especially in the workplace.
The illness is cumulative. Every exposure incident makes it incrementally worse, bring on more severe symptoms faster. It used to take hours before the headache became migraine, or nausea hit. Now, as in today’s case, it’s almost instantaneous. I wasn’t in her office more than ten minutes. That was at 12:25pm. And here I sit, full migraine still, and at least the nausea is finally subsiding. It’s 4:17pm. Thanks so much, Tonya. Appreciate it. Yes, when people poison me – when they KNOW the situation, it tends to piss me the fk off.

By the way, if you get a headache around fragrance or other chemicals, that’s the beginning stages of MCS.

More info on MCS:

What is Multiple Chemical Sensitivity?
Multiple Chemical Sensitivity (MCS) is a medical condition characterized by a heightened sensitivity to chemicals. People who have MCS become ill when exposed to a variety of chemicals, many of which are commonly encountered in everyday life. Some people have only mild chemical sensitivities, while others have a more severe form of the illness called MCS. Substances that frequently cause symptoms in chemically sensitive people include pesticides, perfume/cologne and other scented products, fresh paint, new carpets, many building materials, solvents, fresh ink, smoke, vehicle exhaust, industrial fumes, and many cleaning products. Other scented products include air “fresheners,” fragrance-emitting devices, fabric softener, potpourri, incense, essential oils, and most soaps, shampoos, hair products, skin lotions, and laundry detergents. Symptoms can occur after inhaling, touching, or ingesting these or other substances. Reactions to scented products can occur even in people who cannot smell them. Because people with MCS react to chemicals at levels that ordinarily do not affect others, chemical sensitivity is similar to an allergy, but the symptoms and mechanism are not the same as those of traditional allergies to pollen, animals, and dust. Many of the above substances can make anyone sick at high concentrations, but chemically sensitive people can be harmed by exposures to even minute amounts. While some of the symptoms reported by people with MCS are similar to known toxic reactions (such as those listed on Material Safety Data Sheets), they can occur at exposure levels considered safe for the general population. Additionally, many chemically sensitive people experience symptoms that are vastly different from typical toxic reactions. This individual variability and exquisite sensitivity can be so pronounced many scientists and doctors find it hard to accept as real. It should be noted that the full range of toxicity of most chemicals is not known. Of the more than 80,000 commercial chemicals in use today, only a small fraction have been adequately studied. In addition, little is known about the cumulative effects of chemical exposures and the effects of being exposed to more than one chemical at a time. Despite this lack of information, workers and the public are often falsely reassured of the safety of chemical exposures. People with MCS, the proverbial canaries in the mine, appear to be early victims of “better living through chemistry.” Exposures to pesticides and solvents are most implicated in causing MCS. The types of substances that typically trigger symptoms in people with MCS are synthetic chemicals, such as those found in pesticides, plastics, and fragrances (most are manufactured from petrochemicals) and petrochemicals themselves, such as fuels and solvents extracted from crude oil or coal tar. Exposures to low levels of gases like nitrogen dioxide, carbon monoxide, and hydrogen sulfide (common components of outdoor air pollution) can also be problematic for people with MCS, as is exposure to chlorine and combustion products. Lead, mercury, and other heavy metals can contribute to the development or aggravation of MCS as well. MCS frequently involves imbalances in a person’s nervous, immune, and endocrine (hormonal) systems, as well as impaired detoxification abilities. Food intolerance is common and may be so severe that a person’s diet is limited to only a few foods. Medication intolerance is also common. A person with MCS may react to mold, pollen, animals, and dust, although the symptoms may be different from those of traditional allergies. Brain reactions, characterized by difficulty in thinking or speaking, are also common. People with MCS may also react to naturally-occurring chemicals like skunk musk, flower essences, and tree sap. In addition, some people with MCS are sensitive to electromagnetic fields. They can be made sick by exposures to cell phones and towers, computers wireless telephones and utility meters, other wireless devices, fluorescent lights (including CFLs), microwave ovens, other electrical appliances, battery re-chargers, dimmer switches, and security and scanning equipment. It is not uncommon for people with MCS to also have chronic fatigue syndrome (CFS) and fibromyalgia. It is not yet known whether these are separate diseases or whether they represent different manifestations of a common underlying problem.

Open Heart, Clear Mind

I kind of fell into the whole Buddhist thing. In 2003, I was a mess, in midlife crisis mode and very easily frustrated and angered by the slightest things. in short, not particularly pleasant to be around. It had finally dawned on me that I was kind of a bear, and I was intent on apologizing to my then partner – i wasn’t abusive, but i sure carried a storm cloud around, with full on thunder and lighting. Like I said, not pleasant. I was looking forward to apologizing and sharing my realization and discussing how to make some changes, but when i got home – no partner. just a hole in the closet where his stuff should be. My sister had been recommending this book for a couple weeks, telling me i really needed to read it. I put it off, thinking she was a little nuts – in my family, we didn’t discuss spirituality at all, much less Buddhism. I was kind of surprised at her recommendation, to be honest. Well, she reiterated VERY STRONGLY I needed to get he book ASAP. I did. Started reading. it applied. I had it at work when my boss noticed it and said there was a Buddhist meditation group meeting at the unitarian church, i should check it out. i did. And after a few weeks meditating, people commented on positive changes they saw in me. I certainly noticed a few. Not so easily turning into the bug blatter beast of Traal was one of them. Through this group, I met Tibetan Lamas such as Ringu Tulku Rinpoche, Tsetan Rinpoche and so on. In Tulsa Oklahoma, of all places. In fact,. it wwas listening to Ringu Tulku Rinpoche speak of escaping CTibet to India, Cinese army shooting at them, being smuggled in a box, losing relatives along the way and then again in the refugee camp to disease… All without rancor. No anger, bitterness or outrage. He said there was grief in the refugee camp, yes, but no anger as such. Whereas here in the US, not that long after 9/11, people were still enraged and saying “‘Murka’s gonna go kick some ass!” In fact, we’re STILL doing that. But when Rinpoche spoke so eloquently about that experience, that’s when i thought “OK, there’s something to this.” That was how the journey began.

So here’s the book and the author who started the first steps….

Open Heart, Clear Mind

 

 

Best links for Buddhist info from beginner to….

http://www.buddhanet.net/e-learning/basic-guide.htm – one of the best overviews of theravada (elder teachings) buddhism.

http://www.buddhanet.net/e-learning/history/comparative.htm – overview of the diferent schools of buddhism.

http://www.buddhanet.net/e-learning/history/b3schvaj.htm – Tibetan buddhism.

http://viewonbuddhism.org/where_beginner_study_practice_meditation.html

http://www.accesstoinsight.org/begin.html

http://www.rangjung.com/authors/Dzongsar_Khyentse_Rinpoche_Norbu.htm

http://www.kagyuoffice.org/buddhism.html – from the school of buddhism i fell into.

http://www.bodhicharya.org/ringu-tulku/ The Lama (teacher) who i met in Tulsa.

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Buddhist meditation class notes

So excited. I found a copy of my class notes from the fiorst meditation class intended. I haven’t seen them since 2012, when i locked them away on a hard drive backup and forgot the password. i wish i could say i rediscovered said password (this is an incomplete copy), but… Happy nonetheless! More than i had!

Notes up to 8/14/11
Buddhist Meditation Class 2003

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We cling to the idea of permanence

“Cars and computers break down. People move away, change jobs, grow up, grow old, get sick, and eventually die. As we look at our experience, we can recognize that we’re no longer infants or schoolchildren. We can see, and often welcome, other major transitions, like graduating from college, getting married, having children, and moving to a new home or a new job. Sometimes the changes we undergo aren’t so pleasant. Like other people, we get sick, we grow old, and eventually we die. Maybe we lose our jobs or the person we’re married to or romantically involved with announces ‘I don’t love you anymore.’

“Yet even as we acknowledge certain changes, on a very subtle level we cling to the idea of permanence: a belief that an essential core of ‘me,’ ‘others,’ and so on, remains constant throughout time. The ‘me’ I was yesterday is the same ‘me’ I am today. The table or book we saw yesterday is the same table or book we see today. The Mingyur Rinpoche who gave a talk yesterday is the same Mingyur Rinpoche giving a talk today. Even our emotions sometimes seem permanent: ‘I was angry at my boss yesterday, I’m angry at him today, and I’ll be angry at him tomorrow. I’ll never forgive him!’

“The Buddha compared this delusion to climbing a tree that looks strong and whole on the outside but is hollow and rotten on the inside. The higher we climb, the more tightly we cling to the lifeless branches, and the more likely it is that one of those branches will break. Eventually, we must fall—and the pain of that fall will be greater the higher we climb.”

~ Yongey Mingyur Rinpoche, “Joyful Wisdom”, Chapter 5: Breaking Through, in the section labeled “Permanence”

Ghosts Come Calling

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Ghosts come calling

In the quiet hours

Of the night

Reminders of paths not taken

Memories of dreams

Not chosen

 

Visitations unceasing

Creating questions better left unasked

Bury the past

Forward is the only direction left

No good comes

From the haunting

 

Only regret

And sadness

And awareness

Of just how foolish

One can be

 

Only thing to do

Vow to make better decisions

Next time around

Or not at all

Locking oneself away…

But that’s no answer

I wait for the rain to come

And wash me clean

As I begin again

In this web that is my own

 

Even if I found him

What would I say?

What could I say?

 

I am sorry for walking away

For disappearing

From the overwhelming feelings invoked

For disappearing

In front of your eyes

Without saying the words

 

For not saying words

I felt so deeply

But could not find

To tell you

What you most needed to hear

All the things I should have said

That I didn’t

All the things I should have done

But I didn’t

 

How could I tell you

That if I had a way

To travel back to that night

That my answer would be yes

And that kiss

That should have happened

Would…

 

But that’s not possible

And so all one can do

Is send that out into the universe

And hope it lands somehow

And carry on

Moving forward into the future that became

As a result of choices made

So long ago…

Looking back, you cannot see

Where you’re going…

 

And the winter’s chill

Seeps in past the barricade

Forming ice around my heart…

© James C 11-29-11