What is a TBI (Traumatic Brain Injury)? Well, google defines it as "an insult
to the brain from an external force or substance, possibly leading to
permanent or temporary impairment of cognitive, physical, and
psychosocial functions, with an associated diminished or altered state
of consciousness."
This could mean anything, right? A car accident, a sport accident, falling down the stairs, physical abuse, lack of oxygen to the brain, etc...
Being someone who has experienced a TBI (lack of oxygen to the brain through Carbon Monoxide poisoning), I have experienced the frustration of feeling as though no one understands what you are going through, and feeling as though you have no support. It's true, it's close to impossible to understand or truly support someone who is experiencing a trial that we have not been through ourselves. But as good friends, neighbors, and family members, we try to be there for those we know that are experiencing something difficult.
I was thinking about those posts that you see about what not to say to certain people experiencing certain things (ie; What not to say to a Pregnant Person, What not to say to a Stay at Home Mom, etc), and decided to come up with one of my own regarding TBI's. Mostly because it's a way to get my frustration out about it without offending anyone directly. I think it's good to be aware of these things, because you never know who you may come in contact with who is suffering from a TBI. Remember, TBI's almost always show no physical signs and can be hard to detect.
For background on what I am reffering to,
click here or here.
So, with the help of brainline.org, here is my list of
10 Things Not to Say to Someone with a Brain Injury
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."
I have experienced this on countless occasions. In a way it is nice to hear, but more often than not, it is belittling and frustrating. Yes, I am happy that you can't tell by looking at me that I function a lot less normal than I used to. But also, that doesn't make me feel very validated in the changes that I am experiencing. In fact, it makes me feel like you don't believe that what I am going through is really anything at all. It makes me feel like the 2-3 doctor/therapy appointments I go to every week are considered pointless, when in reality they are changing my life.
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."
I have never experienced someone telling me that I am lazy. If they had, they probably would have been knocked to the ground because I am the very opposite of lazy. In fact, I have been accused, by at least 2 of my doctors, of taking on too many responsibilities and inhibiting my recovery.
However, I have definitely felt a lack of interest to do things, including spend time with my friends, lack of motivation to do the things that need to get done, including laundry and dishes, and lack of emotion about things that matter, including arguments that Jaymeson and I may get into. I have also felt the guilt that goes along with that. I think the best thing to do is to push me a little bit. It's good for me to get out of the house and spend time with friends, or not give up on my regular responsibilities, or to force myself to care about something when I know I don't want to. So don't take no for an answer... unless I have a really good excuse.
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 live with someone who is grumpy, moody, or angry all the
time. Certain prescription drugs, supplements, changes in diet, or
therapy that focuses on adjustment and coping skills can all help to reduce irritability."
I have heard this one quite a few times myself, and to be honest with you, I can't blame them. I am more of a grump than I have ever been. But that doesn't mean I like it, or I want to be that way. I believe that it is mostly because my brain is not able to handle as many things as it used to. So, while I look like I'm angry or not having fun, my mind is probably just preoccupied with other things that I am not realizing where I am. I have also been accused by a therapist of not living in the moment. That's actually one of the main things I am working on right now. Living in the moment and not letting my brain wander and missing out on regular every day occurrences because my brain is "out of this world".
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."
I have never been told this out of anger, but I have been told similar things in a joking, nonchalant manner. Something along the lines of being frustrated because I didn't hear them the first time, or that I asked them the same question multiple times. Again, for me, it's a multitasking thing. If I can't focus on what you are saying because I am preoccupied with something else, chances are I have no idea what you said. In some of the therapy that I go to, I am learning ways around this. Such as, taking notes, asking you to repeat yourself, asking you to slow down, etc. Some of them are working, and some of them still need some work.
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."
This seems like something very harsh to say to someone who is struggling, and I personally haven't heard it so I don't have much to say. So... just take note.
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.
It’s a good idea to regularly review prescription drugs with a
doctor. Don’t be afraid to ask about alternatives that might reduce side
effects. At some point in recovery, it might very well be the right
time to taper off a drug. But, you won’t know this without regular
follow-up."
I am not currently taking any medications, other than good ole' birth control or some sort of antibiotic to fight off whatever sickness has invaded my body. I have personally made a solid effort to try to resolve my impairments on my own instead of relying on medication to make it happen. I believe that I will be stronger in the end for it, and that I will have less chance of relapsing if I can learn to deal with this myself. Sometimes I do feel like I need something and that I can't do it on my own, so I understand completely how the statement above can be very frustrating. I know how it feels to not want to do any of this anymore and just give up. Some people have less will power or are less stubborn than I am, but the medication thing is definitely a reality.
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."
I am guilty of trying to control too many situations, even before the brain injury. I feel capable of doing most things thrown at me, and as a result of that, I sometimes don't trust others to being able to appropriately handle things (at least the same way that I would). I have a hard time allowing people to do things for me unless I know that it is so so simple that they can't screw it up or it's something that I just don't want to do. But even now, I'm learning that it's important to do things for myself to help rebuild those skills that I lost. Yes, I need to give up more responsibilities sometimes, but I don't need to hand off the responsibilities or even part of the responsibilities that I have chosen to take on just because I may be a little slower at it than I used to be. Practice makes perfect, and that is true in the recovery process.
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."
Literally, this is the hardest thing to do. "Think positively." Yea. Sure, I can think to myself that I am lucky to be alive, or I'm lucky to not have as many issues as this other person. But to actually be able to think positively in the midst of a real struggle, is sometimes extremely difficult.
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."
This is the number one thing that I hear. And honestly, it doesn't really bother me. It actually makes me feel special. It's true. I am lucky to be alive. Jaymeson is lucky to be alive. And Tatum is lucky to be alive even more! I haven't experienced any suicidal thoughts or similar, thank goodness. Sometimes I do feel like I can't do this anymore, or I can't deal with that anymore. I understand why someone would have those terrible thoughts. It is beyond frustrating not being able to live and act and be the same person you have lived your whole life being. Having to completely restructure yourself,
by no choice of your own, is not an easy task.
10. Take your time -- we are not in a hurry.
I took one out that I felt didn't really apply, and added this one. People who have experienced a TBI often are not as quick as they used to be. Saying "Take your time, we are not in a hurry", while very considerate of you, also makes us feel like a project or incapable. We know that we need to take our time in order to effectively do something. We know that you are waiting on us. We know that you can probably do it faster. Although it may be a considerate statement, think about how you would feel if you were struggling to do something you used to be able to do just fine and someone telling you to take your time because they aren't in a hurry. (You know, because if they were in a hurry, you better not be taking your time.) Don't you think you'd feel a little unnecessary pressure? Maybe I'm crazy.
11. And as an added bonus... Are you sure your doctors know what they are doing?
This one I also added myself, and is my favorite. And by favorite, I mean least favorite. No. I have absolutely no idea if my doctor's know what they are doing. They are just my doctors, who specialize in what I am going through. They are just changing my life, little by little, every time I see them. They are sometimes the only support that I have. They only studied exactly the treatment that is recommended for me for several years of their life. You're right. They don't know what they are doing. Ok... lots of sarcasm. But really, I'm not a doctor. So I guess I don't really know. I just know what has been recommended for me and my family, and what is helping us right now.
I'm lucky (or unlucky) because my husband was also exposed to CO poisoning at the same time. So even though he may not be experiencing all of the same side effects that I am, he understands that I am different and that I am going through changes, and it may be awhile before I can adjust enough to feel comfortable in my own skin again. It also makes our relationship a lot harder than it used to be sometimes. We are both going through so many changes, and sometimes you just want consistency. Sometimes it's frustrating if the one thing you are supposed to count on (your spouse) is not always capable of being counted on due to their injury. Jaymeson and I are both loyal and determined people, and I have no doubt that we will make it through this and be stronger in the end. So, maybe we are lucky. :)
A short update on each of us: I am still going through Cognitive Rehab and Counseling. I am progressing on up the "scale of recovery" and things are going well. I definitely have my hard days, and some very hard days. But I am grateful that I am near specialists who can help me, and that I am able to get the treatment that I need. I really don't like the person CO has changed me to be. I really hope someday I will get back to who I used to be before, but I don't know if that's a reality. Jaymeson, due to work, has not been able to start his recommended treatment yet. We are hoping that he will be able to work out a schedule with his office soon that will allow him to get the treatment he needs regularly. Tatum is perfect, almost. He has had some kidney issues, that may or may not be related to the CO poisoning. (More likely that they are considering the kidney issues he had just prior to birth and at birth.) We are treating it as it comes, and hopefully we will have more answers soon. Other than that, he is perfect. He is developing just how he should be, and he is the light of our lives!
Someday, when I am in a better state of mind, I hope to create some serious awareness for CO poisoning. It may be a few years before I am able to do this, but it is something I want to do and feel strongly about. I will use this blog to follow our progress sometimes, but I am always open to talking to people about it. Sometimes it's hard, but that's good for me. So, if you have questions, feel free to ask. And for now in terms of awareness, if you don't have a CO detector in your home... GET ONE. Seriously. Here is a link for one. :)
