Anything But That!

I'm off the restrictions the Neuropsychologist put me on for the brain injury. I can read and write and use the computer so long as I don't get overtired or have head/eye aches. I can go back to most normal activity, except fair or amusement park rides.

I am not allowed to work on my novel, or to read a novel, mainly because I have limited resources in my cranium. Basically, if I choose to do something that expends too much energy, my brain will shut me right down and start running on its generators. For example, last Tuesday I was at the cemetery planting flowers. I'm supposed to pace myself so that I don't get overtired, so I decided that I would only be there for an hour, and then I walked home when my time was up. Much to my later dismay, this completely wiped me out and I was unable to contribute very well to others for the rest of the day. 

My problem is that I can't tell how much is too much, how tiring a given activity will be. 

When I made it to Dr Cook's Traumatic Brain Injury Support Group at the end of the day, he said, "We could have told you that planting flowers for anything more than half an hour would have that effect on you. Any physical activity is going to effect you this way. And if you overdo, you will be as tired, and your symptoms will be as bad, as when you first were in the accident."

My sister's response to this: "Thanks a whole hell of a lot, Dr Cook, could you please come to my house and then follow me around to tell me what will or will not be too tiring?" 

Because, you know, planting flowers is supposed to be relaxing. 

Then last night I found myself playing Dungeons and Dragons for the first time, and after two hours it felt as if someone had flicked a switch, because my head became too heavy and started nodding, my eyes kept closing involuntarily. Every move everyone else made seemed to cause vertigo, and I really had to struggle to hear and understand what people were trying to say to me. But I kept at it for another hour because everyone else was having so much fun and they weren't taking any notice of me. I figured if my brain got disgusted with me it would say something more obviously, like cause my words to slur or get confused to the extent that people would notice and decide to stop on their own. I didn't want to be the reason we couldn't play anymore. 

So, too much physical exercise OR too much intellectual exercise, and I am all worn out.

When I couldn't take it anymore, I told my sister that I felt as bad as when we went to Wolfgang's for breakfast, but she took her irritable "Why can't you communicate with me in a way that I can understand?" tone of voice with me. 

My friend Gene immediately knew what I was saying and translated, "Six months ago when we went to Wolfgang's in Grand Rapids, that place where it was overcrowded and we had to stand in line in that hallway packed with people?"

"Yeah," I said, "That was before I was referred to Dr Cook, when I was doing way too much and didn't know it. I feel that bad right now."

My sister said shortly, "I don't understand what 'that bad' means. Just go to bed."

I did. 

I found myself curled up in a ball at one in the morning, sniffling.

"What's wrong?" Gene came and asked. He hadn't gone to sleep yet, either. "Is there anything I can do?"

Fatigue is the most debilitating aspects of these kinds of injuries.

I blew my nose and said, "I'm scared. I could hardly function up there, that last half hour especially. I haven't felt this bad in a long time, and here it comes back like none of the therapy ever happened."

"Heather, it's probably going to be that way for you for the rest of your life," he said gently.

That's what Dr Cook and all the therapists keep telling me, that the neural fatigue is forever, but that I will learn to cope with it. I don't know why it refuses to sink permanently in. 
Randy, a guy from the support group, is fond of saying "With brain injury, you don't know what you don't know," by which he means that the irony of it all is that your brain keeps trying to run like business as usual, causing you to believe that everything's like it always was before, only it isn't, and you are continually baffled when you try to do too much and your brain is forced to show its hand. 

So anyway, I therefore have to weigh out my options for maximum brain usage. I have to plan each day down to the hour, sometimes even the half hour. Ideally, I would know in advance that two hours of D&D, or just half an hour of gardening, is the absolute maximum amount of time that I can effectively function. I have to say to myself, "I CAN go on the two and a half hour long car ride to pick up kids from my ex's house, but SHOULD I, if it tires me out so much later that I can scarcely tell them a bedtime story? I can choose to garden for an hour, or to be more proficient at therapy appointments for the day. I took a nap before D&D, thinking that would be enough to recharge my batteries, but it wasn't.

Weird things that I can do, but don't make sense: Type a novella on this bog and not feel overly tired -- although that's partly because I I take a nap in about three hours from now.  Read my kids The Book of Three, although that's partly because I go to bed right after that. Walk to the end of our street and back on a daily basis, only that's usually just before I take my nap. When I get home from therapy, I try to meditate instead of napping, because sleeping too much in the daytime eventually could make it harder to sleep at night.

I can't get a clear picture from more than one brain injury specialist at a time. For example, Dr Cook says, "Of course you can go back to teaching. I had a client who did exactly that. She just had to plan her day carefully and come ultra-prepared. Couldn't do anything on the fly, but was still a very good teacher." 

Then I have the Cognitive Therapist say, "You can be a teacher if you want to...but maybe you'd be better off starting online." 

And then I have the Vocational Therapist saying, "You need to build up your stamina. You can volunteer for now, and then later get a part time job, but I wouldn't recommend substitute teaching because you have anxiety and you need something slow and predictable, like working at a factory or filing in an office... The only time we ever recommend a person with brain injury to go back to work full time is if they'll lose their job if they don't. The only way you could hold a full-time teaching job would be if you were already an established teacher in a school to begin with."

I had a run-in with one of my friends' friends on Facebook, lecturing me about scamming my way into disability. It was invalidating, and especially hypocritical on her part, since she's been on welfare her entire life and my friend used to complain that she didn't do her job well and would probably be on welfare the rest of her life because she wasn't willing to work as hard as she would need to if she wanted to get ahead. 

Another friend of mine was absolutely right telling me not to bother explaining myself to people who are too ignorant or too stubborn to understand, but encounters like this always make me feel bad because I hate it when people assume that I'm not telling the truth no matter what it is they think I'm lying about. 

My therapist says that Borderline Personality Disorder is caused by growing up in an invalidating environment, where your thoughts and feelings aren't encouraged to express themselves, and that people with BPD spend the rest of their lives trying to convince other people and themselves that what they are feeling or thinking is valid whether it's accepted by others or not. 

So they express themselves in extremes -- You don't know how sad I am? I need to do something drastic to prove myself, like cutting my wrists or overdosing, or not being able to get out of bed in the morning. They don't do this on purpose, and the reasons are generally subconscious, but in the end the reason is always basically the same -- I really need help and I don't think anyone can help me, or wants to help me, or even believes that I need help at all... 

Having PTSD sucks, because to a lot of people it looks as if you're making it up just to get attention, or that you're focusing too much on your "disability" and that it wouldn't be so bad if you just stopped making such a big deal about it. 

Having Mild Traumatic Brain Injury is invalidating all on it's own, because people who suffer from it look and act "normal" most of the time. 

It makes me so angry.

If I were doing these things just for attention, don't you think I'd have picked something a little more socially acceptable than BPD, a little less obvious than PTSD, and a hell of a lot more believable than a closed-head mild traumatic brain injury that enables me to write just about as well as ever, but prevents me from comprehending a worksheet I'd give my eighth grade students with 25 simple directions on it?

I can do anything I set my mind to.

Except when I can't. 

For further information regarding Mild Traumatic Brain Injury, take a look at the following information from the Traumatic Brain Injury Association of America: 

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Mild Traumatic Brain Injury
MTBI Facts
• 1.7 million people suffer a TBI each year in the U.S, of these, 
between 75% and 90% are categorized as MTBI.
• MTBIs cost the nation nearly $17 billion each year.
• Research indicates that up to 15% of patients diagnosed
with MTBI may have persistent, disabling problems.

Defining MTBI
The occurrence of injury to the head arising from blunt trauma or 
acceleration or deceleration forces involving any one of the following:
• Any period of loss of consciousness.
• Any loss of memory for events immediately before or after 
an accident.
• Any alteration in mental state at the time of the accident.
• Focal neurological deficits that may or may not be 
temporary.
Severity of injury does not exceed:
• Loss of consciousness of more than 30 minutes.
• Initial Glasgow Coma Scale of 13-15.
• Post-traumatic amnesia longer than 24 hours.

Symptoms Following a MTBI
• Dizziness
• Vertigo
• Musculoskeletal complaints
• Post-traumatic headaches
• Balance and spatial disorientation
• Visual disturbances
• Altered taste and smell
• Hearing changes
• Fatigue
• Sensitivity to light
• Decreased attention and concentration
• Reading and auditory comprehension problems
• Increased irritability 
• Depression and anxiety
• Sleep disturbances

What Happens Inside the Head After an MTBI?

A series of biochemical and physiological events occur following an 
MTBI, which can include the following:
• A breakage of the neuronal membrane by the injury.
• A decrease in cerebral blood flow to neurons.
• An increased demand for glucose, which is not present in 
sufficient amounts to maintain neuronal stability.
• A deficient blood supply combined with deficient oxygen 
supply, which leads to a metabolic disturbance.
• An immediate release of excitatory neurotransmitters 
causing neurons to fire repeatedly until they die.
• These cumulative events impact neurons that are distant 
from the injury site for many weeks or months.

Early Treatment is Essential for Maximum Recovery
• Early intervention can provide significant benefits in rate of 
recovery, cost per unit of recovery, care requirements and 
reduction of lifetime costs.
• Evidence exists that early rehabilitation interventions 
following brain injury are less expensive and more time 
efficient when compared to rehabilitation that is delayed.

Potential Complications Following MTBI
• Tendency for re-injury
• Depression and anxiety
• Avoidance of activities
• Isolation
• Client and family stress
• Suicidal ideations and attempts
• Functional difficulties at work and home
• Delays in recovery
• Chronic disability
• Long-term costs
• Problems with the law and/or litigation

References
Ashley, M, O’Shanick, G, Kreber, L. Early vs. Late Treatment of 
Traumatic Brain Injury. Vienna, VA: Brain Injury Association of 
America, 2009. 
Centers for Disease Control and Prevention (CDC), National Center for 
Injury Prevention and Control. Report to Congress on mild traumatic 
brain injury in the United States: steps to prevent a serious public 
health problem. Atlanta (GA): Centers for Disease Control and 
Prevention; 2003.
Langlois JA, Rutland-Brown W, Wald M. The epidemiology and impact 
of traumatic brain injury: a brief overview. Journal of Head Trauma 
Rehabilitation 2006; 21(5):375-8
Finkelstein E, Corso P, Miller T and associates. The Incidence and 
Economic Burden of Injuries in the United States. New York (NY): 
Oxford University Press; 2006
Bazarian J, et al. Mild traumatic brain injury in the United States, 
1998-2000. Brain Injury 2005; 19(2):85-91.
Bazarian J, Blyth B, Cimpello L. Bench to beside: evidence for brain 
injury after concussion—looking beyond the computed tomography 
scan. Academic Emergency Medicine 2006; 13(2):199-214.
Mooney G, Speed J, Sheppard S. Factors related to recovery after mild 
traumatic brain injury. Brain Injury 2005; 19(12):975-87