Support

It seems that for a condition like Tyler's there is little or no support. He's not been given guidance on what to do, what not to do. The only thing we have is the Occupational Therapist from ICBC (a wonderful lady) who steps by 2-3 times a week for an hour, and takes him for a walk or to the gym, or exercises at home.

We don't know if rest is the thing he needs, or stimulation. We don't know how much he should push things despite the pain, or whether the pain is a warning. We seem to be in this 'crash-and-burn' cycle, where he pushes himself and then crashes for several days. Or he takes it easy, rests a lot, is in bed a lot, feels lousy, bored and lonely and still crashes. I get the impression that lying in bed does not make him feel better. But I see that not lying in bed often hurts his head so much. What to do?

We don't know if there are certain mental exercises he should do. I worry about his right eye, which has difficulty. At first we thought it was physical, and that the eye was unable to focus, because that's how it seems to him. The eye specialist said everything is normal.
We're now starting to think that the difficulty is in the brain. The visual cortex somehow tires out, and the image no longer makes sense to him.
Similarly with conversation. When his brain gets tired, he still hears the sounds, but is unable to make sense of the words. Luckily with conversation, that now rarely happens. But his eye still has a lot of problems. And he's started to tune it out, he says. He uses his left eye only, because the minute he forces his brain to use the right eye, it hurts his brain. How can using an eye hurt your brain? Why does no-one have answers for us? I think of all those little kids forced to warn an eye-patch, to protect the lazy eye. Will his right eye totally stop working unless we force it?

And there is no help for immediate family. The focus of our GP, as it should be, is on Tyler. The GP now recommends visits once a month, mostly to renew medications. The focus of the OT is on Tyler. The focus on the OT from his work insurance, Jack, who occasionally checks in, is on Tyler. That is only a few hours here an there, if you add it all up. Thank you for everyone out there, who's been there for me.

They say a brain injury is one of the most isolating conditions. Since social interaction, which requires multi-tasking, concentration, visual and verbal communication, is tough on the brain, it wears him out. But to not have any social interaction brings him down.
I'm glad to see that slowly, we're able to have visitors, and that the days that this is possible are getting more frequent.
But the hardest things is that we can't plan anything. A good day can very quickly turn into a bad day. We never know what to expect.

While I'm away, these next 2 weeks, please, call him, visit him. Please. Let him know you care.

Recovering Spirit

The amazing is that, during all this time, Tyler has remained the same intelligent, funny and caring person he was. I think that is what pulls us through.

His accident was December 10, 2007. The funny thing was that, for a week or so after, he was fine and fully functional, even if he had a bad head ache and was feeling somewhat stunned. But a week or so after the accident, everything came apart.

We spent Xmas at Lions Gate hospital. I was trying to keep him company during the night, and was getting very sleepy and tired. Tyler made room for me on the hospital bed so I could close my eyes. "So sweet how he's still looking after you even though he's the one in hospital" said one of the nurses.

North Americans and their cars

When Tyler was able to drive again, in the Summer of last year, that was a big deal, I think. Not having to use a taxi for everything. Regaining some independence. And, I'm sure, the North American attachment to the Car as a Rite of Passage. Becoming your own person.

Even though Vancouver is, for North America, a transit-friendly and bike-friendly city, getting around on your own time table requires a car. Besides, with a head injury, when crowds, busy environments and a lot of stimulus are hard to handle, public transit is not an option.

Cars in North America are part of the family. Far from being a utility to get you from A to B, it is an object of ritual and reverence. I wonder if the reason car chases in movies are such integral part and have such impact, is because of the reckless destruction of an idol.

Writing again

So why do I post again?

I found it amazing how few resources there are to support people dealing with head injury recovery. How little help there is from the medical community. We've seen many many specialists, ear specialists, eye specialists, neurologists, migraine and head injury specialists.

Their answer is always the same. There is nothing we can do. It will take time.
The only help is some pain management. And the drugs barely work on the bad days.

I figure that by posting, maybe there's someone who reads this whom it can help.

We were very hopeful last week, when finally he had an appointment at "GF Strong Rehabilitation Centre". Then he received another call for another appointment, with another doctor at GF Strong, less than a week after the first. No-one seemed to know what was going on.
The day of the first appointment, we drove to GF Strong, only to be told that the appointment with Dr Underwood was actually at a private clinic, which no-one had told us. We raced to the private clinic location. Tyler is asked to fill in a four page questionaire prior to the appointment. And the appointment, it turned out, was for a back injury of many years ago, which has long since healed.

Sometimes you wonder who has the dysfunction :)

Dr Underwood had the same message that the previous specialists had. There is nothing we can do. She did have a new term for us.

At first, the term was "concussion". It then became "post-concussion syndrome". The next scary term was "brain injury", as well as "post traumatic brain injury". The latest term is "persistent post concussion trauma or syndrome". What's in a name? Well, each new name and term gives us new google searches! :)

Long road of recovery from head injury

At first, we would have 2 good minutes, followed by a week in bed, with a ice pack wrapped in a tea towel, dark room, no company and headphones to block out the noise.

Now, 16 months later, we have 3-5 good days. Followed by 2-5 bad days. In bed. With icepack. Tea towel. Headphones. Alone.

I admire how he keeps going.

Good days means functional days, means days he's not in bed. Days were I see him, some of the time. Where he can run errands, get around, do stuff around the house.

Therapy started with walking and talking. Both were hard. Both at the same time, impossible. At first we didn't get much farther than a block.
Then again, on good days, even then, we would do 15 minutes. After 5 minutes, talking became hard. The last block, I would support him, his eyes unfocused on the place right in front of his feet. He would stumble up the front stairs.

ICBC assigned an occupational therapist. To walk and talk with him. Many sessions were canceled at first, because the headache was too much.
Then came exercise and talk. Count the number of repetitions in your head, talk to the OT, and do exercises. Very difficult at first. Often a session with the OT was the end of a good day, and the start of many bad ones.
Now, several times a month, the OT and him make it to the gym. Exercise, keeping track of the repetitions, while there is noise and movement all around.
Sessions still are canceled. Because he can't make it out of bed.

He has a headache every waking second. Some moments, few moments, it is barely there. Some moments, many moments, the pain is disabling.

A week or so ago, the OT and him went for a walk, and found a forested area. The OT remarked what a wonderful bike trail this would be. When Tyler came home he said to me how sad that made him. Because he had to stop looking around half way through the walk, because his brain was getting overwhelmed. Because he will probably never ride a bike again. Too dangerous, said the doctor. Imagine you fall and hit your head again. That would be it.

You never write anymore

I know! And I'm sorry.

The reason is... well the reason is... that the thing that's most on my mind is Tyler's condition, and what can you say about that?

"He's slowly getting better" is what I tell people. Which is true. Except that the 'slowly' kind of understates it.

It has been now almost 16 months. Sixteen months, next Friday. I don't think you can really get what a brain injury means, until you see it.

And as he's getting better, you realize how bad it really was. How often just talking was not doable. In the first few months, his ability to hold a conversation would fade fast, after a few minutes. He would get confused. No longer get what I was saying. No longer able to find any words. You could see the struggle; the thought was there, just not the words.

Any big-time visual was overwhelming. A movie, even at home. Visit to the grocery store. If he had a good day, he would come with me. At first we wouldn't even get past the vegetable section, before his head was overwhelmed, and he would stumble to the car. Often that was the last I saw of him for a few days.

Making decisions, in the first months, was an ability he'd lost. He would look at the options, look at one type of toothpaste and the other, and say "I don't know how to choose". Not, that he had no preference. But that he didn't know how to choose.

The blinding headaches, like the worst migraine ever. Any sound, any sight, like a sword through the top of his head and out from his right eye.
I now walk on tip-toe all the time. Even when it isn't needed any more.

The falling down. I became a watch-full eye for the uneven road, or for the first tell-tale wobble that could very easily become a crash. I'm not strong enough to hold him up. But at least I can guide the fall. And sometimes grab a chair, just in time.

Good thing both of us have a great sense of humour. Because what else can you do but laugh?