My son, Tyler, had 2 grand mal seizures which were brought on by extreme fatigue, stress, emotional upheaval, complicated by neurofibromatosis: a total breakdown. He was on life support, and possibly oxygen deprived. As a result of all of this, he has a brain injury, mainly frontal lobe; loss of short-term memory; and planning skills. He has no recollection of the 2 years prior to this, and his day-to-day memory has only improved slightly.
What are some things that have helped you throughout the recovery journey?
I find that motivation is a big issue. He needs a lot of encouragement to do almost everything. Talking about the ‘day before’ and reinforcing memory is a big part of it. He has been able to gradually reintegrate into his job, because he has done his job for 20 years! He can no longer plan his work, but can still do it quite well, when it’s put in front of him. It’s routine. So that’s a huge ‘plus’.
Fatigue is a big part of his journey…but increasing activity in a gradual way makes it possible. In short, encouragement and patience are the key to progress for him. Lots of patience!
If you could go back to when the brain injury was first acquired and tell yourself one thing, what would that be?
Knowing what we know now, I think acceptance is key. Recovery may be limited, it may be slow; be prepared to take it ‘one day at a time’. Be prepared for setbacks. Be prepared to have days to grieve the loss of the life you had before. Be prepared to sacrifice. Be prepared to have faith. Be prepared to never give up!
What would you like people who don’t have a brain injury to know?
For the people around you, it’s hard to see past the brain injury. You lose relationships and friendships too. For Tyler, his essential personhood is still there. He is congenial and witty, within certain parameters. There are some days that are ‘low’ days. But he hardly remembers ‘the day before’. But, in the moment, he is engaged. So even though he may forget, it’s still meaningful.
