Friday, March 16, 2012

A Hard-Earned 21st

Last week was my brother's 21st birthday. He is the youngest of six- the baby of the family, all grown up. It's a milestone birthday for any one, but I'm especially happy to have been able to celebrate with him. It's sort of a miracle actually.

See, six and a half years go, Joe was hit by a car while crossing the street and suffered a severe traumatic brain injury when he flew about 15 feet forward and landed on his head on the cement. He was airlifted to Harborview and in the ICU they gave him slim chances of surviving. He was in a coma with internal injuries and brain damage, with parts of his right frontal and temporal lobes so damaged they had to be removed. A couple days later they did a craniectomy, removing half of his skull to allow his brain to swell freely. He survived the surgery but remained in a coma.

The neurologists said if he ever did wake up, there would be no telling what his brain function would be. He may be a wheel-chair-bound-vegetable, possibly never walk or talk again, and we should be prepared for that.

He did wake up, 28 days later, though it was almost another month before he said any words. We took him home, where he slowly gained awareness, started eating, and built up his strength for a couple months until he could do 3-4 hours a day of intensive rehab therapy in a residential program at Children's Hospital. Of course, his skull was still off this whole time, so he had to wear a helmet continually since it was only a flap of skin covering his brain. Here he is with another brain-injured boy and some family members, when we participated in a 5K run-walk fundraiser for Children's.
Here are a few articles about Joe from that time. The first two are the transcripts from KOMO news reports, and the third article is from the Shoreline Enterprise.

We were told that the most brain function that is regained in TBI patients is within the first 2 years. The months after the accident Joe had a lot of standard therapies- speech, physical, occupational, cognitive. But my mom also had him try any other kind of therapy or healing modalities she could find, with such ferocious dedication I am still in awe.

The parts of Joe's brain that were affected are what control behavior, judgement, inhibition, and social awareness. Also with his injury, his body produced even higher levels of testosterone. So for years he was an extra hormonal teenage boy with very little filter for what was socially appropriate. That, coupled with short-term memory loss, and you can only imagine the kinds of crazy situations that ensued. He had to be told over and over what was acceptable to talk about, especially concerning women.

It was a trying few years after the accident: taking Joe to countless doctors and therapists, trying to find the right educational setting for him, being wary of taking him in public, and dealing with the subsequent medical issues. Because of his poor judgement and physical coordination, he had a lot more small accidents for years- bicycle crashes, tripping, etc. He also has had seizures fairly frequently, which is a common side effect of brain injury and can actually signify the brain healing. The seizures were really severe and scary at first, with frequent calls to the paramedics and trips back to Children's Hospital. But over the years they've gotten more manageable, and now Joe can feel them coming, sit or lay in a safe spot, and we can help him through them ourselves. He worked really hard to finish high school, and with a combination of public school, special ed, private school, and running start, was able to graduate at 19 which I think is amazing considering he could barely talk for most of his freshman year. He has developed strategies to help himself with his damaged short-term memory, such as writing things down, storing things in his phone, or calling a family member when he can't remember something.

One time in the spring after the accident, when Joe had barely gotten comfortable walking on his own again, I took him to Greenlake to go rollerblading. He had to hold on to me the whole time and go very slowly, but the exercise was good for him, and the right-left movement stimulating for the brain to form new neuro-pathways. It was so good to be out of the house with him, and see my little brother out of a wheelchair. We had probably gone about a quarter of the way around the lake when Joe said he was really tired and needed to turn around. So we turned around and I was just praying that he'd be strong enough to make it back to the car. A few minutes later, a passing woman shouted at us angrily, "HEY! You're going the wrong way on wheels!" Now, I'm all about following the rules of sharing a trail, as both a runner and cyclist. But I wanted to shout back at her, "HEY! The top neurologists in the country said that he might never walk again, so he's doing great, and going the wrong way for a few hundred yards is the least of my concern!"

It was a good reminder that you never really know what is going on with people, and not to be too quick to judge. Especially with brain injury, it can manifest so many different ways, from mild to severe, but not necessarily be obvious the way Down's Syndrome or a physical disability may be. I have seen strangers, as well as people who know Joe, treat him with contempt, suspicion, indifference, and distain. Of course, they don't always know his story or understand him, and he can be off-putting and unnerving at times. But he has a big heart, loves animals and children, and has a great sense of humor. I think his ability to be earnest yet not always take himself too seriously is a key reason he has healed so much. He has been able to hold down the same job for over a year, babysits our niece, and can take care of his daily functions like making food and doing his own laundry. He took a class at Shoreline Community College this quarter, and likes to write and woodwork. He's not able to live independently at this point, but possibly could someday. He seems to have come into himself a lot in the past year and matured, which of course takes time whether you have a brain injury or not!

This has been a surprisingly hard post for me to write. Not because it's an emotional subject, which it is, but more because there is just so much to say and I don't know how to approach it all. It may sound cliche, but Joe's accident was one of those turning points in life that completely changed him and our whole family irrevocably. Now that it's years later and he has survived the worst of it, it's easy to forget how far he's come. It's easy to get annoyed with him and lose patience. But I want to remember. Remember that he beat the odds, the dozens of times when it seemed like he might not make it at all. Remember that he is a medical miracle and it is a happy birthday for his whole family to see him grow into a healthy, happy adult.


Rich Haynes said...

Excellent recall and expression of the situation Amber. I can visualize every step of your descriptive log. I too have an amazing brother who faces life with a disabling brain disease. I have been through Hell and back again with him and have also learned so much from his spirit. He, like Joe is an amazing human being. We can learn so much from these guys and of course...THEY WILL ALWAYS BE OUR BROTHERS, NO MATTER WHAT!!!!!Colleen Haynes

Unknown said...

Wow, Amber. What a well-written and heartfelt story. Thanks for being such a good sister to him. Sounds like he is surrounded by a loving family.

ElizaBeth said...

Kudos to you and your family for banding together - Joe may have survived the odds but he never could have done it without you guys. Of course I'm not surprised by any of it, knowing what outstanding folks you all are!

Katherine Jenkins said...

Happy Birthday to Joe! What a miracle! Your post brought tears to my eyes...but they were happy tears. How lucky you are to have such a loving family and how wonderful that you get to celebrate this birthday with your brother. He sounds pretty amazing to me! Lots of love, Katherine

the green heart said...

thank you for sharing this beautiful story with us. Congratulations for your family, without you all the miracle can't be real!
we miss you

Geri said...

Dear Amber (and Joe!),

I am a Trauma Prevention Coordinator, and I specialize in outreach to the community by teaching about the effects of reckless driving illustrated by stories like Joe's. My program is nonprofit and affiliated with a Level One Trauma program. May I share Joe's story (only the things in this post) as an example of what a TBI is like? I was extraordinarily moved by your account. I tried to find your email to ask you privately, but I had no success. My email is if you would like to speak with me. Thank you so much for sharing such an emotional accounting.

AmberAnda said...

Hi Geri- Thank you for your comment! Sounds like really valuable work you are doing, and I'd be happy for you to share any parts of this story to help prevent reckless driving and potential future TBIs. I will reach out to you via email as well.