When your Brain doesn’t Cooperate
When my friend asked me to meet him for lunch I didn’t give it much of a second thought.
Last time I saw Kevin was at a common friend’s concert. It was that picture of him that I had in mind.
I figured that he would be coming from work, we’d have an hour to have soup and a sandwich, that we would swap stories and then head right back to our busy lives.
What I had forgotten is that between the concert and our lunch date my friend had a very serious stroke, one that almost took his life. The man that walked around the corner and headed to my table was my same friend, but it was also obvious that his life was now very different.
Kevin shook my offered hand with what used to be his dominant hand. It isn’t any longer. The stroke, on the left side of his brain, affected the motor skills on his right side. What I noticed first with the handshake is that it didn’t come with the same grip that it used to, yet as I looked in his eyes I couldn’t find any hint of shame in the change.
Our conversation wasn’t much different than other lunches we’ve shared in the past. We talked about counseling (his first profession) and pastoring (my first profession) and how differently that those things look for the both of us now. We caught up on kids and relationships. We talked about Church and Christianity. We discussed about how we’ve both learned to navigate change.
The biggest difference in the conversation (from my perspective) is that it takes Kevin five to ten times as long to get out his next sentence. I guess it could be compared to a laptop that is straining to connect the processor with the needed section of the hard drive. Some machines just take longer than others. But as we kept conversing I began to see him like a wise professor that only spoke once he was ready with the exact words he chose to speak.
Lunch was closer to two hours than it was to one. I didn’t mind the break from the regular pace. I was thankful for a friend who’d drink a beer with me at 12:30. I was grateful that Kevin is still alive, has a life ahead of him, that though will be different from his last chapter, is one that I expect will be full and very meaningful.
You don’t plan for a stroke. You don’t schedule it. You don’t want it. You don’t expect it.
Brain damage is a difficult wall to get around. The brain works hard to rewire itself and recuperate, but what was normal for a person’s life might not ever be the same. The future is full of unknowns and very hard work.
You don’t plan to have a whole hemisphere of your son’s brain disconnected or possibly removed. At least I would have never thought so. And then my grade-school friend Stephanie told me that is exactly what she is faced doing with her 10-year old son James.
You can read the whole story that this desperate, loving mother writes about her and her son’s journey as James started having seizures a year ago. Unfortunately he did not respond to epilepsy treatments. And unfortunately the scans the doctors have made of his brain are showing that the right hemisphere of his brain is deteriorating.
Can you imagine having a group of doctors from UCLA tell you that your son has Rasmussen’s Encephalitis (a rare, inflammatory, neurological disease)?
How would you feel when you were told that there was no cure – that the only way to stop the deterioration is to disconnect and/or remove the affected hemisphere?
How would you feel explaining this to your son? – knowing that when he wakes up from surgery his dominant hand won’t’ work the same way ever again, he might not be able to say exactly what he is thinking for a while, that he will probably have to learn to walk again – in fact James might not even be able to smile at his family for a while.
Stephanie has asked me to come spend a couple of days in their home and take some pre-surgery photos of James. I’m going to do the best I can to blend into the woodwork, or the family when it is appropriate, and capture a couple days of this young man’s life. Come this July his life is going to drastically change. Hopefully (prayerfully) it will no longer consist of seizures and any future deterioration, yet it will require a lot of courage, determination, hard work, patience and faith. It may be that these photos we capture are stones of remembrance for him, images of connection, or something even more significant that we don’t even know yet.
I was to fly out on the this last month. Stephanie already sent me the $400 for the ticket. She asked how much I would charge for the time and the photos but Reveal Mission work isn’t something that we request finances for. She has only begun to see the start of bills for James’ surgery and recovery and I’m not going to add to that.
Unfortunately James had a bad week. He fell twice. The first time he didn’t get his arm up to block his fall. He face took the brunt force of the fall and he has some significant bruising and road rash. The second time he did get his arm up in time to protect his face, yet now he is sporting a cast on his broken arm. Stephanie decided to cancel the photos as James looks like he has gone a couple of losing rounds with Vin Diesel. We are wanting to take some good and memorable photos of James and his family. Thankfully Expedia and Alaska gave me some grace for the tickets (I really should have purchased the insurance) and we rescheduled for the end of June.
Once James has the surgery he is expected to have at least a six week recovery time at UCLA before he returns home. Stephanie will be with him the whole time and various friends and family members may travel to California to help support her during this time. I would like to be a part of this team and spend a couple of days at UCLA with James and Stephanie in August to follow up with him on his story, his recovery, and take a new set of photos.
I’d like to raise enough funding to fly to UCLA to capture this part of James’ journey, and also return the $400 that Stephanie sent me for the first flight so we could take the before photos.
Projects like this certainly make realize that I need to get working on turning The Reveal Mission to a non-profit organization as soon as possible. I think funding is out there for projects like this, but we have some work to do to make it happen.