Thoughts from a family visit

Until last Thursday (February 10, 2011) the last time I saw Brooke was just a few weeks before his accident back in 2008. He happened to be at his sister’s apartment in Manhattan when I popped in to see his brother-in-law to “talk shop.” I remember the joy of the surprise, as we rarely got to see each other. We spoke for a few moments, shared a big hug, and he was gone.

The reason we hadn’t seen each other since his accident was purely one of my selfishness. I was afraid to see him. I was avoiding exposure to the very pain and suffering Brooke was enduring on a daily basis. He had people taking care of him, so I would ask myself why I needed to go see him even if I desperately wanted to tell him that I thought of him often, tell him I loved him – I could accomplish that from afar. I had already cried after the first time we spoke since his accident sometime last year. Why would I want to subject myself to any more of that? Why change the way I think of Brooke when I picture him? Why let him see the concern I was bound to show upon seeing him in his current condition? Selfish jerk.

As you can tell, Brooke’s accident affected me deeply. Our relationship had gone through its ups and downs, but over the last decade or so we had developed a bond. I don’t know where the bond came from, but it likely formed when we hiked to the top of Antelope Island together back in April of ’02. Looking out over the Great Salt Lake and seeing the majesty of the mountains in the distance was so special that any time I see mountains I am reminded of that day. Over the years we spoke infrequently, but when we did it was meaningful.

And that is what this last visit was – meaningful. Stepping into “M Street” is like stepping back in time for me. The images on the wall, the layout of the rooms, and even the way the sidewalk meets the property in front are all things that trigger various positive memories for me as a child. I spent a few minutes outside preparing myself to forever change the way I saw the place. I had heard through the family grapevine that life at home was manageable for Brooke, but also that every day was a challenge. I was about to go snowboarding for the weekend, so the last thing I needed was a downer to start off my weekend. (Hey, there’s that selfish jerk again.)

However, the visit turned out to be everything but a downer. Brooke was busy working on a lesson plan for his Shakespeare class when I came in – seriously?!? Working on a class? I could tell from his speech pattern that he was using some sort of voice-to-text technology. Very cool. That set the tone for the rest of the visit. I headed upstairs to see my favorite Aunt Peggy and my cousin Mike Battin (who happened to be in town.) We got all caught up on each other’s latest goings-on and headed downstairs to really start the visit when Brooke was done with his work.

The evening was truly amazing. What was likely just another day for Peggy and Brooke was life changing for me. We enjoyed some drinks together, had a great slow-cooked chicken dinner, and talked about everything old and new. Brooke required help the whole time, but it was easy to pitch in and do my part. Mike and Peggy were on “caregiver autopilot”, and what I observed was far from pain and suffering. It was more like poetry. What I thought I would perceive as juggling the various tasks associated with Brooke’s care was more like well-choreographed theater. At points we had Brooke laughing so hard I thought he was going to short-circuit his diaphragm regulator! What I witnessed was that Brooke was not just alive, but living.

I don’t want my description of the evening to diminish the seriousness of life for Brooke. He still requires ‘round-the-clock help. But, the way he interacted with all of the people who were in and out of the house that night makes it clear that the help is acknowledged and appreciated.

What was just as meaningful to me was that I knew I had changed when I left. The visit with Brooke has changed the way I view the accident, Brooke and myself on so many levels, which is a topic for another time. And speaking of time, not so much will pass before I return to M Street to see Brooke again. - Bill Hogenauer, 2/11

Arrival of the Fire Department

We know we’ve been silent, and we owe you more.  Our new life is complicated, for reasons we’ll describe.  But here’s one vignette from this new life, now that Brooke is at home.

 A week or so ago, at our invitation, the fire department showed up to explore our situation.  There were four of them, big guys who looked even bigger in their massive uniforms, but coming with one mission: to see how to make things as safe for Brooke as possible, whether in a fire or in any other emergency. 

They like to keep track of the folks on vents in their area, they said, or with other health problems—after all, they’re the paramedics and rescue squad.    So they looked at the way our house is arranged so that Brooke can live entirely on the ground floor, and checked out the various routes of egress.  That makes it easy, they said, though they also said that if there were a real fire, they’d not just check the downstairs but the entire upstairs, including every closet—that’s where children try to hide in a fire.  They admired our new backup generator, fully automatic.  They noticed the fire extinguishers.  And of course they talked with Brooke, noted the various sorts of respiratory equipment on hand from the oxygen tanks to the backup ventilator, and carefully examined his diaphragmatic pacer, making sure they knew how to change the control box and where the extra batteries are stored.  We need to put together a “Go Bag” of stuff you don’t want to have to wait to assemble, if he were to need to be transported to the hospital in an emergency:  a copy of his physician orders, his medications list, his Living Will (full code, it says), and of course copies of his insurance cards. 

The firemen made it clear that they were impressed by the job our staff has been doing:  you’ve got it together, they said, lots of other people don’t.  This is praise we didn’t take lightly.    But as they finished their visit, they turned and said, we recognize you.   Two of them had been on the crew that had rescued Brooke at the time of the accident, two years and two months ago.  You’ve lost so much weight, one of them said, but they knew him just the same and remembered answering that call.  

What’s the moral here?  It’s not just about how many people were involved in rescuing one man, those like the flight nurse in the first moments after the accident and now the fire crew, who were called by someone—we still don’t know who—who ran down City Creek canyon to the bottom, where you could get cellphone reception, and were there within only a few more minutes—but that they still remember.  Part of our continuing desire to piece together the fragments of what happened at this accident, so long ago, is to give some real thought to what rescue means—not just for us, but also for them. 

 

 

 

 

Practical note:  Peggy started to post this from the Paris airport en route to a conference in London, but somehow it didn’t quite work.  She’s back home already--quick trip! (This has some elements of getting back to "normal.")  But Brooke’s sister Lisa and niece Isabelle was here for a much-anticipated and excellent visit while she was gone.

 

Help Wanted

HELP WANTED

This is a want ad, of sorts. We’ve got such a great little staff taking care of Brooke now that he’s at home that the word is getting out, and we’re beginning to get requests from other folks who want to know how we’ve done it. For example, there’s a young man named Chris Leeuw who’ll be coming from out of state to do rehab at Neuroworx here, where Brooke is now also beginning outpatient physical therapy. Chris is 28, a reporter for a television station in Ft. Wayne, Indiana and more recently a consultant for ChaCa Search, Inc., a new business venture where 20-30 thousand human guides throughout the country answer any question through a text message.

Chris was injured in a freak swimming accident in southern Indiana on a kayak excursion last August 8, 2010 and suffered a spinal cord injury that left him paralyzed from the neck down. He has been in acute rehab for about 2 months and then in sub-acute rehab for 4 months and has gained remarkable movement and strength in all limbs. However, he has a long way to go for ultimate function and self-dependence. He is coming with his mother, Monice on February 16, and will be looking for someone to help them for several hours in the mornings, 7-10 am, and again in the evenings., 7-10 pm. He is able now to feed himself and walk with a walker, usually needs just one cathing at the end of the day to completely void the bladder, and also needs help with suppository and bowel program and with showering. I f anyone has experience with ranging muscles in arms and legs, that would be valuable, but not necessary.

Chris and Monice will be staying in an apartment owned by Neurowork in Rose Park, just off the freeway so it’s easy to get to rehab. You can contact them at mleeuw@aol.com, copy to me at battin@utah.edu if you will; more details of his life and journey can be found at the website:

click "visit", password is "chrisleeuw"

Not long after, there’ll be someone coming in to Neuroworx all the way from South Africa; he’ll also need help. Brooke and I will try to be something of a clearing-house for folks who are available and have some experience with spinal cord injury; we’ll pass on any information you send us to Dale Hull MD at Neuroworx. And Katie Beard, would you let us know how to reach you; PeekYou’s Pople Search says it has 349 people named Katie Beard, and though Brooke and I both remember you very well indeed, we don’t know which one of the 349 you’d be.

You can probably guess from this account of our own staff that things are going generally very well, but have been very very busy. More news soon.