This blog knows me as Ronolulu. BH and I have been friends since we met in 1982. We played board games, went backpacking, had adventures, shared an apartment, watched each other’s back, kept track of each other’s lives. BH asked me to be his best man. I was proud to do it. BH and his wonderful wife getting hitched. BH was so much in love he couldn’t stop crying at the ceremony. The good kine tears.
So ~1200 days ago, plus or minus, BH sent me an email. He said “look at this blog site.” It is going to tell you things about what is going on with me. Something is up with my brain. We’re not sure, but they think I have ALS.” I was just then going through a number of deaths in my family. I looked on the web to see what ALS meant. I couldn’t stop crying. You know what I mean.
The most important points BH made then and continue to make today is that (1) no one, absolutely no one except BH or his wonderful wife talk to their children about his illness. The second point was that the blog remains anonymous. I respect that religiously.
I had a chance to visit BH and his family two weeks ago after. Situations kept me away longer than I wanted but couldn’t be helped. As you can imagine it was pretty tough. I was heartbroken before I came to the house. I couldn’t sleep at night before the trip. I cried thinking about BH, our friendship, his life. I talked about his story on the airplane to a lady, until I had to stop. I just had to stop.
I came to the front door, wondering how I’d feel when I walked in. BH’s assistant (one of three for a 24 hour period) answered the door. In the background, through the living and dining room I saw a man leaning back in a wheel chair. I couldn’t see his head right away. I walked into the room and there was BH. In a full tilting electronic wheel chair, his feet on the table in front of him to rest his legs, his head fitting in a head rest but not wearing a head strap. A supplement bag was dripping food through a tube to his belly. He was having lunch – food through the feeding tube. It made me feel a little uncomfortable, but it was ok. BH controls the amount with the clamp wheel on the tube
A towel was draped across his chest, under his chin and a tissue was between his lips. His daytime caregiver, a very nice lady from Eritrea, was folding and replacing tissues in B’s mouth. He is constantly drooling. The towel needs to be turned or replaced because it gets wet. There is a suction machine that B needs. The message board has a special square that says “Suction.” Be sure to suction both the lips/gums, the tongue and be sure to do the roof of his mouth. This is the same guy I know. His hair is full but looks like when you’ve had the flu for a few days. He has a bit of beard growth.
I was nervous. I made a couple jokes. The first thing BH told me by writing on his sign board was ‘no humor.’ It sometimes makes him choke. Regarding the sign board – it is an 8.5 x 11 laminated piece of cardboard. One side has common words (me, my, mine, you, your, yours), suffixes and a section that can be used for pointing to letters and numbers. The other side of the board has commands in bigger squares, such as “Suction” and “Leg.” Things that I can’t remember. Basic commands to get through the day and night. On the bottom of the sheet is a single line. It says “Please say each item as I point to it.”
I learned to let him finish once when I thought BH was done. Um, he wasn’t. And he told me so. We laughed a bit. BH can rock his head no and yes. And will holler if someone isn’t paying attention. Or not listening to what he is saying.
BH asked me to make an entry in the blog. This is it. We first discussed being objective, but subjective will come to play whenever I write or think about his situation. How did BH tell me? By pointing, letter by letter, to spell the word ‘objective.’ This is a hard request, as so much emotion is tied up in this situation.
The first night was very difficult. BH wrote about this in his blog. The regular care giver could not make it, so the afternoon person and the night time person were new. BH became more and more frustrated having to teach them, even though wife and I were both there for a time. Then wonderful wife went to a book club. Things weren’t going well. B wrote “I hate first days.” That’s easy to understand. Shower, clean, change, go to bed. But how do we hold your head? The left arm needs to be on the armrest. All the fingers, but not the thumb. The thumb must rest on the side. And be very sure to take care of the left foot. Make sure it is straight. Don’t let it curl underneath because it “hurts a lot.” “I don’t trust you to hold me and put me in bed. You make me nervous.” From an earlier entry where BH was dropped, that is the problem.
I tried to be a soothing. Find out what BH needed. He kept saying “wife – now – wife – now – wife –now.” I called her. I asked if he could handle another hour with the caregives. “No” he wrote.
I tried to help negotiate. "You don’t get me,” he wrote. And there is no doubt this is true. Heck, I didn’t always get BH when we spent more time together. That’s what makes it fun. Wonderful wife came home and with the CNA got BH to bed. I stood on the other side of the bed to hold BH’s head as he was laid down on the pillow. Not too far back, not too far forward. Sorry bud.
I can’t really separate Saturday and Sunday. I hung out at the house. We read together for a few hours. Clinton’s biography. I learned how Bill and Hillary met. I did a couple errands for the family. Stuff that just needed doing. There is strong support group around the family. But things always need to be done. I played with the lovely kids. While the girl was on a playdate, the boy and I learned to juggle. BH asked us to play in his room. We did for a while, until BH got tired. It was a hard moment. I know that it is good to see his boy happy, playing. I’m glad I could laugh with boy. I love my friend that I could play with his son. It messes me up even now that BH wasn’t the one playing.
By Sunday evening I needed some time. I went to a guitar store, then went to dinner. A place where BH and I had dinner years before. When we were just starting to work. And we spent too much money that night. I told B when I got back to the house. His response was to rub his thumb and forefinger together. Yes, we both remembered it was expensive. This time I had a strange feeling while eating. I wrote in my book – “Why do I feel like everything with waitress brings me is like another visit from the nurse – random and possibly uncomfortable if not painful.” Maybe it was the wine.
The last morning in the house BH needed to take a shower because there was urine in the diaper. He can usually pee in the bottle, but for some reason he didn’t. If I were a conspiracy theorist I’d say he waited until the Nurses Assistant was gone, then peed the diaper just to watch his sister and me attempt to bathe him.
[bh: two people are to safely move me into the shower chair safely. the CNA cannot do it alone.]
I was nervous. Neither sister or I had done this, not to mention without a CNA. So we went through every step. The chair placement, the standup, the chair transfer, pulling down shorts, getting socks and shoes off. The order of the arms out of the t-shirt so the neck isn’t hurt. Don’t bend the left foot. Keep the body on the sticky web, not the smooth plastic of the chair. Get the strap on so BH doesn’t fall out. OK, we got to that part. We asked about the water, the soap, the washing, the drying. BH likes the water at Max Temp and Max Pressure. It was good that Sister and I went step by step, bit by bit and then write down all the instructions. One had to be after another. And now the CNA’s have specific instructions.
Sister said “You can wash him.” OK, then you put on B’s socks and shoes afterwards. So I bathed my friend. I hadn’t done that before. But I’d do it again, every day if I could. Just a friend helping a friend. Wet the man down, soap the man up, wash the man, rinse the man off, dry the man with a towel and finish with a blow dryer. Get him into a clean warm shirt, diaper, shorts, socks and shoes. Before he gets cold. Get him into his big chair. Whew. We all did a good job and we were all tired from the experience. And we didn’t drop BH.
What else should you know? Like how smart of a guy BH is? He once traveled to Portland Oregon to visit, but had left my address and phone number at home.
[bh: how smart was that?]
I had just moved to temporary housing and told him I was in a big gray apartment house. Only 15 minutes past the time he was to arrive, he found where I was staying. Tracked me down in a completely new city. Or how skinny and hard bodied he is? Or his command of language and concept? We all see that on the blog.
B and I spent a few private moments together before I left. I said something like “this world sucks.” B shook his head no. Then I asked, as we have before, “ride it until the wheels fall off?” BH said yes. We held hands. I know we were both being brave. I turned, walked out, gave hugs and smiles to the family and drove off. As I left I thought “be kind.” And “show love.” The rest of it is details.