February 2nd is a pretty loaded date for me. It first struck a major notch in my memory as the day my grandfather (Dordie, my mother’s father) passed away. I was about ten then, I think, and the date might have been gotten lost forever if it weren’t also the weirdest noted calendar day of every year, Groundhog’s Day. (I’m noting this for the non-American readers, whom I expect will just shake their heads slowly.) But the date was even more securely notched when I met and married Vernon. It’s his birthday!
He usually remembers the date. But he thinks he’s turning 39 today. It’s hard to convince him otherwise. He sort of rolls his eyes in the end, as if to say, “I surrender…but only because you don’t understand.” He’s one to learn from.
This morning, I called the ambulance dispatcher, not just to remind them to pick up the blue bag, but to let them know it is Vernon’s birthday. I asked them to “make kind of a big deal about it”—whatever that means. My sweet friend Barbara, who has been volunteering her time to sit with Vernon at dialysis whenever she is able (she also works full time, it should be said) called me mid-morning so I could connect with my husband. He sounded clear and happy, reminding me to meet up with him later. I promised I would. Then Barbara texted me to let me know that not only was Vernon in a great mood and mental state, but that one of the technicians had brought him a balloon and had gathered the troops to sing him Happy Birthday. Win for the morning!
I made it up to Hoag Hospital just in time for Vernon’s radiology appointment. The same EMTs that transported him this morning had brought him to the hospital. It’s always a fun thrill to see Vernon, I admit. It wouldn’t matter if I arrived as dolled-up as I could manage or if I’d rolled out of bed after not having a haircut for months, his response would most likely be the same. He would be beyond delighted to see me, straight for the eyes. And in those moments, I feel the same way. Completely.
I noticed how on our entrance to the room, the computer read: Vernon Paul Adams 02-02-2016
I thought of it like a really expensive birthday cake! Imagine those candles, if you will.
Vernon also made a point of letting everyone know that I was “the wife…the main family member, the most important person here, the one to talk to.” I can’t say I didn’t feel slightly gratified.
On to the main event. Here is a picture of the speech therapist (assistant/in training) explaining what Vernon should expect. This is his third time doing the test, but I knew he wouldn’t remember the others. I was only allowed in the room beyond this one, but I was able to watch the x-rays as they came through the screen.
It won’t make much sense here anyway so I will try to be brief. I’d seen this procedure twice before so I tried to give the information I thought most helpful to the speech therapist on site. But what I said and what Vernon remembered to do (if that was even possible) made little difference to the outcome of the test. This was completely out of our hands. All that hoping and praying and preparing and practicing seemed to matter little. Or maybe it did. This all depends on how I chose to look at it. Which adventure shall we choose?
Vernon didn’t choke or even splutter through the procedure. I was so impressed that there was no coughing unless the attending speech therapist asked. Vernon was GREAT at following direction, so bright eyed and eager it brought me to tears to watch. I was so proud of him. I thought about this day, one year ago, when his friend and colleague Dave had come to visit from the UK, but Vernon had been sent to the hospital for infections that would keep him from improving for many months, that would indeed send him backwards in his recovery. I couldn’t have been more proud, watching him today. He has come back so far since last February.
But love wasn’t enough this time around. The speech therapist told me that he can’t tolerate much more than an applesauce texture. The problem is that his swallowing defaults toward the wind pipe, and he doesn’t have the sensations to recognize if he is aspirating or not, which makes it very dangerous for him to eat or drink. She did say that she would recommend speech therapy and because it was his birthday, I suppose, she added that he was too young to give up on yet. How nice of her.
Unfortunately our current system has given up on him except for this little window in the far corner. If he get’s proper speech therapy, it is possible that he can work his swallowing muscles back to a state in which he can endure a more normal consistency. It could take ten months, I was told, if all goes well. But we know the whole ‘going well’ song. It doesn’t mean much for us. Back Forth Back Forth Same Worse Back Forth Better is more like it.
This is not the outcome I had hoped for. But I was still moved by his earnest desire to do things well and to follow directions though he didn’t know what was going on. That showed a huge leap forward. My heart breaks for him too as I know he isn’t as close to eating and drinking as I had hoped he might be by now. But at least we can start getting help…though I admit I am not very confident of it at the moment.
Next year, Vernon will be 50. We’ll try to get him there in one piece. What are the chances he’ll be able to have his cake and eat it too?
“To eat is a necessity, but to eat intelligently is an art.”
Julia left for England today after a 2.5 week stay. I suppose she will be nearly half way there. I just made a cup of tea…drinking it alone just isn’t the same.
Julia came at the perfect time. It was a pretty low-drama couple of weeks for Vernon—other than the odd call from the ER or the multiple times his dialysis bag didn’t arrive with him. I was so grateful to get all the surgeries finished before my friend arrived. It was a great couple of weeks filled with conversation, laughter, tears, adventure, tea and more tea.
But for Julia, it was a sort of working-holiday. Perhaps volunteer vacation? How are those for oxymorons? Though she was here to enjoy her time with me and we did try to take some fun days out, she put herself to work in the house almost as soon as she arrived. She helped me organize boxes, move things into the house from the garage that we hadn’t touched since we moved in last January. She helped organize cupboards. She helped with dinner AND dishes. She even accompanied me to a wedding as photographer’s assistant. We did lots of drawing with and without the kids. She helped me purchase a vacuum cleaner, something I kept failing at on my own (third time was the charm.) She was great with Vernon…let alone every other friend she met. With her British accent and carpet bag, she was a bit like our own personal Mary Poppins, cheerfully sweeping in to get the house in order.
Look how much fun everyone is having washing the car! See what I mean?
She even got Maki into the idea of cooking a meal a week. Here he is making us a breakfast-for-dinner style meal. My favorite.
He was pretty pleased with himself. Long may this continue.
When you invite someone stay with you AND join you in your daily life AND allow them to tidy up around you, its expected they are going to get to know you a lot more than most ever do. But its a wonderful thing to be so accepted as is. She has been such a good friend and guest and I know my secrets are safe. Also its been fun to see our culture again through British eyes. We’ll miss you, Julia.
Tomorrow is Vernon’s Birthday. We’ll be celebrating at Hoag Hospital over a Barium Swallow Test. That would be a major gift if he passes.
When I took Vernon out for a drive last week, it was with the intention of doing it regularly enough to get Vernon used to things like sitting up in a moving car, not succumbing to motion sickness, repeating the experience enough to remember it longer. It’s a journey-not-a-destination kind of thing. My friend Barbara, who sat with him last Saturday during dialysis, told her that he remembered the outing, but when I asked him again on Sunday, it was gone from his mind. Still, it seemed he remembered something about it for two days—I would like to think that’s an improvement in memory retention. It’s always hard to tell.
Thursdays seem to be the only day where there is a space for me to take him out in the car. This time we were a little more confident, getting him in the van without much messing around or asking questions of the staff. Once we were on the road, Julia noticed I drove a little faster, not checking back with him as often as I did last week. I knew she was next to him, and we all knew what to expect.
“We are going to the same place we went last week, Vernon. Can you remember what that is?”
“No, I can’t remember, but I’m looking forward to finding out what it is.”
We twisted around some of the smaller streets of the Balboa Peninsula, and before long he was calling out directions:”Left to the sea.” Often he was right. He was watching through the windows and seemed to have a sense of general direction. Through his sunglasses, its hard for me to know if he has his eyes opened or not. It’s always better when he does because I know he is more likely to be present with us.
We parked in a similar place by the boardwalk, where we had a good view of the beach. He seemed interested for a little bit but must have gotten confused on a conversation we were having about a possible wheelchair for him in the future.. He may have thought we meant for him to get out in a chair immediately for he suddenly became panicky as if he was stuck inside his seatbelt. I couldn’t tell if his movements were involuntary or not but it did seem to be a different reaction than I’d seen before. We managed to calm him down and decided to drive back. It was a shorter trip than last week, but the intention isn’t just about having a nice time out. It’s mostly about becoming comfortable with this kind of mobility. It goes both ways. Vernon isn’t the only one learning here.
We went back, still able to call the trip a success.
Vernon still wanted to sit up, though we were back at Mesa Verde. We parked him up against a table and Julia set up some art supplies for him. He is very particular about the colors and mediums he asks for. “Pencil! Red Paint! Water!” But once he got painting, even just a little bit, he seemed to relax. We decided time upright in the sunshine with company was more important than time in bed with the mat (which I had also brought.) Eventually, he fell asleep in the sun. But not before remembering that “If its Thursday, I get my hair cut today.” Not sure when Joe had last told him that, but apparently he was right. Hopefully that happened after a nice nap.
In upcoming news, Vernon has another Barium Swallow Study scheduled for next Tuesday afternoon, his birthday! Though this will be his third swallow study, it is very important that he passes it this time or he will receive NO speech therapy (which he hasn’t received for at least six months) nor will he be allowed to be fed food or drink. If we are to see active progress in this area, he needs to pass this test.
Tuesday, Vernon had an appointment in Fountain Valley with Dr. Duong, the vascular surgeon, who checked up on Vernon’s arm and it’s healing. It finally had come down from the swelling that began three weeks ago to a nearly-normal size. Dr. Duong looked it over and pronounced his fistula ready to use in two weeks time. I can’t imagine he is mentally ready for it (what with all his twisting around to get comfortable in dialysis) but this seems to be one of the hoops we have to move through. I just looked back in the blog for the date, and its been nine months since the dialysis fistula was first put in his arm. I have some dark thoughts about it all, but have felt I have no choice but to allow this to happen to him. It’s just another reminder that I really want him to have a kidney transplant so he can avoid all this. Dialysis takes a ridiculous amount of time and energy from his life (time he could be working on recovery) but it keeps him alive. So there is that.
Long mornings like this are always difficult, but Vernon was especially uncomfortable on his gurney, the straps in which he had gotten his arms and legs twisted and tangled. By the time he got to dialysis, he had been on that gurney for almost three hours. I suppose the hard chair was a welcome change. Lois and Marsha, my mother’s good friends (and mine!), changed guard with us a little later. Vernon seemed happy for the distraction.
On Wednesday, we sat with him during dialysis again. I was so thankful for Julia’s energetic reading to him (I’m sure he was too) while I was able to finish editing a batch of photos from a wedding I shot recently. If anyone reading this has thought about giving their time to sit with Vernon for a two-hour spot (five opportunities a week!) but has been nervous about getting started, I do recommend bringing a friend, doing it as a team. It’s easier and makes it more fun. He is easily distracted but loves the company, so two can make it easier. We still have the signup genius option—so if you’d like to sign up, click here. It tends to be the same group of about seven people, which includes both of my parents and myself. I’m thankful for the time and care of those people, but I want to extend the opportunity to others who may have been trying to think of ways to help out. (Wishful thinking on my part, perhaps, but worth a try again!)
On our way up, we stopped by the coffee stand at Mission Hospital, hoping to catch my old friend from the coma days, David. Sure enough he was there, bringing his unique service of a smile and a little psychology to his customers: patients, family, and staff. Just being there for a few minutes made me realize how much personal time has actually passed in this journey…though on paper its a mere 20 months. And he still gave us coffee for free, just like old times.
You may have gathered from the blog that I have been staying with Allison and the family for a couple of weeks. Having known Allison and Vernon in the UK I have been following their journey throughout. However I must admit to being a ‘lurker’, reading and waiting for every new post as I am not comfortable writing so publicly.
My first visit to the US has opened my eyes and it has taken me a while to adjust to the sheer openness of the culture. I have to say I am learning a lot. Allison is a fantastic host, managing to take me to places as well as the usual school run, hospital appointments, photo shoots and the usual food shopping and house stuff.
I have seen many changes especially in Maki who I have to say has grown into a confident young adult. He was a shy young boy before who would keep his own company and play with Lego. I can see many similarities between him and Vernon: their sense of humour for starters, a competitive streak, a desire to discover things, and an eye for detail and design.
What has been the highlight (among many) of my visit so far was the day we went to see Vernon and he was so excited to see Alli. He was physically shaking with excitement and shouting her name. It was so beautiful but the best was when Alli and Justine got on the bed with him and were giving him kisses. The photos just don’t give the moment justice, Vernon looks as if in pain when in fact he is just so in the moment, it was magical. The video explains much more than I can here.
To witness the commitment of all that Alli does is huge. But to understand and witness the love and care that is given consistently is a deeply moving. I have met so many of the backup team so to speak, the friends who sit with Vernon when he goes to dialysis 5 days a week, those that pick up Justine from school when Alli is working on a photoshoot or at the hospital, and the really close ties that Maki has with his rock climbing buddies who are like a second/ third family to him.
It has been an experience to be here and see behind the scenes. It isn’t always easy and every day is a moveable feast. I am amazed at how much Alli puts into the day managing to balance work, rest and play. Maybe she needs sponsoring from Mars. (A reference to Cadbury’s Mars bar advert – ‘A Mars a day helps you Work, Rest and Play.’) I forget that the audience straddles our two cultures and some references are missed.
I could honestly go on for pages here so I will quit before you all fall asleep but I must say thank you to Alli for introducing me to such a warm supportive circle of friends and family who I can say are a lifeline not just for Vernon but the whole family.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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