It Takes a Village...and it's Called Ardersier
Authors' note:This is the 6th of a series of blogs about our adventures traveling in Europe together in 2019. They will appear here on the fourth Thursday every month, and will eventually be compiled into a book entitled: Taking Chances, or How to See the World Living with Chronic Illness.
David, Linda and I have many things in common. Not least, the wicked sense of humor we share.
Speaking of wicked humor, we plotted how we could keep the teen rugby star from going to school the day we were to check out of the Strathburn. Alas, he was not available to carry the dialysis machine,etc. Instead, David artfully coaxed two chambermaids, both large ladies, into hefting the machine onto a serving cart and then directed them to a side door where he had our van parked, ready to receive the machine and medical supplies. David's experience in his teenage years helping on his father's bakery route proved invaluable in packing our seven-passenger VW rental van.
Off we went to my first visit to a single malt whisky distillery and then onto Ardersier.
We spent two enchanting hours at Glendronach, and refused any tasting as we were driving. Instead, our guide gave us a to go package for later sampling in our hotel.
After we had driven all day in the Scottish Highlands we came down a tree-lined hill with the water of the Moray Firth on our left and the landscape rising up steeply on the right side of the road. Suddenly, instead of being surrounded by trees, the road was flanked by old, two-story houses made of stone, some of them plastered, either white or the natural color of plaster, a sort of brownish grey that you find widely in Scotland.
We had arrived in Ardersier, a village north of Inverness. The small country road had turned into High Street. After passing a shed that looked like a prop in a Western film, with a bright red front too large for the building behind it, we passed a church—made of stone, of course, but also boarded up with a chain link fence in front, a sign saying "Danger. Keep out." I wondered if there was any chance one might be assaulted by the Holy Ghost but I didn't say anything.
A few houses past the abandoned church was our home for the next few days: The Star Inn, an unpretentious whitewashed building like so many of the other ones on High Street, reminding me of countless TV series taking place in small villages in the British Isles.
The main or high street in Ardersier. No traffic lights. Our rooms are in the stone building at the right, built in mid-18th century, but decorated in today's Hollywood glitz style with ultra-modern marble/glass bathrooms and radiant heat. Nice and cozy, if a bit garish.
The Star Inn, where it's always 5 PM—happy hour—and one can find good cheer and nice people.
We walked into the inn, or rather the local pub that is the nerve center of the establishment. Our rooms were across the street, in a building made from large granite rocks that looks several hundred years old and probably is. The entry is from the backside of the building on Stuart Street, the other main drag in Ardersier. The town is long and narrow and runs primarily along these two streets. There's a ramp up into the building, rather impressive for a six-room inn.
A lovely footpath along Moray Firth. A firth is Scottish for "bay." Ideal for wheelchairs also.
Moray Firth was right behind the row of houses on the other side of Stuart Street. A number of footpaths led down to a walkway along the water that seemed to go on forever, ending in the North Sea at one end and the river Ness at the other. I like strolling along the water—almost any water. It has the advantage of not being hilly and that was also the case here.
We needed help getting my machine from the car to my room and the Star's young chef volunteered for the job. He left the kitchen of the small but cozy restaurant adjacent to the pub, and, when I finished registering, he and David carried the box between them, sliding sideways though the doors between the entrance and my room. The building was definitely not intended as an inn when it was built, with its odd angles and tight corners. But it works. And if I can get around the machine, I can also get into my room.
As they placed the machine next to my bed, the chef looked at the box, which resembles something a touring band's roadie would handle. He asked what's inside and David told him it's a hemodialysis machine, the only portable one on the market. David also told the story of how he was on dialysis but now has a new kidney thanks to a transplant. David is a natural storyteller so I let him do the talking. But I did observe that the chef seemed more than naturally interested as they were unpacking the beast and setting it up for me. But I thought nothing more of it.
Some find villages claustrophobic. Ardersier was anything but. The easy warmth and friendliness of the residents made one comfortable. The inn radiated an atmosphere that engendered connection and conversation, an invaluable commodity wherever you find it.
I must say I was truly delighted by Henning's reaction to Ardersier and the Star Inn. When I planned the Scottish part of our month-long trip, I was always conscious of finding accommodations suitable for a person in a wheelchair, and his added requirement of carrying a portable hemodialysis machine and supplies for it. I was very familiar with Henning's machine. I used the NxStage dialyzer for the last 3 ½ years I was on dialysis. It changed my life.
It's ideal for traveling. It weighs 70 pounds and is the size of an average desktop computer terminal. It takes only 20 minutes to set up and 5 to break down at the end of treatment, which can last up to 8 hours, if one does nocturnal dialysis like Henning. The dialyzer filters and bloodlines are all contained in a throw-away cartridge and the required exchange fluids are premixed in sterile pouches. It fits snugly in any hotel room and runs on normal current. NxStage's tech help is staffed by experts reachable by phone day or night, who are always helpful and can get one out of any jam in minutes.
The NxStage dialyzer gave me back my freedom to dialyze when and where I wanted during the years before my transplant. The change in my health after going on home hemodialyisis was phenomenal. In a matter of days I was feeling stronger and no longer continually tired. I went back to working daily in my woodworking business, which meant I could actually take on new projects and finish them in normal time. Daily treatments meant that my blood never got too toxic. I was able to open my menus to a wider variety of foods and reduce my meds. I also put on much-needed weight as a result. Best of all, I could travel again without having to book time in dialysis clinics wherever we went, which was not always easy.
When I was planning the Scottish part of this trip, I sought out hotels and B&Bs that offered rooms totally accessible for a person in a wheelchair, and no or few stairs. That means bathrooms with shower spaces and no tubs or stalls, and sinks at chair level. In big cities, like Glasgow and Edinburgh, it's relatively easy to find such accommodations in commercial hotels. But, I wanted Henning to experience the rural Scotland I loved with its small, picturesque villages and country inns. As Henning related, Ardersier is such a place, nestled on the eastern shore of Moray Firth. It's old, and our rooms were in a building built in the mid-18th Century, not atypical of the U.K. It's a big part of the nation’s charm.
In the process of seeking wheelchair accessible accommodations, I came across many inns and B&B's that claimed to have such rooms. But when I made further inquiry and asked for photos, most were not obliging. That was always proof not to book rooms there.
The Star Inn was the total opposite experience. Even though it had only six rooms, I was assured by Kate, the manager and owners’ daughter, that such a room existed and she even provided photos of the bathroom for me. And all the rooms had been recently remodeled. That's Scottish hospitality and why we have visited the country four times, and would go back again.
The night of our arrival in Ardersier the disposable blood filters for my dialysis machine stopped working. I had just opened up a new box of filters and, when the first two had problems, I assumed that the whole box was faulty. This was a serious problem that could easily have cut my trip short, if it wasn’t for good friends in high places.
The next morning I called Denmark to see how soon they could send me a new box of cartridges. It was possible to send them the same day. But nobody knew how soon they would arrive. That could be several days, with no guarantee.
After pacing up and down the floor in my room, I wheeled out into High Street to have some more room to move. The weather was typically Scottish, it didn’t rain but wasn't dry either. Something between a fog and a drizzle hit my face as I went up and down the empty street. It might have been called High Street, but all I could see is a pharmacy, McCabe's convenience store, which doubled as post office and Western Union outlet and, a little farther down the street, a humble hair dresser—ladies and gents.
An idea struck me… I knew a nurse down in England who I thought might be able to help. She answered my instant message immediately and asked, “Are you by any chance near Inverness?”
Now, Inverness might be considered the capital of the Scottish Highlands, but it is a town of only 64,000 people. It also happened to be 10 miles from Ardersier where we stayed—right on our way to Dunrobin Castle, our planned outing for the day. The only hospital in Scotland that used the NxStage dialysis machine was in Inverness. So, my friend arranged with a nurse there that I could get a box of cartridges, which we picked up on the way. Serendipity struck again for the intrepid travelers.
This is typical of how I deal with difficulties in my life. Because of my circumstances, I have learned I cannot do everything by myself all the time. And whenever I would ask the right people, I would learn something new. So I was never afraid to contact people to ask questions about their work or their opinion about this or that. This led to me having a rather large network of some of the top experts on all sorts of issues in kidney disease, some of whom I would even call friends—even if we rarely see each other.
One such expert was Rich Berkowitz, who had founded Home Dialyzers United, a NxStage user group in the U.S., and was a leading patient advocate in the U.S. We soon became really good friends over the phone. I wrote a few blog posts for his website. And one day after I had started dialysis, he asked if I would like to come and speak at their conference in Orlando, Florida.
A few months later I found myself in a large hotel in Orlando. Several times, Rich had told me excitedly that Dr. this-that-and-the-other would be speaking as well. I had no clue who he was talking about, but soon learned they were all home dialysis bigwigs. The first day there was a meet-and-greet reception where Rich introduced me as this amazing fellow patient from Copenhagen and told me a little about why they were important as I met them. Meeting people in such a setting is priceless.
This work also led to my being asked to meetings and conferences in Europe. I slowly started to know people on my side of the continent. Traveling so much gave me an excellent relationship with the company that sold NxStage dialysis machines in Scandinavia, Nordic Medcom. Without them, I would not have been able to do what I have done for the past 7-8 years.
I still communicate with many of those in my extended network. Others I haven’t talked to for years, but know that if I ever need their particular knowledge, all I need to do is send them an email and they know exactly who I am. Networking pays dividends when you need them the most.
With my dialysis machine again in working order, we continued on to Dunrobin Castle. The route was beautiful, and Scotland was all I imagined it would be with its green rolling hills, its lochs and its firths. I was in my element.
My love of nature started in pre-school in the late 1960s. My entire pre-school was going away to camp for 2 weeks in the summer. Since I grew up in the city, this was going to be an exciting adventure with a visit to a real farm—back when small-scale farming was still a thing—and to a windmill producing flour.
In the evening, the adults arranged a campfire, and we ate food from the fire while some of the adults played guitar and we all sang together. It was as idyllic as one can imagine. At some point towards the end of the evening I wandered off. I probably had to go pee behind some bushes or trees for starters. But, I became fascinated by the stars. Growing up in the city, I was used to only the brightest stars in the sky, and suddenly there were thousands upon thousands of them. I probably just continued walking, trying to get out in the open to see if it really could be true that all the stars continued all the way down to the horizon. At some point I just sat down in the field and pondered the mysteries of the universe—or whatever a 5-year-old curious boy ponders when he first encounters such a sight. There and then my fascination with nature was born.
Linda and I had a small equipment malfunction of our own in Ardersier. Our American-made electric toothbrushes, professional models, operate only on standard, 110 volt service. I knew this when I packed them for Europe, along with an old electric converter I still had from back in the 1970s. Of course, when I plugged the toothbrushes into the converter and then into a 220-volt outlet to recharge them, the converter died. What to do?
The pharmacy on High Street was about five buildings down from our inn. So I went there on a lark. What did I have to lose?
I walked into the small, old-fashioned pharmacy, which carried only medical supplies and drugs, and was greeted by a very friendly female pharmacist. After I asked sheepishly if they had battery-powered toothbrushes, she pointed to a display rack with children's electric toothbrushes. In spite of the decorations on the handles, Spiderman on one and a Minion on the other, I quickly purchased both. When I showed them to Linda and Henning they howled with laughter. They worked perfectly and are still being used daily.
The next day, I was walking on the High Street and saw the pharmacist. She asked how the new toothbrushes had worked out. "Perfectly!" I shouted, and thanked her again. That is how daily life in a Scottish village moves along smoothly.
Over our 3-night stay in Ardersier we became familiar with the hard-working but unfailingly helpful Star Inn crew, especially Kate, a bubbly young woman in her early 30s who seems to enjoy her work.
One night we finished dinner just as the restaurant staff was knocking off. They all chatted about what they were going to do that evening. One wanted to go out while the rest just wanted to go home and sleep. They included us in their conversation and asked where we come from. Surprised that we were from Denmark and Los Angeles but traveling together, they kept asking more questions and we had a great rapport. It almost felt like we had walked in on a family gathering and were welcomed as treasured guests. Upon finding out I was Danish, they were curious why I sounded so American when talking with Linda and David. I told them of my years in the Pacific Northwest and how my English accent would change slightly depending on whether I was with Europeans or with Americans but also how I would never really escape the American twang all together.
The easy warmth and friendliness of the residents made us comfortable. The inn radiated an atmosphere that engendered connection and conversation, an invaluable commodity wherever you find it. One night, David was sitting at the pub bar, admiring all the single malt whiskies available, while chatting with Kate. He discovered that she has late stage kidney disease and was going through transplant evaluation at the Raigmore Hospital in Inverness. Upon hearing that, he made a promise that we would discuss her options and whatever else she would like to know before we left.
As is typical for many in her situation, she was very nervous and didn’t know a great deal about what to expect. She was promised that they would evaluate her family to see if she can get a kidney from one of them before she needs to go on dialysis. We both thought that was a brilliant solution. We also told her how being tired and having far too little energy is normal at the stage she was at. We gave her our phone numbers and email addresses, encouraging her to contact us any time for more information. All in all, I think we helped her and made her just a bit more prepared for what she would be going through.
Henning and I work together extremely well, whether mentoring, as in Kate's case, or even writing joint projects. We are on the same wavelength and share the same values and outlook on life.
This book is our second joint effort. The first was a commentary editorial in Nephrology News and Issues. Both of us were strongly motivated to take issue with an opinion expressed in an article in the journal and fortunately the editor was happy to air an opposing view.
I first heard about Henning from Rich Berkowitz, who, sadly, is no longer with us. Rich was a child of the 1960s who never lost his zeal for a cause, and his cause was home dialysis. His organization, Home Dialyzers United (HDU), is a not-for-profit support group for people who dialyze at home, or considered doing so.
Rich was a tireless and phenomenal networker. He and Henning met when Henning attended one of HDU's annual meet-ups several years ago. I had been very active in HDU for 2 years, but had become heavily involved in advocacy closer to home in California. I still Skyped with Rich weekly. He lived in Skokie, a Chicago suburb. One day he told me about Henning and gave me his contact info. I think he knew we would click.
From our first Skype conversation Henning and I realized we were on the same wavelength. Both of us were impatient with the lack of progress in dialysis treatment, the multiple shortcomings of 3-day, in-center dialysis and the fact that dialysis patients, by and large, were not told they had other options. We also shared a love of art, culture, history and travel.
Henning and I talk via Skype at least twice a week. "How are you doing?" "What have you been working on?" We regularly send our writings back and forth for the other's opinion and edits.
Ardersier gave us time for such reflection as well as its own sort of adventure. Henning and I would happily go back there and spend some time at Kate and her family's inn again. They were the epitome of Scottish people; kind, happy and hospitable in their own quiet fashion.
Today's world is really a small place, especially with the Internet, email and online video networking. Twenty years ago, I would have never considered such a book project, such a trip, or mentoring on a different continent. Today it's a reality, and making good friends thousands of miles away is as simple as a computer click.