The “Trip of a Lifetime”

By Elizabeth Jones, Guest Writer

“We tell ourselves stories in order to live.” Joan Didion, living with MS since 1968

In 2002, I was diagnosed with relapsing-remitting multiple sclerosis. In RRMS, also sometimes just called relapsing MS, new or more symptoms can appear. This is known as an “attack” or a “relapse,” and is followed by a period of recovery or “remission.” A remission is when symptoms partially disappear or go away completely. About 85% of people newly diagnosed with MS fall into this category.

That’s what I live with all the time, every day.

Recently, I had the trip of a lifetime in Denmark and Sweden. While it was a continuous reminder that I no longer have the stamina I once had, I have the desire and ambition to travel, borne of a career directing photoshoots all over the world for the hospitality industry. Regardless of where I went – air, land or sea – Jane, my Alinker was ready to go.

My love affair with Sweden

I have eight very, dear Swedish friends who were not surprised to learn my Swedish lineage on my father’s side dates back to 1793 when my third great-grandfather, Johan Fredrik Landerholm was born in Ostergotland. This may explain my passion for Sweden.

As I write this, I sit in front of six framed, cherished photographs I took in 1998, my first trip to Stockholm. Photographs of manhole covers, a project called “Street Pictures”. Pre-diagnosis.

My second trip to Sweden was my first Midsummer in 2002, only months after I had been diagnosed. I stayed with Fredrik and Jonas on Tynningö. I remember intramuscular injections, the sun seeming to never set, rowing a sinking boat to deliver a plant to our celebrity friends.

The third time, 15 years later, I stayed with Nilla and her son Oliver at their apartment in Sodermalm. It occurred to me, just weeks before my trip, I should warn Nilla, I was using a walking stick and not moving around like I once did. She instantly and graciously replied that she also owned a cane since her knee surgery.

Now, on my fourth journey to the Kingdom of Sweden. I’m slower and weaker. My walking stick is no longer a fashion accessory and this time I am bringing an Alinker, a walking bike. I often say that revealing an MS diagnosis is like coming out of the closet, again.

Strategize is a good word for my travel plans these days. Letting the airlines know, I’m disabled and bringing an assistive device. Giving myself plenty of extra time, no longer walking with my NYC gait. Packing light, using a backpack instead of a tote, trying to maintain some sense of style. Honestly, I don’t like to ask for help, my strategy has always been to find ways to get it done without assistance.

I’m learning to accept help and to stop apologizing. What phase is that?

My Journey Begins

It’s pouring rain and my bags are perfectly packed. My dear friend Kimberly is driving from Pennsylvania to pick me up and take us to JFK. Thinking she will arrive at 4 p.m., I turn off all the lights, make sure the windows are closed, and the plants are watered. I gather my suitcase, backpack and Alinker and begin to make my way downstairs at about 3:30 p.m.

Lucky for me, my neighbour and his son are arriving home at that exact time. His son gallantly helps me get on the elevator and downstairs. Amid all my dragging and bumping and banging my phone rings; it’s Kimberly, there is an accident and traffic, of course, and she won’t get to me for another half-hour. So I sit on my Alinker with my bags in the lobby, greeting and chatting with my neighbours for 45 minutes. Kimberly arrives, it’s pouring and we now have to get my stuff into her car. Fortunately, another neighbour happens by and assists us in fitting everything in. A bit banged up and soaked, we’re off!

I’ll skip through the first time travelling with an Alinker, airport check-in and the 8-hour flight except to say that I flew steerage (budget) and Kimberly flew business class (claustrophobia). I magically had the entire row of three seats all to myself. The best thing about taking an 11 p.m. flight from New York is that you wake up in Copenhagen a little after noon.

Searching for the Little Mermaid

We take a cab from the airport, driven by a former university professor of history, who gives us a 25-minute lesson on various Danish chronicles and architecture. Moments after arriving at our hotel on the iconic Nyhavn, we agree that our first meal in Copenhagen has to be a platter of seafood: lobster, crawfish, prawns, oysters, mussels, stone crab claws and really not-needed French fries.

The next day, Kimberly uses a bicycle supplied by the hotel to tour Copenhagen, while I find a nearby café I can roll to on my Alinker, sip coffee and write postcards. I do not want to hinder Kim’s soaking up any part of the cities we are visiting. I’m perfectly happy people-watching and doing a little old-fashioned, letter writing. Directions to the café sound simple enough. But I find that if my sense is to turn right, I should definitely turn left. After more than 20 minutes of rolling on Jane (my Alinker) left and right and back and forth, I find The Union Café (less than a five-minute walk from the hotel). I park Jane next to all the bicycles and head inside, since the sun is shining directly on the tables on the sidewalk.

I’m reading The Year of Living Danishly and it has already become clear why Denmark is the happiest nation in the world. No need to lock my Alinker or your bicycle, zero theft. I can’t see even a cigarette butt on the streets. There’s absolutely no litter. It’s so clean it seems to sparkle. After only 12 hours in Copenhagen, it is clear an unattractive Dane does not exist. Everyone is beautiful, fit and tall and happy. 

Before we begin our trek, we sign up for a Canal Tour in the late afternoon. I’m not sure how far we walked/rolled but Kimberly has to push and pull me up hills and across cobblestone whenever I am too tired and overheated. I learn how much fun it is to ride downhill. (Although the last time I drove down a hill the brakes didn’t work very well and I had to drop and drag my feet to stop). I suddenly feel like Fred Flintstone.

We never found The Little Mermaid and hoped we would see it on the boat tour, led by a handsome young man named Thor. (You just can’t make this stuff up.) After a relaxing tour on the canal, sipping Carlsberg and still not seeing Den Lille Havfrue, we go to yet another boat for a dinner of Pølsers.

Dancing at Midsummer’s Eve in Môlle, Sweden

Friday morning, Midsummer’s Eve, my dearest Swedish friend Anna-Lena picks us up and we drive on to a ferry that takes us to Malmo, Sweden. We go to her home in Mölle, population 715. Since it’s almost time for the Midsummer’s Eve celebration to start, we drive straight to the Maypole. We’re the first to arrive and it‘s wonderful to see so many Swedes with flowers in their hair wearing traditional garb. My friend Gunilla (Nilla) Gunnarsdotter (“My Original Swede”) and her 11-year-old son Oliver are first to arrive. Next, Liselotte and Anna-Lena’s son, 8-year-old Rubin, arrive with a basket filled with champagne and champagne glasses.

My first Midsummer was in 2002, right after I had been diagnosed. Being in Sweden for my second Midsummer with my closest friends fills my heart. After the maypole is raised, there is lots of singing and dancing. We pack up and head to Anna-Lena and Lisa’s home for more singing and drinking and of course, pickled herring. I love the singing; every song ends with everyone looking in each other’s eyes and simultaneously shouting Skål and drinking from a selection of Snaps. The food was delicious, from the smoked salmon to a dessert of raspberries, ice cream, whipped cream, meringue chips (new to me) and chocolate sauce. My favourite, even with all the jesting about the pickled herring, was — the pickled herring!

Hiking in Naturum Kullaberg

The next morning, if I could have, I would have run down the stairs because I knew my favourite breakfast would be there. When I arrive, still in my pyjamas, Leksands crispbread and whipped butter and Präst ost (Priest cheese) are waiting.

The plan for the morning is a hike in Naturum Kullaberg, a terrain of beech trees, along dramatic cliffs lining the sea. My new reality: everyone will hike, Nilla will drive me and my Alinker through the woods and meet everyone else at the mid-point of their hike to see if the boys want to continue for the rest of the hike or join us in the Range Rover. Oliver decides to join his mom and me to ride to the lighthouse. I’m so glad he did because he pushes me up a very steep hill. After we reunite at the lighthouse, of course, we go for glass (ice cream) before we head home for lunch. Saturday in Mölle is yet another beautiful day. Almost the entire trip the temperatures are in the mid to high 60s and sunny, just perfect.

The Beloved RIB: Rigid Inflatable Boat

That morning we drive down to the harbour to take a ride out on Anna-Lena’s RIB, Rigid Inflatable Boat. First, she takes the kids out and then Kim, Nilla and I are to go.

I’ll be honest here; I did not go because I was feeling self-conscious about my dwindling mobility and was dreading getting on and off the RIB and the production I seem to create. I can’t stand the attention. Those are the moments I really hate MS. Now, I wish I had gone out on Anna-Lena’s beloved RIB.

Kim had said to me how much she loved Swedish Meatballs, so I had suggested I make them for dinner that night. Of course Gunilla and Liselotte started talking about their meatball recipes and methods for making perfectly shaped meatballs. So that afternoon while Anna-Lena and went to her parents for tea, Nilla, Lisa and Kimberly made the Swedish Meatballs. Anna-Lena’s mother (also named Gunilla) and father, a doctor were lovely and it was easy to see where Anna-Lena gets her very kind and very generous soul. On the way back we picked up the Lingonberry Jam, of course. Best Swedish Meatballs, ever.

Sunday night in Mölle, Kimberly and I take Anna-Lena, Lisa and Rubin to dinner at the Grand Hôtel Mölle. The hotel is historic, charming and located hillside above the harbour. First, we sit outside on the terrace for cocktails and then move into the windowed dining room for a locally-sourced, delicious dinner.

Visiting Stockholm

Our plan is to take the train to Stockholm. But Anna-Lena suggests flying, a short flight instead of an all-day train ride. Scandinavian Airlines has flights twice a day from Mölle to Stockholm.

We land at Bromma Airport, only a 20-minute cab ride to Stockholm. When we disembark, I stand on the runway and see a few towheaded young men unloading my Alinker from the cargo hold. They spot me leaning on my walking stick and before I know it, I’m on my way, on my Alinker.

While in Stockholm we visit the National Museum. We walk around together, me on my Alinker until I grow tired. After getting a bit lost, I land in the sculpture gallery, dismount and rest. Next, Kimberly and I walked to the Grand Hôtel with plans to meet Nilla at the Cadier Bar. There is a lift at the front entrance I am happy to use.

That evening, our last night, we met my Swedish brother, Jonas and his handsome, musical husband Niklas for an amazing dinner, on the waterfront at the charming Tegelbacken. Our many coursed meal was beautiful and delicious. We stayed until past closing and then the boys walked us back to our hotel.

The next morning, we get organized, pack up and head to Arlanda Airport, sadly, for me, to return home. I definitely have thoughts of relocating to Stockholm, more and more every day.

This trip helped alleviate fears about continuing to travel. I have a tin pan list (my bucket list) of places I’ve imagined visiting. It’s long and I was afraid I might never make it to so many destinations. Where there is a will there is a way. Shortly after I returned from Scandinavia, I had friends over and they couldn’t wait to tell me about the apartment they just purchased in Barcelona. I’ve always wanted to go to Barcelona.

If You Go

Norwegian Air
JFK – CPH Copenhagen Airport direct flight

Hotel 71 Nyhavn
Hammerichsgade 1, 1611 København V, Danmark

Grand Hôtel Mölle where we ate dinner our last night in Mölle and it looks like a great spot to stay

Ängelholm–Helsingborg Airport – Bromma Airport, Stockholm
Braathens Regional Airlines  – BRA

Ängelholm Helsingborg Airport offers scheduled services to Stockholm — both to Arlanda and Bromma.

Hotel At Six
Brunkebergstorg 6, 111 51 Stockholm, Sweden

Norwegian Air
ARN Stockholm Arlanda Airport – JFK direct flight

Today, MS symptoms have changed Elizabeth’s abilities to do some of the things she loves but her artistic vision and creative curiosity have only transitioned in new directions̶. Two decades after Elizabeth’s first MS symptom she is learning to horseback ride through equine therapy, swimming laps at the YMCA, writing and illustrating a children’s book, tracing her Swedish/French ancestry, blogging about cooking recipes, collected abroad and developing marketing for non-profits.

Read More on Accessible Travel