Yes. In retrospect, it was stupid, says Arold, to go to Ukraine when there were already signs that Putin wanted to invade the country. But, yes, “That’s hindsight.”
And besides: Arold is in a hurry. He wants to see the world because after a while he won’t be able to see anything.
Arold Dingemans (48) has Usher syndrome, which makes him slowly blind and deaf. He’s known it since he was 31, and from that moment on a travel urge has crept into his heart and head. “I want to see as many places as possible before my lights go out,” he says. Don’t ask him how much percent he still sees, he wouldn’t be able to give you the answer, because he doesn’t need to know how fast and how much he’s deteriorating. Because: what’s in it for him?
“I can see you now,” he says, “at least, your mouth and your nose. And your forehead. I have to guess where my glass of Coke is, here on the table. Seeing things up close: it’s a disaster. But behind you I can point very well where a piece of paint has peeled off the wall.” He points to a corner, lower left. Indeed: the color yellow is missing there.
Worldwide
We are in the catering section of Arold’s own gay sauna SteamWorks: he started it in 2006 in the heart of Arnhem. It’s still quiet, the business won’t open for customers for another hour. It is warm in the former school building, which has four floors, warm but cosy, the rain taps against the large windows in the roof, it smells of chlorine inside – there is a swimming pool in the middle of the old building.
Okay, back to that travel urge. It took him to Vietnam, India, China, Lebanon, Mongolia, South Africa, Egypt, Yemen, the Palestinian territories, Lebanon, Brazil, Senegal, Gambia, Bangladesh. There are not only palm tree and postcard countries in the list: he also visited places where most people are poor, lived under a dictatorship, where wars have raged or natural disasters determined fate. “I want to see the whole world, not just the places where I can stay in an all-inclusive hotel.”
On February 19, a few days before Russia invaded Ukraine, Arold arrived in Kyiv. He expected an old, dilapidated Soviet-like city. “But it was beautiful. Beautiful churches, monumental buildings, golden domes, and so clean too. I was really impressed.”
That same day, when he was standing on Independence Square in the capital, the first reports trickled in that the war really seemed to start – the next day the Russians would invade early in the morning. The media in the Netherlands sent news reports to their readers about the imminent invasion, Arold’s friends and relatives called him en masse.
Madhouse
“I was standing on that square with my help stick, the sun was too bright for my eyes and I had forgotten my sunglasses. And I also had my foot in a cast: I had surgery on my foot three weeks before, nothing serious, but you have to imagine that I was standing there, visually impaired, limping, with my eyes closed in that square, and everyone from my inner circle started to facetime me.
‘Where are you?’ (Kyiv)
“What are you still doing there?” (No idea)
‘Are you OK? (Yes)
‘Come home!’ (Okay)
That ‘going home’ lasted another three days. For example, what was a far-from-their-bed show for people outside Ukraine became a close-to-bed show for Arold. Air raid sirens, explosions, empty streets, tense soldiers. All Arold’s flights were cancelled, but he was eventually able to return on one of the last ones.
It wasn’t right
“I didn’t panic, but I slept badly. I remember my hotel had thick curtains, and I kept them closed. If an explosion broke the windows, those curtains would be the first barrier to protect me. ”
When he lay in his bed the day of his return, he realized: I am now lying here warm and safe, and all those people I saw in Kyiv less than eighteen hours ago are now in a panic.
He sighs. Sip coffee. Then: “It didn’t make sense.”
He decided to go back, to see: what can I do there on my own? “Many people thought: why? My mother was terrified. And my friends could only shake their heads.” After all, the Dutch Ministry of Foreign Affairs strongly advises against going there: the travel advice for Ukraine is negative. ‘Do not travel to Ukraine’, it says on the ministry’s site, ‘it doesn’t matter what your situation is or what good intentions you have.’
“But somehow I’m not afraid. I think it’s because of my illness. I already know that I’m not going to grow old in a healthy way. So I worry less.”
Always the victim
He took the train and traveled via Warsaw, Poland, back to Kyiv. There he met a man who showed him around in the city, Alexander. From him, Arold heard about two orphanages in the capital, where children with intellectual disabilities, such as Down syndrome and autism, are taken care of. “I immediately knew: I want to do something for them. Because you know what it is? Children are always the victims of adult behavior. In this case, one president who makes an aggressive attempt to grab land. And that makes me so angry. ”
In recent months he collected money for the two orphanages: the one boys’ orphanage has about 80 boys, the girls’ orphanage has 60 girls. “Especially the place where the boys stay is terrible. Bars on the windows, little daylight, it’s an old Soviet building and I spontaneously became sad when I saw it.”
The girls’ orphanage is a little better, “look,” he says, taking out his phone to scroll through his photos. Girls putting on their shoes to go outside, girls sitting at a large dining table, bedrooms, a living room. But there, too, they ran out of things – and especially money – since the outbreak of war.
Fifty pairs of trainers, please
“I saved an amount myself and asked the organization: what do you need? I didn’t want to give money, because I want to make sure it goes to the children. But they also immediately came up with very concrete things.”
Such as: fruits. Vegetables. Drawing supplies. Water coolers. Fifty pairs of sneakers. “Alexander and I even received a list with all shoe sizes. That’s how I knew: this really goes to the children.”
According to Arold, the shopping centers in Kyiv are ‘quite well stocked’: “It is not an occupied area, life goes on there, as good and as bad as it goes.” So Arold – who actually ‘horribly hates’ large department stores, ‘I always get lost in Ikea’ – went shopping for the orphanages.
And he set up a crowdfunding in the meantime: “It gives me a stomach ache again when I talk about it. I normally don’t mind asking for help. If I can’t see the toilet with my eyes, I ask if someone can show me the way At the station, if I don’t know what track I’m on, I go to someone who can tell me. And if I can’t hear something, I calmly ask, “Can you repeat that again?” But asking people for money? Asking them to trust me without knowing me? I think that’s quite a bit.”
“Go ahead, Arold”
But his friends insisted. Just do it. Who knows. “The counter is now at 2500 euros. And we can already do so much with that. We would like to paint the inside of the boys’ orphanage. The building needs that.”
With every euro that comes in, his plans become bigger. He wants to help more orphanages, perhaps more in the areas really devastated by the war. Places where people have it even harder than in Kyiv. “My mother will have a heart attack when she reads this… She thinks it’s very scary if I go there. While she once did something like that herself.”
What is Usher Syndrome?
Usher syndrome is a hereditary disorder of the eyes and hearing. Hearing and vision are affected. The cause of the disease is a change in the hereditary material. If both parents pass on the genes that cause the syndrome to the child, the child will have the disease. The syndrome is rare and is estimated to occur in 600 to 1000 people in the Netherlands.
Source: Radboud UMC
His mother is – Arold casually mentions – Serbian. When the civil war broke out in Croatia in the 1990s between the Serbs and the Bosniaks and Croats, she also traveled to a war zone as a volunteer to help two hospitals there, together with my father. “I was 22 then, and I remember that I loved it then. And so fearless. Just like me. My mother showed me: it’s up to you what you do with your life. Who and what gives you attention and what not.”
Arold cares about the Ukrainian orphans. With the boy who loves chess so much, but didn’t have a complete chessboard (now he did, after one of Arold’s shopping sessions). With the girl who has had to miss both her parents since last year because they died in a bombing. With the boy who has lost his parents since birth, and who now has no contact with his grandmother because she lives in an area annexed by the Russians. “And all those children have to go to that air raid shelter with their supervisors, don’t they…”
Vulnerable
“Children with such a disability are already one-zero behind, they are extra vulnerable. I realized that not everyone had a good childhood like me. So they deserve extra support.”
Does he also experience himself that way, with his physical disability: extra vulnerable? He is thinking. Then shakes his head. “No. Other people may find that very strange, but my illness makes me the happiest person there is. I have learned to accept like no other: I have very quickly resigned myself to the fact that my eyes and ears will stop working, at a certain moment. And then I started to live. Because you can only do that once. I don’t want to be held hostage by my illness.”
Head in the sand
Thinking ahead, thinking about the future, about how he will have to communicate later, he doesn’t do that. “I have had training with a cane for the blind, but for example a Braille course: I’m not doing that yet. Maybe I’m sticking my head in the sand a bit in this area, but I think it’s going a step too far. is, that see – wink at the word ‘see’ – we will see again.”
He wants to be lifted by his illness. Being driven to action. “If I had had good eyesight, my life would have been completely different.”
How?
He smiles. Less rushed, probably. And he would run into doors less often. Knock over coffee cups less often. Less likely to overlook people. Less tripping. But: “I wouldn’t have started this sauna if I hadn’t been sick. Then I wouldn’t have helped those children. And then I wouldn’t have gone to Kyiv and all those other places. Because of my bad eyesight, I’ve seen a lot more in life.”
Sunday interview
Every Sunday we publish an interview in text and photos of someone who does or has experienced something special. That can be a major event that he or she handles admirably. The Sunday interviews have in common that the story has a major influence on the life of the interviewee.
Are you or do you know someone who would be suitable for a Sunday interview? Let us know via this email address: [email protected]
Read the previous Sunday interviews here.
