I’ve recently recorded a podcast produced by my local paper, today they printed a story based on this. Actually kind of proud to have come this far on my journey - living completely openly with BID.
Here is an English translation (hope its not too bad):
An unusual woman in an ordinary small town – this is how Jørund Viktoria handles her gazes
From man to woman is one thing. It is the wheelchair that Jørund Viktoria Alme gets the most attention around.
Five years ago, she was a walking man. Now she's a woman in a wheelchair. Jørund Viktoria Alme has chosen to be open about her two conditions, including at God Morgen Norway on TV2, in Dagens Næringsliv and VG.
"The feature on national television was a culmination of a long media journey, which started in Romsdals Budstikke. I realized that I had to get a grip and live more in tune with myself. When you go out into the world and talk about such big changes, it will be talked about. I was a bank manager in Molde. By being open, I'm getting a grip on my own story. It was also about removing remnants of shame, which I have struggled with so much, says Jørund Viktoria.
A demanding journey
There has been no shortage of reactions; from the good and significant, from people who struggle with the same thing and say thank you, to the really ugly characterizations, says Jørund Viktoria in the latest episode of Listen to Her.
- How do you handle ugly feedback?
"It's often about reactions to a headline, a narrative that somebody is trying to create, and doesn't go to me personally. Then it's easier to deal with.
She says that the two transformations – from male to trans woman, and from able-bodied to using a wheelchair – have naturally been a tremendously demanding journey personally as well.
"It's been terribly strong, I've struggled with it my whole life and worked hard not to open things up. So it didn't go any further, I had to figure this out, it's been a journey of working with personal acceptance—finding it, and working with all the knots of shame and displacement.
- Do you understand that people think it's weird?
"Yes, I understand that. There is a little-known diagnosis and little information around it. When something breaks with our understanding of the world around us, we have to go a few rounds, break with prejudices and notions. It has been demanding for me and demanding for everyone else," says Jørund Viktoria.
A failure in neurology
Jørund Viktoria has Body Integrity Disphoria – abbreviated BID – a rare diagnosis, listed in the international disease overview ICD-11, for which the World Health Organization is responsible.
"When you have BID, you experience incongruence with the body you have and how it should have been. There is a disharmony, which creates noise and symptoms that are difficult to deal with. Research indicates that there is misprogramming in neurology," explains Jørund Viktoria.
– What symptoms?
"It's about a mind race. I often use an image, where you can imagine a processor in a computer. The BID is an active program in the processor, which starts up automatically, one cannot stop or control it. The program can snooze, but it can also take all the capacity, stealing all resources. It's affected by different triggers, and you don't have control.
She herself has BID symptoms in her first memories, from the age of four or five. A concrete example is the day a boy entered the 2nd grade class in elementary school with splints and crutches.
"For me, it was a trigger event. I didn't dare be around, terrified that someone would realize what was going on inside me. Because I should have been like him. It was tough," she recalls.
The head – not the legs – is assisted by the wheelchair
She found the diagnosis online together with his wife Agnes. Later she was assessed by a German research institute and her Norwegian psychologist.
- How did you find out that a wheelchair can help you?
"It took me a while to realize that. The train of thought contains something, thoughts about how it should have been, that the legs don't work. So I found a wheelchair on Finn (like eBay/Craigslist), and when I sat down in it, something existential happened. It was like coming home, it was only natural for me to be in that situation. And I learned how to have it without the run in your head.
- Was it a relief or a despair?
"A relief to be doing so well, but a tremendous thing to think that you should be this person in public. I felt this was going to be tough.
-Some people react to you 'voluntarily' getting in a wheelchair?
–Yes. Many people react on behalf of others, who are in wheelchairs. While I get messages from people with typical spinal cord injury. And when they realize that the wheelchair is a tool, they treat each other to it.
Getting up from her chair
She says a conversation with wheelchair user Mort1 Rulle, published to his 200,000 tik-tok followers, became clarifying.
"I was able to convey what it's actually about. I get that headlines can be provoking, but there's actually a diagnosis behind it. My world is better now. What tilted everything for me is that I lost the ability to work. When I understood how much better work capacity I get with a wheelchair, and got to explain it to people... Then I bridge the gap.
-The head is helped by the wheelchair – not the legs?
"Yes, that's how you can say it.
– What happens to the legs - does the musculature fade..?
"To a certain extent, if you don't use your legs at all. But it doesn't take much activity. I think I would have had challenges walking the Romsdalseggen, but I've had to shovel snow so it's enough this winter, and I also get up and walk when I'm doing gardening, or taking a cab. But then the bite symptoms appear, with racing thoughts, and I become very antisocial. They may arrive quickly, or it may take some time.
– Do you get a wheelchair from NAV?
Despite unknown diagnosis; Jørund Viktoria tells of nice meetings with her GP and psychologist, who have been many also because in the midst of everything she was diagnosed with cancer.
She says that she is currently "under assessment" at Rikshospitalet in relation to treatment of gender incongruence – where it will be assessed whether she is "trans" enough.
"It must be obvious, if you ask me. But they say they need to have more knowledge about bids.
- Is there medicine for BID?
"No, no way that's been found, therapy has also been tried. You can have anxiety and depression as consequential consequences. You get treatment for that. But researchers believe that because it's coded in neurology, you can't treat yourself out of it," says Jørund Viktoria, adding that in order to get rid of symptoms, some people choose to inflict harm on themselves – such as amputation of an arm or foot – through surgery, or at worst self-harm.
– What question do you get most often in relation to your wheelchair?
– Will I get a wheelchair from NAV (social service)? The answer is yes. It's about the chair being a solution to keep me working. So I have a clear conscience for that," says Jørund Viktoria, who commutes to Oslo and works as a financial analyst at Handelsbanken.
"These are attitudes that many wheelchair users face. We tend to see them as a burden and burden, a cost to the community, which has nothing to contribute. A lot of people think I'm on hub, when the truth is that I work at a high level, and a lot of overtime, and pay a lot of taxes. It's sad, and we need to do something about it
One hundred percent female
Jørund Viktoria agrees that there has been more acceptance and understanding of different gender identities and transgender people among the silent majority. At the same time, the picture is complex.
"In the United States, strong forces are working to ensure that transgender people are not accepted, rights are removed, there is an ugly climate, with debate around Pride and woke and an awful lot of noise in the media.
She herself looks back on a life where gender incongruence has been present all along – but repressed. In her teens, music came to the rescue, with makeup, long hair and special clothes. It wasn't until her late 40s that she bought her first high-heeled shoes, and admitted to her wife that she had tried on her dresses. Thus began their shared journey of opening up in shame and displacement.
- Are your two states connected?
"Shame and displacement have lingered in both. The gender incongruence has been tougher to dig up, because it ended up at the very bottom, and I had a lot of resistance myself.
-You've been him, and now you're using her?
"I've realized that I'm one hundred percent female. I am registered as a woman in the National Registry, and perceive myself as a woman. Then there is still work to be done in relation to the physical," says Jørund Viktoria.
Wheeling around with a straight back
She says that she has started hormone therapy while waiting at Rikshospitalet and has two beautiful breasts – but that the other does not fade by itself. The gender change is necessary to get fully settled in itself," she says.
- What about the Jørund part of your name - will it be included?
"It's bisexual historically. And I was bullied for having a girls' name when I was a kid. So it's a little point back to that, and for now, I have no plan for change.
She says that the processes have been difficult to handle also for his wife and the two boys, who are becoming adults.
"They have had friends who have changed genders and experienced the process firsthand. They are at the forefront of understanding. They're super nice. It takes something more to deal with the bid diagnosis," says Jørund Viktoria, who is called "mams", "dad" and by name – and is clear that she will always be "father".
-How do you manage to be so safe and open?
"Being open and honest, and telling who I am, is a key to finding safety. Then it has a lot to do with Agnes. She's amazing, she's not standing there like a cheerleader—she's shouted, screamed, swore, asked, explored and objected, every resistance you can think of. We've been through everything, we, so what comes from the outside, that...
-And now you're wheeling around in Molde with your back straight?"
"I meet a lot of nice people and have nice conversations. When you come out into the community and see the gazes of people... At first, I wasn't used to it. There's a lot of double glances, it's a little different from those glances, but they don't touch me," she says, adding:
"I have gone from a person in deep crisis to a person who is doing very well.
-Do you sometimes wish you were just a normal guy?"
"I don't think like that. I've never strived to be like everyone else. And I've suffered from adapting to expectations – no, I'm terribly happy for that journey, I've had a lot of great experiences I would never be without. And when you're open, people are open back. It's much better, than an ordinary, boring life.
I’m planning to stop T injections to see if it alleviates some of the issues. I’m single and lonely in a foreign country (USA).
makes me hopeful
)
