Inga is finding balance in life

”Communication is the key, and for Inga, it is important to feel safe and to trust the other person.”

We meet Inga in a café together with a staff member whom she trusts, to talk about her life with CHARGE syndrome. 

Inga lives in an apartment of her own. She is content managing her own time and enjoys living alone. She has neighbours and staff to spend time with, in communal spaces, and the staff is always present in the building. They all know sign language, even the hearing staff. Inga says that the relationship with the staff works well.

– Feeling confident at home took time for me. I needed to understand that this is my home, Inga reflects.

Inga can see well with her right eye, less so with her left, and relies on glasses. While she can perceive objects at long distances, this is tiring and affects her vision.

– Bright light can be challenging. I can get confused when I’ve been in strong light and then go into a house, then my vision needs to adapt, Inga says. 

Inga underwent heart surgery as a baby and now her heart functions well, though sudden events can cause rapid heartbeats. She has no problems with her throat when eating, but her mouth tends to get dry.

If it is hot outside, the temperature can affect her breathing. Emotions also have an impact. When feeling sad, she needs to take a nasal spray. Inga has a bone-anchored hearing aid (BaHa) that helps her hear all the sounds around her. She can’t perceive speech, but she can hear people talking. When people speak calmly and use one word at a time, she can hear words too.

– When I remove the hearing aid, I barely hear, just sounds like a door closing or metal rattling. 

Coping with noise is hard for Inga, it disturbs her focus and affects her communication. Even after removing the hearing aid following a disturbing sound, the echoes persist in her mind, causing stress. She can get migraines triggered by light and sound. 

Pressing situations, a lot of people, and busy environments affect her. The way other people use sign language, and where they are positioned, can make her tired trying to read signs.

– It can be easier or harder depending on how they sign, I must feel safe and trust the other person, she explains and emphasises that communication is the key. 

Inga enjoys social activities, walks, and watching films and sports on tv. She is very social and uses social media a lot.  

”I also like being in nature and feel good when I am close to the sea, she says.”

– I also like being in nature and feel good when I am close to the sea, she says.

Inga thinks that CHARGE syndrome primarily affects her relationships. There are a lot of communication misunderstandings, and it can be hard to handle these situations. 

– The emotions are in control of me, and it easily becomes too much when I have to deal with things.

Inga receives assistance with cleaning and interpreting everyday situations, beyond just language.   

– A sign language interpreter often works well, but not always. Sometimes there are misunderstandings due to differences in sign language. I might be a little unclear or too fast sometimes. I try to be flexible in how I sign.   

– But it also depends on who is interpreting, so it’s about relationships as well, she adds.

Inga needs accompaniment when it’s dark outside and when walking on uneven surfaces. She also appreciates help when traveling, like taking a train from the station. Her home has a flashing doorbell, which also works as a fire alarm.

Routines make her feel good. Changes can affect her negatively sometimes, for example, if an activity is cancelled.

– But if it was something uninteresting, I don’t mind, Inga remarks.

She always writes down reminders on her mobile phone.

Inga has high expectations regarding how people should treat her. It’s a question about how one is met and relationships rather than knowing routines.

– I want to be able to trust the staff, but it depends on the relationship and what we can talk about.  

In her view, being met in a good way means that the staff should be warm, understanding, and provide a sense of safety. They should not be jumpy, angry, or grumpy, and they should avoid getting over-excited too easily. They need to know what distance to keep that allows her to clearly see the sign language. Sign language is of course important and even hearing people can be good at it.

Different situations can cause Inga stress: time, the weather, and even money.

– I find it hard to deal with money sometimes. How much should there be? Is it enough or not? Small things like that. 

In advance of special excursions that she looks forward to, Inga worries: will it be good or not? 

– It’s all about my own expectations and need for everything to be perfect, which stresses me, Inga explains. This also applies to her job and interactions with people in different situations. 

– I have a lot of expectations for everything, absolutely everything!

Inga needs to actively manage the thoughts that control her and persist even when she tries to slow herself down. She finds it helpful to get reminders from the staff which aid in calming her thoughts.   

– I try to take it easy and think that everything will be fine. I focus on here and now and take everything step by step.   

”I try to take it easy and think that everything will be fine. I focus on here and now and take everything step by step.”

Getting good sleep and eating well have a big impact on her ability to get through the day and understand what’s happening.

– I used to sleep badly, but it’s better today. Sleep and energy levels affect a lot.

Inga wishes that everyone who meets people with CHARGE syndrome would learn more, not be afraid, and gain a better understanding of what it is like to live with CHARGE syndrome. 

- I want others to understand me, and I want to tell them how I function, but it’s difficult since relationships and trust affect me. 

She would like to advise parents who have children with CHARGE syndrome not to worry, as this will have negative effects.

– Don’t worry, there are many opportunities ahead in the future!