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Member organization: The Traumatic Brain Injury Association of Finland

Susanne “Usi” Riikonen was in a rear-end collision in the end of August 2002.

– I was stopped in front of a pedestrian crossing to let someone cross the road. I was already starting to move and I leaned towards the gearshift, when a car ran into me at 40-50 km/h. At the same time, I was looking to the left to make sure no one else was crossing the road, and my turned head flopped first to the front, then to the back. While trying to avoid me at the last second, the car that ran into me jumped to the shoulder of the road and then rolled to the side of my car. At that moment, my head jerked sideways and I could hear a loud snap in my neck.

The car didn’t suffer much in the collision. After the police had investigated the accident site and heard all those involved, everyone continued on their way. About two hours after the accident began the infernal pain.

– After that, I lost about six months of my life. The only clear memory I have is the birth of my goddaughter, because I was there for the birth. Otherwise, the only things I remember from that time are flashes of continuous pain, feeling sick, and laying on the bathroom floor feeling awful.

The collision started a sick leave that continued year after year, eventually ending in disability pension – although getting the actual diagnosis took six years.

– Until then I had diagnoses such as atypical menopause – I was still quite young then – mood disorder, eating disorder, and a possible whiplash. Since my youth, I’ve been quite enthusiastic about volunteer work, and in the “rättäri” circles (convertible cars) I met a person, who ran a peer support group for people with brain injuries in Joensuu. When she heard about my accident and symptoms, she asked me if I’d ever considered that I may have a brain injury.

Usi had never even thought of that, because even though her occupation was physical therapist, she was not familiar with brain injuries. She decided to attend the peer support group. Usi explains that meeting other people with brain injuries awakened her from a bubble of uncertainty. For the first time she met people who had also been in car accidents or hurt their head in other ways, and had similar challenges in life. After meeting volunteers for the Traumatic Brain Injury Association, she also knew how to demand examinations and rehabilitation; this is how the right diagnosis was found.

Strength from peer support

The post-symptoms of a brain injury and whiplash were diagnosed at the rehabilitation center.

– I don’t know where I would have ended up, had I not met the volunteers for the Traumatic Brain Injury Association and found peer support. I also don’t want to think about where I’d be without the right diagnosis, which lead to rehabilitation and the right aids.

After attending the peer support group for a couple of years, the then leader announced that she was stepping down and suggested that Usi would take the lead. Which she did.

– I started doing volunteer work in environmental protection when I was 14 years old. I saw a fish that had gotten stuck in a plastic ring of a drinking bottle in the Sipoo archipelago. I thought it wasn’t right. When they were planning to build a nuclear power plant on the Löparö island in Sipoo, I chained myself to a tree for the first time. I also participated in climbing into Lepakko through a window in 1979. I started volunteering in the aftermath of the Koijärvi movement. After that, music became my field of volunteering. I’m still active on many different fronts in theater, music, and improvisation. Most recently, I have begun working as chairperson of the Traumatic Brain Injury Association’s eastern Finland division in addition to still leading a peer support group in Joensuu.

Usi has gained strength and faith in the future from the volunteers for the Brain Injury Association. While volunteering, she met people in the same situation as she was and found strength to go on.

– I saw that there are others who have agonized over the same things, and still survived. From the peer support group I got not only faith in tomorrow, but also concrete information: how to get help and rehabilitation, what are the rights of disabled people, what does the non-discrimination act guarantee, how to get legal help, and is there someone who can help with filling out all the necessary forms.

A few words about brain injuries

A traumatic brain injury is an injury to the brain tissue caused by a blow to the head, kinetic energy, or a skull-piercing foreign object. The majority of brain injuries are caused by falling (60 %), traffic accidents (20 %), assaults (5-10 %), sports (2-9 %), leisure time accidents, and other miscellaneous reasons.

So, traumatic brain injury is always caused by some kind of an accident. Approximately 15 000-20 000 people in Finland suffer a traumatic brain injury each year, and about 100 000 people have post-injury symptoms. Post-injury symptoms are long-term or permanent changes that occur after the immediate effects of the injury have healed.

Most people who suffer the mildest form of brain injury, a concussion, will heal completely. The more severe the injury, the more likely there will be lasting symptoms.

– Traditionally, men of ages 18-25 have been a specific risk group, but now people over the age of 70 have become another risk group.

The organizations that are a part of the Traumatic Brain Injury Association function in about 30 localities in Finland. The Traumatic Brain Injury Association is an advocacy organization for people with brain injuries and their relatives. The goal is to promote independent and equal functioning in the society for those with brain injuries. The Association was founded in 1992. Its essential activities include counseling, guidance and peer support, reporting and educating, adaptation coaching courses, influencing, cooperation, and supporting collective activities. A majority of the practical operations take place all over Finland in local organizations and activity groups.

– We are a member of Kansalaisareena, because from them we get support and information for our volunteer and peer support activities. Our employees get training and materials for their work through the Valikko-network. The members of our organizations get information and tools for different areas of volunteering from the Kansalaisareena website’s information banks, summarizes Anne Porthén, the Executive Director of the Association.

Text and opening photo: Pia Warvas

Translation: Satu Puolitaival


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