Disability Matters explores acquired brain injury, recovery, hidden disabilities and the support available through Headway Ireland.
For many people, a brain injury is something that is difficult to see from the outside.
A person may look physically well while experiencing significant changes to their memory, communication, concentration, emotions, ability to plan and organise, or sensitivity to noise and light.
In a recent episode of Disability Matters, John Comiskey spoke with Ruth Lunnon from Headway Ireland and Allan McAllorum, a Headway service user, about acquired brain injury, the challenges of recovery and the importance of finding support and connection after life-changing injury.
Supporting people affected by acquired brain injury
Headway Ireland was founded in 1985, originally by family members who wanted to create support for people affected by brain injury and their families.
Today, Headway is a professional organisation funded mainly through the HSE, providing community-based support for people living with acquired brain injuries and for the families and friends supporting them.
As Ruth explains, acquired brain injury can result from a range of causes, including traumatic brain injury, stroke, tumours and lack of oxygen to the brain.
She estimates that around 120,000 people in Ireland are living with the long-term consequences of acquired brain injury or stroke, while around 11,000 people experience a stroke each year, alongside a similar number experiencing traumatic brain injury.
A disability that is often hidden
One of the important themes throughout the interview is the fact that brain injury can be a hidden disability.
Ruth explains that a person may experience difficulties with memory, communication, finding words, expressing themselves, managing emotions, planning and organising.
There can also be physical consequences, including paralysis or weakness, changes in vision or hearing, altered sensation and increased sensitivity to loud noises or bright lights.
“Really because the brain is such an important organ in the body, really if you think about something that you experience in the day that’s something that a brain injury can affect.”
This complexity can make brain injury particularly difficult for other people to understand.
“I’m a new version of me”
For Allan, the interview provides an opportunity to talk honestly about what happened to him and how his life changed.
Before his injury, Allan was a hotel manager, working in an intense environment where multitasking, memory and the ability to manage several responsibilities at once were essential.
His accident was a work accident.
When he returned to his former position, he quickly realised that the abilities he had relied on before his injury had changed significantly.
“Multitasking, memory, completely shot.”
He was no longer able to do the job he had once done, and this became part of the grieving process following his injury.
For Allan, coming to terms with brain injury has meant understanding that he is not simply trying to become the person he was before.
Instead, he describes learning to accept a new version of himself.
“I’m not who I used to be, I’m a new version of me.”
He explains that what feels normal to him may sometimes appear different to people around him — another example of the gap between living with an invisible disability and how that disability is perceived by others.
The grief and frustration of recovery
Recovery from brain injury can involve much more than physical rehabilitation.
Allan describes the frustration of discovering that things he could once do easily were suddenly difficult or impossible.
He also speaks about the reactions of other people and the experience of being looked at differently.
“This invisible disability can be very condescending towards you which can feel very belittling.”
That lack of understanding can come from strangers, but Allan also explains that it can sometimes come from people who know him well.
Family members may struggle to understand why he cannot remember something that was discussed only a day earlier.
For someone living with brain injury, this can add another layer of frustration to an already difficult experience.
Learning to live differently
Allan says that coming close to losing his life gave him a different perspective.
Today, he tries to live each day as it comes and not allow future worries to take away from the present.
“Don’t ruin today’s peace with what might be tomorrow’s problems.”
He also speaks about the importance of staying active.
Through his involvement with the Order of Malta, Headway, background work in television and other activities, Allan tries to keep busy and connected.
For him, remaining active is important not only socially but also for mental wellbeing.
His advice is simple: don’t sit at home and ruminate about what happened. Get out, find something to do and connect with people.
Why knowing about Headway matters
An important part of the conversation is the need for greater awareness of Headway itself.
Allan says that while specialist rehabilitation services know about Headway, the organisation is not always well known among the general public or in primary care.
He believes conversations like this Disability Matters interview can help change that.
“This radio interview is one of those things as well where we need to talk about it and get people out there.”
For Allan, Headway provides something particularly valuable: a non-judgemental environment where people who have experienced brain injury can meet others who understand some of the challenges they face.
“No brain injury is the same but we’ve all gone through the same pathway of brain injury issues.”
“Don’t be closed in on yourself”
When John asks Allan what advice he would give someone who has recently experienced a brain injury, his answer focuses strongly on connection.
He describes how easy it can be to withdraw into your own world and feel that you are different from everyone else.
His advice is not to stay there.
“Don’t be closed in on yourself, look to other people.”
Talking to people, joining activities and finding others who understand what you are going through can help break that isolation.
For Allan, simply having a conversation can be an important first step.
“A problem spoken about is a problem halved.”
Support shaped around the individual
Ruth explains that Headway offers a wide range of services and that people can refer themselves rather than needing a GP referral.
The organisation carries out a needs assessment to understand where someone is in their life and what kind of support might be most useful.
Support can include:
- One-to-one counselling with a psychologist
- Support with returning to work
- Social groups
- Adaptive sport
- Cooking and gardening
- Music therapy
- Support to reconnect with community activities
- Individual and group-based support
The approach is very much driven by the individual and what they want to achieve.
“It’s very much driven by what that person wants, where they are in their life and how we can work with them to get the best quality of life that they’re looking for.”
Families need support too
Brain injury does not affect only the person who has been injured.
Families can also experience enormous change and uncertainty.
Headway provides information and support by phone, email and live chat, as well as counselling for family members and couples counselling.
There is also a family member support group at Headway’s Blackhall Green Service Centre in Dublin 7, led by a member of the psychology team.
Headway has also developed a family member guide containing practical information and advice.
Ruth stresses that families can reach out for support and that the information and support service is confidential.
Support for people living alone
The conversation also considers the particular challenges faced by someone with a brain injury who lives alone.
Headway can help people with the application process and can accommodate different communication and cognitive needs, including providing larger-print forms and supporting people with aphasia.
The organisation can also liaise, with the person’s permission, with other agencies involved in their support.
Although Headway does not provide home-based services itself, Ruth explains that the team can help connect people with other organisations where additional support is needed.
No charge — and help is available
Headway’s services are funded through the HSE and there is no charge for people using the service.
Ruth encourages anyone who needs support to make contact.
The Headway information and support service can be contacted on Freephone 1-800-400-478, Monday to Friday, 9am–1pm and 2pm–5pm.
Information is also available through headway.ie, including live online chat with a member of staff.
“Don’t be alone with it”
Towards the end of the interview, Allan returns to the importance of social connection.
Headway’s social groups can provide an opportunity for people living with brain injury to meet others, have a cup of tea and coffee, chat, laugh and take part in outings.
For someone who is living alone, these simple opportunities for connection can make a significant difference.
“If you’re at home on your own with a brain injury don’t be.”
Allan encourages people to get in touch with Headway and discover the support available.
It is never too late to ask for help
Ruth finishes with an important message for people who may have been living with the consequences of brain injury for a long time.
Someone may have experienced an injury years ago and never received formal rehabilitation. They may still be struggling with changes to their life, relationships, work or mental health.
Ruth encourages people to reach out even if their injury happened a long time ago — and says that the information and support service is available even to people who do not yet have a formal diagnosis.
This also includes people experiencing ongoing difficulties after concussion.
“There is help out there for you so do be in touch.”
The conversation between John, Ruth and Allan is ultimately about much more than brain injury itself.
It is about identity, recovery, grief, connection and finding a way forward after life changes unexpectedly.
For Allan, Headway has provided a place where he can meet people without judgement, stay active and continue building his life.
And for Ruth, the message is clear: whether someone experienced their brain injury recently or many years ago, support is available and people do not have to face it alone.
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
Tune in to Disability Matters Thursdays at 4PM | Repeats: Mon 3AM, Tue 3AM & 7AM | Also available on Mixcloud and on bcil.ie/radio.