Living With An Acquired Brain Injury
‘Sorry, could you not ask me two questions at the same time?’ my friend Dorothy implores, looking frustrated. She hasn’t had an easy time of it, but despite that, she is not one to wallow or complain or put up with people asking her two questions at once.
Dorothy lives with her boyfriend and their six year old son, John, in Drogheda. Unfortunately Dorothy suffered from a pelvic dysfunction which was only diagnosed at the birth of her son. This meant that she was recovering in bed for months, caring for a new born, and battling post natal depression, with a partner who had to work in a different county most of the time, and little other supports. Having recovered as well as she could be functional (she still has chronic pain), she went back to her art teaching job, and also started a group support in her home for women experiencing Post Natal Depression. They came from as far as Wicklow, such is the strength of the stigma it carries.
Life continued as normally as chronic pain allows, and in 2013 Dorothy faced another challenge. During her 32nd birthday party she fell and hit her head off her bathroom sink and was knocked unconscious. A friend found her and picked her up, but she fell off him, banging her head again off the wall. She was then put to bed. During the night she got up to use the bathroom, and, concussed and disoriented, she passed out and hit her head a third and final time.
After the weekend she went to work as normal, with a sore head and feeling some leg pain, but didn’t think much of it; it’s hardly breaking news to be feeling a bit battered after a heavy weekend. Exactly one week later, Dorothy still recognised her son John, but wasn’t sure who her partner was – he seemed like an overly familiar stranger, “a ghost no one else sees”. This was the beginning of what Dorothy calls “the lights going off in an estate” – some axioms in her brain had been severed, and the chemical that was released killed the surrounding axioms. Eventually she told this friendly stranger that there was a problem, and he drove her to A&E. There, she was kept in overnight for observation and released the next day with a diagnosis of concussion and the advice to wait it out.
From there her symptoms increased. She started to walk and talk “like a drunk person”. Her mind was empty of thoughts. As someone who thinks a lot, this concept was incomprehensible to me. She started seeing lights in her eyes, even when they were closed. Her eyesight was affected, losing her depth perception in one eye. Sometimes she accidentally sprays hair spray in it, she says, laughing.
She self referred to Beaumont Hospital and got an MRI two years later. She had been visiting her GP weekly, and was under the impression her doctor thought she just needed someone to talk to. Her emotional state got so low that she started having suicidal thoughts and contacted the suicide charity Sosad. Here, for the first time in six months, she was given information about Acquired Brain Injury and a contact number for Acquired Brain Injury Ireland. This led to ABI Ireland visiting her at home and talking through what she needed. It was the first time she felt “validated”. Dorothy says that after many many months of doctors and hospitals, this was the first time “someone got it”.
There is no treatment as such for an Acquired Brain Injury, only management. Dorothy says it is like living in a different person’s body – she “had to take the time to get to know and like this new person”, whom she felt sorry for. This person was “new” because her identity had been washed away by the injury. An artist, and art teacher, she had to learn how to draw and paint again, her hands “belong to someone else”. Losing this creativity was the one of the hardest parts of this. Everything is slow. She can’t work anymore. As she glances over the long list of symptoms on a page in front of her she says she feels sad. She isn’t able to think in a philosophical, lateral way anymore. She mixes up vocabulary of things in the same class, like apples and bananas. She suffers from seizures when there is a combination of fatigue and too much going on at the same time. She wears sunglasses in bed when she’s overstimulated in order to block out a sense. She gets lost in familiar places easily. When she visits Dublin, the city she grew up in, it’s like “the maps have changed”. She says it’s “my Dublin, but I don’t know it”. She has to think about everything – “nothing is automatic anymore” – even something like putting on the dishwasher involves a thought process. When she is shopping for food, everything is crying out for her attention, to be seen. Noise is extremely difficult to bear, as all sounds are heard equally. As we talk John interrupts constantly, and every time Dorothy has to stop and pay him attention – she can’t ignore any distraction. She keeps apologising for forgetting what we were talking about.
Her friendships have been affected; she can’t listen or give advice anymore. The part of her brain that processes information and thinks of what to say next is a “missing an extra conveyer that’s supposed to be there”. I shudder at the idea of not being able to listen to a friend in need; to want to but not be able to. Unsurprisingly, she feels isolated in this experience. She finds it incredibly hard to make telephone calls, and her friends are busy, and mostly live in Dublin. Many friends have disappeared. It’s hard for people to believe her symptoms are not exaggerated – “no one believes”. She says it’s sometimes like living in the Truman Show. Social situations are fraught with anxiety and have to be limited to one on one. She is the youngest of seven and says that having her family around all together is like “being on the bus with a a hundred Spanish students”. The combination of chatter and noise and attention means Dorothy can’t concentrate on any one thing, she can’t understand, and so becomes quiet, doesn’t participate, sits and watches.
With regards her bright little boy, he has regressed in school since the accident. Dorothy can’t teach him as fully as she would like. Homework gets sent home and she can’t help him with it. Bedtime stories are a challenge – Dorothy falters over pronunciation and can only take it four lines at a time. She manages this by half making it up as she goes, half reading. Fatigue is one of her biggest daily challenges, requiring her to take a nap every day before John comes home from school. She used to be a very physically active parent, but now worries about John being outdoors with her, as her reaction times are so much slower now. John is a real chatterbox, and Dorothy uses earplugs to dull some of it.
And that’s life for Dorothy since that birthday party in 2013, and forever. I like to think I am a resilient person, but Dorothy’s resilience is quite a reach from mine. She likes to take selfies because they remind her that she is real and she will survive this. She goes to aqua aerobics and likes the feeling of freedom in the water amongst the old ladies. She is re – learning how to paint and holds onto her artist identity tightly. She calls this alter ego “Dolly”, as a way to separate her injury from her artist identity. She continually refers to herself as being made up of two people, similar but not the same, “drawn on acetate and put together”. And she has grown to love and accept this new addition to her being. She tells me that at 35 she feels like “an aul wan” who “knows too much of the world”. She laughs as she says this, the same way she did as she told me about occasionally spraying hairspray in her left eye. “You have to laugh” she says. As she is telling me about getting lost in Dublin, she finishes her sentence with “but I’m brave”. On a mannequin in her living room are the beginnings of a viking costume, for an upcoming viking festival. She knows that the consequences of going will not be easy to deal with, but she doesn’t care. “You have to live”, she says.
I left Dorothy’s and drove back to Dublin feeling exhausted. I felt exhausted from the sheer amount of information I’d just taken in, exhausted from her endearingly chatty son, and exhausted from the sense of effort I felt that goes into Dorothy’s every day life. As she says – “everything is hard”. Dorothy emanates a calm acceptance, a mindful living in the present, and I wonder at the how hard it may have been to arrive at that point. What struck me is that she is still the Dorothy I knew from art college. She is the same friendly, kind, warm person that I loved then and love now. And I guess that’s a blessing and a curse. While she doesn’t publicly carry her injury on her body, and deal with the difficulties and stigma that may bring, only she understands the true, complex, difficult experience of having an acquired brain injury. And she is the only one who carries it, with the spirit of a lion and the strength of an ox.
For further information on Acquired Brain Injury contact Acquired Brain Injury Ireland.