PERSONAL EXPERIENCE Hat designer and maker Lina Stein, launching Brain Tumour Awareness Week 2021. Pic: Marc O’Sullivan
WESTPORT-based milliner Lina Stein readily admits to being a ‘bit of a control freak’ who likes to be in charge of her own destiny. However, in 2016, following the diagnosis of a brain tumour, she could only watch on as her life set sail in an unplanned direction, with another hand at the helm.
In October of that year, she was sitting in a hospital bed in Castlebar recovering from major surgery that involved the removal of a tumour from her brain. The surgeons in Beaumont Hospital were able to remove the majority of the 6cm x 6cm tumour, and while what was left was not malignant, Lina realised that for once her destiny was not in her own hands.
“I remember being in Castlebar and seeing my boat sail away into the horizon and I wasn’t on it. I was on another one, but I was not at the wheel. You can’t do anything but surrender to an extent because you are not in charge. I saw my old life drifting off,” she told The Mayo News.
Five years on, Lina has made a full recovery. She continues to make and teach hat-making workshops from her studio in Rosmoney. Earlier this year, she was nominated as the featured milliner by Brain Tumour Ireland for Brain Tumour Awareness Week, which took place at the beginning of November and was themed ‘Hats off to you’. This saw her run a free millinery workshop in Dublin for the ‘heroes and helpers’ of those diagnosed with brain tumours.
Lina, a native of Australia, described Brain Tumour Awareness Week as very humbling and moving. She felt it was important to give something back to Brain Tumour Ireland, which supported her through difficult times in her recovery process.
“It is my feeling that living in the west of Ireland, where you are isolated from anything to do with neurology, you have to be stronger if you are going through it. You need allies, and I looked at it that I had this big cushion of support around me if I fell. You don’t want to fall on something hard, you want softness.
“Brain Tumour Ireland offers support to people because it can be hard to think straight for anyone who experiences trauma. You can be a husband or wife or mother of someone who is diagnosed, and you can be nearly more traumatised because you are conscious of the dangers … Brain Tumour Ireland is only a phone call away, and they will research what might be good for you or your loved one’s situation. That’s what’s vital, and it’s heartwarming for people when you get help. You are forever grateful,” she explained.
Lina was diagnosed after passing out on the afternoon of the All-Ireland Final in 2016 while giving a class to a student. She was rushed to Mayo University Hospital, but her memories of what followed are ‘wishy-washy’. She recalls being told she laughed when told of the possibility of a tumour in her brain.
She was brought to Beaumont Hospital in Dublin a few days later to be informed she had a meningioma brain tumour behind her left eye.
“I remember looking at this scan, and it was perfectly round, and it was sitting behind the left eye. I actually thought that it was really nice. These are these mad thoughts which you go through. Everybody’s brain has a mechanism to protect itself, and my weird reaction to it was I was nearly privileged [to have it]. My brain turned it around so I wouldn’t be afraid.”
The surgery itself was a success, but Lina admits that the initial post-surgery period was very difficult and a painful process.
“The turning of a page was unbearable, the smell of strawberries was too much, it was overwhelming. I could hear the theme of Coronation Street day and night, it was everywhere... which is now quite funny,” she recalls with a laugh.
She credits the hospital neuropsychologist, Mr Niall Mulrooney with getting her on the right path to recovery, as well as the gift of a diary given to her by her mother, who had flown in from Australia.
“Everyday I would draw an oval and draw where the pain was or where it is swollen or numb. I would do that twice a day. That was my form of control. Everyone is wired differently, and I had to have control of something. When you have lost control of everything in your life, and this is only a tiny strand of what you can control… To feel something and write it down and document it.”
Everyone is unique
Approximately 400 people in Ireland are diagnosed with brain tumours every year, and there are 150 different types of tumours. Lina said that before her diagnosis in 2016, she did not experience any headaches or pain associated with a brain tumour. She did suffer a loss of speech from time to time but dismissed it as being part of the menopause.
“I would be having a conversation, and all of a sudden I would get a short-lasting sense of lightheadedness and words wouldn’t come out of my mouth. I was aware the words were not coming out and I was trying, but it would be a mumble jumble. The person would look at you sideways wondering if you had too much to drink last night.
“But I later found out these events are called partial-aware seizures. I mentioned it to a neurologist a year or so after the surgery, and he said ‘Oh yes, that is quite common’. There are 150 different types of brain tumours known and there are so many different things that have to be factored in, and everyone is so unique. Nobody has the same symptoms.”
One of the main drawbacks from the recovery which Lina suffered from was mood swings which she said left her down and depressed.
“I thought I was going mad. Nobody can tell you what you will go through ...You won’t know until it happens.
“I remember the first evening I went out to McGing’s in Westport and I got dressed up and was ecstatic. It was unbelievable how happy I was . Only to get there and fall into the deepest hollow.
“Basically I was so happy I wanted to share my happiness and tell people I was really good. It’s interesting people are more open to you if you are sad or down. You can share your sadness but sharing your happiness is a slightly different thing.
“Those mood swings go from huge ups to downs but now I feel like a real human being again.”
Part of her life
It was over a year before Lina was able to get back to work, but she is back designing and making hats – and her creations are often to be seen atop clients at high-profile events, including Royal Ascot and the Galway Races. Her recent designs include a special range of headpieces that she has titled Brainwaves, inspired by her personal experience and reflecting her signature style for using more unusual materials in her millinery.
As she continues her recovery, she accepts now that the tumour is part of her life and that she will be taking medication, no matter how much she wishes she didn’t have too. Having come through the trauma, she feels doing so could not have been possible without the support she had around her, and she encourages other sufferers to make sure they too seek help and get support.
“I had great support from my students, and received beautiful cards and gifts … That is part of the cushion, and that is what I love about Ireland. It has that in its nature … and its not everywhere in the world.”
For more information on Brain Tumour Ireland, call 085 7219000 (Monday to Thursday), email firstname.lastname@example.org or visit www.braintumourireland.com.
The organisation can also be found on Facebook and Twitter.