Star's amazing Journey_Part 3
Today, my diet still has some restrictions because of mild swallowing difficulties as well as needing to minimise gastro symptoms. I still rely on tube feeding for around 60%-70% of my nutrition and receive ongoing treatment for ARFID. But I eat with my family every evening and enjoy it!
My diet is almost completely open in terms of textures and flavours, and the variety is actually pleasurable. My swallowing is so much stronger, and choking on food is much less frequent.
I’ve overcome my fear of eating and can confidently eat in front of others. I’ve even enjoyed joining in a few family meals at restaurants. This was huge for me because of eating food I’d never tried before, that someone else had made and with different crockery/utensils.
Eating no longer seems like a chore and an overwhelming task because, through working with Mershen, I’ve halved the time it takes me to eat and increased my portion size from 1⁄4 cup to 1⁄2 cup.
I cook and bake without trouble or disgust. Even though I do quite a bit of cooking of family meals that I can’t eat, I still enjoy the smells and the process whereas previously this would have been too overwhelming and may have made me throw up.
I’ve gained 5kg - am now 41kg and have my brain and energy back. I can think much more clearly, logically and reasonably. Although I still need some help, I can mostly look after myself, organise my own food and keep to a good routine.
Over Christmas and New Year I was well enough to go away with my family, and it was fun to try new foods; I learned to be ok with and enjoy some
packeted/pre-prepared foods and was able to join in with the occasional treat like an ice cream or iceblock.
I get up in the morning with a sense of purpose and belonging. Being well enough to enjoy activities like wood turning, go to a night class, work towards university, and participate in a voluntary role at Deaf Wellbeing NZ has been incredible.
I feel like a part of the community, enjoy my social groups and feel proud of the
progress I have made.
What I appreciated about my SLT
Mershen’s skills and qualities go beyond that of textbook treatment. Mershen
provided a treatment approach that is individualised to my needs. He valued me for who I am, worked with my likes and dislikes, he is creative and positive, and values patient-led care.
He worked with my team of professionals and took part in multi-disciplinary team meetings so people's roles were clear and to facilitate communication between professionals.
I am not a textbook patient. Most healthcare professionals have tried to fit me into a box and treat me for that condition. Because of the complexity of having autism/neurodiversity, medical conditions and PTSD/trauma, I don’t fit into one box hence those treatments didn’t work for me.
Mershen's ability to think outside the box, be creative, listen, have empathy and
embrace my unique interests and qualities helped me to build trust, feel listened to and valued and feel whole. There are many patients like me who don’t fit the textbook. But that doesn’t mean we don’t have real problems that greatly affect our health, day to day living and overall quality of life.
It’s a shame that it took a year of problems and losing 12kg reaching a BMI of 14 to actually be taken seriously and get the help that I needed. Mershen proved that a little bit of human kindness, patience, empathy and open mindedness in the medical world can be the difference between recovery and disability.
Based on your experiences, would you say we need more SLTs in NZ and if so, why?
Yes and no. Yes, because there is 100 per cent a need for more speech-language therapists like Mershen. We definitely need more SLTs who are
experienced in working with clients with multiple conditions and who can take into account the big picture rather than treating a swallowing problem in isolation.
I worked with a speech-language therapist from the DHB in 2022 after doing testing. They prescribed some strengthening exercises, which I did. After the six-week review, I hadn’t made a lot of progress. The SLT said there was nothing more they could do, so just stick to liquids, and they dropped me from their books. Problem solved.
I understand it is rare to find an SLT like Mershen who can work with a wrap-around team, take into account multiple diagnoses, including a swallowing issue (physical and psychological conditions), apply treatment/therapy in an individualised way and overall make the client feel empowered to take control of their own health and lead the process.
It doesn’t seem like the NZ medical system has the capacity, time or skills for this. Yet if I hadn’t been able to work with Mershen and receive the individualised treatment he provided, I’d still be eating watery pumpkin soup and carrying a feeding pump around 20 hours a day.
So there is a need for more SLTs with skills like Mershen’s, and there’s a need to upskill those already qualified.
