Introducing Elaine
Have you ever met anyone who had to battle lifelong challenges but seemed to make the most of every opportunity despite this? Meet Elaine. She has muscular dystrophy, a muscle-wasting disease that causes weakness in various muscles. For Elaine, this is primarily in her arms and legs, affecting her from a very early age. She is confined to a wheelchair and has been for most of her life. Elaine has had to overcome disability, tragedy and shyness to blossom into the independent woman she has become in the past 5 years. This is her story, and one we hope will be an inspiration to others when it comes to overcoming challenges with a disability.
From early life to motherhood
Elaine was one of seven children. Her sister Lesley died at the age of seven years with a heart condition – and may have had muscular dystrophy, but it was not confirmed before she passed away. Her other siblings have had various health concerns, but none that impacted their lives.
Elaine’s mobility was restricted from a very early age, but she persevered using crutches as she did not want to be seen in a wheelchair. If she fell, however, she would struggle to get herself off the floor. She recalls that when her Mum took her out in a wheelchair, people would ask her Mum questions rather than her. She felt shy and lacked confidence during this time.
Elaine went to school and, at fourteen, met the man she would go on to marry in 1983. Ian had muscular dystrophy too, but their joint disabilities didn’t stop them. They lived their early married life in Crookhorn in an adapted flat. They were both in wheelchairs but still fiercely independent. By 1988, their daughter Naomi was born, completing their family. Naomi also had muscular dystrophy and, despite being unwell during her short life, was a happy little girl who gave her proud parents much pleasure. They had three beautiful years with Naomi before she passed away at home causing untold heartbreak for a long time. It was such a distressing time and for many years, they struggled to go into the front room where she died. They eventually applied for a house move to Portsmouth, but it took a further few years for this to happen and for them to start afresh. However, they took Naomi’s legacy with them; they named the house after her and displayed the most beautiful pictures on the walls and furniture.
Naomi is still talked about today even though she would now be 35 years old.
Coping with progressive muscular dystrophy
As both Elaine and Ian grew older, their conditions would naturally decline, Ian’s more so than Elaine. Elaine was happy to socialise with Ian by her side. She always felt more confident with him and so never went out alone. Shopping and visiting cafes would be a normal part of their day, but if she needed to exchange an item she’d bought, Elaine would remain at the back of the shop and get Ian to go and change it. Accessing the community wasn’t a problem for Elaine all the time she was with Ian.
However, in 2013, Ian’s condition deteriorated and he needed a tracheostomy (breathing tube). After a 6 month stay in hospital, Ian was ready to be discharged home with a 24-hour care package; enter Aster Care! Elaine’s own disability remained much the same, and her health was good. However, instead of anticipating having care staff in their home day and night as an invasion, Ian and Elaine wholly embraced their new care team, and this new stage of their lives. They were there primarily for Ian but would help Elaine with the things she couldn’t reach or manage easily. Naturally, she built relationships with the staff and would often carry out crafting or cooking activities with staff when Ian was asleep and didn’t require immediate care.
When Ian had sufficiently recovered and grew more used to his tracheostomy, the visits into the community started again; this time being Ian, Elaine, his BiPAP machine, the care worker, and Bobbles the dog who joined the team not long after! Trips out needed planning but still took place and they had a lot of fun. Ian was always a joker with his care team. They even had a short holiday in Brighton with their care worker. They were both active on social media, posting funny stories with their care workers but also thanking them for their work and the extra mile that so many of them would go.
The turning point
Life continued like this until 2017 when Ian’s condition declined again and the community visits stopped. Elaine patiently waited, but it was apparent after a year that further visits were not going to happen. Ian bought Elaine concert tickets to see her favourite bands. Her friends and family would take her, but leaving Ian was a wrench like it was when he was in hospital although he was more clinically stable. She had to trust the staff would look after him in her absence, and let go enough to enjoy whatever she had gone to see.
It was during this time that Elaine had to consider accessing the community alone. If she wanted to pop to the shops/cafes without waiting for someone to go with her, she would have to, a) first summon up the courage to do so, b) consider all the ways her disability could impact upon this, and, c) then account for them.
After considering all this, Elaine took the logical step of going to the Co-Op in her electric wheelchair at the end of the road as she’d been there many times with Ian. As straightforward as this sounded, there was a busy main road that luckily had a pedestrian crossing nearby. It was a little daunting but achievable without too many challenges.
Next, Elaine decided to journey into Cosham. This meant travelling alongside one of the main roads in and out of Portsmouth. She worked out a route, knew where the dropped kerbs were, and found additional shortcuts along the way. She would visit places she and Ian had already been in Cosham for familiarity and confidence. Elaine noticed more so now that many entrances/exits were not adapted for people in a wheelchair, but someone would always open doors for her.
The next challenge was to use local transport! Elaine prepped for the bus by going on it with family members first before attempting the journey alone. She experienced a mixed response from the bus drivers. While many were pleasant, some did not like having to get out of their seat to put the ramp down from the bus to the pavement to enable her access. On one occasion, she even caught the driver swearing under his breath at having to do this. This could have knocked her confidence but she reported the incident and persevered with them. Elaine also noticed that even with ramps, manoeuvering an electric wheelchair over them could potentially be more difficult with its smaller wheels (compared to a manual wheelchair), and so even small gaps could prevent her from getting on and off buses (or elsewhere).
By now, there was no stopping Elaine – trains were the next conquest! This opened up other public spaces further afield such as Gunwharf and Havant. It didn’t come without its challenges; the local train station had no disabled access, so she would have to travel to Cosham first in order to alight there to travel in either direction. Whilst the train was comfortable and the guards were pleasant people, Elaine said she was once forgotten about when the train terminated at Portsmouth Harbour. She had to sit there until the guard remembered, and he was most apologetic when he did! Elaine found the trains to be the best way to travel.
More life challenges and accomplishments
To everyone’s great sadness, Ian passed away in August 2022. His death affected so many people. However, he was able to plan his passing at a local hospice which meant Elaine, Bobbles, and other special family and friends could be present for what would be a peaceful transition beyond that rainbow. It was, again, another major blow to Elaine, who had endured her fair share of trauma over the years. What helped was knowing and accepting that Ian’s planned departure was intentional so that she would not face the trauma of a sudden and acute death without her present if she was out somewhere.
Within a few months o Ian’s passing, Elaine herself was hospitalised with pneumonia and now required help and assistance herself on return home. By some incredible twist of fate, Aster Care was able to provide overnight care to support the BiPAP machine that Ian had also used, using many of the same team who had supported Ian. Elaine felt this was Ian looking after her.
A year later, another more confident Elaine had emerged. Whilst the grief would always come in waves, Elaine continued to move forward with her incredible network of friends and family, both in person and on social media. With them, she was able to celebrate Ian’s birthday in an inspiring way, continued to access the community alone when the weather was good, go out with friends and family to attend concerts, and continue her craft projects and jigsaws, as well as restart her baking. She has even embarked on redecorating which her and Ian had discussed before his passing. She has brought in some warm touches around pictures of her, Ian, Naomi and Bobbles, marking the next phase in her life.
Elaine today
Watching Elaine grow in confidence over the years has been inspiring. Despite incredible shyness and a lack of confidence, she is now in control of her life as much as she can be. Needless to say, Ian and Naomi are huge, unimaginable losses for Elaine, but she copes by keeping their memory alive in everything she does. She has managed to get not one but two tickets to see Barry Mannilow in his farewell concerts in 2024! She is ecstatic and knows Ian would be incredibly pleased knowing that she got them!!
Elaine’s story will continue. She will always be surrounded by friends and family because she has always reached out and welcomed them into her life. We will no doubt be back at a later date to give an update!
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