Wouldn’t it be great to open up the limitations of our minds and change our perspectives on how we view people with altered states of ability?
Expanding the horizon of accessibility
Each person has a special set of skills they bring to the table; this needs to be embraced and seen as the potential for greatness rather than an incapacitating condition. Something one person is unable to do well another can work through or solve easily. This does not diminish anyone or make them defective; it can open up new avenues to learning and adaptability.
The harsh reality is that the whole way you navigate through daily tasks can change in the blink of an eye. How we respond to these new challenges will determine the outcome. It was not until I found myself in this situation that I really saw the need to take this a step further. Twelve years ago I experienced a stroke which resulted in ‘Locked-in Syndrome’. Today I’m working, driving, and living independently. Facing the challenges of rehabilitation and adjustment to altered abilities has changed my perspective, and I’d like to share my insights with you.
Inclusion and equity
In today’s society, there is no ‘normal’ person as everyone faces different experiences and challenges throughout their life. The acceptance of people with a disability or mental illness has become more mainstream in cultures all over the world and now there are all kinds of services on offer to cater to the adaptive needs growing all the time. Although there is now more acceptance in general, it needs to move into a new space where it is acknowledged this can happen to anyone at any time. We have been talking in this space for over 40 years but not that much has really changed in our perceptions.
A great exercise to reduce fear of the unknown is to take a step back from life as it is now and imagine the way you would like to be treated if you found yourself with altered abilities. Think about the expectations you may have for assistance available to you. Once you really go into the long list of possibilities that may eventuate through your life, the next step is to try spending a day in that alternate state of ability. This is the ‘walk a mile in my shoes’ method that can be a real eye opener to the experiences others face on a daily basis and the current way you view and treat those people. It is not designed to create a fear factor, more so to gain empathy and insight and to reduce the fear associated with such events. I woke in a vegetative state and was told I would remain this way. It was my attitude that decided how my journey would pan out and that determination (or stubbornness) got me where I am now.
Reduce fear of changes in life or abilities
Addressing the possibilities for the future can help to alleviate any misconceptions or limitations you may set upon yourself. Life is a journey of endless twists and turns, and it is how we choose to meet these that will determine their long-term impacts. Some things may be a little too much and cannot be overcome, but that is okay and as long as you are all right with what this means or what assistance you may need, no-one else is in the position to question your decision. This doesn’t mean you have to accept all limitations without question; you only get out what you put in. As long as you’re giving it your best you can be satisfied, even if things do not work out how you hoped. You might need to adapt the task or ask for help, and that’s okay too. Any adaptation or assistance you feel is necessary should not be questioned. For example, I currently do my hair lying on the floor everyday as my right arm will not stay up long enough to tie my hair. On the ground, gravity is my friend and I am able to complete the task. Generally, I have found most people find it clever when told a new method of achieving something they have never thought of previously.
In a moment everything can change
Life is a precious gift that can be taken away or changed in an instant. There are so many different ways in which these things can happen. Generally, we do not like to think of the possibility of something going wrong until it is staring us in the face. In that moment, you need to be prepared to step outside of yourself and take a look with clear glasses to read the situation for what it is. Once you can look at the circumstance objectively and understand the challenges you face, the possibilities open to you, and the magnitude of effort required, you are able to look at things on a new light. You can make informed decisions about your next steps. I remember being wheeled into surgery thinking, “It’s only a stroke, how bad can it be?” When I awoke, I realised quickly that I had a lot to learn about strokes and what could happen!
Accepting changes and seeing positive aspects
People are reluctant to change. Everyone loves progress and everyone hates change. The analogy of ‘if it isn’t broken don’t try to fix it’ comes to mind. This allows us to stay in the same routine for a large portion of our lives and makes the transition into an older body that may not be able to perform the same tasks as it has been all the harder to accept. Change is a positive experience no matter what happens, it can either bring a new phase of life with new experiences or teach us to be wary the next time this situation rolls around. You may not want to avoid it altogether as something different may happen along the way giving you a new experience or lesson, although caution helps to navigate our way through. You can keep falling or learn a new skill to counteract the problem.
Everyone has different abilities
We often look at the smartest person, best athlete, coolest person, most wealth and exterior appearance as factors that determine what kind of a person you are: either successful or lacking. But these are superficial and can all change as quickly as you can snap your fingers. The inner working of a person is the most important facet and is what identifies you as an individual. Once your outer layer is removed, we all look pretty similar - a joining of muscles, sinews and bones. Our brain is the individual part and can be absolutely remarkable. This is ever changing as new paths are made and new skills are evolved.
Remove stigma associated with altered abilities
For a long time, people have associated having a disability or mental illness as a problem which makes them less of a person than the general population. This is reinforced by the labels and assumptions made by those people who have not experienced these challenges. The reality is that everyone has an experience with mental health and a form of disability at least once or more. Mental illness can be a hidden disability which people are reluctant to share openly in case people give them a label or put them into a category which they perceive as unreliable, dishonest, untrustworthy or incapable. A physical disability is often harder to hide. As a result, these people may be treated as if they are incapable of achieving or performing at the same level as those around them. The truth is, people who have faced and overcome many obstacles – including those with physical and mental disabilities – have valuable experience in dealing with stressful, depressing or traumatic experiences and using adaptive techniques to cope with day to day life. They can be resilient and remarkably resourceful in finding ways to adapt, to achieve, and to live their lives.
In 2008, at the age of 26, I was young, fit and active. The early hours of Easter Monday changed my life forever. I went to bed as usual around midnight. After only an hour or so I woke again feeling not so good in the tummy. I immediately put this down to food poisoning from the take-away food I ate earlier. Food poisoning was something that I had never experienced before and the odd sensation in my leg did not overly give me a clue something else was wrong. My leg felt as though it was going through the floor onto the dirt below and it was hard to walk but I managed to make to the bathroom and back to the lounge. Another hour passed and I woke again, only this time I had the sense to take my phone with me. After being sick again I waited a couple of minutes and realised things weren’t getting any better. I rang my mum who thought I was drunk as my speech was slurred.
After waiting for what felt like an eternity my mum arrived to take me to hospital. It was there I found out I had a blood clot to my brain stem. I was flown to Princes of Wales for surgery and a tracheotomy was inserted in my throat to breathe. When I woke, I found myself unable to move or talk. They told my family I had ‘Locked-in Syndrome’ and I would remain like this for the rest of my life.
I was determined not to let this be the way it ended for me and started wiggling my toes at first, movement and control returned quite fast after that. All up, I spent 7½ months in rehabilitation, mostly at Port Kembla Hospital followed by a further 2 years as an outpatient. This entailed Speech Therapy, Occupational Therapy, Physiotherapy, Hydrotherapy, Hypnosis and completing a stay in an Independent Living Facility in Goulburn. I decided then I would like to return to driving and undertook a Cognitive Psychiatric Evaluation. I passed this and began with my lessons. The next challenge was to return to work, I gained employment and after about a year started to look for my own home and live Independently again.
I then began a relationship which led to my marriage 3 years later. I also had opportunities to share my knowledge with the community, through my role with the Stroke Foundation as a StrokeSafe Ambassador and later on their Consumer Council. After my journey home from Sydney one day I had to depart from Unanderra Train Station. I was appalled at the effort required to get up the stairs and started campaigning with a group of concerned residents. This led to me being awarded the 2018 Woman of the Year for Wollongong and The Disability Trust 2019 Self Advocacy Award.
Today I work for the Australasian Rehabilitation Outcomes Centre as an Administration Officer and life is good. I have recovered the majority of my pre-stroke life and abilities back.
Only you can determine the outcome and how to live post-stroke. The best way is to take it one day at a time as each day brings something different.
I still am classed as hemiplegic on my right side with limited function in my right hand and leg. In open spaces I use a walker for mobility although I can walk independently within enclosed surroundings. I drive and own my car and live in my own house with my husband.
I am proud of who I am today and am grateful of the opportunities that have come my way. Each lesson can only make you stronger and there are no bad experiences, only new learnings.
- Rebecca Lachlan