"Gaining the confidence to speak up is a hard thing to do, although as I see it, if I don’t give it a go now it may never happen."
- Rebecca, young survivor or stroke
Written by Rebecca Schmidt-Lachlan, Altered Abilities
Let’s be honest, nobody wants to spend time in a hospital for more than even one night. Unfortunately, it does occur more often than not…. especially when a stroke occurs. If you’re lucky it may be as short as a week for a minor stroke if things bounce back fairly quickly. Sadly, most people can end up expecting to stay a month or more. In my case, it was 7½ months between 3 hospitals, with one of these specialising in Rehabilitation. I suffered a brain stem stroke and was informed this was the worst possible place a stroke could occur. On waking, the only function remaining in my body was my eyes. I wasn’t even able to talk, move or point. This is an example of an extreme stroke with all movement or communication restricted. My main tool was answering ‘yes’ or ‘no’ with the blink of my eyes. All strokes will impact each individual differently, depending on the area of the brain affected. Some lose sight, hearing, smell, speech or mobility…. At the beginning I had a little of all missing except hearing and smell. These were my only senses left working. I found that these heightened to almost super-senses where I could hear things others couldn’t and my nose was very sensitive to odours that no one else was able to pick up on.
So, this is the part where people ask me how I could get through this. At the very start you need to decide to remain positive and believe you are going to get better. It does not matter the timeframe. It isn’t important the number of times you try and fail at something you would like to restore to your previous state. The truth of it is this is a learning experience, and you may find a better method than the one you used before. All that matters is you complete whatever you set out to achieve. Despite what others may tell you, only you need to be happy with the time it takes to finish something!! If you are unhappy with your progress or feel you can do it quicker, practise makes all the difference.
You know the limitations of your body and it can be hard when others are pushing you past your limits. This is where it comes in handy to utilise your voice or any other communication method available to you. My preference once I first started moving my hands was the universal hand sign of the middle finger. This not only clearly indicated I was not impressed with what was happening, it also let the doctors and nursing staff know my brain was still functioning even though most of my body did not want to play the game. It also let them know I wasn’t going to be a pushover that would just do everything they said, I was able to choose. Each person will have their own style and unique method of communicating with others around them and whatever works for you is best, even if it is not appreciated by family or staff at the hospital.
It can also be hard when your family speaks on your behalf. Adding the skill of letting your opinion be understood can save a lot of drama down the track for both sides. Gaining the confidence to speak up is a hard thing to do, although as I see it, if I don’t give it a go now it may never happen. This was a big motivator in making sure I got the treatment and respect I felt I deserved!! Afterall, I was still a person with thoughts and feelings although I was largely trapped inside myself. Charades is a great method of communication and allows the chance to relax a little while playing a strategic game as well. I soon found out who was good at playing this and often indicated by pointing to the person I wanted to relay my information.
I chose to look at my time in hospital as a bit of a break from the everyday stresses of life and this I believe made all the difference. I was concerned internally at times and told myself it was great practice if I had to do it again, I can only improve at the way I handle each new hurdle in my way. I may not get it the first time but leave it with me and we can talk about it later if I still can’t do it. My focus was solely on improving and I didn’t have time for those people that wanted to tell me I can’t.
Luckily my family had a similar mentality and refused to believe what the doctors and staff had told them of my condition. Don’t get me wrong, there are times this information is correct and the outcome is what has been relayed. But, and this is a big but, do not give up on hope that this may be wrong and the person may surprise everyone. Every person has a unique set of skills and abilities which can sometimes enable them to achieve the impossible. With encouragement and support comes confidence in the ability to surpass what is expected of the person in question. In this instance, you can be selfish at times you feel necessary. This is one of the hardest challenges you will face in your life. What you get out of it is what you put in. It can be extremely traumatic and completely overwhelm you or you can accept what has happened and move on to bigger and better things with a whole new outlook on the world.
Written by Rebecca Schmidt-Lachlan, Altered Abilities
After moving from the Intensive Care Unit into High Dependency and back onto the Ward, it was time to start looking at ways to progress my current situation. At first, I did not want to accept there was anything different about me and everything was fine. It was not until I tried a ‘tilt table’ which straps you in and brings you to a standing position. As the room whirled around me, I began to suspect things had changed dramatically. I felt as though I was in a bad dream and the arm splint fitted each day to straighten my arm at the elbow was a complete nightmare.
The medication for anxiety they had placed me on made everything seem like a joke, even if it was a bad one. I laughed or shrugged off the pain endured each day as I didn’t understand what was really happening. At this point I couldn’t really communicate other than crying to indicate that I was in pain. I found this worked to let the nursing staff know how I felt and as I intensified my angst, they responded by removing the splint which was the relief I was seeking. At this point I had to go with anything that worked.
Once I was able to start using an alphabet chart, the questions around what had happened to me started to flow. I was determined to understand what was happening, most people suffering a stroke didn’t end up like me. Would I be like this for life? Was I dead and this was hell? After hearing the diagnosis of ‘Locked in Syndrome’ my primary thoughts were ‘You don’t know me and what I can do’ followed by ‘I really don’t think so’. I firmly believe this was the driving force in my recovery.
I had just started to get used to the daily routine when I was informed of the impending change of a new Hospital. On the one hand I was scared at the thought of new surroundings and the upheaval of my routine. I had just gotten used to this although on the other hand, I was excited to get closer to home and my family. At first, I thought this was another joke to scare me into doing as I was told by the nurses and doctors. I had been challenging at best and felt it all was a game where I had to keep one step ahead each and every day. When I came down the mountain and saw the sea again, I almost couldn’t believe my eyes!!
Now I was encouraged on a daily basis to participate in Rehabilitation which felt similar to cruelty as everyone gathered to watch my progress. I did not understand the gravity of where I had come from and the amazement of those around me. The stay at this Hospital was a short one as I was to find out.
Lastly, I moved over to a specialised Rehabilitation Hospital where I would regain majority of my independence and vocalise my thoughts on how I wanted to drive my Rehabilitation. Not long into my stay an Occupational Therapist approached me and asked if I would like to create a timetable. This would give the staff an indication of my expectations and my commitment level. I set to creating a daily routine of Speech Therapy, Physiotherapy, Occupational Therapy and Diversional Therapy. I left Friday free and my father asked why I hadn’t picked anything to do on that day. I told him it was a rostered day off. I went out on gate leave during the weekends which was full of activity as well as my Rehabilitation…. I needed a break and some down time as well.
With everyone on the same page and willing to assist me in reaching my goals, we started working on my methods of communication and regaining enough mobility to control the wheelchair they had fitted with a handle for me. I realised they could offer me all the support I may need but ultimately it was me that had to do the work or nothing would improve.
Although I was bound by schedule and appointments, I understood now that I needed to improve my speech quickly and relay my thoughts on how the process would evolve to benefit my needs. When I was working on improving a skill and needed more time, I had to let them know this one required a little more effort and may take a while. Other things I picked up quickly and let them know I could try something harder. By keeping the channels open as I went, we were able to work together in achieving my goals for successful outcomes. Ultimately you decide on how much or how little you want to put in and what you want to get out of Rehabilitation. There will be days when you just aren’t up for anything and that is ok!!
Written by Rebecca Schmidt-Lachlan, Altered Abilities
At a certain point, the inevitable day comes where you are told it is time to go home. ‘Are you serious?’ was all I could get out at the time. There had been previous discussions alluding to my time in hospital coming to an end but now it was here I was ecstatic. Seven and a half months made each new day seem like ground hog day and I couldn’t believe it actually had come to an end. It gave me time to pack up all my clothes and toiletries along with all the different types of wonderful arm splints I had accumulated along the way, my awesome motivational sign had been lost after leaving Prince of Wales Hospital but I still had my Melbourne Storm blanket that had made it from the very beginning.
It also allowed that extra time to say goodbye to the friends made during my stay (both staff and other patients). Organising gifts for those people that had supported me in the recovery journey was an important part of getting ready to leave. Each person had given me a new perspective and coping skill that I would always be grateful for. It wasn’t important whether it came from a store or was hand-made, the main thing is it came from the heart and expressed gratitude to the people who helped me make progress.
This was the point I started thinking of what life will look like at home. So much had changed although being wrapped up in cotton wool forever didn’t sound like my cup of tea. Sure, a little extra help might be needed at the beginning but at the same time I would like the chance to challenge myself and improve. It was important to express my expectations for the type of assistance I would like once back in familiar environments. This gave a clear message to myself of where I wanted to be while helping the supports around me to understand where assistance may be required.
Making my way around the various departments used each day, I asked if there were any Outpatient Services available in Physiotherapy, Occupational Therapy, Speech Therapy and Hydrotherapy. Each type of therapy was relevant to helping me get back to the level desired. Physiotherapy would aid with my mobility; Occupational Therapy provided the life skills for everyday tasks. While my written skills were still great although a little shaky, Speech Therapy would help the control of my verbal expression and the voice levels needed a bit of work. Hydrotherapy was a fun way to socialise and get used to different movements in an environment where it didn’t hurt when I fell. That was a massive bonus, there had been a few spills along the way and it gave me that extra layer of security to know the worst that could happen was a little water up my nose.
I also sought out the Illawarra Brain Injury service as they were able to give me additional support with my speech, offer socialising opportunities and eventually psychology assistance to take a cognitive test when I wished to return to driving. At first, I was very hesitant to opening myself up to certain groups and wanted to feel I was in a safe space where everyone understood the issues I was facing. Surrounding myself with people that made me comfortable helped to build my confidence before making my way back into the community.
My decision to approach rehabilitation like a job paid off in the long run as I saw this as an everyday task. The inner fighter in me wanted to try and improve something every day whether it be strength, endurance or an ability I found challenging. Basic housework and meal prep were high on the agenda, the next thing was the transport side. At first that was provided by outpatient transport services for trips to hospital. Further into my rehabilitation, I took on the challenge of a taxi where managing the payment side added the extra challenge as well and eventually, I got even braver to walk to the nearest bus stop and feel the accomplishment of doing it all on my own. This helped sort out my schedule to work in tandem with my appointments and manage the time required on transport each day.
Once the routine had been gotten down pat, I looked to add a few more activities to my social schedule. I spoke to the day rehabilitation people at the hospital to join my local Stroke Recovery Association Groups for more outings and bus trips. Looking into the local disability service organisations I was able to see what they had that may tie in with my road to recovery. My connection with these services allowed me the chance to see what fit in well to progress in my own personal journey. I knew my situation was unique and aligning with people that understood what I wanted to achieve was the most important part of the process.
Sue talks about how she longed to be recognised as a young person who needed to be engaged in an age and culturally appropriate way during her rehabilitation and given more opportunity to express herself.
Listen to podcast with transcript
StrokeLine is available Monday to Friday 9am to 5pm, Australian Eastern Standard Time. Call 1800 787 653 or email email@example.com. Lifeline is available for crisis support 24 hours a day, 7 days a week. Call 13 11 14 or visit lifeline.org.au