3. Knowing what’s going on
“I really liked the porters who explained everything to me and what would be happening the whole time they were moving me around.”
“During the week I could see the schedule on the noticeboard so I knew what I would be doing. There would be a few hours of physio, time with the OT and maybe some Speech Pathology. In between appointments was rest time.”
“Some of the things the staff were getting me to do felt like a waste of time. They were either easy - like making a cup of tea, or things I could have done on my own or with my family, like playing games.”
“As I became more familiar. . . I became more confident.”
“Sometimes I just needed someone to talk to who would tell it to me straight. I didn’t trust when people sugar-coated things, but also really needed someone to help me process my grief.”
“Being told it will be 20 minutes then waiting an hour makes you feel really unimportant.”
“Sometimes the nurses would agree to do something, but then get too busy. I just had to wait with no idea if it was going to get done or not. It’s not their fault, but it’s horrible eternally waiting.”
Max: As I’m making my way down the corridor to meet up with Jeane, I stop a few times in the little alcoves, and love being surrounded by the inspirational stories of past stroke survivors. I sometimes wonder if I’ll ever be like them, but I love how “normal” they all seem. They look like me, and the stories aren’t all sugar-coated for magazine covers, they tell it like it is. Now that I’m a bit further in my journey, my team and I decided that it would be okay to unlock some of the less successful stories, but I appreciate hearing those alongside the good because it motivates me to try really hard in my rehab sessions [2] – I know that I need to put everything I can into my rehab if I want to achieve my goals. Sometimes I stop and just look at their pictures, and other times I like to listen to them talking about their experiences and giving me their advice. It’s pretty cool how the AR makes it feel like they are right there with you [2, 4, 5, 10, 14].
The other day, one of the staff showed me how to take some of the people featured in the corridor AR and have them appear in the therapy spaces [2]. It’s pretty cool to look at how they were going [10, 14]. But, nothing beats the time I get to spend with other survivors – especially when we get to compare notes on our therapists. I think my [carer] also really appreciates getting to meet other carers and families around the facility. It must be really reassuring for them to have someone they can talk to who really understands what they are going through [9].
Walking past some other people’s bedrooms, it’s interesting to see a few of the newer arrivals sitting in the little transition space (Ashleigh), still in the safety of their bedroom, but able to say a quick hello and acknowledge me as I’m moving past. The other day I got asked the obligatory “how long have you been in here?” question and realised for the first time that people were looking to me for guidance [1, 3, 5, 7, 10, 18].
Jeane: When I get to our little spot in the forest corridor, I see Max is waiting and we start playing [game]. After a few rounds, our [tech] asks us to update how much practice we’ve done with each other, and I realise that I qualified for a conversation hero star [2]. It’s nice to have all my practice recorded so that my team can see how much effort I’m putting in. Max is feeling tired so we agree to stop playing so they can have a rest. A few minutes later my [tech] checks to see if I enjoyed the game, and schedules another time for us to catch up and practice our conversations again [2, 4, 5, 7, 10].
I’m feeling okay and can see that the [space] is only 3 minutes away for a “yellow level” mover like me so I decide to continue down to the [space] [2]. I smile to myself as I see that when I was a “blue level” that trip would have taken me 12 minutes [15]. I love the fact that I’m now allowed access to one of my favourite training areas to practice on my own or with my family – I just need my hand/thumb and it knows its me [2, 4, 5, 10, 16]. I like the [space] because I can see what’s going on outside and I can watch the nurses coming and going [15]. I just saw on the info-wall that one of my favourite nurses is going to be on shift tonight [2]. I’m really looking forward to showing them my conversation hero star on my goals board. When I get back to my room, I can see I have a video message waiting from a friend who saw my new achievement because it auto-shared to my facebook page [2, 7, 9].
I really like how the info walls display different things for different people, but we all know what is happening. It makes me realise just how many things are going on all the time. I also like the fact that the information I found today about tiredness (fatigue) that’s really bothering me right now could be downloaded and emailed to my family, I know they’d like to read this too - really helpful [2, 3, 4, 9, 14].