Have you ever been at a party or outing where you're socialising and then slowly people break away and you're left alone with the decision of what to do next? Do you join a conversation? Do you get out your phone? Do you soak up the atmosphere and enjoy the solidarity?
I think I have done all of those things depending on where I've been. All which have got me out of limbo. Limbo - it's that uncomfortable moment where you feel a hint of uneasiness and maybe even sometimes nervousness or apprehensive. Well, I'm feeling a bit like that right now but in a completely different context. My health rehabilitation pathway.
I have been doing the 'hospital dance' for the entirety of the last 5 and a half years and it has been a long, tedious experience. People have come and gone from nurses to kitchen staff to doctors to allied health, but my team framework has remained very similar. I have had a structure that has remained largely unchanged and a process that has for the most part, been slow but somewhat successful.
I'm now facing a new experience where there is potentially a reduction in my allied health rehabilitation and I feel like I'm in limbo. It hasn't happened yet but it feels like only a matter of time and it will all be so different. So different from what I have known the last few years and so unknown. For the nearly 4 consecutive years I spent in hospital I had the same kind of routine that was almost identical every day and then since leaving hospital, my rehabilitation program has involved the same few days at the hospital seeing therapists every week. It has been a constant state with an ongoing and explicit goal of improving my function and independence. There has been times of uneasiness with shifts in direction but the task has always been clear and the path guided, none of this limbo business I'm beginning to experience now.
Although these services have not ceased yet, I feel like I'm in limbo because thinking about the changes has me wondering where to next? And do I want this change or not? I think the worst part in this instance is that I honestly don't even know what I want. I desperately want to not have to attend hospital multiple times per week every week but I also don't want to loose the therapy I am receiving. In my subconscious and maybe even my conscious mind, reducing my rehabilitation signifies to me that maybe there is less hope. The fact that people are working with me to improve my function and life has always assured me that not only myself but others have hope of my recovery/improvement. With the services potentially being withdrawn what does that mean?
I'm told that reducing rehabilitation is a good thing because it means I'm doing better, which I am, but to me it seems quite the contrary. Yes, I am improving and making some really good gains in some aspects, but at the same time I still cannot do everyday tasks like sit in a normal chair or wheelchair for longer than 7-8minutes before losing consciousness or put both arms above my head for example, and that is frankly not good enough for someone in their twenties - not eighties!! I am happy people can see my improvements but I am concerned because in the scope of life and function, I am still severely limited and far more dependent on others than I am comfortable with. There is so much to work on and improve so is now the right time to reduce? Does anyone see it like me? Or is this all that is expected of my recovery? Should I fight to stay at this level or fizzle down and except a professional opinion? Maybe it is because I'm doing better? I don't know.
I don't know what I'll do with myself, nor how it will affect my ongoing journey and that part has got me stumped. I have known structure and institutionalisation in hospital the last 5-6 years of my life so it is all just very limbo and I guess a little scary.
It could be an exciting transition where I might be able to find myself a new hobby or work with external options and focus on my university studies or it could be a real shock and I'm a little nervous of the latter. Maybe this change should carry a positive connotation or maybe it is negative, I just don't know.
When something becomes part of your daily life and health journey for so long, it is hard to see beyond the known. Limbo land here I come...I think.
