Not so splendid isolation

18 May 2016

I’m surrounded by people every day. A carer who brings me breakfast and helps me in and out of the shower, a PT who keeps me on track to get stronger, an OT who helps me learn new skills and teaches me about my equipment, my dearest partner who laughs with me and hopes with me. And friends. And colleagues.

One might think that I don’t have a chance in hell of feeling lonely. One would be wrong.

I spoke to another paraplegic on the phone just a few evenings ago. He is designing a specialised bike for himself and others and he wanted to talk to other paras who might find such a thing useful*. As we talked, I realised how nice it is to talk to someone else who has the same life issues that I have. And I realised how isolated I’ve become in my grief and in my … uniqueness. Unique amongst my friends and family, of course, not unique in the world. But sometimes it feels that way.

I don’t socialise like I used to – partly because it is currently impossible for me to do some of the social activities I used to do (like tramping/hiking/bushwalking), but also partly because it is easy to get into a habit of doing the easiest possible thing, which is to go to work, come home and stay home**. I can understand, for the first time in my life, why and how people become house bound. It is so easy to do, and so easy to make excuses, and frankly, so easy to sit here and wish things were different, all the while feeling a mix of self-pity, resentment and guilt (for the self-pity and resentment).

I do my best to let other people in – I’m working up a ‘wheelchair challenge’ at work so people can have a go in the chair and see what it’s like, I talk to people who are interested in my situation, I’m part of a facebook community designed to connect people with spinal cord injuries and their families, I read the blogs of people in similar situations, and I watch youtube videos of people demonstrating different wheelchair skills. All of these things help, but honestly, none of them are quite like that phone call. That feeling of sharing a predicament in real time.

The power of writing this down is that I can reflect and think and become inspired to do. Every day, I ask myself “what did I do today to make myself stronger?” Sometimes the answer is “I took a nap”, sometimes the answer is “I learned a new chair skill” or “I went to the gym”. This discipline has been helpful because it helps me to acknowledge even the smallest steps in getting stronger, more capable and more independent.

Maybe I need to add “what did I do today to make myself less invisible?” so that I can answer “I sought out another para and talked about how annoying it is to be ignored at a counter because the clerk can’t see me”  or “I had a coffee with another wheelchair rider who wants to get a dog” or “I went to that bike shop that specialises in adaptable bikes so I can take part in social sporting activities”.

In the mean time, I will pout and listen to my favourite song about loneliness.

*please please please DO NOT send me a hundred links of bicycling equipment already modified for disabled people – he is designing something special, not me. And yes, I know (and he knows) there are many on the market already.

**Occupational therapists who specialise in this kind of rehab know this, so there is a focus on getting out and about – making sure I at least have a route I can do fairly easily to get to a cafe or the gym or a park or somewhere, anywhere.