another normal- again

I have lived with a disability caused by an autoimmune disorder for just over 19 years now.

In that time I have have had to shift my expectations at least once a year, sometimes more often. So the term “the new normal” makes me feel a bit uncomfortable.

But when it is presented an idea of as absolute, as a way to start a conversation, it can help.

I also don’t think of myself as homebound. Yes I have 90% of my support at home, the rest is all of the essential staff who help make sure I can get the medical and neccessities I need. And friends and whanau who keep in touch.

My home offers me safety, it offers me stability, and it lets me live my life at a pace I can live at.

I would absolutely benefit from infrastucture that could allow me more access outside my home but I do find the term homebound to be quite harmful.

Especially in a pandemic in which so many people suddently find themselves having to isolate.

My home as a safe haven is not just a happy accident, we have worked hard to make it so. And it’s most certainly not universal that people are safe at home.

What my home offers is shelter. It offers even surfaces, no stairs, my bed, the sofa, my medicines in one place, entertainment, space to stretch and do low stress exercise.

Right now a lot of people in my home city of Tāmaki Makaurau (Auckland) are dealing with another round on restrictions of public interactions.

There are people who cannot stay home, they have no sick days, they have to keep working. There are people for whom home is dangerous.

While my home is safe and supports me I will appreciate it as not a given. That every day I am able to be safe, to be warm, to rest, I will accept and be grateful while not taking it for granted.

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