Because I was late today (because it took me three attempts to back down the driveway), my OT met me at the door of the hospital with a wheelchair. I don’t think that’s part and parcel of the Enable Wheelchair and Seating Outreach clinic, but it was a nice touch.

Enable NZ are contracted by the Ministry of Health to assess for and purchase disability equipment. These folk are going to put together an application (to MoH) for approval for me to trial two wheelchairs; one of which is powered, and one I’ll propel with my feet (shuffle shuffle). If my application is approved, Enable will source the chairs, which will take two or three months. If the chairs are a success, they’ll put in an application for funding to buy them. If that’s approved, I’ll have chair(s) by early next year.

Today was great. I came away feeling like someone with the right knowledge and authority is going to try, on my behalf, to get me what I need. Bonza. What’s frustrating is that it took ten months, and a lot of effort on my part, to get to this point. I know mine is a common story, and that others with far more urgent needs than mine have suffered worse, but I thought I’d share the circles I had to tread to make it this far.

1. Despite my symptoms and family history pointing towards FSH, it took three attempts (and three months) to persuade my GP that I should be referred to a neurologist.

2. Another month, (and $500) later, I had a clinical diagnosis, but no advice on how to manage my condition. When I asked about adaptive equipment, the neurologist said that my GP should organise an occupational therapist.

3. Back to the GP: she was unclear on the purpose of seeing an OT. But referred me to one when I insisted on it.

4. After spending two months on the waiting list, then seeing an OT three times over another month, she told me I was unlikely to meet the criteria for wheelchair funding. Could my Dad (who is involved with furniture design) or the Muscular Dystrophy Association help?

5. The MDA advised that my OT should apply for funding through Enable NZ. When I asked my OT to refer me to Enable, she said I need to be assessed by a different OT first. But I’d need to be patient, because that would take a few months.

6. Minor tantrum via email.

7. Another month, another OT, another assessment.  I was finally referred to the wheelchair clinic. A month away.

It’s incredible that it’s taken this much time and energy just to get the start of the application process. And I still don’t know whether I’ll get funding – apparently I fall through somewhere in the gaps between the eligibility criteria. Sometimes it feels as though I’m not a valid invalid because my legs still work, because my invisibility cloak hides the fact that each step is still a struggle. But today I met two people who knew better, and, without question, accepted that a wheelchair could very possibly be the key for me to access more of life again. And for that I am truly grateful.