This week has been really positive, which is such a relief. Since the diagnosis, it has felt like we have had very little to celebrate. This week, we’ve had good news about Mum’s health, a big birthday and I’ve been offered a new job. And we’ve had sunshine! It’s been fantastic.
One of the big things this week was the arrival of Mum’s wheelchair, which we’ve had a mixed response to.
Overall, I feel really positive about the wheelchair. She’s been struggling to walk long distances, and she lives up a steep hill (‘if you live at the top of a hill, you’ll never get flooded’, she says. Since the diagnosis, and with slightly elevated amounts of carbon dioxide in her blood, she has found herself getting tired far more quickly. The wheelchair means that she isn’t a prisoner within her own home.
She can take her beloved pug to the park and let him play in the summer sunshine – and when it gets too hot for the poor mite and he can’t breathe either, he can sit on mummy’s knee for the journey home.
She can go to the shops and go out for the day, like she did on Wednesday for Hannah’s birthday. She has so much for freedom and flexibility, because when she gets tired she can sit down. It’s a good thing.
Naturally, for Mum though, it is very different.
We had a very open and honest conversation about how she feels about the wheelchair. For her, it’s the first physical, tangible symbol of what is going to happen to her. And she’s scared. She’s scared about the day when she can’t get out of that chair by herself. She’s scared about what will happen when she is so alert in her mind, but cannot communicate with us in the way she always has. MND is terrifying, especially when you’re the one going through it.
So, yes, getting the wheelchair has been very difficult for her. I can’t imagine how she felt when she sat in it for the first time.
She said to me that she felt like a ‘fraud’. Sitting in the wheelchair, taking up a disabled bay – it didn’t feel right to her. She can still walk and stand, so of course she doesn’t want to be in a wheelchair.
I suppose people will look at her, being pushed in a wheelchair and then standing up and walking, and they will jump to conclusions. They’ll look at her and think ‘benefits cheat’ or ‘Andy from Little Britain’. That’s why we need to raise more awareness about MND. Not everyone in a wheelchair has problems with their legs or feet. For Mum, it’s her breathing which makes her tired, and that’s why she needs it for those longer journeys. Nobody wants to be judged, or stared at in the street. Perhaps that’s why she feels nervous.
Additionally, my mum’s attitude to her diagnosis has been ‘use it or lose it’. She knows it doesn’t work quite like that, but still. She exercises a little bit every day, and does everything the physiotherapists and specialists nurses have recommended. Although she’s had her iPad for a few weeks and is getting used to the software, she rarely uses it. I think she only uses it to swear – she’s very juvenile and is in peals of laughter when it uses bad language. She likes to talk because she knows she won’t be able to forever, so while she still can, she must.
The same attitude goes towards walking. She is scared that by using the wheelchair, she won’t be using her legs enough and that will make them deteriorate faster. It isn’t the case, and she is still walking around and doing moderate exercise. Still, it’s a fear she has. That’s probably why in the photograph you can see her leaving her hospital appointment and using it to push her heavy handbag, rather than being pushed herself.
Finally, and perhaps most importantly, she just doesn’t like it. Look at it! It’s an uncomfortable black seat on a metal frame – so dark and depressing. At least that we can fix.
So apart from coloured cushion covers, streamers and hand-stitched pug decorations, I am on the hunt for some of the best and craziest ways to pimp out a wheelchair! Let me know some of your ideas in the comments.