That tear stained afternoon brought my reality into sharp focus. My mobility had rapidly deteriorated and there was no acute event that had prompted this. I had theories as to what was wrong with me but then even my mum’s second cousin twice removed seemed to have theories; but a theory didn’t help me do the school run.
Luckily it was the Easter holidays and I therefore had a bit of breathing room. I couldn’t see myself walking the 6 miles a day anymore and my husband’s (still felt weird saying husband as we should have been honeymooning) work meant that he could only help occasionally. I had some help from the other mums but again was sporadic and it wasn’t fair to anyone to see that as a solution. The only answer was wheels.
I can’t drive, I never have driven as I’m a fast walker and was used to covering large distances everyday; my own school had been the other side of town, it never phased me. Up until my son was born, when I was 28, not driving had been a choice, however having detached a retina in childbirth, and losing much of my visual field, that choice was taken away from me.
The options I was facing were regular taxis, a self propelling wheelchair or a mobility scooter. Taxis I ruled out quickly; they were still me relying on other people which I was reluctant to do, besides cost wise it would be at least £50 per week & I didn’t really have that in my budget. A self propelling chair wasn’t really a choice either as my arms are almost as bad as my legs and certainly not up to the distance. That left a scooter. We went to the mobility centre in our town & asked about hiring one, my rheumatology appointment was about 6 weeks away and we thought if I was diagnosed with something simple to treat that after a month or two I might be able to walk more; the trouble with that idea was that it cost £150 per month & realistically the least time we would need it for would be 3 months. Even the woman in the shop told us it was a false economy and that we should look into buying one. That was when things got really tricky.
Buying a scooter was clearly the most sensible thing to do but it still wasn’t a straightforward decision. I live in a small cottage down a ramshackle footpath and have very little storage space. On top of this we don’t have a car and need to travel to the Midlands regularly so that I can spend some time with my stepchildren. I needed a scooter that could not only go on trains easily but that could be got through stations that don’t have step free access; this meant that a foldable scooter was the only thing that would do which unfortunately also placed me in the £1000+ price bracket.
I don’t have savings, I was on statutory sick pay in a low-paid job anyway and I didn’t have the means to buy a scooter, yet needed it urgently. After long discussions with my friends and family I decided to start a fundraising page. It was horribly horribly stressful.
I try to live by the saying that pride is the appendix of emotions but my pride is more than grumbling. My ego had already taken a knock with my mobility failing, having to go cap in hand to people was almost an instant knockout. Straightaway I was faced with having to justify my choice of such an expensive scooter over and over again. I felt like I was being spoilt, as if I was asking for too much. Maybe I was, but people didn’t have to help me. I got myself into a situation where I had to reveal how much I weighed, as someone pointed out a cheaper model that might be suitable, but not for someone of my size, that was excruciating. I went on to a local mother’s support forum asking for advice on fundraising. I mentioned that I was fundraising for a scooter, but not once did I ask for donations, I didn’t even post the link. As my bruised ego was worrying about looking like an old lady riding a scooter, I was trying to think of ways that I could lessen that effect. I pondered the idea of getting one spray-painted and so asked for advice on spray-painters, I even pointed out that it was nearly my birthday and then maybe I’d get someone to get it for me as a gift as obviously I didn’t want to increase the amount that I was fundraising for. I noticed that my posts were being deleted and I asked why. I wish I hadn’t.
The reply was that I was asking for money, that I was being unsubtle and trying to get money out of people and that people in the group felt uncomfortable; that they had messaged the admins behind my back and that the admins were trying to ‘protect’ me from the nasty things people were saying about me. I was told that everyone had problems that everyone like would like to have things given to them, that everyone would like a free spray paint for their birthday. Something I hadn’t even asked for. I cried a lot. I wanted to give back the money that I had raised so far (none from this group I’d like to add). I turned down the offer from the local paper to run a story on my plight. I felt like a beggar, I felt humiliated. I wondered if perhaps I had said it wrong, I was in a lot of pain, I was on a lot of drugs, perhaps it had come across wrong.
That was my low point. Begging for something that I didn’t want. Begging for something that I hated the idea of having to have. Begging for something that I needed and had no other way of getting. I’d got the forms to apply for PIP but it takes months and I had two weeks. I cried a lot.
People were generous though. My friends, family, people who surprised me as they’re not particularly close to me, people that obviously saw I had a genuine need and wanted to help. I got close to my target and bid for a scooter on eBay and won it. I borrowed the last few pounds and emptied out my bank account to make up for the 10% that Go Fund Me takes and I was so relieved, so relieved that it was over.
I’ve seen other disabled people sharing their PayPal.me addresses, accepting help graciously from kind benefactors for the multitude of costs that being disabled brings and I applaud them. I have a shopping list longer than my arm of aids and appliances that I need to make my life easier but I won’t be asking, I’ll struggle on. Though pride may well be the appendix of emotions I can’t see me getting an appendicectomy any time soon.