Why treatment matters and cures are hard to balance

So the ALS Ice Bucket Challenge is a thing. It has brought up a lot of thoughts and opinions and I thought I would share mine on the matter. Double posting to both blogs as I feel it fits. Sorry to those who follow both! 


So the idea is that to raise money and awareness for ALS you fill a bucket with ice and water and proceed to pour it over your head. Sounds simple. It is crossing the world and becoming what some might call a ‘trend’. There are certainly a few who are doing it to prove they can but it seems that most people are doing it and then donating what they can. Since this all kicked off the charity has received $15.6 million as a result of the challenge, nine times what it normally raises in that time. There are 50 times as many donations and a lot of them are coming from celebrities who can throw more than you or I can at the fund. Sure, maybe they could throw more but celebs are always being asked for money and it is a delicate balance for their personal selves. No one wants to be hounded over who they donated to and for how much.


And so what if 50 celebs doing it don’t raise money? They might get copied by 50 normal people who do. I wasn’t a fan of the no make up selfie thing, because I don’t think that is a damn challenge. I go out most days with no make up. If I’m just out doing my thing and I have make up on it is because I can sense the weather is going to provoke my eczema. I could donate money any day, you know? This thing is different. Unless you’re an athlete I doubt you regularly dump ice water on your head. It doesn’t sound nice. I’ve seen many vids of Andy Murray and his team wincing their way into an ice bath. I think the important thing is many celebs are challenged to do it and while the bucket was at first the refusal it is now becoming the challenge. People are getting soaked and donating at the same time. Everyone from Charlie Sheen and his bucket of money to Chris Hemsworth and my wee 12 year old cousin are getting soaked and then donating. (Perhaps through parents). I doubt many knew what ALS was. If you said it was what Stephen Hawkins had they might get it somewhat but they didn’t know. People are looking now and that is a huge thing. It isn’t the end result I think we would want for people who are living with those conditions but it is a start. You can’t have everything at once.


Some are about raising money. Some are about posting a link to the donation page. Some are posting a wiki link to what the disease is and some assume that if you see them throw a bucket of water of their head you will go and look up the reason why. I think the important thing is hardly anyone knew what ALS was before this. They didn’t think about it. The most famous person we knew with it was Stephen Hawkins and he wrote books and was a genius and seemed like a fabulous human being. That taints perspective. It makes us think that even if things are bad it can be good. Diabetes is the same. People look at diabetics that climb mountains and not the ones who can hardly pull themselves out of their beds. Donations have skyrocketed when it comes to this illness. People are talking about it. They are thinking about it. Maybe it isn’t the way we, as disabled people and then as those who live with it would like, but it is a start. Everything needs a start and while yeah we should say ‘the next step is this’ it should also be with a positive outlook on the now. If you make people feel like their efforts, whatever they are, are not enough then they are not likely to try and do more. They parted with their $10 and that might seriously be all they have to give. To tell them it isn’t enough means next time they might not bother. Say well done first. Then say  ‘maybe next time’ is how I see it.


Say how you appreciate first. Saying it three paragraphs in? The people these people want to connect with have already shut off and clicked the X in the corner. They have decided next time their kids will get desert or they will have an extra drink at the bar. They are gone. For some their donation is the difference between whether their kids have a Sunday roast on Sunday or tuna pasta. Just because SOME people could give more doesn’t mean words don’t alienate others. Saying ‘it isn’t you’ doesn’t remove the natural flinch.


This challenge is raising awareness because people go and they look it up and if that is half of the people that are exposed it is double the amount that knew before the challenge. That matters. You can’t get everyone in one leap when it comes to these things. When it was the selphie challenge some were donating and that was fabulous but at the end of the day people now what cancer is. They know how it is treated and they know what they can do to lower their chances. No, well they know in many countries. ALS is not something that people hear about and while criticism of the event is important I think it should come after. It should come after so it doesn’t turn people away. Make people feel that they matter. People power is amazing. Use it.


Diabetes, whatever type, don’t get trends like this. People don’t really come to your marches or runs or sponsor the ones healthy enough to climb mountains. And we are one of many illnesses in that boat. If you start turning people away from donating to those ‘known’ illnesses or those ‘trend’ illnesses then why would they ever help me? It has to come in steps and stages. Personally I don’t think people donate to diabetes research or cure seekers or awareness because it doesn’t kill us quickly enough. Cancer, well you either beat that or you don’t. Blunt but true. ALS, you know it is a long hard road. Parkinson’s you know will lose eventually. People give this idea that if you do things right you can ‘beat diabetes’ but you can’t. You can only ever slow its progress in taking you. It wears down every organ. It beats down on every cell. We heal slower. We tire faster. Our kidneys are watched. Our hearts are monitored. Our brains die a little more with every hypo and every hyper sends a shock through our system that we can recover from but not fix.


Sure if you drop a building on someone they will die but if you kick them over and over again for long enough they will die too. I would cry with joy if diabetes had a movement like the icebucketchallenge. I would cry. Because people don’t donate to us. Not like they donate to so many other things. Diabetes kills many when they are older. Most of the time we can claw the children back from the brink so people don’t look at us. That is the reality. We hold on too long to make people take notice.


So yes I do support the ice bucket challenge. I support it for everyone that donates and might find something. It might be a treatment and it might be a cure. It will be better than now. Diabetic treatments rely on students going into the field and doing free work to help us. We don’t have runs where everyone wears pink. We have no ice buckets. We have no marathons. We try to do that but we go unseen. So for everyone that just throws ice, there is someone that donates money.


Pharmaceuticals don’t want to find a cure for diabetes. We earn them too much money. I’m very aware of the hundreds of pounds I cost the NHS every month, never mind year.  Looking for a cure finds treatment. The doctors trying to understand human insulin and therefore why the body stops producing it managed to clone it and now you have humulin insulins, genetic clones. We have gone from pig insulins to synthetic to human clones. These steps were all pushed by trying to find a cure. People living with these diseases are undeniably important but don’t disregard those scientists in overheated labs, under pressure to get their PHDs and then tumbling on something that saved my life.


Many say too much money goes to finding a cure. Yeah sure. Trying to find the cure for type one diabetes looked into mechanical pancreas, pancreas transfers, machines. Those attempts found the insulin pump and the insulin pump is the reason that I go to college in 6 days and back to university in 2 months thinking my life was over. I WANT them to find a cure. Attempts to find cures have always found treatments. ‘Why is this person dying. Oh. Insulin is a thing. Oh they lack it. Oh let’s give them it. Oh lets’ find the reason’.


History tells us that trying to find a cure for things fails at first. We find treatments. We find stop blocks. That is ok. Imagine if no one bothered saying we could inject insulin and do research because it wasn’t a cure so bugger off I’m researching? So what if people just want to raise awareness of a name. So what if they just want to support a cure. We need these things. Every step is a step that matters. Just because we want more later doesn’t mean that now is irrelevant.

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