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I’m an autoimmune patient and I want you to hear me
I am very open about my disease and the painful journey I have had to go through to get my health back. It is because of what I went through that I am now so passionate about educating anyone who will listen, and it is because of my journey that I am so passionate about social media.
However I also find it so frustrating working in an industry that does not listen to it’s core customers – indeed often does not consider patients as a customer. I work in an industry that emblazons its websites with words around patient centricity but in reality does very little for its patients. I work in an industry that has huge teams dedicated to marketing and communicating to doctors but only has small teams (sometimes a single person) dedicated to patient interactions and communications. How can we as an industry talk about caring for patients when we do not even resource our patient advocacy teams appropriately or hire patients to be part of those teams? I have already written about the fact that to work in patient advocacy for a pharma company you need to have experience in working with governmental agencies but not in social media and not as a patient. Surely patient advocacy teams should include actual patients?!
Whenever I have the opportunity to share my story with pharma teams they are often blown away by my passion and by what I say but sadly I feel like nothing changes. I feel as an autoimmune patient our voices are just not being heard by the very industry that often saves our lives. I am frustrated as an autoimmune patient that our voices are not being heard because many of us do not have a terminal disease like cancer or a visible disability. We are not dying but we are suffering.
Many of us are surviving but not “living” – we battle on in silence, we suffer in silence, and we often carry on being stigamtised because what we have is not understood or visibly obvious. Just because you can’t see our pain does not mean it is not there. Just because we do not have big patient associations behind us does not mean we do not exist. Just because we have a chronic disease that will not kill us does not mean we are okay. We battle on but we want to be heard and there are more and more of us out there.
I am passionate about raising awareness for autoimmune diseases because I am an autoimmune patient. I am passionate because time and time again I meet another patient, or friends and family of an autoimmune patient, and I am struck by the same stories we share and by the fact that often we seem to be ignored. Just because we are not dying (or at least not quickly) or because physically we look healthy does not mean we are not suffering. Just because our conditions are not always fatal does not mean we should not be heard. It is time for our voice to be heard.
It is time for us to stand up and tell the world that it is not okay – we are suffering and we need support. We need support to fund research to find answers. We need support to help make people understand that not all disabilities are visible. We need support because frankly when we have a bad day it is the equivalent of your worst nightmare but we persevere – and often in silence. We are so much stronger than you could imagine but we are also in desperate need of your support.
All we ask is that you hear our voice and support us in our daily struggle – because together we can fight these diseases and together we are strong.
Watch out pharma
Today in one of my mentoring sessions we were looking at the use of Artificial Intelligence in the pharma industry. This in itself is a fascinating area to look at but equally fascinating was the discussion the topic generated – namely the changing dynamics of the healthcare industry and the pharmaceutical industry’s continued snail pace of change.
As we looked at some of the new players entering the market, such as AI startups like BenevolentAi or the big players like Google and Apple, we discussed how pharma is starting to miss increasingly large value opportunities in healthcare, which tech companies are seizing. Whilst currently much of the pharma industry still remains clearly in the domain of the pharma companies that may change in the future as the industry fails to adapt to changes being driven by technology.
Looking at AI & clinical trials for example – currently clinical trials are very clearly the domain for pharma because of the huge financial investments required but also because of the need for highly skilled and experienced people to work in this area. However as AI makes inroads, for example in molecule identification, what’s not to say that non-pharma companies might look at this area and bring in their technology expertise and just hire / poach the expertise they need to run the trials … or indeed just outsource to the CRO?
This article also gives the nice example that technology will increasingly play an important role in treatment and if tech companies find that the pharma industry is the bottle neck to their products what’s to prevent them just buying their own way in to the industry? Once this happens pharma could potentially face major issues as all of sudden their direct competition no longer comes from another slow, cumbersome pharma company but rather an agile, dynamic and fast moving tech company.
And this leads on to another factor that is also hindering the industry namely how cumbersome and slow the internal systems and structures are. Even when a pharma decides to partner with a start up (which is happening but IMHO not as much as it should be) often the clash between the two cultures proves a major obstacle to the success of the partnership. While a startup will expect to move quickly – and may need to move quickly due to limited funds – they then find themselves with a partner who may expect things to take years (by which time the startup has run out of funds / has lost key people / etc.).
Many people in pharma argue that due to regulations this is a totally different market and it is the regulatory environment that hampers speed I would push back on this. Time and time again regulatory constraints is bandied around as an excuse when it should not be. The length of time it takes for a pharma company to draft and sign off a contract or agreement with a startup for example has very little to do with the regulatory environment but rather with the internal systems and staff.
Another cultural aspect that differs between pharma and tech companies – and again which is only partially linked to the regulatory environment – is the right to fail. Traditionally pharma, like many other industries, will only launch or release something when it is perfect, which contrasts with the tech industry which focuses more on agility and adaption. Many tech companies will launch something as a beta version – so not final – but will then adapt it based on feedback and data. Whilst this approach may not be appropriate for the actual pharma products there are many other parts of the industry that would benefit from this approach.
So will we be losing our jobs to the likes of Google and Apple? Probably not in the near future but if pharma companies continue to only adapt at a snails pace it will become less of a philosophical debate and will move closer to reality. And what is certain is that as pharma tries to deal with increasing costs and prices pressures if they do not start to look at the full value picture of the healthcare industry they will lose out on potential new revenue and value sources – and there are plenty of non-pharma companies lining up to grab this value.
Monday motivation
One of my main activities at the moment is supporting clients set up and run Reverse Mentoring programmes. As part of this one of the things I do is lead and support groups of Mentors, many of them digital natives, and part of this includes building and driving an online community for them. Today I thought of starting a Monday Motivation stream and as such I was looking for motivational quotes.
As you can probably imagine the internet is full of motivational quotes – but I actually found quite few were far from motivational. Many of them essentially were telling me to work hard if I want to succeed – not rocket science but I do not find being told I need to work hard that motivational either. For me the motivation is what is driving me to work hard – hard work in itself is not the motivation for me!
I also found some of them could also have a detrimental effect, particular on the younger digital native Mentors who are just starting their careers. Some of them imply that if you only work hard enough you will succeed and everything will be okay. From experience I know that sometimes no matter how hard you work at something it still fails. I also know that sometimes you simply cannot work that hard (for example due to ill health) – what do you then? Does that make you a failure?
But what about when talent does work hard? Where does that put you if you don’t have talent?
I think far more helpful for my young mentors is to understand that working hard and trying is important but also to understand that if your heart is not in it, or if circumstances are unfavourable, you may not succeed … and that that is not the end of the world, as long as you can pick yourself up and move on. One of the most valuable lessons I have learnt is to accept that there are days, or bits of work, that just do not go well – and that I should not blame myself (well unless of course it really was my fault!). I learnt that sometimes it is okay to just sit back and take a breather. Sometimes it is okay to have a lazy day. Sometimes shit just happens – and you will need to find your own way to deal with this, whether it be taking a sofa day or hitting the gym or working harder. Dwelling on what went wrong to try to find the lesson to learn (because these quotes tell us to learn from the bad) sometimes is just not healthy or productive – sometimes we need to just accept, close the door and move on.
I also learnt that sometimes you just have to work through the bad – and that it will not get better no matter how hard you work at it so you have to find ways to motivate yourself through it. Hard work does not always lead to success but is part of life. You need to find your own personal, and ideally non-work related, thing to motivate you through the bad days, whether it be a holiday of a lifetime or that new dress you want. You also need to balance your motivators with big things (the holiday) as well as small short-term achievable things (such as the dress).
Finally working in reverse mentoring I think it is also important to understand that what drove success 10 years ago may not be the same thing that drives success today or that will drive success in 10 years time. The meaning of “working hard” and how we work has changed considerably, and will no doubt continue to change. In the past working hard might have a meant a 9-5 day working in an office but today it could mean more flexible schedules and working remotely. Today’s leaders will need to start leading differently to deal with the changing dynamics driven by technology and societal change. Whilst we need to learn from past and existing leaders, equally today’s leaders need to learn from the younger generations because that is where future success lies. That is what makes reverse mentoring such a valuable tool – and this is what motivates me to work hard in this space.
AR versus VR
This morning I was reading about the difference in opinion between Apple’s Tim Cook and Facebook’s Mark Zuckerberg on whether AR or VR is the future. In my opinion they are both the future in their own different ways and for different audiences.
As an owner of a Samsung Gear VR I have to say that I think VR is pretty cool and can imagine it will only get cooler with newer technology. The opportunities for VR are huge, from gaming, to education to healthcare. I particular like the way VR is bringing hope and relief to patients, for example through sensory therapy for burns patients (the use of VR therapy during bandage changing saw a significant reduction in pain).
Currently though VR is still somewhat the domain of gamers and tech “geeks” like myself. With the advent of cheaper headsets this may change but will VR ever become a mass market concept? There I am not sure given the “isolationist” nature of VR – namely that you have a headset on which immerses you in the VR world but at the same time can “remove” you from the real world and real contacts. I am not sure I can imagine the masses sitting around in their own world with their headsets.
AR on the other hand exists in the “real” world, being simply augmented over reality. AR offers benefits in the same fields as VR, namely gaming, education and to a degree health too. However the lack of full immersion can also make AR less impactful that VR. What AR does offer however is the merging of technology and real world in a way that people can potentially enjoy together. AR is no longer a new technology though and we also have not seen it take off to follow the hype that surrounded AR a few years back. We also see AR still being used by individuals in their “own” worlds like the Pokemon gamers. This could of course change with new uses and versions of AR, and AR could become something used by the masses in their daily lives, either individually or in groups.
Both technologies offer great hope and opportunity but in my opinion both will always remain more for the young or tech savvy rather than technology for the masses. Both technologies have been surrounded by masses of hype that, to date, has not lived up to expectations. I suspect both these technologies will slowly become part of the norm in certain situations, such as in sensory therapy in hospitals, quietly and without great fanfare, while much of the hype will vanish or move onto the next new technology. But who knows ….
Thank you Facebook for the hurricane updates
One of the main services that I offer my clients is social media coaching and reverse mentoring around social media (and other digital). I often get asked by my mentees what the point of some of the social media channels is. Obviously as a patient advocate I have lots of very relevant examples of the value in healthcare but right now I am also able to share another great value add from social … the “marked as safe” functionality.
I think we are all avidly watching the news of hurricane Harvey, Irma, and Jose, as these forces of nature smash into land. As an active animal rescuer my thoughts go automatically towards all the helpless animals trapped – either because they are strays or because their heartless owners left them to the mercy of the storm (i.e. left them to die). Through my animal rescue work I have also got to know many other animal advocates across the world, including in the Caribbean and Florida.
Thanks to social media, particularly Facebook, I have been able to find out about their last minute rescue efforts and also follow how they are coping with the hurricane. Thanks to Facebook’s awesome “marked as safe” feature I can sigh with relief as one by one they log in and let us know they are safe. One of my Facebook friends has been able to stay in touch throughout the hurricane from her bathroom, as her house slowly got ripped apart around her, all thanks to Facebook. She actually disabled all the apps (to save on battery) and was using Facebook mobile and text messages to another friend in California who posted on her behalf and this way was able to stay connected for all the hours of horror that she went through.
Thanks to social media I was also able to follow the dramatic rescue of dogs from a flooded shelter in Texas, while I was in Bali on the beach. I followed the story unfold as heart-wrenching photos of the flooded shelter with the dogs still stuck in their enclosures emerged. The shelter owners begged for help on social media – they had been left to fend for themselves as the authorities focused on rescuing humans. The call went out for people with boats to help and then for help in finding somewhere to house the 70+ animals from the shelter. And social media responded! I nearly cried when I saw the post that they had managed to get all the animals out – and this is largely thanks to publicity that social media generated.
One animal rescue friend however remains silent – and I have been checking his Facebook multiple times a day to no avail. He is in Puerto Rico and is known as the “cat man of Puerto Rico” for all the amazing work he does caring for over 200 stray cats on the island. His last post was heartbreaking as he had gone out to feed the strays one last time before Irma hit and had no idea when he would be able to get to the cats next and how they would survive the storm. I am hoping it is simply that he is without power and as a result of the infrastructure damage can’t get online to post but as each day passes my concern for Glen and his cats grows.
And so I keep checking … and cheer myself up while I wait to hear that he is okay by following all the amazing animal rescue stories that are filling my Facebook. Hopefully next time one of my mentees or workshop attendees asks me about the value of Facebook I can share the “marked as safe” functionality as a great example … including that Glen was able to let us know how he and the cats survived the storm.
Thank you Glen and all of those who battled tireless through this adverse weather to save the animals – you are unsung heroes!
If you’d like to help with the hurricane animal rescue effort check out the HSUS website
Sexy sunscreen
The other day I saw this video from Mashable about a new UV patch from L’Oreal that is meant to make applying sunscreen more fun. Essentially the patch is a stretchable skin sensor designed to monitor UV exposure and can be scanned. An accompanying app then tells you your exposure, can remind you to apply sunscreen and also uses AR to bring a little character to life (that’s the fun bit I presume).
This video reminded me of a meeting I had many years ago when I was working agency side. A cancer charity had approached us to discuss an app idea to try to encourage people to use sunscreen. Their idea was not disimilar to this concept from L’Oreal (minus the cool patch and AR) – they wanted to develop an app that would inform sunbathers of the UV levels and thereby get them to apply sunscreen.
The only problem was their target audience was young men and they did not understand their customer. They had presumed that knowing the UV levels, and subsequent danger and risks of skin cancer, that these young people would automatically apply sunscreen. They were aghast when I, a sun worshiper, flipped it round and told them that this data could be taken to be when the best time would be to get the maximum tan. I also challenged them that this app would never be used by an 18 year old on his first trip to Ibiza – unless his mum downloaded it for him and kept nagging him.
We then brainstormed around what it would take to get said 18 year old to apply sunscreen. Warnings of skin cancer and health certainly were not going to work. I came up with a very novel idea – partner with the big clubs and use sexy models. The concept was simple – have sexy models roaming the beach with sunscreen and get the guys to take photos and submit them to an online space. The clubs could co-sponsor and thereby get some extra positive publicity. The 18 year olds would learn about sunscreen from someone other than their mum and would, for that day at least, be safe – and hopefully thanks to the models sunscreen might become sexier. The photos would generate content and hopefully also buzz and with some careful promotion and PR had the potential to become a viral campaign.
Of course this idea never took – it was far to riskee for healthcare at the time and certainly for the conservative team from the charity. This was of course a shame but it also speaks to a broader issue – namely really understanding your customers and taking risks, two things pharma is not always particularly good at. There have been so many brilliant ideas, that would have benefited patients and would no doubt have been highly successful, but that die because the marketing teams involved are risk averse and conservative. It is also this issue that has led to pharma’s dominance in healthcare being slowly eroded by risk taking, modern organisations like Apple and Google. Until we can instill that same culture within the industry Pharma risks falling behind and not optimising all the opportunities that today’s cultural shifts and technology present.
Facebook campaign versus page
I recently had a conversation with a friend about what good looks like in social media, driven by a positive article about Allergan’s US Restasis Facebook page. The article talks about the Restasis brand’s foray into social media through this page and what great results it drove.
Naturally I went to have a look at the page but must admit that I do not agree with the article’s rosy glow. Yes it may have had good results at the time but closer inspection reveals some serious flaws in the brand strategy regarding their approach to social media.
The most glaring issue is that this is not a page but a campaign. Looking at activity on the page it is clearly time framed around six months. Since January this year there has been next to no activity. The brand has gone from posting regular content, driving traffic to their savings programme or other relevant material, to posting only three posts since January 2017. The content on the page is very clearly targeted and clearly driven by customer need, i.e. issues around how to pay for treatment, and for the most part drives to the brand website. Within the six month period the team have done a good job at responding to and answering questions, which gets a big thumbs up and demonstrates the understanding that this is a two way engagement channel.
However the strong campaign focus coupled with the lack of recent content really flags this as a lost opportunity to me. Rather than build a whole page, with a key purpose to apparently drive patients to the Restasis brand website, my recommendation would have been to focus activity and investment in promotion. By this I mean the focus should just have been on placing targeted adverts, including on Facebook, to drive that traffic. Building up a whole page simply for a six month campaign, rather than a concerted effort at driving long term engagement and value, is a wasted effort. It also brings with it additional risk and work due to the need to monitor 24 / 7.
Another recommendation I would have would be to focus on building up and improving the corporate Facebook presence, which is currently lacking and confusing. As a first step I would close the unofficial Facebook page which seems to be more of an employee forum but includes people replying to patient questions and issues. Now I have no idea of those people replying are authorised to do so but I would not be surprised is they are not. This is of course a huge risk to organisation but could be turned into an opportunity. There are clearly people passionate about the organisation prepared to engage on behalf of the organisation – these people could be trained and used to support the official activities.
For that to happen though there needs to be official activities! There is no official, professional corporate Facebook page, just some brand pages, and in this day and age I find this somewhat dated. By having a strong corporate Facebook page it would also provide the opportunity for brands, like Restasis, to have somewhere to post content (which can be geo-targeted to handle regulatory issues). It would also formalise and help control the discussions that are already happening – by not having a presence it does not mean that people are not talking to and about you.
To me this Restasis Facebook page, and Allergan’s approach to Facebook, is suboptimal and the sort of activity I would have expected from Pharma a few years back. Today however the approach to social media really needs to be more strategic, serious and based on a solid understanding on the value, uses and impact of the various platforms to both customers and the business. Today social media is a mainstream channel that can provide high value to both customers and the business and needs to be handled as such, and not as an “experiment” or “foray”. Embrace it, optimise it and reap the benefits.
When a restaurant ignores your gluten allergy
I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases. I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.
Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception. Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad. Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism. I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened. It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.
One of those changes was removing gluten from my diet. I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten. Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible. It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy. Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food. In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.
This was clearly an mistake. The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi. I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu. I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that). The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).
What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well. Must have been something I drank I mulled. I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce. When I asked about this the waitress informed me that the mango sauce had gluten in it! As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough! How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?! This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.
Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”. It is not something I choose not to eat. Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not. I would love to eat bread or pasta or random sauces like a “normal” person. But I can’t. And a restaurant should take my, and other’s, food allergies very seriously. I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking. Great.
Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough. Firstly there is the fatigue. Autoimmune fatigue is hard to explain unless you have actually experienced it. It is more than tired. I ache. I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one. I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days. Trust me I haven’t! Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion. In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated. But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive. Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.
That unfortunately is not the end of it. The other major symptom is brain fog. Just as autoimmune fatigue is hard to understand and describe so too is brain fog. Again I will liken it to a hangover – when you just cannot think straight – but far worse. I have next to no memory right now and have to write everything down on post-its. I struggle to clearly remember the bulk of some of my meetings – only the gist. I am struggling with people’s names (although I have never been good with names).
Brain fog however is more than just memory – it is also means I cannot think as clearly. For a split second today for example I could not remember how to look at the next week on my calendar. Basic and yet for a split second I drew a blank. I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self. She said that she would never have guessed the difficulty I was having intellectually. I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience? How would they cope?
This then brings me to my final point. Many of us autoimmune patients look fine, normal, healthy. You may never guess the battle we are going through or just how incredibly ill we feel. We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to. Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel. I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.
We do not want your pity though – but we do want you to try to understand. And we also want you to respect our health and our allergies and not be cavalier about it. If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open. I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later. Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.
I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored. Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms. Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out. Let’s hope!
PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi. And it was 100% gluten free.
#SXSW17 countdown
This time next week I will be in Austin Texas enjoying day 2 of SXSW. If previous years are anything to go by I will be having an amazing time, but may be sporting a mild hangover. My first year at SXSW was a real life changing experience but sadly my second year, last year, was far less outstanding. I still enjoyed last year but it lacked the “wow” of my first time. I suppose though this is to be expected as with all things in life!
This year I am hoping to land somewhere in between. Of course I am not expecting that same “wow” that I experienced the first time – the element of the unknown and surprise is gone – but I am hoping that this year I will be a bit more prepared than last year. I have also been looking at the programme and I am already more inspired than I was last year. I had struggled at SXSW16 to find things that really got me excited, with a few exceptions, but this year’s programme looks like there will be plenty to get me stimulated (besides all the parties and free booze of course!).
I am also really chuffed as this year I have an old friend my MBA attending along with a couple of my London friends so I have high hopes on the social side if nothing else.
This year I also have a clear objective – to gather as many freebies as possible! In April I will be heading back out to Africa to join my boyfriend for the Namibia leg of his trip and I plan on restocking him with pens and other stuff that he can give away to kids as he travels through the continent. It really struck me in Morocco that all the children just wanted pens – that was the first thing they asked for – followed by “bon bons” (sweets) and interestingly enough then following by “cahiers” (notebook). SXSW will provide me with the opportunity to gather up freebies and put them to good use. Rather than those free pens just lying around at the bottom of my handbag they will hopefully be used by some child in Africa in school. Of course I will be on the look out for more than just pens – I will gladly swipe sunglasses, toys, etc. Perhaps not the most digitally orientated objective but I a good objective nonetheless in my mind.
So if you are going to be at SXSW17 and want to ply me with free goodies just get in touch!
The Sahara
This weekend I had the pleasure of doing a long weekend in Morocco with my boyfriend. He is driving down from Zurich to Cape Town and back in his Landrover and I flew over to join him for this part of his trip. It was truly spectacular from the picturesque Riads in Marrakesh, through the snow capped Atlas mountains, to the sand dunes of the Sahara and the vast expanse of stony dessert and nothingness on its edge. Being in a Landrover meant we could get to places not many tourists get to visit and we also were able to camp out in the dessert, whilst being totally self-sufficient (his car is even equipped with a travel shower, solar panels and a proper fridge). I am truly fortunate that I was able to have an amazing experience like this and I had the most fantastic time … despite being offline for most of the time.
In this day and age to be somewhere were you truly have no internet connection, no wifi, no roaming, is remarkable. It felt as if time had stopped and there was only the here and now – with all its beauty. Of course I really wanted to share the wonder of my trip but at the same time I had no desire to connect to the outside world – to find out what new craziness was happening in the USA or what new issue was hitting the NHS. It really made the trip that much more magical being so cut off and it is an experience that I would not have valued perhaps quite as highly until I had gone through it. I always joke that I couldn’t live without Facebook but I survived 5 days without it!
The only time I went online was briefly to email my parents. They were naturally worried about their daughter going off road with some chap (they have not met my young beau yet) in a North African country and I wanted to let them know that all was good. I therefore switched on roaming as we stopped in one of the towns and sent them an email. This however is in itself remarkable because, just as I was connecting from the middle of nowhere in Morocco, they were picking up my email in the middle of the ocean somewhere off the coast of Hong Kong (they are on a cruise). It was comforting to know that I could let them know all was good – and I am sure it was comforting for them to hear that all was good my end too. Even in the remoteness technology enables us to connect with those that mean the most to us.
Of course I do have to admit that the first thing I did once I had been dropped off at the airport was connect to the Wifi and check the Beeb and Facebook (and send my parents another email this time with some photos). I discovered that actually the world had not ended while I was away and that I really had not missed much on Facebook. Oh what a surprise! What had happened though was that Whatsapp had changed – when I went to post a status update (something mooshy along the lines of being in love … ahhhh) I discovered that I could no longer do this the normal way but now there was a status tab but it only allows for photo updates not text. Change is not always good in my opinion!
Now that I am back home of course I am also incredibly grateful for technology. I will not be seeing my boyfriend for another month or so, when I will go join him in Namibia for a few weeks. Naturally I miss him like crazy but we can stay connected through Whatsapp and “old fashioned” text messages. He is also using a very cool tech device that posts his co-ordinates so I can also always see where he is and I am also comforted in knowing that the same device has an SOS function which will ensure help is sent to him wherever he is if he needs it. So whilst he is literally miles and miles away technology will ensure that we can stay close and connected and that is truly magical.
