Adventures of Pom

  On the 28th February 2025, the irreplaceable Dr Tuppy Owens finally rested following an almost 6 year fight against vascular dementia. "Rest in power" is a variation of "rest in peace" used to honour deceased individuals, especially those who fought against injustice or were victims of oppression, emphasising their legacy and continued struggle for social justice. We both made the promise to each other that we would keep going until the end. Even though she is no longer here, the end is not because the message and legacy still is very much alive. Please read my blog entry 'Making Lemonade'  from November 2024 and you will understand why the death of this iconic person impacts so many people and is a personal tragedy for me. I am linking here the obituaries from: The Guardian The Telegraph  an...

Nobody can tell what the future holds. That can be tragically problematic, especially when life's twists have been cruel and full of despair. But, and I say this with total experience, just when you least expect it life changes. Nothing stays the same. Ever.  What's that saying? Oh yes... 'when life gives you lemons, make lemonade'.  Well let me just say that my many lemons are big, supremely sour and full of pith (that's right, lots and lots of pith, I tell you!). Therefore attempting to turn them into a tasty and refreshing beverage is a mammoth task. Nearly impossible. Nearly.  Just when you think you are broken beyond repair, physically and mentally, it is possible to discover that you still have a lot more left to do than you thought. I am proof.  I mean physically I am still completely defined as attached to another object by an inclined plane wrapped helically around an axis (thanks to The Big Bang Theory for that definition. If you know, you know.), but men...

No. I am struggling.  My mental health is negative and I am not coping well.  This is a difficult problem to confess because I have spent a lot of time trying to ensure that my blog puts a positive spin on living with a disability however the reality is that it is impossible to stay positive all the time. Reality can often make life difficult and present seemingly insurmountable objects directly in front of us.  Case in point: an insurmountable object (sorry random guy), see below my photo from March 2023. My view of the stage from the wheelchair space at the New Theatre in Oxford, sometimes the objects in the way are literal not just figurative: (After complaining, the New Theatre have refunded my tickets and have pledged to build spaces down the front of their auditorium. Let's just hope that their pledge is more reliable than one from Amber Heard..!) My gradually degenerating physical condition is the biggest obstacle. It effects everything in my life an...

I wrote this as a guest article for Ataxia UK volunteer magazine, however due to my own weird personal circumstances at the time, I requested that they did not use it and it has been sitting in my files ever since. Upon rereading it I actually quite like it and I have decided to publish it on my blog, I hope you like it too and perhaps it will raise a little bit of awareness. Being born in the 80's meant that being misdiagnosed was common due to lack of genome testing and specialist knowledge. I went through several incorrect diagnosis' before I was given the correct one at age 7. Friedreich's Ataxia (FA). Having FA means that every day is a constant battle between my brain and my physical body.  My brain is a motivated, energetic geek who just wants a good life.  My body is a tired, weak, depressed stoner with constant brain fog. My personal war between brain and body has been waging for just over 42 years and I am pleased to say that despite it getting increasingly diff...

Since 2020 and the horrors of the Covid-19 lockdowns and shielding (when people were dying and terrified but no.10 was a party zone), there has been a rise in remote working. This was initially an inconvenience but for some people who cannot leave the house or find it difficult for reasons such as transport or physical condition, the rise of remote working was ideal. So, I thought, what if I could? What if I could, once again, be one of the working masses? The short answer is unfortunately, no I cannot do it but I am, however, very proud of what I did achieve as a result. For more detail, read on. I finished paid employment 11 years ago and this was due to the negative advancement of my physical status. I could not no longer keep up with my responsibilities. Now I do voluntary work a few times a week and I began to wonder whether I would be able to take on paid employment remotely. I joined LinkedIn and had a look at some of the available positions. There seemed to be plenty of remote...

 I don't like being called an inspiration.  I am not.  I get called that for simply living my life with my disability. I'm not doing anything special, I'm just kind of getting on with things, like most people. Just because some things are harder for me than they are for the average individual does not make me inspirational.   Not one single person on the planet does not have some problem to deal with, emotional, mental or physical. Going through life does not make you in anyway an inspiration.  I have written a lot about the importance of having a goal, a dream. Something to aim for, aspire to. Build your own future.  My nephew, Angus, inspires me to do this. He is not an inspiration just for living everyday with his disability, he is inspiring because he uses his situation to the absolute best of his ability. He aims to show everybody not to accept their own limitations without putting up a fight. This is a valuable lesson that we can all learn from. ...

  It is difficult to not just withdraw from life.  A pandemic still ravishes the Earth and I am still just going day to day!  I am certainly no expert on how to cope post lockdown, my mental health can be dire at best, but here are my 5 suggestions how to move forward with:      Socialise. Unfortunately fairy tales do not always happen. Neither a relationship, nor your true love, is just going to appear on your sofa whilst you binge watch Netflix. You are going to actually have to get your hands dirty and interact with people. I know that the idea of this sounds horrific to the people with social anxiety and the first step will always be down to you. Even this may sound scary believe me the benefits will be major. Not only will socialising raise your confidence, you will also be able to make new friends and meet people you would never usually have met.  Although there is no substitute for real face-to-face contact, social media and video chat allows ...