I thought I’d use my platform for something a little different this time. I’ve used it before to shine a light on and dispel some of the strange facts and myths surrounding Autism Spectrum Disorder, and how life on the spectrum affects me on a day to basis.
What I want to do is raise some awareness toward another condition that is very close to my heart, called Ehlers Danlos Syndrome. Some of you maybe aware of it, but for those of you who are not familiar, I’d like to try my best to briefly explain what it is and what it involves.
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls, but also gums and nails. There are various different versions of it, which is why it’s a syndrome, but it is a very disabling and challenging condition.
Loose joints that dislocate easily
Stretchy and fragile skin that bruises easily
Soft and velvety skin
Non-healing damaged skin
Increased heart rate, especially after standing or eating
Digestive problems such as heartburn and constipation
Heart valve problems
The signs and symptoms of EDS vary by type and can range from somewhat mildly loose joints to life-threatening complications.
There is absolutely no cure for Ehlers-Danlos syndrome. Only treatments that aim to manage the symptoms and the awful pain, while preventing any serious complications.
The reason I’ve shared this information with you, dear friends, is that my wonderful wife, who you all know as Mrs Bob, has got EDS, and I’ve heard so many people say things like “Oh I hope it gets better soon”, or suchlike. While I understand that these people have the very best intentions and aren’t meaning to be hurtful when they say these things to her, it upsets me, and her. It’s like saying to me, “hopefully you’ll become less autistic”.
She struggles on a a daily basis with pain and her joints – especially her knees (which have to be specially taped up to help against dislocation, which still happens regularly. She can on a good day, manage to sleep in bed for 2-3 hours, but the rest of the time she has to sleep downstairs on her recliner. Some days she can’t get upstairs, even with crutches. She goes for regular short walks with a crutch every day, but if her knees are out, she can’t, and this has a knock-on effect on her back issues from a car accident in her early 20s.
She is always in some pain, but still tries to smile, and do the best she can without complaining, even when she knows that she’ll suffer the following day as a result of doing too much. She knows it won’t ever get better, but starts each day as new. I think it’s because she does this that most people don’t realise the daily struggle she and others with EDS have.
So please, spare a thought for those of us whose daily existence can be an uphill battle, that is often invisible.
Hi everyone, I’d like to take a minute to explain my absence of late.
It’s been a very interesting year so far. I was planning to write poetry and drop it straight onto socials, taking the pressure of another book off me for the foreseeable future. However, the best laid plans of mice and men, and all that. As I mentioned earlier in the year, I’m now working on a project with local lass and author of Sensible and it’s sequel Barefoot, Daisy Burton.
This new book has a life of its own and just keeps getting bigger. Only last weekend I sat in my office putting the final touches to the new book’s artwork, when lo and behold, I realised there was another chapter that needed writing. It seems that, for now, this project may take us some time. Daisy is working hard on it, as am I, but we want the finished article something we can both be really proud of. We’re not going to give to much away, except to say that it’s a factual book about a subject very personal to both of us.
So while we work away on this, I maybe a little quiet but I’ve not gone. I’m just a little distracted… is that a squirrel?!
Grandad – the father of a person’s father or mother – paternal or maternal. Also a fun or derogatory slang term- “get a move on, grandad”.
Looking back, both of my grandads were worlds apart. My maternal grandfather – the gentleman whose name I’ve taken as my pen-name – was a strict Methodist and retired firefighter, who always took a pride in his appearance. He had a wardrobe-like cupboard in the kitchen, where he kept his ‘going out’ coat and shoes, with a top section for his fedora and extensive shoe-cleaning kit. He used to say that you could tell a lot about a man from his shoes and how they were kept. This is something that sticks with me to this day. He also did a lot of work at his church, a Methodist chapel nearby, as a painter, signwriter and general handyman. He was a great carpenter, with a shed similar to my paternal grandfather’s shed. It’s just that this one was filled with plant pots, garden canes and spades – a tradition I appear to have taken on with my own shed. He loved to tend his garden and the adjoining greenhouse. There was an old piece of carpet on the floor. It had a comforting smell that I can still remember to this day; a blend of earthiness and wood. He was also an extremely talented artist with a makeshift studio in one of the spare bedrooms. I remember a variety of items from paperweights with hand-painted scenes, to crab shells cleaned and beach scenes displayed inside.
My biological paternal grandfather was an extremely clever engineer who spent nearly all his life working for Rolls Royce. When it finally came to the point of retiring, he was running both sides of the main works factory site, yet he always seemed to act the clown around me; more so at holiday time. I suspect that he may have been drinking a little bit, but I don’t know for sure. But even though he liked his scotch, it never took hold of him, unlike his son; grandad was always a very responsible person. He had a large purpose-built shed, adorned with his old nameplate from his office door at work. This was were he kept freezers, lawn mowers and tools, and also where spent his time after the obligatory pipe in the kitchen, until he eventually kicked the habit. . He constantly acted the fool, much to my grandmother’s huge annoyance. Like the one time he goose-stepped out the living room to make everyone drinks, while blowing raspberries. While Gran wasn’t amused, I must say my sister and I both thought it was hilarious. He would forever be blowing raspberries or making really bad what would now be described as “dad jokes”.
I’ve now come to accept that now I’m a grandad myself, I’m slowly becoming a strange hybrid mixture of both of them. I’ve spent the majority of my working life as an engineer of some sort or another. I can’t paint or draw, but I am an adequate poet and I’ve managed to put together a number of anthologies. I like to spend my spare time in the back bedroom (my office) at my desk, writing poetry, blog posts and now a book, so I do have some creative talents like my maternal grandad. There’s something I share in common with both of them. I’m rather partial to spending a sunny Sunday afternoon sat in my shed, reading with a coffee or tinkering on something or other.
Personality wise, as I slowly mature, get comfortable and eventually settle into my skin, the strange amalgamation of both my grandfathers continues. I find myself having a love of gardening, fedora-style hats and taking a pride in my appearance. Yet I also find myself acting the idiot while I’m talking to my grandchildren and making trumpet noises while wandering around the house.
I guess with these things, that we learn from our lived experiences and surroundings. I often wonder what traits my two grandchildren, whom I adore, will take from me.