Once I Was a Young Woman With a Walking Stick (by sarah)

This is a long piece I (Sarah) have written in response to Kathleen Stock's article Why Are Young Women Using Walking Sticks? in The Times newspaper. The article is behind a paywall. The gist of it is the concept that young women ("gen Z") are appearing using walking sticks and mobility aids because of social contagion from seeing them on social media and that they don't really need them...

This attitude is not new and it is something that causes harm - disability and dependence are seen as weakness and scrounging, especially if you are from a working class background. This social concept gets to individuals especially girls and young women and causes them to turn on themselves, "pushing through" situations that should not be pushed through, leading to more medical problems down the line and self loathing. Chronic pain patients are already at high risk of suicide before this is added in because it's not fun being in pain all the time and watching your life go down the drain is soul destroying.

The idea that walking aids cause disability and reliance is just wrong - they are not the hindrance but the freedom. Using walking sticks or wheelchairs or glasses means you have a chance to live, work etc... independently. Not using them can quite literally cripple you for life in a horrible cycle of "pretend you are fine until you collapse dangerously ill" and then being more disabled than you were before.

I had horrendous internalised ablism, as this is called, and have even almost died. I always thought I was weak and just not trying hard enough - I was in despair. I am writing this piece because there are young women in the same position now as I was then and I do not want them to suffer the mistakes I made - mistakes that will seem right to them after reading the article by Kathleen - mistakes that will lead to more pain and struggle.

Also keep in mind these are the average lengths of time for diagnosis to take for some conditions that can lead young women to needing to use walking aids:

Endometriosis = 9 years and 4 months. You will be told to keep bleeding and pain diaries for months to years before anyone will even start looking into it.

MS (Multiple Scleroses) = on average 3 months to a couple of yrs from the point of being sent for specific diagnostic tests. Most people will have had symptoms for years before they reach this point (MS can present fast and quickly deteriorating, and that is diagnosed quickly from first symptoms, but a lot of the time it presents in a less acute form). With the less acute form you also need have multiple episodes of your nerve fibres being attacked before you are diagnosed. This condition also needs a neurologist for diagnosis and the UK has a shortage.

Hypermobility Syndrome = an average of 21 yrs, which takes decades to be diagnosed with a connective tissue disorder that causes mobility issues. Even if you are diagnosed there is often very little help to be had, even for children.

If you have one of these conditions you are at higher risk of having others.

And so with all that in mind - here is my piece:

I am now 45 years old and have had head injuries and falls and damaged joints from not using walking aids and wheelchairs when I should have - why did I not use the walking aids such as walking sticks?

A mix of embarrassment, feeling it would be giving up and also the attitude of people when I did use them made me feel like I was making the whole thing up especially before diagnosis - even though I actually had a diagnosis from childhood of hypermobility I was made to feel that was some how not enough.

With family and friends actively encouraging me to ignore the physio's advice and just get on with things - they said everyone aches on long walks and whilst standing for long periods. So I tried to ignore the dull burn that would get worse and the steps that made it feel like glass was shearing my pelvis in two. I worried about asking to rest, I would be trying not to cry when there were no seats for me at the gig or bus stop or on the train - the pain would become all consuming, I would be more likely to lose my temper towards the end of a shift because pain killers were not touching the pain and in one of my jobs I wasn't allowed to take my opiate based pain killers. I was walking around on a broken pelvis with a wonky neck vertebra. My knees were actually dislocating in different ways and after one stint of pretending I didn't need a walking stick a physio was needed to teach me how to walk with a permanently mangled ankle.

My pelvis was diagnosed during Jean's pregnancy with the severity becoming life threatening during labour as my coccyx was fused on one side where my body had tried to repair the damage itself.

In the wheelchair times when I was 24-25 years old my parents took me to Hobbycraft and the little independent Sewing shop in Brentwood so I had stuff to do because I was an outside person - I had just graduated as a geologist - but I was stuck and entering motherhood where I was going to be trying to breast feed and therefore not taking the painkillers that could actually help me. I needed distraction and to feel like I was still doing something... anything so as not to feel useless.

Even the land lady was refusing to allow social services to put the bars and ramp in I needed because I was young and I surely wouldn't need them long term. I did not know this was an illegal move on her part at the time.

In Hobbycraft there were wonders - expensive wonders... and I got some card making stuff there and a whale embroidery kit from the sewing shop from 2 years previously when I had destroyed my ankle for the third time - trying to keep up with everyone and pretend I wasn't disabled. And the fluffy yarn/eyelash wool from a little while before that when I was recovering from chronic vertigo/labyrinthitis and chronic fatigue.... from glandular fever now called EBV.

I had begun to notice a pattern... there was always someone else in there like me in a wheel chair or on crutches or using a walking stick... lots of young women. But I didn't see them in other places - at the charity disco - just me, buying fun wedding clothes - just me, even in the park - just me.

Intrigued I actually asked my mum about it as at the time she worked in what is now called SEN (Special Educational Needs). She said that the women were about the right age for things like muscle wasting diseases to hit or for there to have been some complication with wombs which can cripple you in many ways and even sadly to have been attacked and left injured mainly by hopefully now exes. Mum said and that craft is often suggested as occupational therapy both to get the use of hands back or slow the degeneration and to keep people from going stir crazy being stuck in bed all the time. She ran a group at one of the local libraries teaching crafts to exactly this demographic - young women with walking sticks and in wheel chairs.

We had recently had the incident where one of my mum's colleagues had commented on how they didn't know how I could possibly go out and about in this sort of state (the wheelchair) and how they wouldn't have been able to face it.

Then there was the issue of the fact I could get myself in and out of the wheelchair and I could walk with my crutches - being made to feel that I was making up needing the wheel chair at all - so much so that I did myself active harm trying to walk without it - and doing completely daft things like getting out and folding it up so I could get on the bus - after the third time the bus driver told me not to - he liked using the ramp lowering thing which was relatively new. But I had been told off by other commuters for taking up the wheel chair space for actual wheel chair users.

Just on crutches with no obvious cast or bandages got me shouted at for using the accessible seating and that escalated even more when it was just the walking stick.

And I wasn't the only one experiencing this - being made to feel shame at the disability and also like we were somehow expecting too much or taking resources from others. It was so bad that at the group for chronic pain at Chelsea and Westminster hospital the younger attendees which was anyone under about 60 had a session on it - being told it was ok to ask for a seat and then all of us explaining how it was us that tended to give up our seats for the frail old people mainly because we knew what it was like to need that seat but we would then end up in weeks of flare up and pain or even passing out.

This was more a thing predominantly for the young women on the course who definitely still felt they had to pretend everything was fine and end up in pain so children and partners etc.. could have the best of it - not just an ok time but the best of it whilst some of us were literally dying.

The routes to diagnosis for many conditions also take like a decade - endometriosis can cause massive issues with walking and passing out and might need operations and even without ops the patient might need a walking stick, autoimmune diseases that attack after illness like flu and COVID can take years to be diagnosed and generally have to get life threatening - and we all hope it is just a post viral malaise. Hypermobility and connective tissue disorders and syndrome even when picked up in childhood can be ignored until a server injury occurs. And this is before those muscle wasting diseases are taken into account or strokes caused by birth control (yes really it is a side effect - one of my friends had a stroke before she was 20 because of this and I myself can not take "the pill" due to the blood clot risk).

Due to the biology that allows pregnancy to actually be able to happen those of us with wombs are more likely to get autoimmune diseases than those who have never had a womb.

As I mentioned at the beginning of this piece having one of the medical issues means you are more likely to have others like seizures and low oxygen levels, heart problems... and a lot of it will become an issue or be triggered in young women. Hormone shifts alone can cause these illnesses to switch on and pregnancy and birth by their very natures are traumatic.

They will often have to use a walking stick and pre diagnosis have a list of vague symptoms like palpitations and fatigue. They are on a long road with conditions that cause and are often misdiagnosed as "just" anxiety. Some of them die or end up in wheelchairs for life because no one listened and it was only when it got life threatening were they taken seriously.

Even coils (IUD) another form of contraceptive in the form of a device inserted into the womb often without adequate pain relief and various other medical gauzes and sheaths used on women can migrate into the body and causing pain and mobility issues and in rare instances wheelchairs for life. A lot of women with this issue have to argue and beg for the device to be removed and the issue is only discovered when the attempt at removal is made. These devices are often put in to help with other conditions like endometriosis.

Many of these medical conditions are variable meaning you don't know how you will be each day - some days you can climb a mountain and others you need an adapted bed just to sit up from laying. Sometimes that can be the same day.

Sometimes people see you doing exercise and report you (or try at least) because they believe you are fraudulently collecting benefits because you are following the hospital and physios advice :/ (yes this happens - yes this happens to me and yes it happens to others).

For me the advent of collapsible walking sticks was a boon because it didn't look so medical and came in pretty colours then there were crutches too! And I kept saying if I would get some nice crutches I could theme sticks and crutches to my costumes and outfits - I spray painted my chipped walking stick to make a candy cane one for when I was working in a Christmas Grotto... the crutches were prohibitively expensive but I was saving for them when post COVID I noticed some rather nasty things being said both by the general public and sometimes even medical professionals - the pretty crutches are seen as what the not really ill have... because they are a fashion accessory.

Grave's disease nearly killed me because it was dismissed as early menopause and just anxiety... even I ignored it for those reasons. Endometriosis took until I had Mary to be diagnosed as bad - I was 30 years old and had had an ectopic pregnancy due to it and had been going to the doctors' since I was 13 with periods that were more of the month than not, made me pass out and throw up. It had been diagnosed from my corresponding nose bleeds but seen as mild. I bled for 2 years after having Mary and had a wandering coil that had to be cut out... and these are just some of the things that I have as an individual have that can cause a young woman to need a walking stick with no diagnosis because they are pre diagnosis. And if you need a piece of equipment on such a regular basis and can afford a pretty version... then why is that a problem?

I was pleased that there were more options for young women going to end of school parties and graduations - they should have the option of themed walking aids that match their outfits.

With studies and investigations highlighting just how much medical gas lighting happens to women and actual investment into the chronic conditions and into things like how medicines actual work on bodies with wombs and how they work - I was starting to feel the world was turning for the good on this subject but then this article started doing the rounds at the same time that people especially young people on benefits are being scapegoated and villianised - and I felt I have to say something because I was one of those girls being dismissed as making it all up for attention and accessories.

Young women needing walking sticks isn't new just in the past young women just felt they had to hide when they were like this including never socialising and being stuck at home and now they are out there doing things - visible and living life - including working and paying their way.

I was a sick child with complex medical stuff but it still basically took me until my 40s to get some of my diagnoses including a rare genetic disorder and over 10 autoimmune diseases not to mention physical injuries - some of which could have been avoided if I had been using a walking aid like I was supposed to. That is over 2 decades of diagnostic vagueness that had me doubting myself so articles like this are so so dangerous and I just hope that any young woman who sees that article or has to deal with well meaning family or friends ramming it down their throats - gets to see a post like this one and knows that they should keep on being themselves and getting out there and supporting themselves in what ever way makes life work able for them.

In fact that is the reason social media is so full of walking sticks and crutches in the first place - not a social contagion as Kathleen would have it but rather a sharing of stories - an active statement that we exist and can still live our lives. We are no longer hiding and we are sharing so the younger generation can see and know that it is ok to go out and about and use the walking stick.

And you know there will be people who don't need them they will be rare but exist but walking home on your own as a young woman... speaking softly and carrying a big stick is also going to be appealing and still not some underhanded fraud on the part of the young woman.

Why are so many young women using walking sticks?

Because they are disabled and this article seems to want to stir up bad feeling towards an already marginalised group.

And I haven't even covered the author's dismissive comments on medical conditions that she sees as made up but have firm diagnostic criteria such as PoTS - there are many other write up from the official support groups for these conditions - here is PoTS UK's.

On the death of an abuser (by alaric)

At nearly midnight, there's a knock on the door; we had a busy evening and came home late and hungry so I ordered pizzas and we've been waiting for the knock. I open it; to the left stands a pizza delivery guy, pizza boxes in hand, looking nervously at the two police officers to the right.

"Er," says the pizza guy

"Uh, you go first," say the police.

He hands me the pizzas, and departs rapidly. I put the pizzas to one side, and prepare myself for what's coming.

Awkwardly, the two officers come in, ashen-faced, and inform me that my mother was found dead in her home.

I knew this was coming as soon as I saw the police car, mainly because earlier that day I had informed the police that I had not been able to contact my mother for a few days so I'd asked them to do a welfare check; she lived three hours' drive away so I couldn't easily just go there myself. So I can't say I was shocked. I felt tense, focused, knowing that a whole bunch of complicated tasks were about to fall into my lap, and an onerous sense of massive responsibility upon me.

But my main emotion was relief.

Read more »

Future Shock and Its Rot (by sarah)

We are creating a new Category "Future Shock and Its Rot" to go along with things like Aethelflaed and All Things Anglo Saxon, Moon Mania and Beyond, and Ammonites and All Things Cephalopod. These are categories that define specific topics of research or longer form projects such as poetry collections. Topics written about in these "Quests" will also appear in other categories such as history or technology, but tend to have over arching themes that need looking at all collected together rather than just disappearing into the broader categories.

I (Sarah) have been debating the addition of this category for a couple of years now because I am aware I straddle two worlds - Art and Science/Craft and Technology and though people would like to split them into exact dichotomies they are not, but they do tend to exist socially in distinct and separated communities. I have always seen myself as a bridge between those communities - back in the day helping artists with websites and following the progress of accessibility tools without which I would not have been able to complete my degree, as at one point I had lost the use of my hands for even holding a book to read, and of course my interest in green technologies and medical advancement as well as the intersection of tech and art in things like case modes and poems about Markov chains.

My two worlds are imploding and exploding and warring and hating and hurting in a great big mess involving greed and witch hunts and a perfect example of dipoled thinking that is currently crippling our society in everything at the moment.

The topic I am avoiding writing is of course AI - a meaningless term in and of itself. I have avoided writing about it because as I said I straddle the two worlds and am in the weird position of watching as a tech utopia I had envisioned 20 years ago can now never be, even though the technology for it now exists. And watching those technologies being badly and irresponsibly made and used causing ecological and economic devastation whilst still having to defend the use of technologies that provide access for disabled people like me, which have all been rebranding as AI for marketing purposes, and having to field issues such as getting my work rejected because I have "obviously used AI" when I have not, but work of mine that has been published has been scraped and I write genre anyway..... or my photos of storm light looking too realistic or the astronomy photo montages... a story of false AI use accusations that can currently sink your career.

I was loathed to start writing without doing a lot of research and then even more so when I realised it would be a topic I am on both sides of - something that will endear me to nobody and actively harm my career and then the issue that I am now going to be filling our over 20 year old blog with terms that may break who finds it and associates all our work with AI because algorithms can not get the nuance or even often the bluntness of a written argument often misunderstanding whether something is for or against a thing let alone giving complex overviews.

So I spoke to Alaric and the kids about this to check everyone was ok with me writing and potentially breaking our family blog and then I started my deep dive. And some of the stuff I have mentioned above happened after I started this deep dive and I realised I didn't want to just be writing about the negative either - there are plenty of awesome things happening but at the same time as I tried to research this topic and some stuff for post COVID revival projects. The more obvious it became that the wonderful window to people and knowledge that I had watched grow throughout my life was dying or in its death throes. The internet as I knew it doesn't really exist and that added a new quandary - was there any point in even attempting this? Will people even see it?

My conclusion was that it doesn't really matter if others get to see this as I need to put it down in writing so that I personally know where I am going with it! And there is rot and destruction and active death but there also needed to be scope to still celebrate and mark the good and just discuss the "ugly" or ill fitting parts. Bits that might fall into the good or the bad depending on how they are used or implemented.

I had already written Future Shock almost a decade ago now and that techno-social aspect has lingered in my thoughts and the disparity has grown. It was the moment we realised we were living in the future - I remember Charles Stross mentioning his similar moment which was a laptop-using cybergoth girlfriend and a "I'm living in a cyberpunk novel" realisation.

I am alive due to medical tech and people I know have been using AI to find and fight cancer... brain injury survivors and the elderly struggle to use the online world the doctor's surgery try and force you to use to order prescriptions and make appointments... I have had to talk vulnerable adults out of actions AI chat bots have encouraged...

Once upon a time I was very excited about Google Deep Dream and trained it with photos I'd taken to produce a book baby and other bizarre concoctions and my poetry was on a website under a specific licence because it was being used with permission for a language model to create poetry. These were interesting and fun art projects - the images were delightfully weird and the poetry, so obviously generated, was the entire point. This was machine art with human curators.

So how I can say I am anti AI and I definitely can't say I have never used it - other artists when I explained my projects to told me to rename them - they aren't the same as what is happening and accessibility tools are not the same... but on some level they are, and this is where the tangle exists... pretending you have drawn something created, and where the material used to train the AI come from, is important but is a distinction many in the Arts community do not want to acknowledge or more likely simply do not know about. The poem generator was also next to a poetry ping pong where different types of words are on different coloured ping pong balls and you turn the handle to produce a sentence - they both used the same under laying language constructs... this was a Literature Festival about 20 years ago - these fun things could not happen now.

And what even is AI? What is meant? Artificial Intelligence has meant many things to many different people and those in industry use it differently from those in academia, who have several uses depending on which research groups they work with, and this is all different from sci-fi readers which is different again from the general public and of course the marketing department is something else again. So there is a language barrier, and when I was first looking at writing about all this there actually was not the language to do so - sure I could make up terms but sometimes it is best to wait and see what words emerge. and sometimes due to dual meanings or ambiguous or rarely used acronyms you still end up making up your own terms for things. AI needs a lot of defining at the moment and it is a forever shifting landscape under my keyboard clicking fingers.

To try and work all this out I have been attending tech events and discovering some awesome charities Tech4Good SouthWest and more weapon design companies masquerading as humanitarian aid than I thought possible.

When offered sessions with experts I have taken them... they suggested I write a series of articles, or a book, or a series of workshops to explain the whole AI thing across multiple industries and the first time I was like "but... but that is why I am here... I wanted another answer - case studies I could point people at - lovely summaries" but apparently they do not exist yet and as the months drew on and I was getting the same response in despair I have been thinking this is going to be more than a simple few blog posts, and I don't really want to do it, but I can not see disabled people excluded from creative spaces just because of a confusion of word use and I can not leave the dangers of chat bots left unsaid and I can not ignore the environmental impact or the lost legacies of AI contaminated medical data bases.

And I can't ignore that sometimes AI is a tool for art but that the ethics of using ones trained on stolen art has possibly destroyed any legitimate use of it for that. Curation, intention and directional lead are important with inkblot paintings as much with AI which is why I am horrified to see such bad images being produced.

At an arts strategy group I attended the AI Good or Bad Session and I said "if you are going to steal the art and cost the earth can't you at least make sure there are no extra legs or pugs of a million eyes."

The environmental impact is bad - you can tell it's bad by the fact that companies dumped their green credentials in a way that had the geek communities in uproar. With situations like noise pollution caused by temporary generators in car parks and extreme energy and water consumption and that is before we look at emissions in general and building on what had previously been protected land (or at least attempts including here in the UK).

The concept of Meek Geek has been supplanted with Crypto/tech/AI Bro and all our heroes are dead or have been exposed as the villains. The great philanthropy future is drowning under billionaires, and the coders with consciences are working for community interest companies and not really making much money.

This keeps sounding like it will be all depressing but it won't be, honestly - I want to look at ways forward and positive developments too! I mainly want to untangle it all.

Yay! May – Gloucester Storytelling Cafe (by sarah)

Today!

Thursday May 7th 2026

7 pm doors for a 7:30 pm start

Pay what you want

The Folk of Gloucester

99-103 Westgate Street (just down from the Cathedral)

Gloucester

Gloucestershire

GL1 2PG

Fiona is amazing - I really loved the story walk she did for use a few years ago. The Gloucester StoryTelling Cafe has just turned 3! And we are hoping to bring back Chloe's competetion for The Bardic Chair of Gloucester as a position - so watch this space!

8 min open mic slots are avaliable too! Though you have to brave the hat, or box, or vase of choosing!

I am also working on a specific website where we can archive and catalogue all the events and workshops properly!

Chloe's dragons often reside over the monthly cafe sessions and last month they went on a little excursion and ended up on stage at The Kings Theatre. They were very pleased to have taken part in Guards! Guards! a Discworld Play with The Crown Players (As was I) but they will be back at the cafe tonight!

They were joined Blagrave Chelton and Errol Mk1 - here they are chilling back stage.

A Year of Sounds I Never Knew (by sarah)

It's been just over a year since I found out I was deaf and had always been deaf to some extent. I went because my hearing had gotten worse - it often gets worse when I have colds etc... and then goes back again except I had covid and then covid and more covid and somehow unlike my sense of smell it wasn't returning and now the TV and music was very loud and I was aware I was frustrating people. And my understanding of speech was comical at best.

I have (Pendred Syndrome)[https://en.wikipedia.org/wiki/Pendred_syndrome]. (yes I have the "wrong" thyroid condition because things are never simple and that sometimes happens like two types of thyroid illness on top of each other).

Fevers, infections and head injuries cause step changes in my hearing. So I may not have actually been born deaf as the loss with this kind of deafness can happen during early childhood but I know I was a deaf child and that I had huge problems with infections and tempereatures as a child. I was also being seen by ENT (Ear Nose and Throat) and getting speech thearapy at the Deaf School. But I had gromets and I don't know if things were not explained properly because I could hear so much better after the gromets for glue ear. So much so the world was completely over whelming and I became aware my speech was wrong and stopped speaking for a bit - I was 4 yrs old for the first lot of gromets. I missed most of my first year of school due to infections and an immune response to my blood transfusion.

Weirdly this should have caused an idnetity crisis but it hasn't it just kind of provided some clarity for me. My mum had the same type of deafness, my uncle was deaf and I had two cousins who had to have hearing aids as children. I have since discovered more aunts are also deaf and infact have the implant which I was told I was too old for!

I grew up with signing and subtitles on all programs that could have them and my uncle was very deaf. It was not obvious I was deaf inside my family because I had more hearing than a lot of the family and if I needed to lip read to understand people well... I had been nearly completely deaf whilst at the critical stage of childhood language aquasition - that was not supprising but I thought it was a processing issue - I have actually been getting by on chaos guessing - words you wouldn't think are similar from sound are with lip reading leading to some humours mess ups and more frustration and tears - I thought I was thick. Now I know to watch for it I can not hear people when they have a hand over their mouth - I thought the hand blocked the sound... but its just even if I have a video on silent I hear words when I see the mouths move.

So year I am not what many would consider deaf I can hear sounds but not the middle range - a cookie bite on the graph apparently. And annoyingly and most importantly right were a lot of people speak. I can hear high pitch and low pitch except since the head injury I have had continual tinitus - three different sound variant sometimes just one electric hum and sometimes all of it at the same time including a high pitch whine that previously I would have associated with passing out. I had a laughable conversation with the audiologist where I thought I was mucking up the test because my tinitus was bad that day and I couldn't tell where or when the high pitched signals were - this was how I found out that tinnutis is a form of deafness.

I thought a lot of people mumbled and the kids have realised they have a special talking to me voice which is higher pitched than their normal vioces and a lower very deep one for if they need my instant attention.

The hospital told me that I had adapted too well for my own good as it meant I didn't get support that was actually needed. Also my eyesight was damaged by covid and alot of the change in my hearing was actually just my eyesight getting worse so I couldn't lip read as well. Bare in mind the Graves Disease and possible diabetes stuff affects eyesight too. I do infact have new glasses and yeah the eyesight is worse again but the eye health is actually better than it was just after my first lot of covid. I am still on thyroid treatments - weird thyroids are infact part of this type of deafness which is a rare recessive that appears globally but it is one of the main hereditry types of deafness.

Apparently when I was at school the emphasis was on being able to get on at a hearing school so as soon as it was considered I could do that support would have been withdrawn. I am pretty angry at this to be honest along with being told off for talking with my hands/movng my hands around.

Part of this journey has also bought up the fact that I thought everyone understood at least slow finger spelling - they don't - I understand simple stories in sign but Alaric does not - this is a weird realisation. I am not good at sign - nothing seems to quiet match the stuff we used and mum moaned about this as well but still there was some understanding - I remember her beaming at a lady who signed to her just after her stroke when we were out for our Christmas walk - that is another complicated story - sign languages and systems can be bizarly controversial.

Yeah so I am angry or rather angyier.

What else?

Well I now have hearing aids... I find changing the batteries a pain and almost ate one o.0 not brilliant! They sometimes make my ears itch, I have scarring from the gromets and evidence of having done water sports in the UK (surfers ear). I do not have the right number of turns inside my ear which is why I have always struggled with balance and also why it took physio longer to re aling my ear crystals and sort my balance after the head injury. I had a scan - very scifi head cage type thing just to check as some rare cancers can cause the same issue. I think this might be the sort of cancer one of my friends had that cause them to go deaf.

The hearing aids are slightly too big and hurt a little, but have given me so much, I heard whole extra bits of bird song and music - I cried at The Lord of the Rings sound track - there was a whole extra bit I just had never hear. Rain makes a noise. This week we went to the sea and the sea... I could hear it from the top of the beach - it sounded different to how its always sounded to me as well. Cheepy little birds sound the same but crows etc... do not - there was always a puzzle for me TV crows did not sound like crows and I was always perplexed that they made them sound like that... they actually sound like that its just the TV was amplifying the bit I can't normally hear so I was hearing it (hope that makes sense!).

Sometimes the world is too over whelming and I take them out or turn them down. Others have said this is the wronge thing to do and they went straght to wearing them 18 hrs a day or all the time they are awake but they have all lost hearing due to age and so ts given them back what they had. And though obviously my hearing is worse so it has given me back what I had lost but it has also given me so much more - not full hearing - they just can't actually do that. I find sometimes it activates my headaches if they are in too long - I am having to learn new language/sound processing and I am mid 40's even if they could give me full hearing I apparently would be unlikely to then be able to process it all.

Someone else told me about the drastic difference between the private £2000 hearing aids and the nhs ones - a world of difference but I am still over awed but what I have - I think it will be sometime before I would consider trying to aid more sounds to the melee!

A couple of friends have questioned why I have been calling myself deaf - I have some hearing... well for a start the drs told me I was deaf, and gave me hearing aids. Alaric also pointed out I am reliant on lipreading and the Deaf Association says that affect on language is a big thing. Very few people are profoundly deaf which is what most people think of when you say deaf. I already knew that was generally Deaf with a capital D. My friend was like "oh so your just hard of hearing" and I suppose that is a discription just one I kind of associate with getting old so it just didn't seem to fit with my situation - I knew I was a deaf child so it seemed right that I am a deaf adult... I am not really sure what the correct phrases are other than knowing it would be deaf with a little d rather than profoundly Deaf with a capital D and I don't even know how I know that. Medical people have only used the word deaf with me.

The deafness is in both eats - bilaterial is the term they used. Due to the kids I have been under going genetic testing which apparently the endocrinologist can't access even though the results affect things to do with my thyroid. Apparently if I hadn't already had kids I would have had genetic councerling - I am not sure what that means - but this is a rare recessive meaning the kids are carriers at the minimium. When asked if either of them appeared to have hearing problems I had to answer that I didn't think I was the best person to notice that - as I have a family with very deaf people in it. They agreed.

So the world is loud for me! This can make large gatherings even worse than before but there s a restuarant setting on my phone and being able to directly pick up the mics at festivals etc... has been amazing!

I want to learn BSL (British Sign Language) but am shy - I know the ladies at the Deaf Association always sign "help?" when asking me if I need help/assistance for my batteries. But I don't sign back. Alaric completely missed they do this.

I am sure you are all already bored of me going on about this! But it is revolutionary for me - I spent so much time feeling loney and stupid and so much of that can be directly laid at the feet of being deaf.

This that are kind of bonuses but also my own internal albilism - if I had been treated properly as a child I would have had a head cage - oh the irony of being more susceptable to head injuries and them also being more catastrophic and being a wild card child (ie one always getting into a pickle breaking bones A&E trips for stitches in my head... but if this had happened though I would have still been me I feel the bullying would have been worse and I would have been sent to the "special" school and though it provided some of my friends with amazing support I doubt I would have gotten to go to university - kids from there just didn't. The other is seeing how Mary is affected by their ADHD... I think it is basically the same as mine but I was deaf and bizarlly this acted as a bit of a sheild for overwhelm - the overwhelm is quite bad with the hearing aids and that is still no where near full hearing let alone over sensitive hearing.

So I am deaf. This is still weird! I now have to put my ears in as well as my eyes on and remember my legs (crutches) before leaving the house!

Also I get to be a deaf musician and song writer - who knew?!