A photo inspiration expose

When I saw the photo inspiration I had an instant thought of snow leopards in the mountainous background. I was drawn to the colour of the mountain and I couldn’t let go of it. Then recently when printing images to use on cards I came across this leopard face and knew I was going to turn it into a snow leopard. What I didn’t know was how I was going to make this creation or what it would turn out like. As the weeks passed I still couldn’t get to grips with what I was going to do despite having coloured it.

Then it came to me, I’ve struggled recently with a long term health issue and although I’m good at dismissing it mainly because for over 30 years there was no formal diagnosis and no treatment but also because I was and am scared of the reaction I got and will get from others.  In a fit of bravery, believe me it was a fit I don’t do this often if ever and I surely don’t think it will do any lasting good I tweeted something that was on my mind, However, I am going to paste that tweet here because it is the foundation of the piece I made and it’s inspiration. “For 35 years I’ve been judged, bullied and had people criticise my life because of a hereditary genetic defect, it NEVER gets any easier!”

I usually take a very deep breath, say oh it’s nothing serious just an infection or just a bad day or I’m okay but it’s not and never will be. I need the courage of the snow leopard to draw upon to help me say this, to release it into the world so judgement can be passed on me once more but this time those making judgement will at least have all the facts.   I should probably have timed this post for #DeafAwarenessWeek but I wasn't quite ready psychologically for that. 

I have a hereditary genetic defect condition called Prearricular Sinus. The malformations result from the incomplete fusion of two of the six hillocks that arise from the first and second branchial arches. As the precursor to the name states it’s hereditary and genetic meaning it is passed on although it can occur randomly almost all known cases are passed on in the genes. Now before I digress and bore you all to death I’ll share my piece for the inspired by a photo challenge at : Ikes Art Challenges  This way you needn't read the rest of the post!

Now to the facts:

They can be singular or bilateral although bilateral are the rarest. The incidence of this condition is very low with the highest around 4-10% in Asia and Africa. Of course this means the condition is mostly found in those of Asian, African or African American decent with only 0.0-0.6% of whites having the condition and the majority of those have a singular prearricular sinus, less than 0.1% have bilateral prearricular sinus. I have bilateral prearricular sinuses.  As part of this condition there are associated conditions including: Subcondylar impaction of the third molar, renal malformations, hearing loss, branchiogenic fistulas, commisural lip pits and external ear anomalies, facial and ear bone deformations. It has recently been linked with: Cleft palate, spina bifida, imperforate anus, renal hypoplasia or renal agenesis, reduplication of the duodenum, undescended testes, and umbilical hernias are reported associations.

What this means for me is, although at the moment a dentist has not confirmed subcondylar impaction I do have Temporomandibular joint dysfunction. A combination of swelling from my ear, pharynx, Eustachian tube, throat, sinuses and other areas along with clenching my jaw to help deal with pain in my ear means my jaw dislocates when I yawn, eat, drink, smile, or have an excessive amount of fluid in my ears.

I have a hearing loss, this can be conductive or sensorineural. I have the later from birth. I have always been deaf and it will get worse as time goes on. The location and inflamation of the prearricular sinus coupled with frequent ear canal and inner ear infections mean hearing aids would exacerbate the infections. Until 18months ago the infections occurred on a monthly basis and at one point in my life I was taking antibiotics for 18months because nothing would clear the infection. As strange as it seem to many I cannot bear the thought of returning to constant infections so hearing aids are not advised.

I have facial anomalies, my nose is broken for want of a better word, my sinuses don’t work and cannot drain so a cold is almost impossible. That’s not to say I don’t pick up in the viral infection that causes the cold I do, I just don’t present with cold like symptoms. The fluid that drains through the nose with a cold or creates a stuffy nose will build up and block the eustachian tube and as it increases in quantity it pushes through into the pharynx making it so swollen I cannot swallow without pain. This drains into my throat and more often than not creates a throat infection, as it passes down my throat it has two choices, my stomach or my lungs. Most often it’s my lungs and I get frequent chest infections that are exacerbated by asthma. The problems with my sinuses means my face regularly swells unevenly making it look like I have taken a blow to the eye without the bruising. The swelling and infections around the sinuses, pharynx and jaw mean that on “bad” days I cannot swallow water let alone chew and swallow food. This can ease with a wheat bag in hours or last for days. I am lucky until the date of this post thriving has not been an issue but it could and is likely to become an issue if the swelling and infections are prolonged.

I have a lot of ear bone anomalies. I have Eustachian Tube Dysfunction, which means the tube does not drain properly, I cannot equalise pressure in my ears and I frequently have perforated {burst} ear drums. The Eustachian tube dysfunction means that the fluid in it frequently becomes thick, impossible to shift and infected. The balance bones in my ears are damaged, this means my balance is terrible. Over the years my brain has learned to accommodate, however, now on “bad” days my brain cannot cope. This tends to be when I’m physically and or mentally tired. Then I have medication to help. It does come with an array of symptoms though, I tend to wobble as though I’m drunk, find it hard to focus, headaches, irritability and the worse thing for me is the injuries because of falling when stood on a perfectly flat surface. I am VERY lucky that if I make sure I rest and get enough sleep this part of the condition is very well managed.

Eyes, the membrane on the face surrounds, nose and eyes and infections can easily pass onto the eyes. Sight can be affected and I have yearly tests to ensure there are no problems and make sure I have up-to-date prescriptions for glasses.

Regular ear infections, I'm grateful they are now reduced to once every month or even few months, they were pretty much constant, but with a now well manged set of medication ear infections are easier to treat and less frequent.

These are all alongside the prearricular sinus. However that in itself brings problems. Mine fluctuates in size {another issue that would complicate the use of hearing aids} and although I am currently asymptomatic {without symptoms} it is frequently infected. I can still smell the odorous pus, remember the words used to describe me because of the smell, the shape, size and colour of my ears. I’m sure I could dig out photos and scare you all and make you vomit but I won’t. The point is for years as a child it was undiagnosed and even if it had been it would not have changed other peoples opinion of me, the smell from my ears, the shape, size and deformation of my ears or the fact I couldn’t always hear and understand what they said let alone why they said it. The appearance and smell meant that children and adults alike don’t get to know “me” they just note the smell and appearance of my ears and judge the kind of person {Weird, strange, unnatural, strange, stupid, freak are all words I have heard in fact some of the nicer words I’ve heard} I am from that.

Little is known about prearricular sinus, but I have noted mine are exacerbated and more prone to infections if I consume potatoes. I can have sweet potato or potato in moderation but not often. I have to fight for treatment of infections because most ear infections or even throat infections clear without the need for treatment, mine don’t. Not every GP has heard of my condition and will not re-knew long term medications because they are strong and expensive and if you are unaware of the condition you are unable to see the benefits of even an extra day or two between infections. Even thinking of the pain of infections makes me actually cry, the smell I’m am accustomed too and rarely notice but the pain is strong. I have asthma and cannot take Ibeuprofen and prefer not to take paracetamol or other analgesic drugs unless I have no alternative. This means I am often in pain and trying to ignore it. This condition really does make life difficult but not in a manner that is explainable because it’s something that most people have not heard of and therefore it appears as though I am making this up just to be difficult {yes I have actually been told that in the past} and for attention. It is also how life will always be...always making sure I am not trying to make what this means for me to be worse than something is for anyone else because there is no way it can be, a struggle, a battle, what others endure will always be worse, it can never be compared to something as trivial as this, always trying not to let emotion or other peoples judgement on me get the better of me. I need to balance that tough courageous I don't care animal attitude with trying to trust people, to let them in and not spend the entire time waiting for them to judge me because of this condition. Trusting and not fearing the reaction is the hardest thing of all which is why i have chosen to put this out there via my blog with a limited audience so that it can help me garner the courage to tell others maybe even in person one day.

Finally, before the laptop goes bang from my tears, I want to say a huge THANK YOU to Ike, not just for the stunning images she designs but also for setting the challenges that not only inspire me but allow me to create from heart and soul regardless of where that make take my craft and for without even realising it supporting me through the use of her images on a painful yet essential and fulfilling journey.