MY YOUNGER YEARS
When my mother sadly passed away in mid-July 2015 I had to clear her house.
During this emotionally draining process I discovered an old school report card from 1970…….. when I was 5 years old.
Even back then my PE Teacher commented on my lack of ‘physical prowess’ and a “…. distinct lack of coordination during all types of sports…” and further remarked that “…… Mark is better suited to more academic pursuits…… “.
I can’t remember this report card at all.
However, I don’t recall anything of further import until my mid to late teens…… other than a reputation for possessing an overt clumsiness. There were many incidences (I remember) of stumbles etc.
MY TEENAGE YEARS
In my teens I began doing a lot of hill-walking with my best friend. I can clearly recall hating narrow, rocky paths, or uneven ground. If I had to walk uphill, on a good path, it was never a problem, but as soon as the ground was uneven I was less than useless. I also did a lot cycling and mountain biking. I recognised (even 30 years ago) that my legs got stiff and tired. So lots of stretching was great…. little did I know that the very act of doing this benefitted an as yet unknown/undiagnosed condition.
During walking, following a heavy fall of snow, I distinctly recall my best friend (who was a fit as the proverbial ‘butcher’s dog’) always taking the lead and creating a track of foot-steps in any fresh snow that I could more easily walk in. A great theory. However I was totally unable to direct my feet to hit the holes made by his boots.
Then in my late teens, me and a few mates were jumping off a waterfall in the Brecon Beacons. During one series of ‘jumps’ I ‘slipped’ and just dropped vertically, smashing my lower back on rocks in the process, requiring a 6 week hospital stay until a fractured pelvic girdle healed. However what I once described as a slip, I now recall (with hindsight) as ‘placing my foot in the wrong f**king place’ and causing my plummet.
I also did a fair bit of hill-running….. but my route of choice was not based on distance or steepness, but avoided totally rough or uneven terrain. It was always assumed this type of route was selected for reasons of ‘yellowness’, but it was a simple reality for me.
One significant symptom of my condition (I now know to be Ataxia) is a lack of muscle coordination. Placing my feet where I wanted them was a total pot-luck exercise. So when I began using clip-in pedal/shoes cycling became a doddle. Having my feet ‘clamped’ in a fixed, and known position removed all uncertainty from my mobility with a total, and complete reliance on my leg strength. Deep joy.
Quite a few times I fell over on my bike in the most stupid ways. However looking back now I realise EVERY time I was static and with my feet out of the pedals (of course I had some epic ‘offs’ but they were just normal ‘skill limitation’ events).
Sadly, I got shot of my bike. I assumed (wrongly) that I had some sort of balance issue. My bike was custom built and very prized.
LATER LIFE
During my 30s and 40s (and in the midst of my career) my mobility got steadily worse until in 2009 I had to give my career up entirely, coincidentally aligning with the death of my father, and then my mother subsequently falling victim to the ravages of Alzheimer’s…… requiring me to become a full-time carer. I was travelling constantly, living abroad, and always carting luggage about. Simple steps/uneven paths became a huge mental effort, not to mention a massive physical risk. I kept it as hidden as possible, for as long as possible. But there was a point where it just wasn’t feasible to hide it any longer.
GRUMPINESS
I’ve always been grumpy. I’m sure a lot of this is to do with just who I am.
However, years of coping with a weird, and challenging mobility issue made me grumpier than normal. Fatigue and anxiety created feelings of anger and frustration that have morphed into who I am as a 54 year old man.
This is, in no way, meant as some sort of excuse, but it is simply a statement of fact.
RECENT YEARS
Since my mother passed away in 2015 I moved to Cardiff from Bristol.
I inherited some money from her. I used a goodly sum from this to see a private doctor in London. This doctor thought I had Multiple Sclerosis. However, rather than a formal private diagnosis he recommended trying to obtain a diagnosis through the NHS to avoid possible problems obtaining expensive meds.
My mobility continued to deteriorate and the mental effort required to simply maintain some sense of normalcy in my everyday life was a challenge to say the least.
I was trying to start a photography business but making the most simple strategic decisions became virtually impossible. I was falling over several times a month and after a few A&E visits I was referred to a neurologist once again in November 2017.
Having seen a neurologist already numerous times (with no diagnosis, or even basic observations) I had no preconceptions that anything would come of it.
There was a big difference now however. Now I had a photographic business and had had to procure ‘professional indemnity insurance’ in case I dropped some equipment on someone, or they fell over my paraphernalia.
This premium was £500pa. Not a problem for a going concern. However, I disclosed my mobility issues and the fact that an MRI was scheduled to take place. Suddenly my premium rose to £5000pa! (or in other words, ‘we don’t want to insure you’).
Clearly this was not a option.
To cut a long story short running a business was not possible. I lost my home with the possibility I had MS.
In December 2018 I saw my GP and expressed a desire to ‘end my life’. Absolutely nothing was done! In early January 2019 I wrote to the Samaritans expressing the same desire.
The very next morning I was found on the floor of a B&B bedroom with no memory of my fall, why I was there, or indeed why I was in Cardiff.
The previous four years were a blank.
I was taken by ambulance to University Hospital Wales. After 14 days of very basic tests, I was unceremoniously discharged and taken by taxi to a homeless shelter, with no money, possessions, friends or diagnosis.
After 6 months of sofa-surfing and sleeping rough on the street, the Salvation Army took me in, referred me to a kindly doctor and fed me.
After several weeks in an SA hostel, they found me a nice flat in a nice area of the city. Not only that the new Doctor referred me to the Institute of Genetics in Cardiff.
At this time my speech had become slurry to the point of being unintelligible.
At the Genetics Institute I met a great lady doctor. After a 2 hour consultation she ran a test that would take 4-5 months to process. Well after 54 years, I was prepared to wait a few months.
Eventually the test results came through. I had HSP…… Hereditary Spastic Paraplegia. A condition I’d had all my life and is the result of the unfortunate luck of inheriting a mutated gene from my Dad AND my Mum.
Well now I knew. It explained so much in earlier years.
Whilst it is progressive and incurable, like MS, it doesn’t have a significant cognitive impairment issue, unlike MS.
Its key symptoms are walking problems/coordination, bad balance, speech degradation, muscle/tendon stiffness and extreme fatigue.
Future potential issues are bladder issues and sight/hearing loss and heart function issues. I say potential as the condition is so rare that the prognosis and progression between sufferers is unknown generally.
There are reports of cognitive decline, but right now I actually feel more mentally sharp than in the last 20 years. And no bladder/sight/hearing issues are apparent….yet…. thankfully. Fingers crossed!
CURRENT SITUATION
One of the key medications for HSP is Baclofen. This is a muscle relaxant used to ease stiffness in the lower limbs. However it’s not a targeted drug….. it affects ALL muscles equally.
So I preferred not to have it and concentrate on yoga/physio to maintain my limb function. Like most drugs, the side/unwanted effects seem worse than the symptom they’re trying to treat.
I’ve realised just today (after apparently suffering from a massive fluctuation in symptoms) that the fluctuation of symptoms is an illusion. The fluctuation is energy levels/fatigue. This means somedays I can mobilise quite well, then other days (sometimes hours) I can hardly move or stand.
Time to sit down and watch a movie.
*AWARENESS
I am just beginning to realise how rare HSP is. Even if you tell people you have MS you’re often met with a blank ‘I have no idea what that is’ type look.
The physical symptoms are almost identical to Cerebral Palsy, but without the negative mental attributes.
Much as there is a large enthusiasm to promote ‘mental health awareness’ (and rightly so!) there is a need to make it more generally known of ‘movement disorders’/’speech disorders’.
A speech disorder is impossible to disguise. Having suffered with clinical depression/anxiety I know you can hide this from family/friends (a blessing AND a curse), ‘talking strangely’ is always apparent….. as is the usual ‘he’s pissed’ or he has some ‘mental problem’ reaction.
Speaking and Street Portraits
Speaking normally, and being understood easily is, all too often, taken for granted. I was guilty of this too.
However, since a sudden collapse early in 2019 my speech clarity has been problematic, and is now seemingly deteriorating almost weekly. I never realised how much until I discovered an old recording of a radio conversation I had on BBC Radio 5 Live with Vanessa Feltz, back in 2009, where I spoke with total clarity.
Mentally I seem more lucid and cognitively competent than ever. However, I come over (at least on initial contact) as having some sort of learning difficulty, or being intoxicated. This is really frustrating and annoying.
This is generally annoying in everyday life for sure: shopping, social interaction, visiting coffee shop etc., but becomes a real problem when practicing street photography.
When I say street photography, I actually mean more specifically taking ‘street portraits’.
Magnum photographer Robert Capa famously said something to the effect of ‘nothing improves a photo more, than by getting closer to your subject. This has always been taken to mean ‘physically closer’ (which is, purely by coincidence, a truism) and is oft quoted to students of photography. However, by ‘close’, he really meant closer emotionally/mentally.
While it is true to say that my unsteady gait and slurred speech prevent me, in theory and in practice, from approaching potential street-portrait subjects freely (and not scaring most people away, or provoking a ‘get away from me’ reaction) it has one, unforeseen, benefit.
Very occasionally, you encounter people who are really non-judgemental and fully engage in a normal conversation. It only takes a few moments to realise that I’m fully in possession of my mental faculties and I am not, in fact, drunk or high!
(caveat: this sort of suspicious reaction is almost exclusively a British thing. On international rugby days here in Cardiff, I can happily approach Italian and French nationals without any fear of an adverse reaction)
This engagement, whilst rare, ends up resulting in better portraits as the interaction creates a ‘closer’ bond between the subject and the photographer…… which is a pretty fundamental part of portrait photography anyway.
In addition, beyond my annoyance and frustration at any instant assumption I have some sort of cognitive impairment, my frustration is multiplied massively in longer conversations where I absolutely can not translate my thoughts into to clear/coherent speech for the purpose of normal social contact.
It is a frustration, more than that, an infuriating annoyance, when people actually know of the speech impediment but continue to try and hold a regular conversation and it won’t happen. When my mother had early Alzheimer’s she used to get angry when people either ignored her (due to a lack of understanding) or continued the conversation when clearly they had not understood her last comment. This happens to me. People either totally ignore you, or continue with some sort of discussion based on what they think you said. I am unsure whether this is embarrassment, rudeness or some sort of misguided sense of politeness. If you don’t understand something, then please ask. Don’t witter on like a buffoon.
Another annoyance is when people have not got the patience to let you get your words out and either show that lack of patience physically, or talk over you (this makes me incensed!) as I’m sure stammerers/stutterers know all too well.
This happens regularly with street photography
victsubjects, but more annoyingly in general conversation.Once again, this seems (sadly) to be a trait solely among the British. Generally if I get a negative response the subject is almost always a brit.