10. Midnight At The Lost & Found

I have been exceedingly quiet of late. Various challenges have been mounting and a recent spate of job application disappointments (possibly another topic for another day) were the proverbial final straws which broke this particular camel’s back. But a number of very kind people have been enquiring as to my wellbeing, and I really wanted to write something, so here we are.

Unfortunately, we are in the position I really didn’t want to be in; that this blog isn’t focussing on many interesting and fascinating hobbies, but instead is just a litany of medical-related negatives. Nobody likes a victim, least of all me. Nobody enjoys an regular roll-call of unsavoury developments. And what would be the purpose? It is what it is. There are more enjoyable things to read on t’interweb.

So, I’m torn between my desire to write something, anything, as I like writing. Against a serious desire to avoid self-pity. I want to reassure those of you have shown concern. I don’t want to subject you to some sort of purgatorial dirge which will have you reaching for the sideboard spirits or Samaritans number. But the reality is that, right now, this is my life. I am documenting what is happening.

On some level at least, this is my scream into the void. I need this off my chest. I’m happy for you to skip the negative bits below entirely, and to be honest I’m kind of hoping you will, as its not nice reading and it doesn’t present me in the best light. I just want it published in this little blogging backwater so one day I can come back and say, at least I didn’t imagine it. I made a note. It did happen. Look at what you came through.

Don’t read on if you are the sort of person who is going to hold it against me or think I’m just a whiney git. Let me have my whinge in peace. So I can return to a more customary sunshine and daisy Tom later and we can pretend we didn’t do this.

Rest assured I’m trying to keep it punchy and buoyant and I apologise in advance if I have failed in this spirit. I’m giving myself a headstart by structuring this post with bad things first, followed by a list of lovely positives to try to recover on an optimistic note. Feel free to skip the next few paragraphs. Deep breath, now.

I have always had problematic and painful feet but, for the most part, tottered around quite merrily as a regular biped. About 7 years ago, I needed to start using a walking stick to help with pain. Then a crutch. Then 2 crutches. Around 2 years ago I started using a wheelchair for long/extended walking/standing. And 18 months ago, I collapsed gratefully into a wheelchair for 95% of my daily life. Rampant fusion, warping and crumbling of the bones in my feet, and the pain this brings, meant walking was just too much hassle for what it was worth. I am furious about losing walking. But it is what it is. At least I’m not in agony all day every day, just with moving about. With the crumbling feet now presenting a growing functional and infection risk, amputation plans are making their interminable progress through the NHS surgery process. (see previous blogs)

I have had moderate hearing loss in both ears since my tweenage years. Around 4 years ago there was a sharp decline in my remaining hearing, and then 3 years ago it dropped off a cliff. It has continued to deteriorate over the last year, to the point of profound loss and actual deafness across an increasing number of frequencies. This is not ideal for a music lover and a freelancer who has nobody else to rely on for speaking to clients for his livelihood. I’m already a misanthrope and a very happy introverted social recluse and almost complete hearing loss has not been great for social connection, either.

Ligament and tendon contractures throughout my body have become a mounting issue, such that tightening of the muscles in my right palm have caused the tendons on my knuckles to slip off. After a year of deterioration the resultant reductions in range and strength have meant this hand is often basically useless. This year is my 25th anniversary of playing classical guitar and it is marked by the loss of being able to do it. Guitar was my first love, before cycling hit, and I was a competent and almost daily player right through until last year. I also collect fountain pens and love writing by hand, which seems especially unfair. There is an operation they can do to see if we can get some movement back in my hand, which I have been forced to push back. Twice. Because I can’t risk it not healing or healing slowly so that I can’t use crutches/wheelchair and then there’s no chance of them amputating my legs. Legs are the priority. So, somewhat cruelly, the longer the delay in amputation, the more I am further disabled by hand function losses.

I won the genetic lottery a second time with kerataconus. The surgical intervention for this eye condition necessitates fusing your corneas to limit further deterioration. Once fused, though, your eyes have no/limited ability to adjust to different light conditions. Which is why I am often squinting in photos, and almost always wearing a hat or sunglasses, or both. It also means, though, that reading actual books (another major hobby) is a lot harder than it used to be, even with glasses and acceptable light. It also means that I need to wear my contact lenses for cycling, so I can wear my Oakley sunglasses (prescription sunglasses, even Oakley ones, aren’t strong enough). Of course the skin of my eyelids is very tight and very thin due to having no subcutaneous body fat, and I also have very attractive long eyelashes- conditions not ideal for the chunky rigid contact lenses necessary for this eye condition. Basically… it takes 10-30mins of quite painful dicking about (with my limited hand function, too) to get my contact lenses in, and if I can’t do it (it happens some days), I don’t ride.

Finally, in the list of medical issues which I am mentioning (amazingly, there are other minor ones I have chosen not to) the recurring venous ulcer on my ankle has deteriorated again, so I’m back in compression bandaging and enjoying all the colossal disruption that brings to my socks, shoes, cycling clothing, and sleep comfort. This ulcer will never heal. The NHS did such a good job mismanaging that wound for over a decade that there is only bone, skin and scar tissue there now. There’s no healthy flesh for recovering flesh to connect to. One great additional reason for them to hurry up and amputate so I don’t spend any more time than the 14 years I have done so far on keeping it dry, safe, and changing dressings every other day alongside weekly appointments with the tissue viability nurses.

So, that’s where we are. In the last 7 years or so I have lost the ability to walk, my hearing, much of my right hand function and guitar playing, much of my eyesight and reading/handwriting ability, and any hope of walking again with my own legs.

*Now for the optimistic stuff*

I’ve been a big fan of coffee for the last 15 years or so. The archetypal hipster nerd. I really like the process, but I also really like the sensory perception elements. I added whisky appreciation as a hobby a decade ago for much the same reasons. And then 5 years ago, seduced by my friend Phil, I also added red wine appreciation. I have noted that as my hearing and sight and touch have declined, I’ve found a greater appreciation for taste and smell. Contrary to popular myth, I don’t believe these senses have ‘improved’ as a result. I’ve just focussed on them more, and therefore practiced, and therefore gained skill there. I’ve always really enjoyed food and drink, and this has been a great opportunity to build on that (and pick up some new qualifications in the process).

I love books. I love reading. I’m an adult now, so I do have other obligations, but for much of my teens I read books with the same quiet constancy as breathing. My recent issues with focus and changing light conditions made this beloved hobby a greater and greater cognitive drain, to the point that the stresses outweighed the enjoyment. And then I got a Kindle. And I can adjust light, font, spacing, everything - some of it automatically. And can carry my customary 3 books on the go at the same time in one sleek lightweight and long-lasting powered device. I still much prefer the look, feel, and smell of a ‘proper’ book, but these are infinitesimal quibbles inferior to the sublime enrichment of just reading.

Once your hearing loss has reached a certain profound level, there’s little that even a Super Power hearing aid can do for you. And when you no longer hear certain frequencies, the tiny hairs and nerves in the inner ear which pick those specific frequencies up start to die. Use it or lose it. Then no amount of amplified sound can be perceived by those nerves. So we bypass them entirely, by jacking right into the auditory nerve with a Cochlear Implant. I have one now. One surgery and a few months of rigorous speech/sound practice and adaptation later, my hearing is much improved. It’s a long way from what it was 10 years ago, but it’s a significant, encouraging and reassuring jump up from what it was last year. There are many sounds I still need to work at understanding, as they’re just confusing, but there are also some wonderful new ones I haven’t heard in a very long time, or perhaps ever. I can pick out different ways a drummer is hitting a snare drum, for example. But I can’t tell the difference between the G string and the B string on my guitar, currently. You win some, you lose some.

Having a wheelchair has made my daily life a lot more comfortable, even if it does require a lot more planning for any outside excursions, travel, work, accommodation, etc. It’s a weird thing, not being in discomfort. Previously, I would always walk fast and not really appreciate or enjoy my surroundings because I was focussing so hard on managing my foot pain and walking technique to minimise it. Now, when I move around, I have cognitive space to actually perceive sights, sounds, smells. I've also started browsing. Like, in shops. I never used to. Previously I would know what I wanted, and get it with a minimum of deviation, in order not to prolong the standing/walking. Now, I browse with no intention at all of buying anything. Just rolling about, exploring. It’s so simple and commonplace and yet feels so alien and strange to me.

A desire to improve my upper body strength and endurance for wheelchairing and crutching has also led me to do lift more weights. During my ‘serious’ cycling years I was a big fan of Strength & Conditioning work, and benefitted from it hugely, and it’s been nice to extend that a little. I have improved my flexibility and strength in a few key areas and my general health is also much improved. A new hobby I probably wouldn’t have tackled without the demands of comfortable wheelchair use encouraging it.

And on a related note, I don’t cycle as much as I used to, or with as much comfort as I used to (shoes, feet, hand, contact lenses, reduced fitness, etc etc) but these issues have contrived to make me appreciate the miles that I do cover a lot more. I’ve always been tremendously grateful for my cycling and what it gives me, and recent years have only reinforced this relationship. Frequent absence making the heart grow fonder, perhaps.

So, there we are. The lost and found. The earlier paragraphs of this blog took me 3 weeks of intense internal debate whether to publish. I’m still not convinced it was wise to do so, or that the tone reflects well on me, or that such miserable self-pity should ever be read by anyone. I’m sorry. But I did give fair warning and, in the absence of any actual therapy, I have found writing to be useful. I wanted a record, somewhere. It’s a difficult thing to explain. I hope the paragraphs which came later provide some restitutionary perspective.

I will end this difficult post by saying I am grateful for such perspective. Yeah, I’m having a bit of a shit deal at the minute and probably will do for the foreseeable. I’ve got a lot of work/social stuff I need to work through too. But I’m also privileged beyond the wildest dreams of many. I have a roof, food, safety, family, friends, healthcare, and, and, and, and… There are so many people in a worse position than I am physically, mentally, financially, and in many other ways. Some don’t even have terriers. So while at times I find my life desperately hard, I strive always to return to recognizing how lucky I am.