My Story Part 4 – My Legs are Full of Holes

Legs 1
How my legs look today
Legs 3
So many scars! No wonder changing the dressings took so long
Legs 2
The big one that needed surgery

After coming round, I became only gradually aware that something was going on with my legs. My primary view was of the ceiling, and when I was sat up, I was covered in sheets and blankets.

When a nurse wanted ‘to take a look at’ my legs, I didn’t understand. When I realised there were bandages on my legs, I still didn’t understand. There was so much that was strange and unfamiliar about being in hospital; this was just one more thing.

After the bed bath phase was thankfully past and I was wheeled to the shower, there was no escaping the wounds that needed to be painstakingly cleaned, but I refused to acknowledge them or even look at my legs. When Sister Maree, the tall and terrifying chief wounds nurse, instructed me to bathe in Lux flakes to soften the tissue, and I was hoisted into a bathtub in a special chairlift (I remember being scared I would fall off), I still refused to look at them. I got so distraught the nurse covered the mirror with a sheet.

(I suppose that means that bathing in Lux flakes is a thrifty hack for beautifully soft skin – but I doubt I could ever bring myself to do it again!)

What had happened to my legs?

The meningitis rash, with which most of us are familiar, had spread all over my body, and resembled nothing so much as a port wine birthmark splashed onto me from head to toe. My face and tummy had little chicken pox-type marks; splotches of various shapes and sizes were everywhere else. For some reason, they were biggest on my arms and legs.

The burgundy-coloured spatter marked the spots where blood cells had died. The rash darkened, became ulcer-like and the splotches were treated as third degree burns. Each “burn” was a cavity wound.

Every day, each individual wound had to be cleaned and the necrotic (i.e. dead) tissue picked out with forceps. Each wound then had to be re-packed with a special seaweed-based dressing, sluiced with iodine and wrapped in bandages.

I had many of these wounds, so this process took up the most of every morning.

I don’t know why I refused to accept this reality, but I think it has something to do with the fact that I knew I’d been ill, not injured. I’d had flu-like symptoms, so why would I need treatment for arm and leg wounds? It didn’t make any sense to me.

At the same time, I had no faculty whatsoever for overcoming my sense of revulsion towards anything ‘gross’. I am not normally particularly squeamish, or someone who faints at the sight of blood, but I just had no stomach for anything. I simply couldn’t steel myself to look at the bloody, fibrous clots of dressing and blackened lumps of skin being eased out, or the raw tissue underneath. The whole notion of it was a horror to me.

(I would toughen up in time, which is how I do know what it looked like.)

I had one very large wound, several inches square, on my right leg. The dead tissue went too deep to be removed in the daily forceps routine, and had to be surgically cut out under local anaesthetic. It was initially proposed I should have a skin graft on it, which gave me more anxiety about possible future pain, but after much debate the medical staff decided I had been through enough. Skin grafts for women are generally taken from the buttocks (it’s the thighs for men – I don’t know why), and it so happened this was the one part of my body that was untainted by the rash. Sister Maree agreed it would be unfair to take this away from me.

As my strength increased, I overcame my revulsion and was eventually able to assist in scrubbing and cleaning the wounds.

“I don’t feel very lucky”

At the same time however, the enormity of the change to my outward appearance was also sinking in.

Of course, the only acceptable reaction to learning you will be scarred for life in this context is simple gratitude that you’re alive to be bothered about it. That you even HAVE arms and legs. From what I can tell, it is almost unheard of for a victim of meningococcal septicaemia to be as seriously ill as I was, and not have to undergo any amputations. I was told this repeatedly by everyone around me. ‘You’re a very lucky little girl’, older adults had a habit of saying to me sternly. ‘I don’t feel very lucky,’ I would grumble back. And I’m not a little girl!

(Being seriously ill is the one time you can be a grumpy git and no-one can say anything.)

I knew, rationally, that I was very lucky to have got away with only scars. But I thought sadly of the dreams I’d had of arriving at university a bronzed goddess. Was it only a few weeks ago that I was planning my suntan strategy?

Obviously, no-one would ever fancy me again. Even the softest of nurses drew the line at suggesting the wounds would heal without trace. I may have won the lottery in the immune system stakes, but I just happen to have the kind of skin that heals slowly and scars badly. I felt ugly and damaged, and that I had been taken out of the running for experiences like love and romance.

Towards the end of my stay in hospital, the worst of the dead tissue was gone and we were just waiting for the wounds to ‘granulate out’. ‘Wounds heal from the bottom up and outside in. That’s the principle of wound healing,’ a nurse informed me rather primly. I move on from the seaweed packing to special ointments.

Before I leave hospital, the nurses trained my mum and I in how to do the dressings and wrap the bandages (‘Figures of eight, otherwise it’ll fall down!’). I was supplied with a special dressing that can be left on for 48 hours, for the flight home (it was sticky, a nightmare to remove). Once I was discharged, the lengthy morning routine of wound cleaning and dressing continued.

Where were you during the solar eclipse?

Back home in Hounslow, I couldn’t yet stand up in the shower so the bathing in Lux flakes continued. The media was going frantic over a solar eclipse: when it happened, I was visiting the consultant dermatologist at West Middlesex Hospital. I got more types of dressing, including a new type of gel to counteract a couple of wounds that are becoming hypertrophic or keloid. This is where the healing cells get over-excited, and ‘over-granulate’, resulting in the scar being raised. The gels only do so much: I am left with a noticeable keloid scar on my elbow, like a little red cushion, and raised scars on my foot.

You know that funny pins and needle-y feeling you get if you bash your ‘funny bone’ by accident? That’s how my elbow used to feel all the time, for years after it had healed over.

Both sets of scars flattened out after a few years, although the elbow scar still looks messy. A scar on my ankle used to feel very pins and needle-y, and to this day does not quite feel normal.

Over the weeks, dressing the wounds became easier, until the end of September when they had healed over completely. Just in time for university!

Starting university

But I was still miserable. The freshly healed scars were a livid crimson-y maroon, not a million shades away from the original port wine rash, and showed up even more angrily against my pale skin. I still felt ugly, and my legs were ‘ruined’.

Again, I appreciate I should have been simply grateful to have been able to start university on time, which had certainly been hanging in the balance. And if I feel anything now, it is that. But at the time, I felt diminished.

I’m not saying I was right to feel this way, or denying that a large part of my distress was probably due to personal vanity. But I was 19, and just starting university, and my appearance mattered to me. You can wring your hands about what this says about our society, or my upbringing, or me, but I’m just telling you honestly how I felt.

In common with many, maybe even most, people my age, I hadn’t had a great deal of confidence in my looks. My high-achieving girls’ school had more than its quota of girls who modelled professionally in their spare time; Jasmine Hemsley was in my year.

But I had been told many, many times that I had nice legs. Whether or not that had been objectively true, I had believed it. I felt somehow that that had been my one advantage, and now I didn’t have that any more, and there was therefore nothing left that was attractive about me.

It was all very well knowing that I was lucky compared to other survivors that had lost limbs or digits, or their lives. But I wasn’t living in a cohort of meningitis survivors, I was living in a cohort of averagely healthy students. It was them I compared myself to, and felt like an anomaly. I mean, they could hardly be expected to have a frame of reference for the fatality or amputation rate of meningitis sufferers.

For about a year, I wore only trousers or black opaque tights. I felt this most keenly at evening events – the formal halls, club dinners and balls – where my tights added a dowdy touch. I enjoyed dressing stylishly (or trying to), and this brought me down even further.

Then one summer evening I made a bold move. Okay, so my legs would never be what they were. But did they need to be covered up the entire time? Would people really be horrible to me about them?

I attended the Cruise Club Cocktails (a friend was a member) in the Selwyn Diamond wearing a skirt but no tights (as well as a top, for the avoidance of doubt). Despite my friends’ reassurances, I was anxious, convinced everyone would be staring at my legs thinking, ‘Ugh’.

But no-one did. There was one oh-so-hilarious young man who asked me what the hell had happened to my legs, had I been playing football or something? No, I had meningococcal septicaemia. Oh no, I’m not going to catch it off you, am I?

It hurt, but he was so clearly a moron that it didn’t hurt too badly.

I realised that the scars would only bother other people if they bothered me, and they haven’t bothered me since.

Moving on

I can only think of two or three occasions since that night when I’ve even been asked about them. I never mind, because I’m a nosey parker too and would totally ask someone else! Certainly no-one has been unkind to my face. The bigger risk is that I embarrass myself by boring someone to tears giving a blow-by-blow account of the illness!

Since then, I can honestly say I have rarely given my scars much thought. Occasionally I have wondered whether they prolonged my emotional recovery. I was probably in my mid-twenties before I stopped feeling defined by the whole experience, before I stopped calling it ‘my illness’ and instead referred to ‘when I was ill’, and maybe if I hadn’t been left with a visual reminder this would have happened faster. Who knows.

Today, the scars have faded to a pale grey-violet, and since I live in Britain and hardly ever go bare-legged, they are barely noticeable even under skin-coloured tights. In retrospect, I think I just needed time to adjust to such a major change to my physical appearance. I don’t judge my younger self for minding. I think most people would have felt the same way. I’ve known women to get het up if they so much as graze their knee.

When I did my 21 mile training run the other day that went so badly, and when I cried and cried afterwards and felt like dropping out, the only thing that calmed me down was remembering how lucky I am to be able to complain about how hard running is. So many of my fellow TeamMRF marathon runners are running in memory of a loved one they have lost to meningitis. I bet they would give anything to have that person back, complaining they can’t wear the latest fashions because their scars will show. A large part of the work Meningitis Research Foundation does is supporting those who have become permanently disabled through the illness.

Meningitis takes away so much from so many people. Whatever happens on Sunday, however hard it gets, however rubbish my time is, participating is a gift. I may not have been grateful when I was 19, but by god I am grateful now.

Thank you for reading! Please give generously at http://www.virginmoneygiving.com/catrunslondon

PS: People did fancy me again.

 

 

 

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