I am going to share with you one of my personal horror
stories... but not with the aim of singing Oh-Woe-Is-Me, nor garnering pity or
sympathy and trying to make myself out as some kind of a Shero. I know that
there’s always someone far worse off than I am, a story more horrible… but, for
me, writing is cathartic. It helps me process what has happened to me, and that
helps me pack it away as history and continue looking forward with renewed and
positive fervor, ever grateful for the silver linings. By the same token, it
may very well be that someone finds resonance in my story, and if I catch them
early enough in their mirrored tale, I may just spare them the same fate and
soften their landing on that ‘normal’ ground we take so for granted. There is
always something to be learnt.
Prequel:
Apart from my whole 43 years of life and what’s gone down so
far counting towards understanding the bigger picture, I am not about to write
a tome (or two)… but a little relevant background is needed to add context and
allow what I experienced to be wholly palpable. About 15 or so years ago I had
pterygiums removed from both my eyes by an old Opthalmologist, who retired
shortly after I believe. A pterygium is a pinkish, triangular tissue
growth on the cornea of the eye. It typically starts on the cornea near the
nose, but mine was unusually on the other side (I seem to be famous for
‘atypical’, but that’s another story!). It may grow slowly but rarely grows so
large that the pupil is covered. Over the years, what looked like a little hole
had developed in my right eye. I went to have it seen to, first in South Africa
in 2013, fearful that it would make my melanin-poor blue eyes more susceptible
to UV irradiation (and I had lost a friend to Melanoma Cancer not that long
before, with them having found the primary tumour in his eye!). They said at
that time that it shouldn’t be an issue as it was merely a thinning of the
sclera because they had cauterized the blood vessels in that area, and that if
the appearance of it bothered me I could have a patch sewn over it, but that
the medical aid would not cover it because it was cosmetic surgery more than
anything else. So I left it.
However… around 2015, that eye started bothering me. It was
always dry and often irritated, as if something was in it. I used moisture
drops extensively for relief. Fast forward to 2017/2018: I am currently in
Germany and after running it by a GP, and then an Opthalmologist, I was later
referred to an Eye Clinic where they took a photo and also told me all should
be well and that they will check it again in a year, sending me off with better
quality moisture eye drops.
October 2018
And then around a month later… a boring, stabbing pain began
in my eye and it got very red. Three days later, after dropping my son off at
Kita, I went to the Opthalmologist again with my 1 year old and waited for
hours to be squeezed in for an emergency consult without an appointment. She
said it looked bad and prescribed me some cortisone drops, promising that it
should subside in 2-3 days. However, things just got worse. The pain moved
towards excruciating (and I have endured my fair share of pain!), and despite
painkillers, I just could not sleep. It was as though a hot, pulsing coal was
nestled in my face. Getting up at 6am with two little energetic kids was quite
a feat… but I simply had to carry on. Three days later I went back to the
Opthalmologist, DESPERATE. I had to wait hours again for a squeeze-in and once
she had examined my eye, she said that it had not gotten better and that this
was now out of her scope of service. She recommended I present myself to the
emergency unit at the local hospital as soon as I could. And so, on the Friday, after the day’s to-dos
were done, and the kids were in bed and the husband home from work, I took a
bus to the local hospital to see if they could help me.
Little did I know that they would end up keeping me there
for 12 days! The diagnosis was necrotizing scleritis, and they were afraid that
I had an autoimmune disease because they could not explain the powerful inflammatory
response my body was having. In fear of
losing my eye, they put me on cortisone infusions, driving it up to 1000mg a
day in a desperate attempt to save the eye, which was practically melting! In
the meantime, I was examined from head to toe, inside out, and had to speak
with a Rheumatologist who didn’t rush to see me, I might add. Microbiological
assessments were negative – it was not an infection. Blood work unremarkable,
no overt sign of an underlying autoimmune condition as expected. The
Rheumatologist had asked me to record a detailed timeline of my medical history
so they could build the puzzle, and so I spent a couple of hours compiling this
for him, as difficult as it was. Annoyingly, I never saw him again, and he
never asked for the information I had painstakingly summarized on his behalf!
At a loss, the Eye Doctors then started asking for details of my pterygium
removal, so I was communicating with friends and family in South Africa asking
them to try and get hold of the practice, and the information... but, as
expected, details of the procedure had since been destroyed. Apparently, all
patient data older than 15 years is scrapped.
They conducted an MRI of my head to assess the eye, and
incidentally found a 2cm brain tumour (a meniongioma) behind the right eye in
line with the ear, but apparently entirely unrelated to my eye pathology, so
that finding was put aside for another time!
And, torso ultrasound confirmed recently discovered thyroid nodules
(with a giant mass on my left side), which was also deemed unrelated to my eye
and left for future follow-up.
I did not sleep at all during these 12 days... and this was
the first time I really could have! I had somehow envisioned the luxury of
kid-free time differently! First I could
not sleep because of the unbearable eye pain, and then I could not sleep
because of the cortisone... all exacerbated by lying in a room in a loud ward
(eye pathology shared with neurology) where no window could be opened. I went
outside numerous times, just to breathe! The nights were HELL. I lay there in
this stuffy, choking room, feeling my heart wanting to jump out of my chest...
no sleeping tablets helped, nor my drops of pure essential lavender. I listened
to all the sounds, and counted the ticks and tocks till breakfast. My bed was
also so uncomfortable that it got to a point where I couldn’t tell which hurt
more, my eye or my back and shoulder muscle tension. I suffered endless spasms
and couldn’t find a position of comfort. Physiotherapy got approved, but all
they did was put hot towels over my muscles for a few minutes! It was only
comfortable to walk, and walk I did... no, more like pace. I was pacing,
waiting, pacing, and waiting. I would then have to wait until I was summonsed
down to the eye clinic for my daily visitation, and then sit there and wait
hours to be called in, everything moving at a snail’s pace.
Finally, the jovial, young Chinese Eye Surgeon, who was
overseeing my case but was wanted in a thousand different places all the time,
considered sewing a patch onto my necrotizing pterygium scar, and I told him
‘Do it! Now, please! I cannot continue like this!’ Because, you see, I could
not go on like this, and they could not keep me on such high doses of cortisone
much longer anyway. I needed something to happen. I needed to feel like we were
finally moving forward. I wanted to get back to my kiddies, my life, and my bed
by an open window...
So, like a dog with a bone, I fought for my op. He told me
not to eat the next day because he would try to squeeze me in between scheduled
surgeries. The next morning, they brought me breakfast, and I declined saying,
‘ No, I won’t be eating this morning. I am getting operated on!’ The nurse went
to check and came back to tell me that I am not on the list for surgery, and I
said, ‘Well, that better change quickly because I am getting operated on today,
come rain or shine! The doctor said so, so best you let them know that my
surgery gets scheduled!’ And, yes...
well, they didn’t like me because I turned into somewhat of a lioness. Anybody
with a shred of empathy would have understood though... I had been cooped up in
this unventilated limbo for long enough! Three roommates later, 12 days of
concentrated sleep deprivation... I am a mother for God’s sake! Yes, I saw my
kiddies daily in the playground near the hospital (which was also fortunately
near our home, and my husband was able to take family sick leave). I didn’t
dare bring my children into the hospital. Yes, I got permission to go home for
a few hours the second weekend I was there because ZILCH happens on the
weekends. Yes, I did get to sneak out and do big shopping for the tots to
support my husband in his unexpected sole-caregiving stint. Yes, I could stay
in regular contact via Whatsapp. But, I was at the end of my tether. My
husband’s family leave limit had been reached and he really did need to get
back to work. Enough was enough and an unproductive weekend was looming.
So, I fought for my operation. I was ‘in their face’ until
they wheeled me down. The operation was a success, and although my eye will
probably never look normal again, I still have it. The surgeon sewed a bovine
membrane graft over the hole, and then took a piece of conjunctiva from my left
eye and transplanted that over it to revascularize it. Amazing what they can do
these days. And I can still see with it. My eye was saved, and my vision too...
and that, by God’s Grace, is more than I could ever have asked for!
But... having said that, I don’t think I shall be returning
to that hospital, when and if I need to be hospitalized again. I was nearly a
doctor myself, and I have different standards for healthcare staff; much higher
ones. Sure, I cannot paint them all with the same brush, there were and are the
ones who are following a true calling. And I know, that perhaps the working
environment is not always conducive to fostering patient empathy (and who knows
what’s happening with them at home because they are people too), and that there
are patients who can empty one’s trough of human kindness rather swiftly...
But, while I don’t wish it on anyone, having to be rendered a vulnerable
patient at the mercy of the healthcare system, I think one can only truly
understand how important it is how one treats you when you are in this state
once you have been a patient yourself. It’s terrifying. It’s uncomfortable. It’s
unpredictable. It’s lonely. You’re helpless. It sucks.
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