Look Straight Ahead
By BJ Edwards
“Open as wide as you can for me…” the doctor says from the other side of the white light. “Look straight ahead… that’s it, nice and wide and straight ahead.” With warm and capable fingers, he raises my eyelid higher, and I grip the handles of the frame and wait for the light to retreat. “Ok…” he says and scribbles, updating my notes. I sit back, my stomach in anxious knots. “Let’s talk about this trabeculectomy.” I am in the glaucoma clinic at the eye hospital, it is 2014, and I am about to have a conversation about surgery that will control my pressure, preserve the little eyesight I have, and allow me to come off Diamox, the drug that has given me so many problems.
“Well,” I sigh. “I think, given the situation, we have very little choice.”
I have been in and out of eye hospitals for much of my childhood, experiencing trauma, stress and fear. I had my first eye operation at the age of six and have had around ten operations to preserve my eyesight and control eye pressure. I have glaucoma and cataracts and am now totally blind. I have seen a lot of changes over the years, both clinical and pastoral, but one thing remains constant, my feelings. In this article I will talk about my experiences in eye hospitals and discuss how I think services can be improved in order to make the experience as pleasant as possible for the patient. As you will see, no matter the age or background of the patient, there is always baggage to be carried and buttons to be pressed.
I’m ten years of age, I’m sitting in awaiting room in the eye clinic. There’s the smell of disinfectant, the lights are dim, and I am scared. Every time I come here, I experience some degree of pain or separation. The last time I came here I spent three months on the children’s ward because of complications after an operation.
We go in to see the doctor, not my usual one, another one. I’m here because my eye really hurts, my vision is terrible and my pressure is high. I have the familiar and unwelcome feeling of losing control that I am to be swept away by events I cannot influence. The doctor measures my pressure, it is fifty-two. He sounds serious, and I start to cry because I know I’ll have to have another operation, and I’ll be in hospital again, homesick, away from mum and dad. A year later, the pressure in my right eye will be under control, its vision preserved for many years to come. My left eye however, will continue to deteriorate, be painful, enlarged and light sensitive, and it will be removed on my request. Similar scenarios to this will be familiar to many visually impaired people. It is therefore unsurprising that when such negative associations are formed from a young age, they filter into adulthood. Thirty-two years on, I still experience high levels of anxiety when I go to Moorfields. I am congruent enough to understand that this is due to historical experiences and not current ones, however, this knowledge does not prevent the negative, some would argue, irrational feelings from resurfacing. Undoubtedly, Moorfields has changed over the years, it is more welcoming and less grim, but the phobia of the doctor remains.
Let me take you through a recent visit to Moorfields…
I exit the tube at Old Street. I do not have my guide dog with me as he isn’t escalator trained, and it is Summer and I am travelling at rush hour. Instead, I take my cane, a mobility aid that I am fairly poor at using, as I rarely use it. However, the underground staff, are as always, very helpful, and I reach the surface without a hitch. The route to the hospital is straightforward, and if I had my dog Oliver with me, we would jog up the road, deftly avoiding obstacles and the detritus of the city. However, as I am dogless, things are more difficult. I ask the member of staff to put me on the right track.
“Just follow the green line.” He says cheerfully.
“I can’t see it.” This seems to temporarily unbalance him, and it is apparent that he is unaccustomed to encountering someone with a white cane who has no eyesight.
“I guess it would help if the line was tactile.” I observe, striding forth, waving my cane in lazy, unpractised arcs.
With a little help from a passer-by, I eventually arrive. I find myself confronted by a sense of bewilderment. Rumour has it, you are now asked to sign-in on arrival. My cane, an ungainly aluminium tube, collides with what appears to be a plinth. I explore it and find a touch screen. Ironically it is utterly inaccessible. I stand there for a moment then sense a presence nearby.
“Hi, can you help me please?” I ask, trying to keep the anxiety and irritation at bay.
“What’s your name and date of birth” a male voice growls, deep and accented. I have no idea if he is a member of staff, a volunteer, or the ghost of a disgruntled patient.
“Are you a member of staff?” I ask.
“Pardon?” he rumbles.
“Who are you?”
“Your name” he repeats. At this point I have three choices; either make my way to where I think the reception desk is, interrogate the man further, or give in. I decide to surrender and give him my details. He taps the screen, and I thank my lucky stars he didn’t ask me for my bank details.
A hand clamps onto my forearm and attempts to propel me forward. “Clinic two.” he says. I shrug and he grabs my elbow in a grip which feels like an attempt at a restraint technique.
“I’ll take your right elbow if I may.” I say, exasperated at his lack of communication and training.
Eventually we arrive at the clinic, I go to the counter and am told that I didn’t have to sign-in after all. The man disappears and I am clumsily manhandled to a seat. It seems to me that docking with the international space station would be smoother and more dignified.
Then comes the waiting. I am alone with my thoughts. I think about all the times I have visited an eye clinic, all the operations, the sense of helplessness and the pain wrapped-up in every decision and every stroke of a pen. Despite the fact that I am 42 years of age, utterly in control of my own destiny, fit, strong and independent, I feel irrationally nervous. I wait for a long time without any human contact. I really fancy some water but have no idea where the fountain is.
Eventually I hear my name called out. I have one chance to pin-point where the voice comes from. I rise to my feet, hoping she will repeat my name so I can home in on her. She doesn’t. I walk towards the memory of the voice and the nurse asks me to follow her. This is tricky as her shoes are silent. She eventually realises that I am one of the few visually impaired people who can’t see, and she helps me to a chair in her lair. Now comes the pointless indignity of the eye test. Thankfully they gave-up asking me to look at a chart years ago, and now revert to hand movement, as the penny finally dropped and they realised that even holding-up fingers is a waste of time. As I sit here, I am reminded of the thousands of little indignities, the thousands of eye tests that nobody can explain and give me a good reason for. I glide into automatic pilot and answer her questions. I can’t see her hand moving, but I can sense it. Although my eyesight disappeared years ago, my records will show that I have hand movement because sensing is as good as seeing in some situations. She scribbles something and guides me out and into another chair. I feel like a parcel made of flesh, deposited at various points throughout the hospital to sit in still, contemplative silence.
It’s getting late, there’s barely anyone here now. I feel nervous and a little more anxious, wondering if I have been forgotten, wondering if I’ll catch my train home. Just a little human contact would be nice, if only to tell me that they know I’m still here.
“Barrie Edwards.” Nobody ever calls me that, I’m BJ Edwards, I have been since the age of eight. I’ve told them before, asked them to call me BJ, but to no avail. The formality of Barrie always ramps up my fear and reminds me of young Barrie who had no choice but to give-in to every clinical decision in the obsession to save me from the doom of failing eyesight.
I’m here again, different darkened room, same drill. I can do it in my sleep – open wide, let them put a drop in my eye, accept a tissue, make small talk. Lean forward, chin on rest, look straight ahead at the intense blue light, the retreat of the light, the serious and quiet processing of information before the inevitable bombshell in the form of a number. Numbers seem to have haunted my life, as someone who has always been creative, writing, drama and sport my territory, maths my curse, the number that is attached to the pressure has followed me throughout my life. It has been as low as two and as high as fifty-two. Before my trabeculectomy of 2014, it was hovering around forty.
“Excellent!” I have never seen this doctor before, but he is nice. “Eight. Great stuff.” I feel relief flood over me, my irrational fears and anxiety swept away. I do not need to stay in, I do not need surgery or drugs. Despite being pretty much totally blind, my pressure has been stable for a few years now, my eye comfortable, the trabeculectomy having saved my eye but not my sight.
I feel myself again, adult, competent, intelligent. We talk about a cataract operation and decide that it would be pointless because of the historic damage to the eye. I feel sad. I have been harbouring the fantasy of recovering some useful eyesight for years, but it isn’t to be.
We shake hands, vowing to meet again in nine months. Despite the bad news about my cataract, I feel a sense of relief, tinted by disappointment and melancholy.
Can my experience, and the experience of others be improved? Yes. Clinicians must be aware of the baggage people carry. Hospitals, and especially eye hospitals press buttons. Years, and sometimes lifetimes of pain and distress lodge in the mind and emotional memory. When the last of my eyesight deserted me, I was offered no guidance or advice. I sought it alone but was stunned and disappointed to find that the RNIB’s sight loss counsellor was sighted… Moorfields and hospitals like it are wonderful. They tirelessly fight to preserve sight, but it is sometimes at the detriment of emotional and mental health. Sometimes it’s better to be sightless than take mind altering drugs like Diamox. Sometimes I would have wanted doctors and nurses to treat me with a little more consideration and empathy. I learned on my last visit that a cataract operation was no longer on the table. The doctor had no idea of the impact this news may have. Luckily, I am Ok, but somebody else may not be.
Things must not only change at the emotional level, but at the practical level too. Staff and volunteers must have proper training, and communication skills must be improved. Somebody alone must not be left waiting for hours without a word or the offer of a drink. When you see a person waiting, you have no idea how many times they have waited, how many tiny emotional ripples just being in a hospital causes. Whenever I go to an eye clinic, two people come; me, and my younger self, sharing the same chair, sharing the same experience and memories.
If you have sight loss, we would be delighted to hear your experiences of ‘tea and empathy’ or otherwise when visiting eye clinics and opticians. Please complete our patient survey and help us to bring about much needed changes https://www.surveymonkey.co.uk/r/SeeingBeyondPatientSurvey