Shadow Boxing and Other Bizarre Adventures of a Blind Girl

By J L Higgins

When I was thirteen years old, I found out that I was slowly going blind.

In 1999, I was diagnosed with a degenerative, genetic eye condition called Retinitis Pigmentosa. This condition will leave me mostly, if not completely, blind.

As a teenager who felt I could see fine, going blind felt far away.

Now, at age thirty-two, I have lost the majority of my peripheral vision and going blind feels anything but far away.

If you are going blind and wonder how in the hell you are supposed to cope with this, my story is for you.

If you love someone who is going blind and wish that you knew how to help in some way, my story is for you.

Humour has been my best friend in coping with my vision loss. Through this memoir I plan to express, with sometimes humiliating levels of honesty, what slowly going blind feels like on a day-to-day basis.

My hope is that by parading my shame, anger, frustration and comedic moments publicly, I will get a few laughs and spread some awareness about vision loss.

You may not win friends with salad, but you do win friends with comedy.

• Language: English
• Publisher: Tellwell Talent
• Release date: Aug 3, 2020
• ISBN: 9780228827337

J L Higgins

Jessica is the first-time author of "Shadow Boxing and Other Bizarre Adventures of a Blind Girl". Born and raised in Kitchener-Waterloo, Canada, she is currently working in Financial Services, and has been accused by friends and family of being an amateur comedian.Jessica, as well as several members of her family, live with Retinitis Pigmentosa.In 2016, at the age of twenty-eight, Jessica lost enough of her vision that she is now legally blind.Jessica hopes to raise awareness for those living with vision loss through her memoir, as well as sharing tangible skills and support for those facing the looming threat of blindness, based on her first-hand experience.The descent into blindness can be a dark and lonely path, but Jessica hopes that by sharing her story she can help light the path for another lost soul."Darkness cannot drive out darkness; only light can do that." – Martin Luther King Jr.

Book preview

WTF Laser Quest

I remember the first time I noticed that I could not see like other people. I was unable to put my finger on exactly what was wrong at the time. All I knew was that the other kids at my friend’s birthday party were doing something that I was unable to do.

When I was ten years old, I got invited to my friend’s birthday party at Laser Quest in Kitchener Ontario, where I was born and raised. On the playground was where I spent most of my days. For those unfamiliar with Laser Quest, or laser tag, it is basically a game of tag on a playground in the dark. The Laser Quest arena is made up of ramps, stairs, and obstacles in a darkened room, and you can play as a single player or on a team. Each player is given a plastic laser gun and must try to get as many kills as possible by pointing the gun at a target on the chest of other players.

On the ground level of the Laser Quest arena, there are barricades meant to act as hideouts, for players to regroup or wait for unsuspecting prey. If you have heard of Laser Quest and experienced the game firsthand, you likely have a big grin on your face recalling the sheer joy of this pastime. Laser Quest was not something kids got to do all the time because it was kind of expensive, so for all the kids at that birthday party, it was such an exciting treat.

My beloved partner Brian is thirty-eight years old with the soul of a ten year old, and if I told him tomorrow that we were going to Laser Quest, he would likely pee himself with excitement. Alas, Brian will need to convince someone else to torment children with him at Laser Quest because this is one activity that I now know my eyes were not built for.

The staff working that afternoon got all of us kids into our gear, and explained the rules of the game to us. When they opened the door to let all the players into the arena to begin the game, hoards of kids went running in, screaming with anticipation and nervous excitement. I was among those kids. When I got into the room, I immediately froze. My excitement turned rapidly to confusion. I thought to myself, how silly this game suddenly seemed. How were we supposed to play this game in complete darkness? Much to my surprise, none of the other kids stopped running towards the playground or squealing with elation. I was the only one who froze in my tracks.

The other kids charged into the dark, pointing their laser guns at each other and laughing as they got their first kills. I could hear their feet pounding the floor, growing farther away from where I stood glued to my spot by the entrance. After a couple of minutes, I began to see large shapes looming out of the blackness. I could tell that the arena contained some kind of playground-like structure that all the people playing the game were climbing on, but I could not distinguish how to get onto it, who was on it, or where my friends were.

In the time I spent standing near the entrance feeling perplexed, many people ran past me and shot the target on my chest over and over again. The kill count during that particular round of laser tag was likely higher than usual, with each player setting a personal best score, because I was basically a sitting duck. Killing me in Laser Quest was like shooting fish in a barrel, and all of those other clichés. As deep confusion and frustration began to set in, I asked myself how all these other people were running and climbing and shooting with ease in this pitch-black room. I figured the problem must be me. Something must be different about me. Why was I the only one who could not play?

I did not really know what to do, when over ten minutes had passed since entering the arena, and I still could not see well enough to participate in the game. The staff that worked at Laser Quest never told us what to do if we wanted to exit the game, to the best of my recollection. I am certain they did go through that, but I would not have been listening because I was so excited to play laser tag; there would be no reason that I would want to exit the game before it was over. Who would ever want to leave a game of laser tag before it was over?

After looking around the arena numerous times, I did the only thing I could think of. I spotted a bright EXIT sign glowing amidst the darkness, and slowly made my way towards it. That exit sign became my lighthouse, my beacon, and my navigation tool. I figured if I just hung around by the exit, maybe people would not even notice I was playing and would just leave me alone until the game was over. I could also be the first player to leave when the staff opened the doors.

I still have no idea to this day what that room really looked like to other people. When I made my way over to the exit sign, outlines of dark structures loomed around me, which I assumed were barriers that people could hide behind to protect their chest plate from being shot. Behind one of those maybe-barriers, a man kept poking his head out from behind one of them and shooting me over and over again. With the exit sign glowing, and a bit of light coming in from under the door, I could tell that this was a man and not another child. I laugh about the situation now; this grown man who was probably a huge gaming nerd, repeatedly shooting a little blond girl in a game and believing he was champion of the world. The nerd-man was racking up huge points and putting in no real work or exercise. The man clearly did not mind that the girl he was bombarding was obviously lost or confused, and was still taking pleasure in accumulating all those points in the game. I bet nerd-man went home and bragged to all of his other gaming nerd friends about how well he played the game, and dared his friends to try and beat his elite score.

While I laugh about this experience now, at the time I wanted to cry. I wanted nerd-man to just leave me alone. I was frustrated, confused, embarrassed, and scared. I think about the way people are nowadays, waiting in line at the grocery store, huffing and puffing with impatience as they wait in line for two to four minutes on average. If I am not mistaken, the game of laser tag lasts for either thirty or sixty minutes. I stood by the exit, scared and unable to see a thing for thirty or sixty minutes, and it felt like an eternity.

I am sure many of you have had that nightmare before; the one where you wake up and open your eyes but cannot see anything. I have watched this scene play out in horror movies or medical dramas before, and it truly would be horrifying to open your eyes and find that suddenly, you could not see a thing. That is essentially what happened to me that day at Laser Quest. I was geared up to have the time of my life; completely unaware of any vision problems I may have had at that point. As far as I knew, I was like every other ten year old at that birthday party. Despite my certainty that I was normal, when I moved from a well-lit room into a darkened one, it felt like I went blind in an instant. My vision was snatched away from me without warning, but the other kids did not experience that same disorientation that I did. The unexpectedness of suddenly being unable to see was too much to process at the time.

When the staff finally opened the doors and turned on a couple of lights in the arena, I was dismayed to find out that the exit I was standing in front of was not even the exit I would need to escape the terrible experience. The real exit was back across the room where we originally entered, so, I slowly made my way back to the entrance in order to leave the arena. I was still moving cautiously because even with a few lights on, the room was not exactly bright and I still had trouble navigating my way through it. The best word I have to describe how I felt in this room would be disoriented. A similar experience would be like; in the olden days (lol) when someone would take your picture with a camera and the flash on the camera was so bright that it would take you several moments after the picture was taken to reestablish your surroundings.

When my friends and I met up after the game they were all gathered in a tight circle, vibrating with energy and comparing their experiences in the gaming arena. There was a board above the cash register where the staff displayed each player’s score. I was relieved that prior to the start of the game, the staff gave us an option to use a nickname or a character name for ourselves, so it was not like I had to look up at a screen that said JESSICA HIGGINS – 0. I tried as best as I could to avoid talking about my score or sharing my nickname with anyone. I simply joined in the conversation about how exhilarating the game was, and how great it would be to play again sometime. Thankfully, no one directly asked me what my nickname or final score was. I do not like to lie, and am, in fact, quite apparently lying when I am forced into the position of being dishonest. If asked directly, I would have had to confess to my non-existent score and come up with an explanation that I did not have, about why I did not participate.

It is funny how scared we are as people to be different. Even now, over thirty years old, I wonder why I feel the need to shield the world from how I really feel about living with vision loss. I could not say anything to my friends about what had happened to me at Laser Quest that day and I did not say anything afterwards to anyone, even my parents. The discomfort over how people would react, combined with the fact that I had no idea what I was dealing with, led me to stay silent about my experience at Laser Quest. I was only ten years old, and you only know what you know. I understand a lot more now, but back then I thought maybe I just had an off day, and that my inability to see in dimly lit rooms was nothing to be worried about. It would be two or three more years before I would be forced to find out why I had difficulty seeing in the dark arena at Laser Quest that day.

II

You Can Call Me Four-Eyes

The next couple of years passed uneventfully in regards to my eyesight. There were no more days like the one at Laser Quest. After a couple of months, that day at Laser Quest was totally pushed to the back of my mind. I guess the fact that I can still recount that outing with a fair amount of detail, means that the experience made a bigger impression on me than I realized at the time. When it comes to memories we claim to have, it is less a remembrance of an actual sequence of events and more a sustaining memory of the way an experience made us feel. If I had been able to participate in the game of laser tag, I would likely have forgotten who was there, how old I was, or the lack of compassion exhibited by the older geek who relentlessly laser-attacked me. The feeling of being totally lost and confused stuck with me all these years, that terrible feeling when you are not in control of a situation.

When I was in grade seven (twelve years old), I started to have difficulty seeing the blackboard at school, and with other distance-related reading. Not being able to see the blackboard was a sudden frustration that I had never noticed before, and for many months, I just struggled through each day without mentioning my vexation to anyone. I was hoping this problem was temporary, and would just go away. It seems denial may be my default setting when a problem surfaces in my life. I would squint my way through lessons, perhaps copy notes off of a neighbour, and make multiple errors in my work. Ultimately, I realized this problem was not going away, and it became obvious that I would need to mention my difficulty in order to have it resolved.

Creating a proper timeline in this story proved quite difficult, as I felt the need to jump from childhood to adulthood and back again with some frequency in order to express my experiences in a way that makes sense. My discovery of who I am, and how I got here, required my childhood experiences to be paired with my adult understanding of those experiences, to convey the bigger picture. When I was a child I could not understand what these annoyances meant, and now, as an adult, so many perplexing childhood memories have gained clarity.

In 2010, I was twenty-three years old and a graduate of Wilfrid Laurier University. I decided I wanted to work as a teacher because I loved helping people learn; it was as simple as that. I loved the feeling of helping others to reach understanding about a given topic, because I knew the joy of that accomplishment and I wanted that feeling to be accessible to everyone. During my post-graduate studies at Nipissing University (teacher’s college) in 2010, I took a particular interest in special education and accessibility in the classroom.

In our special education classes, we discussed the difficulty of diagnosing physical and cognitive conditions that affect learning in young students. The reason these diagnoses can be so difficult is because, in many cases, the students, the teachers, and the parents do not even know there is a problem. Once they become aware there is a problem, they do not have a logical starting point as to what the root of that problem is. As I explained in my Laser Quest anecdote, you only know what you know. I was unaware that Retinitis Pigmentosa existed, thus I could not possibly have made the connection between the difficulties I was experiencing with my vision and an actual diagnosis. Similarly, students who cannot hear well only know what they can hear; they have no idea how the rest of the world hears. Undiagnosed disabilities cause frustration in the student because they are unable to follow a lesson, which manifests itself in a number of ways that are detrimental to learning: acting out, appearing bored or distracted, submitting multiple incorrect answers or failing assessments.

I was lucky that when I started experiencing vision related problems in school, I was old enough to somewhat understand and verbalize what was happening to me, making it possible for my teachers and my parents to investigate possible causes and solutions.

Returning again to my twelve year old self, it became clear after an eye exam that I was nearsighted and would need glasses. The meaning of nearsighted and farsighted is often confused. Nearsighted means I am able to see close up, but am unable to see at a greater distance. Logically then, farsighted means that an individual is able to see clearly at a distance, but has difficulty seeing things close-up. If you look at the root of the words, it is clear what they both mean, but for some reason I always had trouble keeping them straight.

In 1999, my parents booked me an appointment with the University of Waterloo optometry clinic to have my eyes tested. I was unaware at that time that my eyesight was not the only thing that would be tested that day, and every day since. My strength and character were tested as well.

I went into the university for a regular eye exam. I was pouting, and full of attitude because I would have to get glasses. I did not want glasses. Glasses were not cool. I was a year from being a teenager and starting highschool. Woe is me. I laugh about my overreaction now. If only I had known then that I would also need braces for some of the most horrible teeth the world has ever seen, that I would be constantly ridiculed for adoring country music when everyone else loved the Backstreet Boys, that I would grow eyebrows that would put Eugene Levy’s to shame, and that I would have little to no sense of what fashionable meant, perhaps I would not have thought getting glasses would be a world-ending event in my life.

I wish I could make a living talking to teenagers about their identities. I would tell them that even when riddled with all the stereotypical makings of a loser, they could make it through highschool mostly unscathed. They could still make lots of great friends, and be happy. Despite sporting this arsenal of uncool characteristics, I look back on my teenage years rather fondly. A quick shout out to my friend Lesley who told me that my giant eyebrows were something I had the power to fix. Respect.

The details of the eye exam remain difficult to remember. I know it was a life changing appointment, but if you have ever had the rug swept out from under you, you will understand that the world shifts when you get unexpected bad news. Receiving unexpected bad news makes you feel like you are underwater, so you do not really hear everything clearly. The memory does not store itself properly in your brain. This happened to me twice in my life; once on this day of my diagnosis, and again the day my dad died. I remember every moment, and yet I remember nothing.

The optometrist shone lights in my eyes; the ones that help them see the shape of your cornea, and all of that good stuff. He wanted to make sure the eyeball itself was healthy. What the optometrist saw when he looked in my eyes changed everything. He saw the way he was going to die. Nah, jokes. That would have been cool, though. Hopefully there are one or two Big Fish fans reading. The optometrist said he saw brownish patches. These patches, he told me, were pigment buildup on my retina. The pigment is indicative of a degenerative, genetic ocular condition (say that five times fast), resulting in the destruction of the rods and cones in the eye. This condition is called Retinitis Pigmentosa.

The rods in the eye are responsible for controlling vision during low light levels (Ah, Laser Quest) and the cones are responsible for colour vision, central vision clarity, and spatial acuity. The rods are concentrated on the outer parts of the Retina and are triggered by low lighting conditions. When the rods begin getting damaged, the individual experiences diminishing peripheral and night vision. When cones begin getting damaged, the individual will experience diminishing colour sensitivity and worsening central vision.

Upon discovery of the pigment buildup that the optometrist found on both of my eyes, he performed a series of other tests to determine the stage of my condition. Calling Retinitis Pigmentosa degenerative means that the condition slowly worsens over time instead of occurring suddenly. For some people with RP, vision loss can be much more immediate and their eyesight can degenerate rapidly. With the strain of RP that runs in my family, the deterioration of vision has typically been slower. Part of monitoring the rate of speed of this degeneration involves field-testing, which essentially graphs your peripheral vision. Peripheral vision includes the range of vision an individual has from side to side, but also up and down. When people say they see something out of the corner of their eye, that is peripheral vision at work. A typical humanoid possesses 180 degrees of peripheral vision.

I took part in a field test at the university immediately, which entailed placing my head on a chin rest inside a big white dome. There is no light in the dome, only a black dot fixed directly in the center. I was told to keep both of my eyes fixed on this dot, and the optometrist would control a pin-sized light with his hand. He would hold the light on the periphery of the dome and slowly bring the light in towards the black dot. The optometrist would repeat this process twelve times, beginning each descent from a different starting point, similar to the hours on the face of a clock. He would start with twelve o’clock, then one o’clock, and so on, until he returned to twelve o’clock. When I saw the pin-sized light enter my field of vision, I was asked to push a button to indicate that I could see the light. I was reminded to never let my eyes stray from the black dot in the center, otherwise the test would be inaccurate.

To this day, I think about how stupid it is to expect someone not to look away from the dot. Have they never heard of the, do not push this button experiment? Even those of us who exhibit the highest levels of self-control are going to push the button. Despite this, I did my best not to let my eyes stray from the all-important dot in search of that pin-sized light. The optometrist and I repeated the process of tracking the light, at each interval of the clock: one o’clock, two o’clock, three o’clock, and so on. This test would graph the exact outline of my field of vision. When the test was over, I was told I would get my results and then we would discuss next steps from there.

Once the results were in, I was asked to come back to the university to discuss them. I do not recall if both of my parents were present during that meeting. I know my mom was there, but I cannot recall if my dad came too. My parents and I were presented with printouts showing the results of my field tests. These printouts meant nothing to me. At this point, I was now thirteen but still knew nothing about eye conditions or ocular health. In addition to my lack of understanding at the time, I had nothing to compare this graph to. What would the graph look like for someone who did not have this pigment buildup? Did I do well or poorly? What was this going to mean for me now and in the long run? Well, I was about to find out.

III

My Diagnosis

During my follow-up meeting at the University of Waterloo, I was diagnosed with Retinitis Pigmentosa. I was thirteen years old. RP is a genetic, degenerative eye condition. RP can present itself in only one member of a family, or it can affect many members of a family. Degenerative means that my vision, primarily my peripheral (field) vision and night vision will continue to deteriorate over the years, with the end result being almost (if not total) blindness. Total blindness is quite unlikely, but in many cases the vision of RP patients deteriorates to almost nothing.

RP is a very individual condition and I would remind readers that this is the story of my experience living with RP. There are so many different strains of this disease that affect people in a wildly varied manner, based on a number of factors. I have tried to depict the most accurate representation of this condition that I can, despite knowing that my knowledge is incomplete. With every year that passes, I learn more and more about others’ experiences living with RP. It has been an enlightening journey so far, but it is certainly far from over. The most enlightening part of hearing about others’ experiences living with RP is the toolbox of strategies for living with vision loss that can be accumulated over time. Discussing RP with other people, who live with the same condition, not only establishes a sense of camaraderie between us, but also offers a differing perspective from my own that I can use to my advantage.

The symptoms experienced by people who live with RP, result from damage done to the rods and cones in the eye, and a buildup of pigment on the retina. The rods are responsible for the ability of the eyes to adjust to darkness, allowing people to see in dimly lit environments, as well as for peripheral vision. The cones are responsible for central vision clarity and colour perception. In my particular case, my central vision and colour perception have remained largely intact, which suggests that the rods in my eyes have been sustaining the most damage up to this point. For most people living with RP, rod damage occurs first. The earliest symptom reported by most people suffering from RP, is detectable night blindness. I experienced noticeable night blindness at a very young age, probably around ten or eleven. It was a number of years after that, before I noticed discernable peripheral vision loss.

I was also diagnosed with cataracts in my mid to late twenties, which does affect my central vision. My cataracts are not advanced enough to cause me significant strain. Developing cataracts is not uncommon in people who are diagnosed with RP. Many people develop cataracts as they age; it is a more common visual challenge among people in their fifties and beyond. I developed cataracts when I was about twenty-six or twenty-seven years old. There is a surgery that can be performed to remove cataracts, but surgery is only performed when the cataracts are fully developed. The reason for carefully considering the most appropriate time to surgically remove cataracts, involves the risk associated with any surgery, as well as the fact that cataracts will likely develop again. Undergoing surgery this early in my life is not in my best interest; so we wait.

Degenerative ocular conditions can damage peripheral vision and work their way inwards, or they can begin centrally and work their way outwards. Mine is the former. Another name for peripheral vision damage is tunnel vision. When optometrists view the eyes of someone with RP, they see brown buildup, or patches, of pigment on the retina that are not present in people who do not have RP. In the case of a healthy eye, the retina is an orange/red colour and these patches of pigment are not present. There are images online that compare a healthy eye to that of someone with Retinitis Pigmentosa, for those interested. Simply type Retinitis Pigmentosa and/or Healthy eye versus Retinitis Pigmentosa into a search engine, and you will find comparative images.

Retinitis Pigmentosa is uncommonly common if I can put it that way. The only numbers I have come across lately predict that about 1 in 4000 people live with RP. I commonly visit sites such as Fighting Blindness Canada, or Foundation Fighting Blindness for the most up to date information, based on where I live (Canada). RP turned out to be far more common than I would have predicted, but it still isn’t something that every person will encounter in their lifetime. For a long time, I felt isolated and alone because I did not know anyone else in the world with RP, beyond my immediate family. The Internet has eased my feelings of loneliness by allowing me to connect with others worldwide who live with RP. Someone does not have to live in close proximity to me, in order for me to feel like I know more people living with RP.

During my diagnosis appointment, I was also given a prescription for corrective lenses (a nerd’s way of saying glasses), as I am also nearsighted. The good news was, being nearsighted is common and can be improved, if not completely corrected with glasses. The bad news was, Retinitis Pigmentosa had no cure then, and it has no cure now. As of yet, there is nothing concrete to slow or stop the progression of Retinitis Pigmentosa.

What came after my diagnosis is difficult to explain because emotions are so complex. It is just hard to put into words what it felt like to be told I would be battling vision loss for the rest of my life. Since I was only thirteen, most of what I was feeling was shock, and a lot of uncertainty about what this would mean for me. By shock, I mean an inability to fathom the gravity of how this condition would impact my future. My thirteen year old self could not anticipate the uphill climb that was about to begin. I did not feel a huge sense of loss or fear yet. I still felt like my diagnosis was not going to change my life. I should not say I was not afraid of losing my vision, because I was; but it was a very vague and distant fear. Being told you are slowly going blind is life changing, but at that time I felt able to do most every-day things as well as anyone, and did not feel the frustration of limitations that would later present themselves. Sure, I had that one bad experience at Laser Quest, but I could just not go back to Laser Quest again right? Then there was the blind rage (Get it? Blind rage?) that I felt towards the optometrist who was passing on all of this information to me.

After the optometrist explained what Retinitis Pigmentosa was and what it would do to my eyes, he proceeded to tell me that I would never be able to get a driver’s licence and drive a car. The optometrist also advised me that I should seriously consider not having children, as this condition is highly genetic and would very likely be passed from me to my children. If I am not mistaken, there is a fifty percent chance that I could pass RP on to my children, if I chose to have any. I am over thirty years old and I do not have children. In all likelihood I will never have children. I am certainly not saying that this optometrist is the one and only reason for that. I would never allow one optometrist, with no compassion, to forge my path in life, but I would be dishonest if I said that his voice has not echoed in my mind each and every time I have asked myself whether or not I want children.

In my opinion, this specific optometrist did not show much tact in the way he discussed my diagnosis with me. I was still a child myself after all. Not only was the optometrist expecting me to absorb that I would be slowly going blind, but he also expected me to be able to comprehend how this condition could impact any future children of mine.

I wish this optometrist would have better understood that he was talking to a person. Not just any person, but a thirteen year old. The optometrist did not dumb it down as you would say, taking into account that I was so young and had just been given fairly complicated information that would be changing my life. I had not been given the chance to wrap my head around the words the optometrist used, and what was actually wrong with my eyes, before he brought out the big guns and recommended to a thirteen year old that she seriously consider not having children.

An internal war is being waged inside me to this day about whether or not I want children. I would be a liar if I claimed that my vision loss played no part in my decision not to have kids. What I also know, however, is that despite many hard days, I love my life. I have never resented my mom for a single second for having children, with the knowledge that vision loss might run in her family. Not only this, many people raise children with severe vision loss, or total blindness. Raising kids while living with vision loss is undoubtedly more difficult, but it can certainly be done, and done well.

I still have not decided definitively whether or not I want kids. If I could turn back time, I would consider speaking to a personal counselor about what this optometrist said to me far sooner than I did. Rather than letting his words fester into anger and bitterness, I wish I would have aired them out and let them fly away. When I enrolled myself in personal counseling at the age of thirty, it was the first time I had ever addressed the lingering emotions I held regarding my diagnosis. I am currently working on accepting the decision I make about having children, regardless of where I land. If I choose to have children, I want to enter into that commitment with my whole heart, and an understanding that my vision loss will not negatively impact the lives of my kids. If I choose not to have children, I want to feel confident that my decision was not dictated by my vision loss. If I allow my vision loss to dictate this decision for me, I will never be free of the regret and resentment that I will feel towards Retinitis Pigmentosa. I never want to sacrifice something that I want because of RP, when I do not have to. One thing I know that I do not want, is to live with regrets.

While I think it is clear that my optometrist’s advice about having children haunts me even now, when I was a teenager, I was much more upset about being told I could not drive. Driving becomes many teenagers’ raison d’etre. How would I ever be cool and go to cool places if I couldn’t drive? Good God, I would have to wear glasses and I couldn’t drive anywhere cool? Just kill me now, or at the very least homeschool me.

The way someone is given a diagnosis, particularly if the diagnosis is something chronic or profound, can help to shape their response to it. The way that my optometrist presented my diagnosis to me, told me that I was indeed different and that there would be challenges in my life that others would not experience. Perhaps it would have benefitted all involved, for the optometrist to have had a well-rounded conversation with my parents before announcing everything to me. Helping my parents to understand how to gradually introduce all of these issues to me at appropriate times, and in a loving, supportive manner, may have helped me come to terms with my diagnosis in a healthier way. I am not a believer in shielding children from the evils of the world. Children are very resilient. They bounce back from some of the most traumatic things you could think of, such as child abuse, abandonment, severe physical ailments, and so on. Despite that, a little compassion never hurt either. It never crossed this optometrist’s mind that by failing to show care and consideration to me during the diagnostic process, he could be playing a detrimental role in how I would cope with my vision loss. Doctors in general, should never forget that they are dealing with real human beings. In many cases, positivity and hope is just as crucial to healing as actual medicine.

I do have one request for any parents who are aware that they have a genetic condition that their children may be predisposed to develop. My request is simply to consider talking to your kids about the condition, and the possibility that they may develop the same thing. Even if the child blows you off or shrugs their shoulders and walks away, make sure they know that you are always comfortable talking to them when they are ready. Everyone is different, so I do offer this advice based solely on my experience and what I feel may have helped me. I have absolutely no right to offer parenting advice, as I do not have children of my own. All I can say is that my diagnosis was very confusing to me at thirteen, it became far more difficult to cope with RP as I got older and lost more of my vision, and sometimes it just helps to know that you have someone safe to talk to.

I am by no means suggesting that my parents did not take excellent care of me when it came to my vision loss, but I do wonder sometimes if there could have been some benefit to discussing the possibility that I might inherit this condition prior to my diagnosis. Would it have been the most difficult conversation a parent would have to have with their child? Absolutely, but it would have given me the background I needed to put my experience at Laser Quest and other similar situations into context. Perhaps it would have better prepared me for my diagnosis and the years that followed.

Alternatively, it is essential that a child does not consider a diagnosis the defining feature of their character. Had my parents given more attention to RP, would I have felt different from my peers and possibly ostracized from normal childhood activities? There is really no way to answer this question with certainty. All I know for sure is that as an adult, looking back on my childhood experience of being diagnosed with RP, I had a lot of difficulty understanding the ramifications of my diagnosis, and the steps I could or should take, to prepare for a lifetime of slowly losing my vision. Despite my confusion, my parents ensured that I was never inhibited by my vision loss when I decided to devote my energy to various pastimes, and I will always be grateful to them for helping me live a fulfilling life as a child and teenager with vision loss.

I do not envy a parent being forced to decide when and whether or not to give their child this kind of information. I just think that honesty and transparency help foster an environment of trust. An environment where everyone feels safe to ask questions and talk about hard things. Not only will this transparency help explain frustrations that may otherwise remain a mystery, but it will also help the child know that they can feel safe talking to someone about their feelings in the future if they do end up developing this condition.

My parents loved me as profoundly and endlessly as two people could possibly love their children. Just like there is no manual on how to deal with vision loss, there is no manual on how to parent a child who might develop a degenerative eye condition. Given the position my parents were in, I believe that the majority of parenting teams would have taken the exact same approach that mine did. What I am suggesting is to use their experience and mine, to take an additional step forward and start a difficult dialogue. The love and support was there for me in spades, but the bare disclosure part was missing.

IV

The Greatest Man I Ever Knew

My dad, Terry Higgins, is my hero. There is no other way to start than that. Sadly, my dad passed away fifteen years ago, when I was only eighteen years old. His death rocked me to my core, but his death did not diminish the love we shared, nor did it lessen the pride that I still feel, being his daughter. In death, my dad is still my hero. He was, in many ways, my complete opposite. He was so many of the things I wished I could be, but just am not. I am loud; he was quiet. I am a hurricane of attitude and emotion; he was the calm in the storm. I have the shortest fuse that probably exists on the planet; he was patient. I need to have a plan; his plan was to go wherever life carried him. He was handy; I am unable to fix anything, even when given the most explicit instructions. He enjoyed solitude; I enjoy people. He was a man of fewer words; I end almost every day with vocal cords that are hoarse from overuse.

All that said, I do realize that the father I remember is not all that made up such a phenomenal man. I also know that my dad was not perfect. He had different relationships with different people, and each of my dad’s friends and family members have different views and perspectives of who my dad was. The common denominator shared amongst all my dad’s loved ones, in my opinion, was that he loved with his whole heart. There were times with his brothers, I saw my dad talking and laughing as if he would never stop. I heard my dad arguing with my mom sometimes, and I understood he was not always as patient as he seemed to me. I watched my dad play with my younger cousins and he would act like he was five years old again; an energetic and playful side that I also remember enjoying in my younger years.

My dad never seemed to let life get him anxious; he didn’t need a plan for everything because that would be impossible. Despite my dad’s spontaneous nature, I know, during important times, he was an excellent planner. When we went camping as a family, or when my dad went on his annual fishing trip with his brothers and friends, he planned everything to a T. He would take care of every little detail and for that week, everyone who had the pleasure of tagging along was very well taken care of.

Thanks to my mom and dad, I got to enjoy everything pleasurable about vacations, such as enjoying time with my friends at the beach, without having to worry about the stressful parts of planning or execution. I spent every moment of our camping trips doing what I love: swimming, reading, hanging with my pal Kelly, eating steak and other delicious meals, sitting for hours by a campfire and being fed again, this time delicious cheesy snacks, and being lulled into some of the best sleeps of my life by the cry of the train whistle and the symphony of the forest at night. There is nothing like the crunch crunch, bang bang of a trash panda rooting through your shit (trash panda being the name that should have been given to raccoons). When you are camping, no food items are safe from the greedy little paws of the trash panda.

As an adult, I realize how much work went into planning all these camping vacations, because I inherited the role of planner for many of my camping trips with my friends. At times, I wish I could go back and offer a little more help to my parents, or at least show my appreciation more. I know it was my parent’s pleasure for me to experience vacations in such a free and fun way, but, knowing how much time they spent taking care of all the details, makes me wish I could have done a little more.

My dad and I are also the same in many important ways. We share so many interests, and always have. We love sports. My dad loved all sports, while I became passionate about baseball, and later on, hockey. I played softball most of my life, with my dad and