It’s the first day of school and he is worried about making friends, finding classes, and navigating a world that is literally closing in on him. You are nervous as you watch him prepare for his day even though you have seen him do it many other times. Your son is different. Your son has an invisible disease that is robbing him of his sight. You have to let him go although you know he is going blind. You won’t wave overzealously to him as he smiles eagerly at the stoop of the school. No, you will hide your fear with a haphazard smile and he will crack a cautious grin and wave to you anxiously. You are not sure if you will experience the happy anticipation of hearing how wonderful his day was because his previous school proved to be a terrible experience. You pray a new year and a new school will be the right decision for you both. The question, “Why?” rings in your ears frequently and today is no exception. You know the answer, it’s because he was born with this genetic condition that is stealing his vision. And then that same sickening feeling wells up from your gut and you try to stop yourself from revisiting the same internal battle that steals your sleep. You know the conclusion is always the same, life hasn’t been fair.
When it comes to children diagnosed with a disability that robs them of any physical or mental capability, it is often hard to see the silver lining. The hard truth remains the same, it isn’t fair. It is unfortunate that in our supposedly accepting society, people often prey upon the weak much like a lion attacks the weakest of a herd. Too many continue to act like animals when encountered with someone who shows the slightest fragility. School should be a safe environment for every child but instead many children are teased, bullied, and excluded based on differences. Parents often have to decide if they want their child to continue an education at a school that is adding unwanted stress to already stressful physical or mental health issues.
Yet, it happens every day and the above llustration is a very certain reality for a little boy living with a rare genetic disease. His name is Avery, he is 10, and he was born with a condition called Retinis Pigmentosa. This inherited disease causes severe vision impairment by retinal degeneration of the eye. During the course of the disease, the cone and rod (photoreceptor) cells die which causes a decline in vision. The landscape of life for individuals with this disease slowly turns into a confined view of reality. Life that was once bright and colorful slowly turns into a channel of black.
Avery is as bright and as inquisitive as any other child his age. Through it all he has tried not to let his disease define him or what he wants to accomplish. But, Avery’s vision is slowly fading and with it, it takes the spirited independence of a little boy. He no longer rides a bike or a scooter because his disease has progressed enough to make these iconic childhood activities risky. At his young age, he now has to be more cautious because even walking into a new environment creates challenges.
And so brings us to Avery’s first day at a new school. He leaves behind students who heckled him for understandable clumsiness associated with his disease, parents who allowed and contributed to the bullying, and impatient teachers. He now has to familiarize himself with a new school, make new friends, navigate a completely different environment, just because he was born with an incurable disease. That is when unfairness is caused by the actions of those who made him to feel unwanted over no fault of his own. Disease and disability are never an elected decision of life, but the unfair treatment makes it seem that way. Teach your children about acceptance. Teach them to love one another regardless of differences. Even a child can be a bright light, and they too can make a difference in someone else’s life. And yes, a bright light for a child whose world is growing dark.
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My middle name is Raine, pronounced just like the precipitation. (My mom’s always been a bra-less, free-thinking, interesting woman, to say the least.) I hated the name when I was a kid—probably until sometime in high school—most likely because it was different. Being different was highly undesirable then. Now, it doesn’t seem to matter. I’ve embraced a great many of my quirks and decided I don’t care what most people think. I understand that a great amount of nastiness in people springs from jealousy and all I feel about that is pity. And the truth is, I don’t remember anyone actually making fun of my middle name. If they found out what it was, I’d get “That’s weird” or “That’s cool” but nothing glaringly negative. It was just the fear of that potentially awful reaction that kept me tight-lipped about my middle moniker.
To this day, when my mom or granny says my first and middle name, there’s a notable southern twang. It’s like it was built into the two-word phrase. My granny was born and raised in Kentucky and for a time, my mom worked there on the horse farms. It’s where the father I’ve never met lived. Where he probably does still.
When I was in elementary school, I remember visiting “down home,” the farmhouse Granny grew up in and where her brother Fred, or Uncle Heavy, as I knew him, still lived. I will always remember the lack of an indoor toilet more than anything. And the fear of sitting over that black hole in the spider infested privy. Now, my memories of him are kind of hazy but one thing that I remember in detail was the way he liked to tease me. I’m sure he picked on me about lots of stuff but what I really held onto was the way he called me Thunderstorm. Lindsey Thunderstorm, instead of Lindsey Raine. I remember constantly correcting him, getting more and more frustrated when he refused to listen. I can hear the growls and indignant retorts now. Even then I was a hothead. Maybe he saw that in me. Maybe he was just trying to get a rise out of me. I’ll never know since he passed away before I was old enough to wonder about it.
What he couldn’t have known was just how stormy I’d end up. Along with some unfounded rage issues, I fight depression. It’s hard to pinpoint when the clouds of this invisible, torturous illness moved into my life but when I think back, I’m inclined to believe it was around puberty. Something changed chemically. A switch was flipped. Couple that with the already tumultuous experience of being a teenager and you have a recipe for some fantastic highs countered with incomprehensible lows.
I was angry. I was sad. I lashed out. I earned another name I didn’t care for. Bitch. The worst part was, I, as well as everyone around me, didn’t see what was happening. I knew I was miserable but I didn’t know why. In the beginning, Mom liked to attribute my moodiness to the birth control injection I’d opted to get as a 15-year-old instead of the pill. That very well helped elevate my misery—as well as my weight, which did nothing to improve my mood.
After my junior year in high school, I dumped the goofy, ponytail-having-boyfriend and switched to the pill for contraception. I felt like a different person, for a while. The clouds never fully parted. It felt like the darkness was always there but as my hormones leveled out, I learned to hide it. More than Geometry, Algebra, or English, I mastered the art of acting. I learned quickly that no one understood why I might feel gloomy and introspective. So, I hid it. But not for long. The driving rain from the storm raging in my head shoved me farther and farther into the darkness.
All I really remember about my senior year was prom, being inducted into the National Honor Society, graduating, and the weight in my heart, the blackness seeping into every corner of my mind. And one other moment. I wore a perpetual frown and often put my head down on my desk in school. “Whatever” had become my go-to response. The once interested participant in class was obviously gone, traded-in for a heavy-sighing, eye-rolling lump. If anyone noticed, no one said anything. No one except my college-prep English teacher. I’d always really liked her, having her my sophomore year as well. She supported my writing and love of books and was a generally fun person to learn from. Senior year that changed. At one point, our CP class had seventeen different projects/assignments we were working on simultaneously. I understand that she was trying to prepare us for college, hence the “college prep” course. But when I learned that the general English students were playing board games during their class time, I was disgusted. I was already struggling to get out of bed every day and her harping and piling on the tasks was enough to make me hate her. My loathing didn’t go unnoticed, even if my depression did. After a particularly snarky reply to some question she asked me, she followed up with: “Why are you being such a bitch?” In front of the whole class. All I could do is shrug and collapse in on myself, staring at my desk.
I know I deserved it. My attitude was terrible. For years after that, I didn’t like her. I eventually forgave her, like I’ve forgiven and continue to forgive those that don’t understand.
At some point during my last year of high school, my mom, having a Bachelor’s in Psychology and a keen perceptiveness, had finally taken me to the doctor, being the only person who realized I might have a problem beyond being a moody teenager. Though I remember very little about the actual appointment—I went kicking and screaming—I know nothing was prescribed. The magic number for receiving anti-depressants is 18. I graduated at 17. When I returned to the doctor in August after my birthday, I was placed on Zoloft. To this day, I find it ridiculous that one day as a 17-year-old I couldn’t have the medication, and the next day as an 18-year-old, I could. It might not have been literally overnight, but the difference was mere months. I suffered through my entire senior year with no help, medically or otherwise. It’s upsetting to think about it now and to realize someone else is probably facing the same thing.
I’d like to say that things got better after high school, that I grew out of the funk so many people assumed I was in. But I’d be lying. And though I’ve gotten so good at lying about how I really am, what I’m really feeling, I’m tired. It’s exhausting pretending you’re fine because trying to explain the pain inside to most people is impossible.
I’ve spent the years since graduation in varying states of depression and on multiple medicines. I’ve hated the detached feeling most of them cause and on several occasions, I’ve stopped taking them. While on them, it’s easy to feel like I’m fine, that I can handle my mentality. But every time I walk away from them, the darkness eventually overpowers me. It’s made it clear that it will never go away.
Now, I feel like I’ve come full circle as I’m back on Zoloft. After a roller-coaster ride of deep sadness, numbed passiveness, the inability to stop crying and crawl out of bed, sexual dysfunction, and sickening withdrawal symptoms, I’ve come back to the first medication I was put on. It had worked well then, but eventually stopped, prompting me to try something new. My doctor put me back on it since 15 years has passed and my body chemistry is completely different now. It’s also good for someone like me who doesn’t want the glaring side-effects or the extreme emotional deadness that some of the other meds cause. Luckily, it’s working well at a very low dose.
The last time I came off of my anti-depressant was terrible. At the time it was a pretty high dose of Effexor. The withdrawal was a delightful medley of dizziness, shaking, and weird flashes in my field of vision. I thought I’d stepped down slowly enough but apparently not.
I was sure I never wanted to go back to the drugs. I was sure I could handle the depression. It was during this time, and the many others where I was trying to be normal, non-drugged, that I had to put on the Academy Award winning performances. No one wants to be around someone who mopes around all the time or has mood swings that would make even a pregnant woman raise an eyebrow. No one wants to hang out with someone who cries all the time. About everything. Broken plans. Being late to an appointment. Watching a Campbell’s soup commercial. So, I would summon all my skills and be someone else.
When Robin Williams killed himself, I’d been off my med for a year and three months. I was struggling. I’ve never actually cried over the loss of a celebrity but the tears welled up in my eyes as I read about his death.
Not just for the beloved actor, so familiar he was like family, but for the man I knew had suffered silently for probably most of his life. My heart broke because I knew why he’d put on the mask. And I also knew why he’d left this life behind him.
Awareness about depression and other metal illnesses is growing, but it still feels like an awkward conversation. It still feels like I need to fake my way through my days and the discomfort of others is apparent when I actually bring up my depression, which isn’t often, for that very reason.
I’m not likely to try to step off of my medicine again. The coming off, the full-force depression that always returns and the going back on, have only gotten more difficult with age. I’m done fighting the fact that I need a pill to chase away the clouds. I realize it doesn’t make me weak any more than a diabetic is weak for needing their insulin.
When I’m on my med, it’s easier, but that doesn’t mean I don’t have moments where the rain clouds begin to gather. The difference is that I can pull out of the growing darkness and make myself refocus. There will always be a part of me that exists in the middle of a drowning downpour but I’ve learned to embrace it, to use it. It’s where my writing comes from—from the deep thoughts and emotional responses. It’s true I’m a more prolific writer when I’m not medicated but needing the medication is something I’ve come to terms with too. I’ve learned that there is no shame in using an umbrella to get through a thunderstorm—that after the rain, there’s often a blue sky.