Let’s Get This Over With: A Love Story

Exactly one year ago today, I met a new friend for a casual evening of food and conversation. We had exchanged several text messages and met casually a couple of times, but we didn’t know each other very well at all. I assumed him to be a stand-up guy—we had a few mutual friends who vouched for him—but that’s all I knew. When asked by friends and family whether this outing was a date, I protested that I was still grieving over the devastating dissolution of a 4.5-year relationship (absolutely true) and was in no state to be dating anyone, much less a near-stranger. As the evening progressed, however, and an innocuous meal turned into an entirely too romantic walk along the river valley (the sun was setting, the atmosphere was intoxicating, we didn’t really have a choice in the matter), I realized, quite abruptly, that this was, indeed, a date.
Faced with the prospect of opening myself to a new person so soon after being mistreated by someone else, I began to panic. I couldn’t possibly be ready for this! I had so many problems! My mental health was at one of its lowest points, and that’s saying something. I was perpetually exhausted, (I had new-job syndrome), and nursing emotional wounds that are still healing themselves one year later. My moods were unpredictable. My emotional landscape felt jagged and chaotic. Most days, it seemed as though I was being held together by threads so frayed and fragile they’d snap at the slightest provocation. I was an undeniable mess—not an appealing or interesting mess, the way a million colours scribbled on a page can be beautiful in their own nonsensical way. No, I was more like the mess you shove hastily into your closet when company comes knocking—the kind you pretend doesn’t exist and continually refuse to sort out because it’s too frightening. If you opened that closet door, you just know everything would come tumbling out.
That, dear reader, was the version of me trying to decide whether I was prepared to pursue a new relationship.
Certain that I had stumbled into a misunderstanding and determined to set the record straight, I did what any sensible gal would do on a first date: I sat down on this near-stranger’s couch—and an attractive stranger he was, too—and told him everything that made me undatable.
Yes, that was my first-date strategy: reveal every conceivable shortcoming, cover every awkward topic, explore every taboo, and excavate any past mistakes that would disqualify me as a suitable girlfriend. Lay it all out, get the unpleasantness out of the way, and he’ll balk, right? Surely telling him all about my multiple disabilities, my mental illness, my dubious track record with romantic relationships, my spectacularly poor choices, my insecurities, my unwillingness to ever have children, my overwhelming fear of failure—all of these would definitely scare him off, yes? In the name of honesty, I dredged up everything I could think of off the cuff that would make him retract his interest so I wouldn’t have to deal with big, scary decisions.
In short, I handed him every reason he’d ever need to call it quits before we’d even begun … as one does. (Everyone tries this on the very first date. This is a completely normal approach. I’m not currently laugh-crying as I’m writing this. Nope.)
Those of you who don’t know me very well may think you know where this is going. He was caught off guard, improvised some polite and sympathetic response, and led me gently to his door. When a woman implies, without an ounce of subtlety, that she is a disaster on legs, just thank the universe she’s not wasting your time.
Those of you who do know me, of course, will know that’s not quite how it happened. Instead, he sat quietly and listened while I gave him my spiel. He asked a few respectful questions, provided the odd empathetic comment here and there, and waited patiently until I was finished.
“So…okay…I’m sorry I dumped all this on you, but I really need to know. I need to know if you can handle all my … stuff. Otherwise, there’s just no point. Any guy I’m with has to be okay with my disabled, chronically ill, foolish self.” (For those of you fuming at my excessively self-deprecating portrayal of disability and chronic illness…just hang on. I’m getting to that.)
“Yeah. Of course. I think it’s great that you told me all this now. It’s brave to tell me, and it’s good information to know.”
As it turns out, not only did this remarkable creature have a disability of his own (moderate and mostly invisible), he was happy to explore romance with someone who had a handful of fairly serious problems, as long as I was willing to be honest about them. Exposing everything in one go, on day one, had the opposite effect you might imagine. Far from deterring him, it actually encouraged him to trust me and seemed to make me even more attractive to him. With everything on the table from the get-go—and yes, for those wondering, he did reciprocate by telling me many of his own struggles that night—we went into our tenuous relationship knowing there would be few surprises and no unnecessary anxiety about whether we were putting on a good face for each other.
Naturally, there were some who were horrified by what I’d chosen to do.
“You talked about all that stuff on the first date? Were you actually trying to scare him away?”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even stated they’d like to try it for themselves, perhaps more gracefully than I had, but with the same unflinching sincerity.
“It would be kind of nice,” some said, “not to have to worry about them ‘finding things out.’ The slow reveal, especially with invisible disabilities and mental illness, can be even scarier than just spilling it all out at once.”
There was another latent benefit to depositing my life story into the lap of someone loving and respectful: I was reminded, once again, that my disabilities, illness, and various other attributes don’t make me undatable. They may present significant challenges, but they are not objects of shame, ridicule, or guilt. Choosing to date me even with full knowledge of my broad range of atypical challenges was an act of faith, perhaps, but never of charity. My partner wasn’t doing me a favour by agreeing to “handle” these things. I wasn’t “undatable,” and never have been.
Today, as I celebrate my first anniversary with a partner I have come to respect and adore, I appreciate the many ways in which our story could have veered into much darker territory. He could have been repulsed by what I’d disclosed. He could have promised he could handle it and realized that wasn’t really true. He could have used the sensitive information I gave him to do me harm. Any number of catastrophes could have resulted from the way I handled our first date. Reeling from exhaustion and pain, I wasn’t in the most stable state of mind, and I fully acknowledge that if I’d been in a better place emotionally, I may have handled this quite differently.
All this has taught me that the recipe for a healthy relationship requires trust and forthrightness from the very beginning. Even if you don’t present your prospective partners with bulleted lists of all your issues—and I don’t generally recommend that you do what I did—it’s essential that you feel comfortable around a person you’re planning to date. Romantic relationships place us in vulnerable positions, and if you don’t think your partner could handle how ill you get during migraines, or how much help you need when trying to identify objects you can’t see, you should probably keep looking. In the meantime, remember that while there may be many people out there who aren’t right for you, you deserve to find someone who is.


A Conversation With Keri: How fibromyalgia Changed Her Perspective On Blindness

During my first year of university, I was afflicted with brutal and frequent migraines. Since I already suffered from chronic tension pain, this new development was a devastating blow. I began to experience stroke-like symptoms; I missed classes and struggled to meet deadlines; I shuddered to think what might be wrong; and I refused to reach out.
While I have been able to detect the source of the migraines and manage them well now, I’ve never forgotten how cripplingly disabled I became while under their power. Blindness had always made life challenging, but I’d never been so completely incapassitated by broken eyes. Invisible disability, which so many people fail to understand, taught me a great deal about myself and others. I learned never to underestimate pain, or assume I knew every battle a person might be facing.
Keri suffers from chronic pain–pain that can be far more disabling than any form of blindness, and she’s graciously agreed to share her story with us.

Q: Can you tell us a bit about your life before chronic pain began to affect you?
A: It was nearing the end of September back in 2014, and my life was pretty typical. I was in my second semester of college, I had a great boyfriend, and life was good. I was happier than I had been in a long time, even though I had lost my sister just two months before. I was hopeful about my college studies, and ready for Christmas break like any other typical college student.

Q: When did you first realize something was terribly wrong?
A: It was a Wednesday night, and I was relaxing on my loveseat, and gaming after a typical day of classes. I was happy to be free for a little while from boring things like Experimental Psychology, and to be doing something I love: gaming. Suddenly the calves of both of my legs started hurting. I have a high pain tolerance, but I was almost in tears. I stood up to get a few alieve, thinking it was just some kind of bone pain or some such, but it was no bone pain I had ever had. As soon as I stood, the pain got twice as bad, and if it wasn’t for the loveseat right there, I’m sure I would have ended up on the floor. It was disabling, and the worse pain I had ever experienced. I only made it through that night quite honestly by the grace of God, and my boyfriend staying on the phone with me for a good while, even though I had woken him up. I made it to school the next day, but barely. I could hardly walk, and I felt as if my legs were being torn apart.

Q: What exactly is fibromyalgia?
A: The most common question I get is what is fibromyalgia? The best way to define it in my opinion comes from Mayo Clinic, and they define it as the following.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
There is much research that still needs to be done, and many in the medical community or society in general think it is fake, or something they just tell you when you can’t figure it out. This is the most frustrating part.

Q: Do you feel that your condition affects how you see blindness compared to how you viewed it before?
A: I always felt that blindness was a pain in the ass, and I took the fact for granted that it wasn’t as big of a deal. When the pain started, it really sank into me how blindness isn’t as disabling as it seems. Sure I handled it well, and accepted my blindness, and it has its very frustrating parts. It is a piece of cake compared to pain.

Q: Most of us are already acutely aware of how hard it is to find work when blindness is present. Do you know to what extent your pain will limit your employment opportunities?
A: When people first meet me, or if they don’t know me well they always say things like you are so amazing, or I don’t know how you do it. If and when they find out that I suffer in pain constantly I think that perception may shift.

Q: Does being called inspirational bother you, especially when these terms are applied by people who have never dealt with what you experience every day?
A: Yes it does. I don’t feel that I’m inspiring at all. I have been dealt an unfortunate hand in life, but I make the best of it. I’m just a woman doing what it takes to survive, and make it through. I do the things I want or need to do.

Q: Do you have any advice for others going through chronic pain?
A: My best advice is to have a great support network, because you need it. You need those who can deal with the ups and downs. Find good doctors who listen to you, and who can help you find a pain management plan. Try anything you are comfortable trying, because each case is different. If you are in school be honest with your professors, or if at work, your boss. Sometimes these people can also be a great support network, and help with accommodations. The best advice is take me time, because if you don’t you can never re-centre yourself, and sometimes that really helps with the pain, especially if you are stressed.

Q: Finally, if you could say one thing to nondisabled people who don’t understand you, what would it be?
A: Have respect. You never truly know someone’s problems until you have been in their shoes. Try your best to not pretend like you know what they’ve been through when you haven’t. Be as flexible and accommodating as best you can. We are just normal people, with differences, and we should be treated like human beings.

Believe Me: There Are Worse Things

I’ve often observed that people react to blindness as though it were the worst fate they could possibly imagine. Of course, for some it probably is (though I do wonder how good their imaginations really are). Sympathy (sometimes misplaced, sometimes welcome) abounds for visible disabilities like deafness, blindness, paralysis and so on. What we lack, though, is compassion for those with invisible disabilities–and they may be the ones who need it the most.

I’ve always been blind, and most of the time my life has still been full and happy. But I carry heavier burdens, too—burdens which aren’t easy to see. Among other issues, I suffer from chronic tension pain, migraines, and mental illness. Unless you come upon me walking out of a psychiatrist’s office or holding my head in pain while I throw up on the sidewalk, you won’t know any of this simply by watching me go about my day. Blindness causes me to suffer in highly visible ways; it’s hard to miss it when I trip over a chair or smash headlong into a wall. At job interviews, employers become immediately nervous as they mentally catalogue all the problems they anticipate. They wonder about how I will keep up with the workload. They wonder how I’ll navigate the building safely. They wonder whether my screen reading software will be supported by their current systems.

They don’t wonder how I’ll attend work regularly. They don’t wonder how I’ll find the emotional, mental, and physical energy to make it through the day without collapsing. They don’t wonder who will drive me home when I’m too weak and sick to walk unaided. They don’t think about the leave I might need if my mental state becomes too precarious.

They can’t wonder these things, because I don’t go out of my way to reveal them. Some stand behind the policy of full disclosure: get it all out of the way now so that awkward questions and explanations aren’t needed later. Really, though, If an employer won’t accept me because of a relatively superficial disability—one that can be easily accommodated—how will they feel when I reveal far more debilitating disabilities? Let’s face it: having malfunctioning eyes has nothing on being in excruciating pain, or feeling so low that you want to die.

Sometimes, I fear that people will judge me harshly if I divulge too much about my “other” disabilities. I worry that they’ll think I’m crazy, or whiny, or simply delusional. Will they label me an attention-seeker? I mean, I’m blind plus six other issues? When does it become suspicious-looking? I’ve been blessed with many compassionate people in my life ranging from friends, to coworkers, to instructors. They’ve done their best to let me know that I’m okay, no matter how many things are wrong with me, and that I don’t have to feel guilty about what I can’t control. Conversely, though, I’ve had people become frustrated and offended when I cancel plans due to a sudden migraine (it’s not like I plan them!) or bow out of an engagement because I’m feeling too down to even get out of bed. Each time this happens, my first instinct is to blame myself, even when I know better. It’s easy to convince people that my broken eyes aren’t my fault; it’s harder to convince them that I don’t choose to be depressed, or lie abed all day in pain. Some of them won’t say it outright, but it’s clear as day that they doubt me. I can’t articulate what it’s like to know that it is only my least debilitating disability that people will feel any empathy for. I don’t need help across the street as much as I need a sympathetic ear and maybe a hug.

The pitying sighs get to me after awhile, partly because I don’t need them (I get along fine, thanks) and partly because they are so misguided. I don’t want a pat on the shoulder because my eyes don’t work; they never have and they probably never will. I don’t need them in order to live contentedly. What I do need, though, is energy, will, and strength. My invisible disabilities strip all of that away on a regular basis, leaving me to struggle along in the wake of emotional and physical suffering.

Now, before I go any further, let me make it clear that I’m not saying that blindness doesn’t have its downsides. I’ve done little but write about them for the past few months. I’m also not trying to run a fishing expedition here: I’m not claiming that everyone should begin pitying me for something other than blindness. Ideally, I don’t want any pity at all. But considering the ample sympathy that is heaped upon those with visible disabilities, it would be nice to distribute some of it to those whose pain is less evident but no less unbearable.

No, you won’t be able to tell who is suffering from what unless you make a habit of asking people intrusive questions (and we all know how I feel about those). But if someone comes to you with a clearly visible disability, don’t automatically assume that it is the only battle they’re fighting. For as John Watson so aptly observed, you should always be kind, for “everyone you meet is fighting a hard battle”.

It took a great deal of personal courage to write this post, humble as it is. As I’ve said, I usually take pains to hide these parts of myself, lest I be misjudged or shunned. But as Gregg has taught me, silence is our worst enemy here. If people like me don’t speak up, then no one can understand. You can’t offer compassion for what you don’t know exists. It’s blogs like these which need to be written. It’s conversations like these which need to take place. We need to know that we can be honest. I live for the day when being frank about what I can’t control will not bring me shame or guilt, but relief and a sense of peace.