I can typically come up with the best and wittiest comeback lines, however, they come to me long after the need for them arises. I mean, way long after. Which sucks. I’ll replay a conversation in my head days or even weeks later and man, I can come up with some really good stuff. I just wish I could dish it out when I need it. I would love to be able to have the things that come to me later, roll right off my tongue in the heat of the moment. I’m so jealous of those who have this quality because it would have been amazing to have it myself during this last year. What I would give to go back and redo some of the awkward and bizarre conversations and interactions following the reveal of my diagnosis. Granted, if I were to go back and redo them knowing what I know now, I would more than likely be blogging from Central Prison today. So, maybe a do-over isn’t the best option. But blogging about it definitely is!

My therapist and my neurologist both offered warnings to me during some of our early meetings, after I found out I won the Multiple Sclerosis lottery. They stressed the importance of taking what others said with a grain of salt because people were going to say some stupid and heartless things. I remember thinking to myself, maybe that happens to other people, but I can’t think of one person in my life that could fit that description. I couldn’t imagine anyone that I knew saying something hurtful after hearing I had MS. An incurable and potentially disabling disease. A disease that impacts the brain, spinal cord, and optic nerves. A disease that dishes out unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness, and/or paralysis. Who could possibly make the situation worse by saying something stupid? Apparently, a lot of people.

Put yourself in my shoes. You are newly diagnosed with MS. (Good Lord, shouldn’t that be enough??) You have fought tooth and nail recently to recover from the flare that brought about the diagnosis. Your feet and legs have slowly come back to life, and the pins and needles, and numbness are subsiding. Your fatigue has improved but still lingers, making it almost impossible to stay alert past dinner. Your right hand, your dominant one, is still weak and numb, something that you will soon find out is likely permanent. You are logging as many hours a day as you can to keep on top of your work, ridiculously more than 40 hours per week, to keep anything from falling through the cracks so the evil eye of the company doesn’t fall on you (and let’s be honest, it’s something you have always done when there is work to be done.) You are concerned because word on the street is you are next to be “dealt with” since you didn’t go quietly by your own decision when the company was sold, and management became power-hungry demonic creatures changed. You are still being a mom to teenagers and a wife to a self-employed husband, which brings its own challenges. You are fighting a daily battle with the 3 musketeers – depression, anxiety, and insomnia. Okay, so after typing this and remembering what it was like during this awful and dark time in 2022, maybe it was a good thing that I didn’t have the personality I wished for to react differently. I would definitely be in Central Prison right now rocking the stripes. Exaggeration? You decide.

Stupid #1 – When I began to disclose my diagnosis, there were many reactions I started to see regularly, so, many of them I started to expect. Among those were sadness, pity, fear, and shock. At times, I would also receive the “I know so and so that had MS…” or “My so and so has MS…” and I learned to handle those, but one in particular stands out from the rest. Far, far out. It was when the conversation moved from me having MS to the other person telling me about their friend who had MS back in college. And the night he had a breakdown when trying to self-inject another round of medication for it. And he told this person that he didn’t want to live with the disease any longer. And he wanted to die. That would be easier. And this person told me how awful it was to watch what MS did to their friend. But he ended up dying in a car accident years later. With his twin sibling. Wait, what? How in the hell did my diagnosis lead to that? I can’t even imagine what my face looked like during this conversation. I was freshly diagnosed and trying to wrap my head around everything, and THIS is what someone thought was appropriate to share with me. It still makes me shake my head to this day.

Stupid #2 – There are few things worse than someone NOT going through what you ARE going through, but thinking they know MORE than you. Nothing can properly prepare you for these people and the interactions that take place. I will say, MS is one of those conditions that a lot of people don’t know much about unless they have personal experience with it. It isn’t covered much in the media like other conditions, unless some new celebrity is diagnosed. Then it gets some attention, but it only lasts until the story itself fizzles out, or another celebrity has something way more important, like a nasty divorce or a public meltdown (sarcasm intended here). Regardless, I share this important piece of advice. If you don’t know about something, shut your pie hole. That’s what I wish I had said more often last year. That would have been fun! Especially in one particular case. A recent change to my work schedule had me scared. After 2 years of working remotely, I was told I would now be required to physically be in the office 2-3 times per week (not a company-wide change, just the department I had recently been assigned – more on this bullshit later). I was speaking to someone, and I expressed my frustration and worry about the recent change. Working remotely provided a small ray of hope since my diagnosis, an arrangement that would allow me to continue to do my job in the comfort and security of my home office. Now, that was being taken away. My emotions were all over the place. In all honesty, I was freaking out. I don’t remember every single thing I said during our conversation, but I remember the exact moment it all changed. “What about the days I feel awful? What about my infusions?” The reply was cool and condescending. “Quincy, it’s only one day a month.” I felt like I had been slapped clear across the face. I’ve never had anything so hurtful, so heartless, so mean and so rude spoken directly to me. Let’s cover problem number one – if you want to really piss me off, please use my name when you speak to me. I hate it. Absolutely, without a doubt hate it. It makes the hair on the back of my neck stand up. Problem number two – if you don’t have MS, if you don’t receive monthly infusions, if you don’t feel like absolute shit the week before said infusions, and you don’t feel like absolute shit the week following the infusion, and you don’t worry about the side effects you may have from said infusion every time, one of which is a brain infection that will indeed kill you, then don’t you dare open your dumbass pie hole and tell me it is “only one day a month”. Sure, you are right, MS is just one day per month, the rest of the time I am Mary freakin’ Poppins laughing and singing around the house and flying an umbrella on windy days. Sure, life is perfect and normal except for the 12 days per year I receive an infusion. Recalling this story gets me fired up every time. If I could go back and redo this conversation, knowing what was to come, I would have jumped across that desk like a wild and rabid raccoon and happily accepted the consequences of my actions.

Stupid #3 – It’s hard to have a conversation with someone you don’t know very well. Much harder when you are discussing sensitive topics. Ten times harder when you realize in the course of the conversation that the person is a moron. We’ll make this one short. “I have MS and will need some minor accommodations.” “Yeah, that’s not really going to be fair to everyone else.” Well, my apologies to everyone else not being able to have the luck that I have and getting their own life-changing neurological disorder causing disability and chronic pain. How rude of me for not thinking of everyone else in this situation.

Stupid #4 – Sometimes it is actions, not words that hurt. Nothing beats sharing your diagnosis with someone that you have known for the majority of your adult life, and in the process of sharing how it is affecting your life and that of your family, watching said person get on their phone and check messages. I’m sorry, am I boring you? That’s what I wish I had said at the time. Well, that and kicked said person in the shins.

There is more. So, so much more. But this is where I choose to stop. At least for now. To be honest, these last few months have been a turning point for me. I sleep better. I eat better (probably better than I should according to my pants). I’m able to wrap my head around this MS thing better. I’m happy. Really and truly happy. But it took so much and so long to get here. And writing about last year takes that happiness away. It makes me sad. It makes me angry. It makes me want to purchase a large amount of gasoline and matches. Kidding. But in all honesty, it hurts. That’s why I limit how much time I allow myself to think about it. So, this is where I stop for now.

I was warned that people would say some stupid things. I didn’t expect it, but it happened. And boy, did it happen. What I never expected was some of the worst things I heard, the ones that hurt the most, the ones I just told you about, would come from the mouths of the people I least expected. Those within the company I had been part of for more than 20 years. They came from my HR Manager, my Department Manager, my Senior Manager and the CEO. Management. People that should know better. The sale of the company was hard enough, the change in management made things difficult, I knew things would never be the same, and yes, I was worried about my job, but I never expected my disease to be used against me. And it wasn’t just things that were said. So many things were done. Instead of focusing my energy just on the health battle ahead of me, I had to fight so much more. And I fought as hard as I could. But each time I overcame one obstacle, they literally threw another one at me. They beat me down, little by little, until they ultimately got what they wanted.

Sometimes the people who come across as the smartest, most professional, most faithful, and best at what they do, are the worst of them all. It still makes my stomach turn thinking about how they show one side to the world but live by an entirely different set of standards behind closed doors. When your neurologist, your therapist AND your attorney all use the word “wow” multiple times during conversations, then you know you aren’t the villain in the story.

Now excuse me, I need to head to the gas station.