I wrote this for a newly dx friend, Stacey. I hope it will bring her peace and hope.
Some extremely wise advice was given to me once, after I was diagnosed with MS:
Know your body. Know what every test is. Know what all the numbers mean. Know what every code stands for. Know it all. You're going to have this for your entire life, so it's your job to know what it is.
So for the past three years, I've been learning everything. And not just my things, my friend's things as well. What's normal, what's not. What's me, what's them. What's progression and what's a bad day. What's a flair and well, what's a full on relapse. It's true what they say- knowledge is power. When you know enough about something, the scare is taken right out of it. It's like...turning the light on.
When I was a kid, I was terrified of fire. My aunt and uncle watched this terrifying movie in front of me, and the one lady hated the other for whatever reason, so she burnt down her house. My uncle has been known for the gore he enjoys watching. I was too young. Maybe 4? But until that point, fire was completely off the radar. Now I was consumed with it. My parents did what they could- we made a "if it happened to us, here's what we'd do," plan. Complete with the trial run. I was terrified.
At night, I would dream of giant fire balls engulfing my home. My mom would wake up with a sleeping child by her bed- another nightmare. For years and years, this was my only fear...until it happened. My house burnt in 1993- it was spontaneous combustion. I was in the basement and my mom heard someone screaming upstairs. I remember the TV flickering and the lights flickering, but none of our smoke detectors went off. Mom called down the stairs for me to come up, and she was trying to call 911 (from within the house, yeah.) I remember lots and lots of smoke, and it was in that millisecond I realized; THIS was my worst fear coming true.
I screamed for my mom to come out with me. GET OUT! GET OUT! But she wouldn't. I ran out of the house and down to the neighbors. I had no shoes. I had the outfit on my back. People from all over the community came- farmers mostly- with their tractors and flat bed trailers. As the fire fighters saved what they could, the farmers loaded up our possessions on their hay beds and took everything to a local empty chicken house.
My mother, of course, was treated for smoke inhalation. My dad came home from work (no cell phones in 1993) and they wouldn't let him down our road. He ended up driving through fields and running past fire police until he found us. A local woman I hadn't met until that day held me through most of the fire. The neighbors gave me (too small) shoes. We spent time running boxes up from my neighbor's garage to the people awaiting our filthy stuff to haul it away. By the time all the action was over and the last cinders were out, it was late, it was dark, and we were exhausted.
When I was diagnosed with MS, it was like experiencing the exact same thing. MS was off my radar. Old people get that, right? Oh gosh, I didn't even know how to SAY it right. Scerosis? Huh? But immediately you're taken with it. It's all you can think about. Your ear twitches- is that MS? You cough TWICE in a row- oh MS for sure. You start twitching...could it be? And you start living life as a person with a special need. With a disease. Once it has happened, there's NO pretending it didn't. You can no longer live life as a healthy member of society. You've been handed the flag, and now you must march under it.
I remember after the fire, wondering who I was allowed to tell. I went back to my elementary school in the fall and people whispered about me. My teachers all looked at me with sad eyes. I had to go to counseling. When we did fire drills, I was sent to the Principal's office so I wouldn't freak out. (Had I ever freaked out? Precaution, I guess.)
When I was diagnosed with MS, I didn't want anyone to know. I called my grandma to tell her, because I didn't want her to tell anyone, and she cried. Great. I made my grandma cry. My mom called everyone she knew I SWEAR. My uncle came to me at a family gathering, "Elizabeth. I've heard about your situation and want to offer my condolences." Really? Condolences? My inlaws called me crying and sobbing. Everyone says, "I'm sorry." For what? Stop saying that. You're not "Sorry." You'd be sorry if it was you. It's not you. It's me. Don't try to make yourself a part of my story, because you're not. This is about me. This is about my body and my health. Don't try to use your sympathy to butt your way into my issues.
And you also feel like you're the mourner and the caretaker. Because NOBODY knows what to do with you. You try to keep a happy upper lip for your spouse and your parents and, like, your kid. "Yeah, the steroids don't really hurt all that much!" Then you get all those, "I don't know HOW you can be so strong..." well meaning folk. "You are such an inspiration to me, with being a mother AND having MS." Like you can't do one OR the other, you're obligated to do both. All these people mean well but. Eh. You don't need a medal. You need a nap.
That's when you know it's not going to be the same. Life as you know it will never EVER be the same, and somehow, someway, you're going to have to find normal again. You're going to have to find Home Base again, and just plant your flag and stand in solidarity. You have to quietly make it through day to day until THIS becomes the new you. It's a matter of sitting still and doing some soul searching. It's a matter of FORCING yourself not to speak, but rather just listen and behold what others have to say.
So you get to a point in life where your diagnosis is three years in waiting, and you're expecting your second child and your marriage is really really good and you can't imagine life any other way. And you find yourself saying of other, "Oh, you have MS? It's not that bad, really. Here's how I deal." And then, you do.