Guide For The Newly Diagnosed: Pay No Attention To The Man Behind The Curtain

And that man is usually a member of the general public spouting tired cliches mostly found on Facebook posts with cute kittens. You know, the kind of sh*t you see and think, "that is true... Ha ha! My ex slipped on the ice and broke his fat ass! That's the most uplifting post I have ever seen on here!" You are going to hear a criminal amount of stupid crap, useless platitudes and general bad advice. Refer to the good advice in the title of this post. Depending on the source and my mood I have different ways of handling these sages.

The Slow Blink

Some one just told you, "None of us knows what tomorrow brings!" and goes skipping off to take a jog before they make dinner for their family. You are dealing with an attack that has you staggering like a drunk and barely able to stay awake until dinner. Their words are hanging in the air... waiting for a reply... wipe your face of all emotion... now... b...l...i...n...k. It's true, none of us do know, but to say something like that when the odds for your tomorrow are sooooo much better than my tomorrow is really a poor choice of an empty platitude. On the way out of the store grab some cheesy quotes book so you will be better prepared next time, or can at least hit me with something I don't hear as much. I really like Benjamin Franklin or Winston Churchill is good too.

The Lost My Patience

I'm actually a pretty patient person, so when I do lose my patience, you pushed me pretty good. Grocery shopping a bit ago, a woman was using a motorized cart. I could not possibly care any less if someone is using a cart, wheelchair, cane, iditarod dogs, etc. She and her husband came up behind me while I was pondering which spaghetti sauce was truly as delicious as it claimed to be, when he loudly said, "EXCUSE US! She's in a cart!" I no longer cared about spaghetti sauce. I told him, "I don't care if she's in a cart! I have to use them sometimes too because I have Multiple Sclerosis!" I think I may have dropped the F bomb in there too because that kind of attitude really pisses me off. I wasn't blocking the aisle; it was earlier in the morning so it wasn't busy; and why should anyone roll out the red carpet for you because you are in a cart? I had my cane in my shopping cart and no one was walking in front of me loudly informing people of it. "Here she comes! She has a cane! Mush, you little peons! And some one grab her some spaghetti sauce because in all that brouhaha she forgot to grab some! There she goes! She has a cane!" 

The F*ck Stick

This is for when you have really, really pissed me off. You know that old adage "beware a patient man's anger," well I am that patient man. My mom HATES the F word. She hates it to the point that if you use it it has to be in the most extreme situations, and even then... Talking to her on the phone I slammed my finger in the door and took a big chunk off my finger, blood all over, and I said f*ck. My mom was more concerned about my language than my finger. My mother is what inspired this last one, and inspired it is! She really got me livid one day. I haven't been that furious in a long time; I was so angry I told her I wanted to beat her over the head with the word F*CK. I didn't necessarily want to kill her, so I wanted to get a foam stick and carve the word F*CK (I would censor it for the kids' if they saw it) into it to beat her with. For non-human uses I want to get a punching bag to hang in my garage and go out there and beat it with my f*ck stick when I get really mad. I have an old cane with F*CK written on it and there really are not words for the release I get from beating on an old pile of rugs in my basement when I feel the need. 

I know -- or at least I think -- people mean well, but sometimes I wish they would mean well somewhere far away from me. 

Guide For The Newly Diagnosed: The Answer

This is an idea that I have been mulling over for awhile now. Next month will be my 9 year anniversary (cue the circus music) of being diagnosed and I have learned an obscene amount about MS since then. A truly tantalizing ton from tomes, and a lewdly large lump of life lessons. Think of how many little nuggets that we have learned the all too often (very) hard way, and think of how many things we would have liked someone to tell us when we were newly diagnosed. So, because where I am at in my disease course is a total snoregasm (from Bob's Burgers, I wish I'd made that word up!), I'm going to share some things that I have learned during this long strange trip. 

THE ANSWER

My diagnosis came out of the blue. I fell down some icy steps, left leg went numb, double vision in left eye, go see doctor, usual tests, and within a matter of 2-3 days was told I had MS. My life was like a puzzle that I was orderly putting together, the way I wanted, the way I had planned. MS took that puzzle and threw all the pieces in the air, it even mixed a few other puzzles in with my original puzzle for extra wackiness. I was so shocked, lost, scattered, scared, confused, overwhelmed, every word that you can think of like that, I was, as I'm sure most of us are in the beginning. I went to the MS walks and support groups, I talked to as many people with MS as possible trying to find out how they were okay with having MS and I was a mess. I wanted to know their secret. I wanted to know why they cared more about what casseroles people had brought than the fact that they had MS and they are only going to become more disabled (I hesitated writing that. I don't want to scare anyone; after 9 years I just started using a cane full time.). I wanted to know the answer. And here it is. The answer is Time. That's it. On those days when everything is just too much, wipe everything off of your to do list and put on it "breathe in and out." That is what you are going to do, providing you don't have to take care of others. Sometimes I would just sit, stare out the window and breathe in and out, that was my task for the day because I was too overwhelmed to take on anything more. 

In time you will start to care more about what casseroles were brought as you come to terms with having MS. At first I used to wear my MS shirts all the time so people knew what was wrong with me, now I never wear them. Why give away the answer when it's so much more fun to let them wonder? I even tell them when they ask that the answer is not as interesting as what they are imagining, because it's not. And, something I truly never thought would happen, I have even been able to put together a few parts of those puzzles that MS scattered. It has not been easy, sweet Mother of God it has not been easy, and The Answer is not an overnight cure, so it needs to be taken with 2 heaping tablespoonfuls of patience and I have been out of that since birth. While I'm waiting I'm going to go see what casseroles everyone brought.  I hope one is that jello one with the pretzels and whip cream, I freaking LOVE that stuff!