Posted in Uncategorized

A Letter to My (Much) Younger Self

Dear 1988 Kim:

I know you’re about to begin your first year of college and you’re full of excitement about how many house parties you’re going to attend this year while attempting to maintain your grades – and trust me the answer is “A WHOLE LOT OF THEM”. I know you’ll have an amazing year! I wanted to take a minute to tell you a couple of things about your next 27 years that may help you enjoy life just a little bit more.

  • It’s just a Harley. The guy is a douchebag. In fact, you should push it over the first time you feel you want to.
  • You’re right not to buy the cast iron skillet – it’d be harder to swing.
  • Don’t go to that Christmas party at 123. If you do, leave before 9:45 because the cops are coming.
  • He’s sleeping with your roommate. And to make matters worse – he drinks really shitty beer, even for a poor college kid.
  • Buy three tickets to the Rolling Stones, because he’s asking his dad to go, not you. Better yet, buy two but only give him one.
  • Go ahead and move to Virginia. You don’t get an amazing kid if you don’t. You also won’t get that fantastic tan while living in Wisconsin.
  • Listen to what the NP on the phone is telling you, past the first terrifying sentence. You’re not going to die. It’s not a brain tumor. Promise.
  • Walk away. You’ve had all you can handle, gave it your best, and he’s not going to change. But this time, take the appliances, for fucks sake. It’s not like he’s going to need them.
  • Enjoy the kiss in the rain. You earned it. But don’t get too attached to that bar – they’re closing in a couple of years.
  • Let him go. You’re not ready. Buy a new vibrator instead. You’re always ready for a new one of those!  Spend the money on a high end one.  You won’t be disappointed, even if it costs more than your monthly car payment.
  • When you have a window, move back to Wisconsin, even if you don’t think it’s truly feasible. Sure you’ll miss out on some fun things, but you should just do it.  There’s a lot of bands coming to Summerfest and you’re going to miss them all if you stay in Virginia.
  • Let him go. He doesn’t really love you the way you deserve.
  • You’re not a terrible mother. Sure it’s disturbing to hear your kid tell you about things he hears on a YouTube video, but you make it through that and it’s just preparing you for the fun years of puberty. Be grateful that he’ll talk to you about anything. It’s a gift, even if you don’t really want to know about hentai.
  • Stop looking for answers. You’re not going to find them because you already have them – they’re just not what you were hoping for, much like that time you did the Jaegerbombs before the Jimmy Buffet concert.
  • Speaking of Jaeger – when you are at the movie on that date, don’t ever explain why you laughed when Idris Alba asks Charlie Hunnam if he’d “rather die on the wall or in a Jaeger”. It was a hilarious moment and you should just take that one as a victory, even if they spelled it wrong.
  • Don’t worry so much about your kid. He’s smart and funny with an amazing heart and the capacity to care about everyone around him. Besides, he’s already figured out what you haven’t in 44 years: people who are not kind to you don’t deserve a moment’s thought. Know who you are, love yourself and surround yourself only with people who want to be near you. The rest of the people aren’t going to matter in the long run.
  • Last, but not least, do not change the way you love people. Not everyone gets it. Not everyone loves the way you do. Not everyone will appreciate it. They don’t have to. It’s their loss. Truly.

Love,

2015 Kim

Posted in Life, MS

The Truth About My MS

When someone asks what it’s like for me every day with MS, I have to think of an appropriate answer. I say appropriate, because often times when people ask you something like that, they’re expecting a certain response. I think most are hoping you’ll say, “It’s no big deal. Most days I don’t even realize I have it.” Some want you to go into detail because they truly want to understand. Still others are asking because they have unexplainable things happening to them and are searching for something that they can connect with.

I could tell this person some of the basics and just leave it be. It would be up to him/her to ask for more details if they’re interested. I could go with the common problems – numbness, altered sensations, stiffness and the occasional myoclonic jerk that I can sometimes tell is coming, so I throw up a middle finger at just the right moment and blame my rude behavior on the MS.

I could go the route of highlighting the lowest lows and the worst things I’ve experienced during a flare up – vision loss, constant pain, the sensation of being squeezed so tight that breathing seems like a chore.

But the truth about it, for me, is this:

It’s no big deal. Most days I don’t even realize I have it because all of the weird little things that I feel have become the new normal and I don’t notice them most of the time. They’re an educational experience in and of themselves, and I’ll tell you what I mean.

I’ve learned that touching paper for long periods of time is exceptionally uncomfortable for me (bye bye books, hello Kindle). I’ve learned that certain fabrics are going to feel like sandpaper against my arms and legs, so I don’t wear them. I’ve learned that I really shouldn’t use regular pot holders when baking anything and opt for oven mitts (please see all of the burn scars on my hands if you’re wondering why potholders are bad for someone who really can’t feel much until it’s too late). I told you I didn’t have feelings…

I’ve learned that if I don’t get enough sleep, getting out of bed is going to be painful in the morning. I’ve also learned that it will only take a few stretches and the pain just morphs into that “normal” feeling and I carry on. I’ve learned not to hold a cup of hot coffee for very long if I’m over tired or stressed, because that myoclonic jerk will have me wearing it. I’ve learned that if I misjudge how long I’m holding that cup, that I can’t really feel that hot coffee is all over my hand.

I’ve learned that if I take any of the disease modifying drugs that are available, I feel worse than I do when I take nothing. I’ve learned that neurologists are really only helpful when you’re having a flare up, otherwise it’s a waste of time and money. I’ve learned that if I look down at my feet, I’m going to get an electric shock sensation down my spine and that it’s not scary or life threatening – just weird – and sometimes I do that on purpose, just to make sure I’m still feeling things.

I’ve had vision issues, where everything is fuzzy or I can only see in black and white out of one eye while the other functions fine. Through that I’ve learned to appreciate the small things – the color of the sky on a sunny day, the vibrant yellows of sunflowers and the beautiful pink and purple hues of a sunrise, just to name a few.

I’ve learned that I’m always going to be tired, and that’s ok – because it means I’m still active and participating in life. Moms are supposed to be exhausted. So I’m not going to “conserve my energy” because even if I just sit on my ass all day, I’m still going to experience that fatigue. Therefore, I’m getting up and doing whatever it is I want to. I’ll sit when I need to.

When all of these things first happened, they were each terrifying. An entire compendium of shit I didn’t understand. I wasn’t sure how I’d ever wear shoes or sun dresses or read a book or hold anything fragile in my hands. But as time goes on, it becomes normal. It doesn’t mean it’s right or it’s ok. It just means that you stop noticing those things because if you spend too much time thinking about them, you won’t be able to do all of the things you’ve always done.
Most days, I wake up and think to myself that the doctors were wrong. I don’t have MS and one day they’ll find a different way to explain all of these strange things. Then I’ll look at the MRIs. I’ll take stock of everything that I’ve ever experienced on this journey. I’ll realize the ebb and flow of all of it and I know that there’s really no other explanation for all of it. They’re right, but I don’t have to accept that means I can’t be exactly who I am and do all of the things I want to do.
So I’ll get up every day. I’ll be a mom. I’ll go to work and do a fantastic job. I’ll come home and cook and clean and laugh and live. I’ll do a mud run and obstacle course every May. I’ll do a 5K. I’ll drink beer and eat cheese. I’ll ask people for donations. I’ll put together a brewery crawl to help in my efforts to raise money and awareness of something that I try to ignore in my daily life. I’ll watch the Packers and Marvel movies and cheesy TV when I feel like it. I’ll listen to 70s and 80s music and sing along, often loudly. I’ll fly to Wisconsin every September and I’ll walk that 50 miles, JUST BECAUSE I CAN. I’ll love fiercely and wholly and I won’t make apologies for that.

In between it all, I’ll find time to laugh and smile and be inappropriate. I’ll appreciate when people want to be around me and respect when they don’t. I’ll be grateful for my friends and family. I won’t have regrets about not doing something the right way, or losing, or failing, because I’ll know I tried. I’m still trying. I refuse to give up because I think once you exchange the last vestiges of a happy life for something more dark and sinister, then you’re really admitting defeat, and let’s face it – I’m a really poor loser.