Ice Cold Burns

It takes my breath away like 
The ice cold wind chill at 6 am on a Tuesday
It hits me like
Someone slamming on the brakes in front of my car last week
It comes in waves like
the salt water on the Oregon coast
Grief and I have known each other for a long time...
Words don't exist to describe it
The way it feels is impossible to imagine
Its grip is stronger than weight
Stickier than glue

I read her old Facebook posts and emails
...try to grasp onto who she was
Before everything in her brain forgot
Where it was supposed to be ... what it was supposed to do
I stare at her name in my contacts
Wishing I could call // wishing she would answer
I try to imagine the way her voice would sound if
I could tell her how far I've come since fifteen
Missing her so much my heart burns like it's on fire
Smoldering like a bright orange ember

I'm still so angry at the tumor
in her brain that wouldn't let her be my mom
I'm still so angry at the medications
that stole her personality and replaced it with
somebody else
The medications that broke my heart

I remember walking out of the church that day
I remember crying so hard I couldn't breathe
I clung to my sister as
Everyone who came to celebrate her life
realized a funeral is not a celebration at all
I wonder if they can remember the way it felt
I wonder if it hurt for them to breathe
the way it did for me

On August 12 I wasn't even surprised
I had known for a long time
What was going to happen
What I was about to lose
So why is it that six years later
It takes my breath away like 
The ice cold wind chill at 6 am on a Tuesday

"Try a day with no negative words." -Sarah Jane, September 8, 2009 

36,500

I don't talk about MS very much because I'd rather pretend it doesn't exist. I'd like to pretend I don't have it because there are people who have it much worse than I do. I know what it's like to lose someone I love more than anything to a crippling disease--and my disease isn't crippling for me. It's crippling for some people and I'm very lucky I'm not one of those people at this point in my life. But no matter how much I want to pretend it doesn't exist, it's not just going to go away.

When I began this journey, I started taking Copaxone. It's a drug in the form of injections. Its job is to slow down the progression of multiple sclerosis. Ideally, it would lengthen the amount of time between the attacks on my brain (or make them stop altogether). I gave myself the injections every other day for months and had another MRI which showed us the Copaxone was not effective for me. It was scary to hear but I was not a fan of giving myself shots 3-4 times a week, especially considering my dislike for needles. So, we went over our options and I started taking Tecfidera. This is medication in the form of pills. I take one pill twice a day. While I was super happy to be taking pill instead of doing injections, I have really odd reactions to the pills (which are apparently common). Basically, it feels like (and looks like) I have a terrible sunburn, I feel very heavy and tired, and I pretty much have to sit or lie down. I'm not sure why it happens, and obviously it's not the end of the world, but wow, it's frustrating to plan around.

The worst part about the medication are the risks that are associated with it. By taking the medication, I put myself at risk of getting PML--or progressive multifocal leukoencephalopathy. PML is diagnosed after the JC virus is reactivated in the brain due to a medication which suppresses the immune system (like mine). JC virus is present in the brains of many, many people but exists dormant in most. Because of this risk, I have to get bloodwork every 3 months as long as I'm on Tecfidera. As long as my bloodcounts stay in a normal range, I'm not at risk for developing PML.

Risk #2. Women cannot continue taking Tecfidera through pregnancy. This means if I decided to have children someday, I would have to stop treatment and risk relapse. To continue taking Tecfidera would be an incredible risk and decreases the chance of having a healthy baby significantly. My doctor pretty much made me promise that I wouldn't get pregnant while taking the medication, and while I'm definitely not planning on getting pregnant any time soon, it's something I fear as I think about my future.

2 pills x 365 days = 730 pills a year x 50 years = 36,500 pills over the next 50 years if I continued this medication. Isn't that crazy? The cost of the medication is even more insane. If I were not insured, the cost of Tecfidera would be $2,750,000 over the next 50 years.

I don't understand why I was given this challenge, but maybe I will someday. I can say that everything I've gone through in my life so far has had a purpose--I would not be nearly as strong as I am without all of it. Perhaps God's plan for me is to help others like me, and as I grow to understand this disease, I hope I'm getting closer to being able to do that.

Things I Wanted to Say But Didn't: A Mother's Day Post

Hi there! You know me. I'm your friend, your family member, your acquaintance, or someone you're just friends with on Facebook because you wanted to creep on my pictures. This post is for you. I'm about to vent about all the things that I've wanted to say to you, not to make you feel bad, but to explain my feelings and help you understand them.

1. To the person who complained about his/her mom, hoping for advice:

Here's what I can tell you. Once you said a single negative thing about your mother, I tuned out. I bit my lip and hoped I wouldn't blurt out what I was thinking. I would do ANYTHING to have my mom back. I would do ANYTHING to go back and reverse all of our fights, all of the times I went to bed without saying goodnight, and all of the times I slammed my door hoping it would hurt her feelings. Before you complain about your mom, picture your life without her. Imagine what it would be like if she weren't there at all. Rethink the issue. Call her back. Apologize, tell her you love her, and appreciate her for everything she does. You may have gotten in a fight but imagine never being able to talk to her again. Pray to God that night and thank Him for blessing you with a mother who loves you enough to argue because she cares SO MUCH.

2. To the person who posted, "If only I could just go home and cry to my mom..." (or something to that nature):

I get it. It sucks going to college and being away from your mom. She rocks. She does a lot for you and she's always there for you. Here's the thing though: she's a phone call away at all times. I want to reply to your post and tell you how much I long to call my mom just to hear her voice. I want to tell you how many times I've tried to delete her phone number. If you really wanted to, you could drive home and hug your mom and cry in her lap all night. Wow...what I would give to have that luxury. Here's what I want you to do: call your mom. Don't complain about your boyfriend or your classes or your lack of funds. Tell her how much you love her; how much you appreciate her and everything she does. Ask her about her day...do you remember the last time you did that? I get that you miss her and that tweet was so #relatable, but consider how lucky you are to have her in your life and pick up the phone.

3. To the person who asked, on Mother's Day, "Hey, how are you doing?"

Well, actually this is one of the worst days of the year so I'm pretty awful. But I can't tell you that because to explain how I'm feeling and why would absolutely drain you. To be honest, I'm probably laying in my bed curled in a ball wishing I could get my mom a Mother's Day gift aside from the $20 flowers I set at her grave that will die in a week. I'm hurting because every time I post about my mom, I do it because it's all I can do. It's the only way I can celebrate her and feel that others are celebrating her too. So to answer your question: I'm filled with sadness today, but there's really not much you can do about it. I appreciate the gesture, but if my response is lacking, you know why.

4. To the person who is wondering why I haven't been talkative today, why I've been snappy today, why I seem grumpy or stressed:

I miss my mom. I miss her so much that it feels like my heart is being torn out of my chest sometimes. I'm a master of disguise and you've probably never (or rarely) seen me break down because I've gotten really good at hiding it when I feel like I'm about to lose it. I'm good at leaving the room at just the right moment, hiding the redness and puffiness after a short cry, and pasting a smile on my face when I don't want to ruin everyone's time. I know that sometimes it probably seems like I'm absent, and that's probably because I am. I'm good at hiding it but it can be seriously exhausting. If I take it out on you, I sincerely apologize. I'm not myself and it's not your fault. On the other hand, the drop of a pin can make me cry some days. These are usually the days that I SHOULD stay home and take a personal day, but unfortunately college classes don't allow me to do that. Not many people see me cry, but if you're one of them...thanks for not staring at me like I'm a crazy woman.

5. To the person who I just can't empathize with:

I'm sorry. I really wish I could comfort you and understand why you're so upset over something as small as a guy who treats you like crap or a C in your math class, but I honestly can't. It's not your fault and I understand that this problem is hurting you terribly. I get that in your view, you are incredibly unlucky and your life couldn't get any worse, but to be honest...it totally could. I don't mean to be selfish here, I'm just being truthful. After experiencing a traumatic loss, other problems seem so small. My mother died way before any of us were ready to lose her. I was FIFTEEN. She will not see me graduate, she won't see me get married, she doesn't get to meet my boyfriend, I can't call her, I can't see her; there's a HUGE hole where she once was. Truly, I am sorry if my advice or response seems harsh, but your problem will pass and you will move on. There are bigger problems in the world. As Kourtney Kardashian once exclaimed to her sister, "Kim, (there are) people (that) are dying." BE THANKFUL FOR WHAT YOU HAVE!

6. To my aunts, my sisters, my friends’ moms, my coworkers, and everyone else who has stepped in when I needed a mom:

Thank you. Thank you for stepping in when I needed a mom. Thank you for being there for me as I planned my wedding, as I made hard decisions, and as I feared what was next for me. My future children will not get to meet their grandma. I will teach them about her and they will know the person she was, but they won’t get to see her smile face-to-face. However— my children will get to meet all of you. They will hear all of the things you have done for me. They will also know that their grandma played a big part in you coming into my life when I needed you most— whether we knew it or not.  Thank you.

7. To the mothers who are missing a child they carried, held, or never got the chance to meet:

You ARE a mother. You deserve to be celebrated in every way. I cannot fathom what this day is like for you. I know you miss your baby every single day and to see all of the posts is incredibly hard. I have never experienced the loss you have, so I can’t tell you that I know what you’re going through, but my heart breaks for you just the same. You ARE a mother and I truly believe you will meet again someday. I am thinking of you and sending you love on this day and all of the other days.

8. To the hundreds of people who will share Mother's Day posts:

I'm so happy that you're celebrating your mom. She deserves it and so much more, but when you post that "Happy Mother's Day Mom! I love you and I'm so thankful for you!" status and picture, think about it first. Are you showing her how thankful you are for her every day? Are you posting it just because everyone else is, or are you posting it because you genuinely want your mom to know how much you love her? Are you spending the day with her (or if you can't, did you give her a call)? I would give anything to spend the holiday with my mom face-to-face. What if this is the last Mother's Day you get to celebrate her?


Gosh, I loved my mom so much and I know that I didn't show her even half as much appreciation as I could have in our time together. PLEASE make every day with your parents count. I may be biased but I can tell you there is absolutely nothing worse than losing a mother, especially at 15. Use all of the time you have left with her to value everything she's done. 

For God's sake...the woman probably spent hours and hours in labor for you. She deserves endless hugs and love for that alone.

A Letter

To the greatest guy I've ever known--

Hi. There are so many things that I need to say to you and thank you for but I never know how. I'm usually pretty good at expressing myself through these blog things so I decided I'd try that.

You are my favorite person. You make me laugh, you laugh at my sarcasm, you love my dog. These are just surface level things you do that make me smile and remind me how lucky I am. But what I don't thank you for enough is so much more than that.

I'm not sure you knew how much baggage I was going to be carrying around with me when you asked me to be your girlfriend. I think I was probably trying to hide it because I wanted you to like me (I REALLY liked you). I acted like small things didn't bother me. I pretended I was a girl who lost her mom but wasn't really bothered by it anymore because it happened five years ago.

I remember one night I sent you a picture of myself as a kid and I had just gotten my first pair of glasses. I think we had JUST started dating and we had been talking about how practically blind I am and the fact that I've had glasses since 1st grade. But the thing is--you didn't comment on my glasses at all. My mom was in the picture too and you said "Wow, you look exactly like her." And to you, it probably seemed like nothing, but to me it was so much more than that. I cried because as many times as I'd heard that I looked like her, it felt like maybe she was there in that moment. I can't explain the feeling, but it was there.

Okay, months later. You came home with me for the weekend and I felt like I needed to visit my mom's grave. I wasn't sure if you'd want to come with me but you did and you made me feel like I wasn't alone, going to a place where I typically feel pretty alone. We walked up to her grave and you stood beside me while I put flowers beside her grave and spent a few minutes talking to her in my head. When I was ready to go, I said "Okay." I started walking away and realized you weren't following me. You were kneeling by my mom's grave. You were telling her how much I meant to you and how sorry you were that you never got to meet her. Seriously, Brett, you have no idea. I'm barely holding it together writing this. I never told you how much that meant to be. No one had ever done that before and the best part is that I know she heard you.

When I'm upset, you listen to me. You let me cry and you hug me and I can tell that you feel the things that are hurting me. You tell me exactly what I need to hear. When I'm overreacting and being a brat, you act like I'm being completely rational. You check my oil and change my windshield washer fluid, you get water for me when I need to take my meds, you worry when I don't get enough sleep. You listen to me complain about school and every other tiny problem in my life that I feel like venting about, and by the end of the conversation, I feel like everything is going to be okay. You hug my grandma and talk about sports with my dad. My dog likes you more than he likes me.

You drive me nuts sometimes but I wouldn't trade my time with you for anything in the world. You are my best friend and I can't begin to tell you how much it means to me to be loved by you. Every day I thank my angel in Heaven for sending me such an incredible blessing. I think she knew how much I needed you.

SO MUCH love,

Hannah