Category Archives: Open Letter

An Open Letter To Chronic Illness

We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.

I resented you when you first showed up. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships, and my body.

But…

BUT.

Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.

I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.

But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about, now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.

Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.

In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.

Keep on living, I guess.

Giving Myself Permission

My friend Echo has been writing these posts, “Hey, It’s Okay…” and they’re pretty awesome. I love how she puts herself out there, while simultaneously giving herself the permission to just be her, however she may be feeling in that moment.

I’ve toyed with doing a post of my own, but it hasn’t really felt right. Until today. Today, when my heart is heavy with words I can’t share here, and feelings that are too much.

So with a gentle nudge from one of my newest and most wonderful friends…

HeyItsOk

If I can’t help my mother the way she wants.

If I need to put my health (both physical AND mental) above the needs of those around me.

If the tears flow at the drop of a hat. Sometimes you just need a really good cry. Or ten.

To stick up for myself.

To be sad and angry at this disease, as long as I acknowledge those feelings instead of bottling them up.

If I want to take a day off and curl up with a Parenthood on Netflix marathon instead of facing responsibilities.

To ask for help.

To admit I can’t do something.

To take my own advice, and take care of me.

We Are Love

Scotty-

Five years ago you took me on a picnic for our first date and forever changed my life. Next year we will stand before our loved ones and say aloud the promises we’ve already made to each other. Each year on our anniversary, I write a letter to you or share our story. This year, I didn’t know what else could be said that I hadn’t already written. And then, this came to me…

Us

We are date nights at Denny’s, sipping hot cocoa and playing cards. We are drives around this city while we shared all there was to know about each other. We are popcorn and M&M’s, movie nights, board games, and take-out Chinese food.

Ian

You are passion and humbleness, and I am your biggest fan.

We are five years of the highest highs and the lowest lows. We are overcoming any obstacle. We are “you do for family” and redefining who our family is. We are celebrating any achievement, because they all matter. We are advocates for your dad and I am the daughter-in-law he loves, even if I did beat him at Scrabble on Father’s Day once.

We are late nights in the hospital, with you always holding my hand. You are the hard worker who makes sure I’m taken care of, no matter the cost. We are battling chronic illness together, continuing to live this life to the fullest.

Ring

You are the man who proposed to me three times, with three different rings, each of them as precious to me as our love.

You are the man who loves my son as if he were your own, and my heart swells to see you two together.

Family(framed)

We are the parents of a teenager, both terrified and excited. We are talks of school and grades, and debating whether he’s ready for his own cell phone. We are a family of our own, the three of us and our doggy.

We are the sum of every moment of these five years, and yet so much more. We are the promise of a future together, the promise that we’ll always have a partner in this life.

UsWedding

You are the man I’ve dreamed of all my life, my prince, the one I thought couldn’t possibly exist until you came and rescued me. You are the one who showed me who I could be, who saw the beauty inside me when no one else did.

We will be the cute little old couple helping each other along in the nursing home. I will try to not run over your toes with my wheelchair as you repeat yourself for the tenth time because I’ve gone completely deaf. We will be playing Scrabble with our grandkids while we tell them how Grandma is a Ducks fan and Grandpa is a Beavers fan and it’s the only thing we’ve ever disagreed on in our entire lives together. Well that, and the fact that Grandma doesn’t like pumpkin or avocado.

HouseDivided

You and your love gives me hope EVERY. SINGLE. DAY. The promise of our future gives me a reason to keep fighting.

Here’s to another five years, my love, and many more after that. Here’s to making more memories and traditions. Here’s to a lifetime of love.

Hello Mother, I Need You To Hear Me

I need to say these things to you, and I need you to really HEAR me.

My health is important. It’s important to me, it’s important to Scotty, and I would hope it would be important to my parents. Your actions recently clearly state otherwise.

I don’t know if it’s because it’s hard for you to see your daughter sick, or if you honestly believe it’s some sad bid for attention. Whatever the reason behind your behavior, it’s unacceptable. I AM SICK. This is not up for debate.

I didn’t choose this, I certainly didn’t make it up, and it’s not just going to go away.

The medications I’m taking aren’t easy. They’re not easy on my body, and the decision to choose them as treatment doesn’t come easy. Ultimately I have to decide if I want to reduce my symptoms now and risk possibly shortening my life span or contracting another (often worse) illness, OR do I live without medication and spend my life confined to bed. I choose to risk the medication, because I want to live the best life I possibly can, for as long as I can. Maybe you’d make a different decision. Hopefully we never have to find out.

I know we’ve talked about this before, but for whatever reason, you still can’t seem to be the parents I need you to be. When you were diagnosed with cancer, my sisters and I were worried about you. I never questioned you, your diagnosis, or your treatment. I took care of you, helped in the best ways I knew how, and tried my best to support you. Is it wrong for me to expect the same from you?

I could sit here and explain the science behind my illness, but it really doesn’t matter. It shouldn’t matter. I am sick. It is a lifelong illness. To date, there is no cure. I’m trying my hardest to live the very best life I can. If you can’t be a part of my treatment plan by being supportive and encouraging, then I must distance myself. The stress and anxiety over this strain in our relationship is not healthy for me. Your phone calls during my treatment yesterday caused my vital signs to freak out, and the nurse and doctor both had to calm me down.

That is completely unacceptable.

So this is me setting a boundary and trying to take care of myself. If I don’t answer your calls, you’ll know why. I can’t let your negativity and nonchalant dismissal of me and my illness continue to affect my well being. It breaks my heart to know I can’t count on my own mother for support while I battle the biggest fight of my life. I can only hope and pray my own son never has cause to feel this way about me…

Six Years

Today is your birthday.

Six years ago today, you were at a BBQ, celebrating, acting as though you’d made the turn and were finally seeing the light in life again. Six years ago today, you looked happy in all the photos that were taken.

Those pictures are the last we have of you. Whatever joy you may have found in that day was later sapped away and the grip of depression retained its wicked hold on you. In a matter of weeks, DAYS, we found ourselves staring at those photos with tears streaming down our faces.

Many times over these last years, I’ve asked myself why? How could you? What was the final straw that broke your back? I’ve alternated between anger that you would leave me to find you like that and hurt that you didn’t reach out to me. I WAS IN THE VERY NEXT ROOM.

Through my own battles with depression, I know you couldn’t see far enough out of the pit to see how much we all loved you, how much we would miss you. I know if you had thought of me finding you that morning, you would never have made that fatal decision. You would never have intentionally hurt me like that.

But even knowing that, I’m still hurt. I’m still angry. And I harbor a deep, cutting hatred for HER. Depression’s lies and taunts hurt badly enough without having them repeated back to you by the one person who is supposed to love you the most. I can never forgive her for pushing you further that night.

You’ve missed a lot in these last six years. More babies have been born, we have more nieces and nephews for you to love on. My own son has grown so much! He may one day rival you for height. We’ve all moved, had relationships come together and fall apart. Our parents have bought a new home and gotten new dogs. Your dad is going to pin Chief this year. And I’m going to be married next year.

You’ve left a void, Ty, that can’t be filled. There’s a darkness in your dad’s eyes, an emptiness in my mother’s soul. Our sisters miss your camaraderie, my son misses his favorite uncle. I miss my brother, my friend.

You’d be 30 today. We’d probably have another BBQ, they were your favorite. There would be water fights maybe, definitely more photos. We’d have tons of great food, maybe you and I would swap a few new recipes. You and my fiance could talk music, Kim would make you one of her famous cakes, you and Stepf would maybe plan some kind of special thing for your dad’s pinning ceremony.

Most of all, you’d be here. And you’d be smiling.

**If you or someone you know is struggling with depression, please know that help is available. 1-800-273-TALK is a 24 hour hotline. Please call. Please reach out. Suicide is NEVER the answer.

My Hope Was Renewed By You

Sometimes it’s easy to lose sight of it all.

On the days when the pain is more intense, when the fatigue has cloaked me in its quicksand, when anxiety and depression are feeding me their lies, it’s very easy to wonder why I keep fighting.

I’ve struggled this week. While there have been a few good moments, ultimately I’ve been hurting, weak, and exhausted. The little nagging voices have been trying their hardest to convince me that it’s not worth it. That getting up each day and popping the laptop open is just a futile attempt to pretend like I’m actually doing something. That even the triggers from sharing my story weren’t worth it. Really, what good did it do?

Then as I got ready for bed last night, I checked my email. And my hope was renewed.

There, buried among the junk emails, was a note from a survivor, someone who had stumbled upon my post. She reached out to me to tell me her story and that I had helped her. As I read her words, my heart ached for her pain. Tears streamed down my face and I once again railed at the injustices in this world.

She finished by saying, “I wanted to say thank you and it’s kind that you give out your email so that people like me can write out things like this to someone who understands. So thank you.”

My heart clutched in my chest and I was washed over with such a feeling of grace. THIS. This is why I do what I do. Why I get up even on the painful days. Why I work so hard to spread love and hope. Why I relive the trauma every year as I share my story.

Because to know I’ve helped ONE PERSON makes it all worth it. Because no one should ever feel alone in this world. Because two survivors helped to give me the strength to take back my power and rise above the shame and stigma attached to sexual assault victims. Because THIS is how I repay their kindness and faith in me.

So to Someone Who Refuses To Make This Event Ruin Me-

Thank you for reminding me of my purpose in this world. Thank you for trusting me with your story. Thank you for being brave and strong. You are indeed not alone.

Open Letter To Doctor T

When I saw you the other night in the ER, I was in no condition to stand up for myself. I was in extreme pain, exhausted, and lightheaded with it all. So when you dismissed me after five hours of waiting without any care or relief, I simply gathered my belongings and went home in tears. This is what I should have said…

I think you took one look at my chart and made a judgment. You saw that this was my fourth Emergency Room visit in a matter of three weeks and you concluded that there was nothing you could do for me. You saw the levels of pain medication I had been given before and decided that I must be looking for more.

What you didn’t see is that I have Rheumatoid Arthritis and I live every day of my life in pain. Sure, some days are better than others, but pain has become my constant companion. So when I made all four of those treks to your ER, it was because I was pushed past the point of what I could tolerate. Yes, I am prescribed a high level narcotic for pain management, but that should be a red flag to you. If I tell you that it’s not helping my pain, that means my pain has reached astronomical levels for me. Because most days, that pain pill works just fine and I work very hard to use it sparingly. I am cautious of developing a tolerance or an addiction.

What I didn’t get a chance to tell you is that I was in your ER that night because I was following doctor orders. My discharge paperwork said to come back immediately if the pain worsened or changed. It did both, as well as my developing new symptoms. However you failed to acknowledge any of that.

I can’t really fault you. I know you have procedures to follow to keep us all safe. I just wish you had looked at the whole patient that night instead of just the notes in my chart. I wish there was some way to explain to a male doctor what it feels like to have ovarian cysts or even endometriosis. When I told your nurse that it felt like someone had reached up inside me and was clawing at my organs, that it felt like it was all being ripped apart from the inside out, I was trying my hardest to put into words that which is unexplainable. However, my female nurse paled at my description and hugged me in sympathy. Maybe it’s unfair to say you can’t understand because you’re a man, but it would appear that was the case.

I wanted to write this letter to you so that maybe you can help the next patient like me. Because I am not alone, sir. There are thousands of us fighting chronic illness. Thousands of patients who struggle each day to have the medical community understand their symptoms and help them. There are many of us who know more about our conditions than the doctors we see. We’re not all junkies looking for a fix. We research our symptoms and conditions, we search for all methods of treatment. We try vitamins, meditation, and alternative therapies to avoid abusing pain medication and medical services.

I’m not angry with you and I’m sorry if it comes across that way. I appreciate your Emergency Room and the service it offers. I try very hard to avoid needing those services. Sometimes it’s an inevitability. And at those times, having staff that listens and works with us patients makes all the difference in the world.

Thank you.

The Ghost of a Mother

To The Woman I’ll Never Meet

I see your face every morning when I wake.

I’ve seen pictures and I know it’s your smile that peeks out of his face. While he may have his dad’s twinkle in his eyes, it’s your dimples that I fell in love with from the very start.

It’s your open mind that I know I can share anything with, that I know will understand me when I don’t understand myself.

Occasionally I’ll watch a romantic comedy or those silly wedding shows on TV and I have a brief thought that I’m lucky to not have to worry about having a mother in law that I don’t get along with. But my heart lurches with that thought.

I want so badly to know you.

I want your help as we make these tentative plans for our future. I want lunches with you where you tell me stories of when he was younger and we can giggle over how much he hasn’t changed.

I want to be able to tell you what an amazing son you raised.

Do you know that you raised someone who puts everyone else’s needs before his own? That he is so giving of himself that he puts himself last?

Did you get to see how caring and sweet he is? Did you get to know this wonderful heart that he’s given to me?

I watch him so often and wonder which of his little quirks he learned from you. I see him so often with his dad, I know what he picked up there!

Do you know that he misses you so very much? That his heart aches for you even on the most benign of days?

Your loss changed him in ways that I may never fully know.

I hope that you’re still watching over him. I hope you can see how wonderfully he takes care of me, of his dad. How he’s taken my son in and loves him SO GREAT. How he works so very hard to provide for us and how he’s still playing the music you inspired within him.

Do you know he sings now? And that he’s come out of his shell a bit. Occasionally he’ll walk around the crowd while playing his guitar.

Your shy son does that.

I guess I said all that to say this: You’ve raised a gem, a true diamond in the rough. He is my world and he’s promised me a future together. I promise I won’t take him for granted, this gift you’ve given me.

Thank you for raising the man I love. I only hope to do the same for my son.

Your Daughter in Law To Be

Miss Bubbliness

At a time many parents were playing Santa, I sat stunned as I listened to a man I’ve never met but whom I love, tell me that one of my favorite people was gone from this earth.

Misty-Beans

I think a part of me must still be in shock, as I’ve been since I got that text from Dom. How else could I be sitting here typing these words to you? Words you’ll never read, words that will never be enough.

One might say that you can’t love someone you’ve never met. I call bullshit. You and I have loved each other from the very beginning. Do you remember our first chats? We were going to do it all together. Fairly early on it was clear that we were separated at birth, you being my slightly older big sister. We bonded over food, our love of sweets, and oddly…our completely different yet similar lives with chronic pain.

You taught me how to face this life of pain with grace and positivity. You always had a smile, even on the worst of your days. Even when you felt horrible, you cared more about asking how I was doing. Back and forth we went, caring for each other, keeping tabs on doctors appointments and treatment options. When you won your disability case, I celebrated with you, 2000 miles away. Whenever I had a new creative notion, you jumped on board, instantly giving it your seal of approval. “100% Misty Approved”

We shared tales of our men and how we had gotten so lucky to find those that love us in spite of our difficulties. We marveled that our guys would work all day to provide for us and then come home to help us clean because we couldn’t do it. How lucky we are that they chose us to love! We railed at circumstances that meant we didn’t live next door together. Oh, the tales we’d have over coffee! Oh, the dinners we could have, the double dates!

You taught me the true meaning of family and what it is to truly love someone. Your bubbly personality was a light in my life EVERY. SINGLE. DAY.

I cried this morning as I realized I’ll never see your smiling icon in my email again. I’ll never again hear your charming drawl call me “Dah-lin.” I’ll never again hear that bubbly laugh that could make Scrooge himself smile. I’ll never again see you smiling, bright red lipstick ever present, as we chat through our computer screens. I’ll never get to hug you tight and tell you how very much I love you.

You won’t get to be there when I finally have my first slice of key lime pie.

Misty

I miss you with every atom of my being. My heart feels crushed, my soul is broken beyond recognition. I know if you were here, you’d be patting my back and hushing me in that sweet voice of yours. You’d tell me, “Everything’s gonna be alright, Sugarpop.” But if you were here, I wouldn’t be crying the big, ugly cry and we wouldn’t be having this conversation.

Damn it. It isn’t going to be okay. This isn’t fair. Your light shined so bright for so many, I don’t understand why it has to be gone so soon. Your husband’s voice breaks me apart, he misses you so badly. We all do.

I hope that you know how incredibly you are loved. I hope you know the hole that is left gaping with your absence. I hope you know that there will never again be another YOU. I hope you know that just because you’re not here to bind us, Dominic will always be my brother-in-law. And I promise you, I will take care of him for you.

Go in peace, my sweet love. My sister. My soulmate.

I Loved You

Dear you-

I had thought I was past all this, thought I’d dealt with my feelings. Since I’m sitting here writing this, I guess not.

I’ve worked hard in the past month to remove the negativity from my life. It’s done wonders, really. I find when there’s less stress, less bad feelings, I feel better. Mentally and physically.

Would it surprise you to know that you were the catalyst for my month of self-care and positivity? I found I had so much anger built up inside and it was eating at me. Quite a lot of that anger was for you. I worked hard to put it aside, focus on my blessings, and move forward. I told myself that things would be okay.

But you never called, not once, to check on me or us. Not even a quick text message in the middle of a busy day to say hi or that you were wondering how things were. Still, I put it out of my mind, focused on the good, and tried to forget that my feelings hurt.

Until last week.

Last week, when I went back to the doctor to make plans for resuming my medications. As I sat in my doctor’s office and cried while he examined my hands and talked of the damage done to my joints in the last two months, all of my anger and hurt came back.

I realized it had never really left.

I’ve always said that I’m a doormat. I don’t care what happens to me, just don’t hurt someone I love. I guess I was wrong. Because it does hurt.

Do you know how it feels to realize your closest friend isn’t just a couple miles down the road, but over an hour’s drive away? Do you know how it feels to know that the people you would do anything for don’t feel the same?

Do you know how it feels to love someone only to have them walk away?

For the longest time, I took the blame. Yes, I changed when I got sick. Yes, I flaked a lot. Yes, I became pretty high maintenance. But as your wedding drew near, I realized it wasn’t me. How could it be, when you would maintain a friendship with someone who did nearly everything to sabotage your wedding?

I can’t count how many times I put my health and well being on the back burner to come to your rescue during those months leading up to your wedding. Dentist appointments, babysitting, the afternoon I spent hand-addressing your invitations.

Do you know how it feels to realize your friends don’t care about your health?

Do you know the shame I felt at being angry that I caught your daughter’s cold? Even as I raged when it developed into pneumonia, a part of me hurt that I could be so mad at someone I cared about.

But that’s the key: I cared. You didn’t.

In hindsight, you’ve not once taken my diagnosis seriously. How many times did you lecture me about going on a diet, saying it would solve my problems? How many times did you tell me to push through it? How many times did you poke fun and joke that I was faking it? How many times did you tell me I was just being lazy?

A friendship is based on mutual trust and respect. If you can’t have either of those things, you have no grounds for moving forward. I trusted you to care about me and my health. You couldn’t even trust that I was being truthful about my condition.

I think that I won’t be able to move past this for some time yet. It feels like a break up, and my heart is still raw. I loved you and your family, I took you in as mine. There’s very little I wouldn’t have done for you.

Shame on me for expecting the same.