Clarity and Grace

Grace quote

Living with my illness has brought more clarity to certain areas of my life. It’s shown me that people who’ve stuck by me no matter what are the people that most deserve my loyalty (see this post). It’s taught me that some people cannot or will not stand with me when life becomes messy and uncertain. Some people take from us, and for whatever reason, they rarely give in return. I hope that I have learned to accept these truths with grace, but when I am honest with myself, I have to admit that the path to that acceptance has been full of tears and anger. 

I cannot tell you that I’ve only been on the receiving end of abandonment because that would be unfair and untrue. About a year ago, S and I had some friends that went through a messy and difficult time. I didn’t know how to best respond to the situation, so I slowly walked away from our friends. I am ashamed of that decision. Now I know that there is not one “right way” to stand with someone during a terrible time. The important part is sitting with them in the unknown and showing up when life isn’t clear. I sometimes wish that life was black and white or that every problem only had one solution. As I’ve grown as a person, I’ve realized that a black and white life would indeed be easier, but it would be much less beautiful. There would be less opportunity for grace in a black and white world, and I need grace.

Yesterday I sat down with the friends I had walked away from and I apologized to them. I told them that I was wrong– because that’s the truth. My decision to fade out of their lives was a choice, and it was not a good one. Interacting with them during my illness has been a spiritual experience for me because they’ve shown up and loved me when other people left. Despite my hurtful choices, they showed grace and compassion to me. They know what it’s like to be abandoned, and they refused to abandon me and S. They chose to be present.

After I apologized, one of our friends looked at me and said “Now I don’t have to love you anyway, I can just love.” Those words have played over and over in my mind the last 24 hours. Grace is choosing to love anyway, despite pain or disagreement with someone. Choosing grace does not mean I agree with how someone handles every aspect of their lives, it means that I can love them anyway. It means that I am loved in my messy imperfection. Grace means that I love other people when they stray from black and white and walk into the grey areas of life. And when someone accepts the grace that is offered, they are able to walk into forgiveness and rebuild an authentic relationship. I am grateful today because I get to have an authentic relationship with people who have loved me in my messiness and who will stand by me in my brokenness.

Today, I encourage you to look at how you’ve given and received grace in your relationships.

Advertisements

Hurtful stereotypes

“You’re too young to be so sick….Oh, you are slow. You walk like you’re 80 years old.”  -Lab tech 

S and I got up early today to get my lab work done. When I saw my favorite lab tech was working, I told S that I hoped I’d get her again. But I had no such luck. I was shown into a room by an unfamiliar face, and she managed to say plenty of ignorant things in the short time I was with her. She didn’t know that I’d spent yesterday on the couch, feeling nauseous and worn out. She didn’t realize that I am still grieving the loss of the life I had before POTS. She didn’t know that I’d challenged myself to walk in the lab instead of using my transport chair. However, she still commented on my illness (which she admits she’s never heard of before today).

Her words hurt. I felt angry, misunderstood, and judged. I didn’t correct her or share my frustrations with her because there was no point. She wasn’t going to truly listen because she wasn’t interested. She’d made up her mind about me. I don’t think she meant to hurt me with her words, but that didn’t make them hurt any less.

I am a young woman with a chronic illness. I would love to live like most people my age (or even walk like them), but that is not possible right now. I don’t enjoy scheduling medical appointments, and I never thought this would be how I would spend much of my twenties. But it’s my reality, and I am doing my best to choose joy and be grateful.

Lately, life has been teaching me an uncomfortable lesson: Even with good intentions, words and actions can deeply hurt others. I have looked inside myself to see how my ignorance or selfishness causes others pain, and I am pushing myself to be more mindful of what I say and do. I am slowly making progress in that area (although I know it’s something that I will always need to consider). Today I was on the receiving end of ignorance. It hurts to be summed up by a stranger in under 10 minutes.

I felt defined by an illness I did not choose. 

I’ve thought about the other things I did not choose. I am a white woman, born in the United States. I didn’t have control over my gender, race, where I was born, or my parents’ ability to provide for me, but those things influence how I see the world. What if I’d been born into a different life? How would I see the world? Would I care more about current events? Would my heart break for different things? How would I feel about someone like me?

As I reflect on my interaction this morning, I still feel frustrated and hurt. But I must also remember that there have been times I’ve judged others on a part of themselves they did not choose, like race, gender, or neighborhood. I see that same judgment all around me. The past few weeks, I’ve read too many ignorant, hurtful words. I’ve heard too many people make comments about others who they’ve never met or tried to understand. And that is wrong, even if it’s not meant to cause harm. I am selfish when I do not look for the good in others or try to understand their point of view. If I do not try to see the humanity of those around me, then I will cause harm. When we judge people by their demographics and status, we promote ignorance.

Today, I decide to look at the whole person. Today, I choose to look past stereotypes. I will acknowledge that we are all shaped by the things we did not choose, but I will look past the surface to see the person next to me. I hope you can do the same.

Living with Passion

PassionAndCallingGraphic

I am a tremendously passionate person. One of the things that matters most to me is living an abundant life and helping other people do the same. At the end of the day, I want the BEST for myself and for the people around me. I want a full life for myself and for the people I love. I want my community to be filled with hope. I want people who feel worthless to know that they are loved, and I hope to be a part of that process. Being off work doesn’t change my passion– it’s not something that can disappear that easily. It is a part of me. If anything, being away from work makes my passion stronger. The isolation that comes with illness makes me appreciate kindness even more.

Life has been busy these past few days. We’ve had loved ones visiting from out of town, and it’s been a whirlwind (in the best way possible). At one point, I looked up and to see my husband, brother-in-law and dear friend sitting around me. I felt overwhelmingly loved in that moment. I didn’t need them to say they care because I didn’t doubt it at all. (Please note that I do think it’s important to tell our loved ones how we feel.) I knew that all three of them would do anything they could to help me, and that means more to me now than it has in a long time.

My health has been up and down this past week. I’ve had some of the best days I’ve had in months, and I have fully enjoyed them. I’ve also had some issues. Yesterday my heart rate ranged from 66bpm to 129bpm, and it changed fairly rapidly. It was scary. I’ve also had lower back pain off and on for 2 weeks (see this blog post). I have ultrasounds scheduled soon to determine if my digestive system is causing the back pain. On the bright side, my new transport chair has allowed me to do things that I wouldn’t otherwise be able to do, like go exploring with my brother-in-law.

Here’s a pic of the transport chair (and me having coffee to celebrate its arrival).

TransportChairCollage

I used to think that living with passion could only be done in a grand way like public speaking or founding an organization. But I’ve learned that I live out my passion and feel most alive in the small moments. I heard about the lives of my loved ones when they came to visit, and I got to share my journey with them. Those moments filled me with joy and purpose. I live with passion when I sit with an angry patient at work and listen to them without judgement. I do it as I write to you from my porch in Indiana. I live with passion when I become involved in my neighborhood or give food to someone in need. I can only live with passion when I am fully present. If I am distracted by the housework that needs to be done or I fixate on what I think someone did wrong, I am unable to live with passion. My illness has caused me to focus more on what happens to me during each moment. And it has given me the gift of reminding me to be fully present so that I can live my purpose. 

Enough

YouAreEnough (source)

I am a person who feels deeply; I experience emotions in a big way. I have always been a tender soul. My dad warned me to make decisions with my head instead of my heart, and I think he told me that because he knows how easily I can be overwhelmed by my feelings. My capacity to feel deeply has made me into someone who truly cares about the well-being of others. It has caused me to educate myself on issues of social justice because I can’t turn away when I hear that someone is being marginalized or bullied. In my adulthood, I’ve learned to use my tender heart as as asset, but that wasn’t always my experience. My tender heart was ruled by shame for years. I saw society demand perfection in exchange for love, so my heart drove me to be “good enough,” “pretty enough,” and “smart enough.” I learned the hard way that perfection is impossible, but I also grew to accept that I AM ENOUGH, even in my imperfection.

I believe that we must remind our hearts of the truth because there are lies floating around that we hear over and over again. We hear that our worth is determined by what we do, and we try to do it all. We’re told that thin is better, and we believe it. We see impeccably decorated homes online and go out to find a throw pillow to fill our emptiness. None of our attempts to “be enough” satisfy us because we can never live up to every expectation. We’ll never be perfect. And so, we put on the cloak of shame and hope that it will cover up all of the things we are not, never noticing the good things that we cover up in the process.

My tender heart has experienced a lot while I’ve been ill. It’s heard a few whispers that I am not “enough,” and it has considered giving in to shame. It’s considered going back into the dark places where I lived my life for too long. Being ill limits my ability to do certain things, so my heart may hear for a moment that I am without purpose. But when I cling to the truth, I see that my worth is not determined by what I do. My worth is found in who I am, and that does not change. Illness cannot steal my worth from me because I have already found worth in myself that is not determined by being “enough.”

My message today is that YOU ARE ENOUGH, too. The battle you are fighting right now does not define who you are. I am loved. You are loved. Let us take off shame today and remind ourselves of the truth.

This post is largely inspired by Brene Brown’s TED talks on vulnerability and shame. I encourage you to listen to them for yourself.

Just Show Up

Presence Quote

My husband and I live a few hours away from our relatives. Our families are supportive from afar, and that helps us, especially in hard times. Still, we’ve developed a hodgepodge group of loved ones nearby. We’ve chosen to invest in their lives and they’ve done the same for us. When I first fell ill, S and I had a set of people in mind who we thought would be there for us. It’s been surprising to see what happens to relationships when hard things happen. Many of the people we expected to help us faded out of our lives. It has been devastating to realize that sometimes tough times tear people away from each other.

I’ve struggled with loneliness as we’ve rebuilt our support system. And I’ve realized something: the presence of a loved one brings healing. I may have a high heart rate or be stuck at home, but knowing that someone cares brings me joy. I have a wall of cards and pictures in our bedroom to remind me that people care. I have to be intentional about remembering I am loved because illness doesn’t always make sense.

Some people have walked away, but others have come into our lives and brightened our days. I got a visit from co-workers in the Spring. They gave us mounds of homemade food, and I was blown away by their concern for us. Since then, they’re walked alongside me through doctors appointments, crazy symptoms, and good days. I recently met a friend of my in-laws when she showed up at my door with flowers, pizza, and a smile. She’s driven me to get blood work done and she’s listened to my long health-related stories. I know she genuinely cares. I am grateful for people who are willing to do the not-so-glamorous work of loving someone with an illness. 

Friends and family: Please know that all I need from the people I love is for them to show up. You may not know all the right things to say during a phone call, but please call anyway. You can bring a casserole or a simple smile. If you send me a goofy card, just know that you’ll bring a smile to my face. Simple connection with people I love has become even more important to me, and I would be happy to hear from you!

New Purpose

StephenDanielleSummer2014

When I first started having symptoms, I longed for a diagnosis. I thought that if I knew what was wrong, it would give me peace of mind. I was fortunate to get my POTS diagnosis within a few months of onset. Many people have to wait years for an accurate diagnosis, and I am grateful for a nurse practitioner that kept trying when I had an unusual set of symptoms. Knowing my illness has helped me to understand some of what is happening with my body. Still, there are some things that come with chronic illness that I couldn’t learn about through online medical research and education.

Most of my life, I’ve had a purpose that was easy to identify. When I was young, I was overly invested in my schoolwork. In college, I became passionate about social justice issues and mental health. I focused my studies on these issues so that I could live out my beliefs in those areas. Once I graduated from college, I spent my workday walking alongside people with severe mental illness. When someone asked me what was going on in my life, I could always talk about school or work. People usually want a short answer to the question, “What do you do?” and I’ve perfected my response over the years to a sentence or two.

And then came chronic illness. I don’t have a “typical day.” My activities usually depend on how I feel that day and if my body is willing to cooperate with my plans. If I have an elevated heart rate, it’s not realistic for me to leave home. Sometimes I cancel plans because I know that I cannot physically do what I’d hoped. One of the most difficult things for me has been leaving my job. I may be able to go back a few months from now, but I am unsure if that will be possible. I wasn’t able to wrap up things at work before taking my leave. I got really ill one day and left early. Since then, my doctors have advised me not to work. I love my job, and my co-workers are great people. I miss working with the patients I’d gotten to know so well. My first few weeks off work were spent thinking about the patients, asking myself, “How is she? Is he staying clean and sober? Will she succeed in meeting her goals?”. I miss the little moments when I saw progress. I even miss dealing with the behavioral issues with patients, because I knew I had an opportunity to help them grow. Leaving work felt like walking away from my purpose. As an adult, I have felt most alive and purpose-filled when I helped someone, and I got to do that every day at work.

Now I am the one who needs help and I feel powerless more often than I’d like to admit. And it feels natural to stay in the dark parts of my mind and feel sad. Learning to live with a chronic illness requires a grieving process. I am still working through my grief, but I have started to accept some of the changes in my life. It’s helped me to practice gratitude on a daily basis. Little by little, I am working toward living a full life. Today I made a list of things I can still do to bring joy to myself and others. It brought me some peace to write down a dozen things that I can always do. Here are a few of my favorites:

  •  wave at neighbors
  • kiss my husband
  • practice gratitude
  • encourage a loved one
  • write letters to pen pals
  • watch good movies

I am learning to redefine my purpose. I may not have the clear-cut title of student or case manager, but I am still a friend, wife, daughter, and neighbor. And for now, I want that to be enough.

 

Love,

Danielle

 

Believing in More than Doctors

Welcome to my blog. If you’re looking for more information about me, check out my bio section. I’ll be updating this blog over the next few weeks. Here’s the basics: I am a happy wife to my husband, who I refer to as “S”. I have an abundant life in Indiana, where I spend a lot of time with friends and my cat. I was diagnosed with Postural Orthostatic Tachycardia Syndrome earlier this year.

Today I went to urgent care for the second time in a week. I went on Saturday due to back pain, lower abdomen pain, and other not-so-fun symptoms. I was told I had an infection that could be resolved easily. I called my nurse practitioner today (Friday) because after 6 days of antibiotics, I still have the same symptoms. She told me to go to urgent care because she wouldn’t be able to see me before Monday.

So, S and I went. We waited to be seen. We explained my symptoms. And we asked for the provider’s feedback. She started with, “Your sample from last week was contaminated, so you didn’t have the diagnosis we thought you did.” Ugh! I’d been taking an antibiotic for an infection that hadn’t been identified. She did an exam, took a sample, and we waited some more. She didn’t find anything noteworthy, so we explained some more. Still nothing. I left with no diagnosis for my pain and symptoms. She sent me home with a script for a new, different antibiotic, hoping that it helps. I followed directions and advocated for myself, but it didn’t matter. The providers couldn’t figure out the problem, and my body acted up at a time that prevented me from seeing my family doctor. Sometimes answers aren’t easy to figure out.

I admit that I am feeling frustrated, annoyed, and a bit defeated. Since I was diagnosed in May, it seems like something new is always going on with my health. I want to see what my new “normal” looks like, but we haven’t gotten there yet. Medical tests, sickness, household tasks, and this unnamed problem have kept me from figuring it out. And I don’t like that at all.

Thanks to a wise woman, I am reminded today that I need to focus on what I do know. I cannot control whether or not my body will cooperate on any given day. But there are a few things that I do know for sure:

  • I am loved. In my dark moments, I doubt this. But most of the time, I know it’s true. I look at the wall of encouraging cards/pictures from loved ones, and I know that I am very loved.
  • Hope is a choice. And so is joy. Every day, I have to decide to focus on the goodness in my life. When I do, my day is much better.
  • There is purpose in my journey. There is purpose in yours, too.

My hope for this blog is to keep my loved ones updated on my health issues and my life in general. Please join me in this crazy, confusing time of my life.