Being Present

My illness has taught me to soak in beautiful moments and to be grateful that I have so much goodness in my life. The 2014 holiday season was one of my favorite so far. That may seem odd, since it’s my first holiday season with a chronic illness, but I assure you it’s the truth. I was fully present while celebrating with loved ones. I didn’t spend much time worrying about what I should do or how things could be better. Instead, I focused on the beauty to be found in my messy, imperfect life.

There is a peace that comes with letting go of the future I’d expected. I have to do a bit of “letting go” every day.  During the holidays, I was reminded that it’s not easy to need a wheelchair to make it through a holiday display. But once I accepted my new reality, I could focus on having fun instead of being upset that I depend on my chair. There are dozens of moments like that each day for me as I learn to live a full life with an illness. And each of those moments present me with the choice to either think about how things could be or to be grateful for the goodness to be found in my new way of life. 

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(Touring the holiday show at a local conservatory with my mom)

I believe that it’s all about perspective. The way I approach life affects what I see. When I think about the time spent with my family as precious and important, it’s much more difficult to spend that time angry about the things I can’t do with them because of my illness. I’m too busy paying attention to someone’s funny story or hugging a loved one to think about what could be. I am present in the moment, even though there are new limitations for me. I refuse to spend unnecessary time focusing on my frustrations, because doing that causes me to miss out on the relationships around me.

I was able to make it through two different trips away from home over the holidays, which is great progress for me! Thanks to my mom and my husband, both of the trips went as well as I could hope. I am currently unable to drive, but I was still able to spend some great time with family. One of the brightest parts of my holiday season was the time I spent with my nephew. I got to cuddle with him, rock him to sleep, and play with him. It was delightful! S and I soaked up all the time we could get with the little guy.

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(Spending time with our nephew was wonderful!)

I realize the excitement of the new year has just about worn off, but I’d like to encourage you to make a 2015 goal for yourself. As for me, I’ll be focusing on being present for the beautiful moments that make up my messy, imperfect life.

Do Something Good

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My heart breaks every time I learn about injustice. I am a deeply empathetic person– it’s just the way I am wired. I can see that people all over the country are experiencing pain and feeling misunderstood. There is a lot of hurt these days, and it seems to keep spreading. As I’ve watched the news this week, I’ve felt moved to make a difference, so I’ve been thinking about what I can do to bring positive change in my community. I’ll have to be creative, since my illness causes me to spend a lot of time at home, but I am determined to bring a bit of light into the darkness we face.

I don’t understand why people think that hostility and hatred will bring change. It won’t bring understanding or grace; all it can bring is more hurt. When I watch the news and listen to the people around me, I don’t think we need any more pain. We need kindness, we need forgiveness, and we need to feel heard. We need to know we’re not alone, even when things get messy. Deep down, we have a lot in common.

I know that injustice, racism, and inequality are complex issues, and I still have a lot of learning to do. In the meantime, I’d like to offer a few ideas for bringing hope into our communities.

  • Focus on listening to others. Instead of spending your time thinking about the “perfect response” during a conversation, listen to the other person. You’ll be surprised what you learn when you take the time to focus on someone else’s need to be heard.
  • Look for volunteer opportunities. If you want to make a difference in your community, you may need to do some groundwork. Most charities and community organizations are stretched pretty thin, so they don’t have a lot of time for recruitment. If you care about people experiencing poverty, look into the food pantries in your area. Consider donating food to them every month or set up a time to talk with the director about helping distribute food. If you want to help children, see if there is a chapter of Big Brothers Big Sisters nearby. You need to add your volunteer work to your schedule so that it becomes a part of your life. Otherwise, it’s easy to put it off.
  • Get to know your neighbors. These days, we often connect online, and we sometimes forget about the people who live next door. It can be a bit awkward to say hello to someone for the first time, but most people will say hello in return. Think about baking some Christmas cookies as a friendly gesture– it’s a great way to break the ice. This time of year can be tough, so think about ways to be kind to the people who live nearby.
  • Collect items for a worthy cause. Hygiene items are in high demand for people with little or no income. Consider collecting toiletries from friends and family to donate to a local charity. Or put together baskets of feminine care products, hair brushes, lotion, hair spray, etc. for a domestic violence shelter. Socks are also a much-needed item at shelters. Ask loved ones to give a pack of new socks with your holiday gift and then bring the collection to local homeless shelter. You can also call specific organizations to see what they need most so that your collection can be especially helpful.

I encourage you to set aside time this week to do something positive for someone else.

Be the change you wish to see in the world. -Gandhi

What I Need and What I Don’t

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Chronic illness is quite the teacher. I’ve been surprised by the things I’ve missed on my bad days. The little things in life have become increasingly important to me. I’ve missed things that I wouldn’t have expected, like the sunshine on my face, being in the woods, and walking without caution. I appreciate independence in an entirely new way because I know what it’s like to depend on others for almost everything.

There were a few different local marathons this weekend, and I saw pictures online of smiling friends crossing the finish line. And I smiled too, because I saw happiness in their eyes. This afternoon, when I walked through the living room with a lid-free cup of coffee in my hands (and didn’t spill it), I felt proud of myself. I suspect that how I felt in that moment was similar to how the runners felt when the race was done and they got their medals. Living with chronic illness requires determination and perseverance, just like finishing a long race. Progress comes slowly and it requires hard work. But unlike running a marathon, being ill is not a choice. I can’t throw up my hands and give up. I can’t take a break or schedule a day off.  I am not going after a medal or fulfilling a goal; I am fighting for my health.

There are plenty of things I need to manage my illness. I need kindness from strangers. I need thoughtful words from loved ones. I need rides to appointments. I need grace and understanding. This whole ordeal is difficult, and I don’t do well when I try to handle it alone. There are also things that I do not need. I do not need judgement. I do not need to hear the newest tip or trick on increasing my energy.  I do not need feigned concern or promises that you cannot keep.

Please do not hear my words in an angry tone. I am not writing from an angry place; I am sharing the truth with you, and I am accepting that certain things are hurtful. It’s hurtful when someone implies that I am not ill. I have POTS and my symptoms are real. It is heart-wrenching to be told otherwise. It feel hurt when I am told I could feel better if I would follow a particular “quick fix.” I have tried a number of methods for treating my symptoms, and I need my loved ones to trust that I am managing treatment the best I can.  I also have a team of doctors overseeing my progress. Unfortunately, POTS doesn’t have a cure. If you want to show me that you care about my health, please take the time to learn about my condition or ask me about my illness. Finally, be clear about your willingness to help me. If you are not interested or able to help, please find the courage to be honest with me. Please  do not tell me you’ll be there for me if that’s untrue, because that is hurtful and mean. I appreciate people who are polite, but I put more value on honesty.

I have learned many things in the process of being ill, and I am grateful for the people who have supported me as I learned the hard things. I am grateful for the days when I can sit in the sunshine or enjoy a sense of normalcy. I am grateful for a husband who holds my hand as I figure out what it looks like for me to live an abundant life with an illness. It is empowering to take the time to think about what I do and do not need as I try to build a good life for myself. I encourage you to do the same.

Loving Yourself on Hard Days

Good in Every Day SelfieSome days are hard, and the past three days have been that way for me. I am exhausted and my heart rate is elevated. And while I’m getting used to dealing with these symptoms, the disappointment that comes with them doesn’t go away. It still hurts me to cancel plans and I don’t enjoy asking for help with simple tasks.  It’s humbling to admit that I don’t have much control over how I feel from day to day.

I’ve worked hard over the years to develop personal freedom and independence. It’s been a real struggle for me to accept that I have a purpose that is not dependent on what I do or what others think. I’ve fought to hold onto the truth that I am worthy of love, even on my worst days.  When I first met S, I was clear that I am a “strong and independent woman.” I must have said that phrase to him at least a dozen times before we even started dating because I needed him to know that I didn’t expect him to determine my self-worth. More importantly, I had to remind myself that while the relationships in my life are important, they do not take away my responsibility to love myself.

Over the past six months, I’ve told myself over and over it’s okay to ask for help. And I’ve realized that asking other people for help can be an act of self-care. If I choose to be without something I need because I won’t ask for help, then I am ignoring my responsibility to love myself. I wouldn’t want someone else go without what they need, and I can’t ignore my own needs, either. It may be humbling, but asking for help is especially important for me right now. At the same time, I have to remember there is an end to what other people can do for me. I can ask my loved ones to drive me to appointments, help me with errands, and sit with me over tea, but it’s unreasonable to expect them to take on the responsibilities I have to myself.

You see, no one else can convince me that my story matters. No one else can reach into the darkest parts of my soul and show me that I am beautiful, no matter what. I have to do that for myself. I firmly believe that compassionate people can help, but they cannot do the work for me. The most loving, helpful team of people cannot rescue me from the project of loving myself. They cannot force me to forgive myself for the mistakes that only I know about and they will never be able to repair the broken parts of my soul.

I am sharing this truth with you because I know that it’s hard to accept what you can’t change. It’s hard to live with chronic illness, shame or emotional pain. And it’s hard to admit that you don’t have it all together. But please, don’t let the difficulty scare you away from finding hope. Because there is always, always hope. There is hope for me on the days I cannot get out of bed and there is hope for you when you feel terribly alone. And when we find that hope and choose to love ourselves, hard days can still hold joy. The past few days have left me unable to do much outside of my bed, but I’ve still been able to find goodness in them. I’ve focused on my adorable cats, lasting friendships, fresh flowers, and kind husband. And I’ve celebrated the beautiful, abundant life I’ve created for myself. As difficult as illness can be sometimes, it can’t take away my joy or my self-love. I hope you will work to make the same true for yourself.

Kind Neighbors

IMG_20140801_185729My neighborhood doesn’t look like the one where I grew up. As a child, I lived in a lovely house at the end of a cul-de-sac, and it was a great place for me to be. I am thankful for my childhood home and the kind neighbors. But when I look out my window now, there are far more abandoned houses. Some homes are divided into apartments, and others are owned by families. There’s a group of homes near us that provides transitional housing for veterans and recovering addicts, and that makes some people uneasy (the residents are actually great neighbors). I live in an area that some people snub, thinking that it’s not as nice as the local suburbs. But I love it here. S and I moved here because we believe in the future of this neighborhood.  It’s not a perfect place, but we have come to appreciate the beauty here. Being ill has allowed me to invest more into my neighborhood by getting to know neighbors and the people who walk by my house every day.

Today I willed myself to sit on the front porch, even though I felt exhausted from a medical appointment this morning. I came outside and I looked around to enjoy the mature trees, perfect weather, and cobblestone street. I glanced at our lawn and noticed that it was long. I added mowing the lawn to the mental list of chores that need to be done at home, and I tried to focus on the beautiful parts of my street instead. Then a neighbor I’d never met came over from across the street and started mowing my lawn. Right behind him was another man who I’ve been getting to know over the past few weeks, and he did some weed whacking and edging for us. I thanked them as tears welled up in my eyes and I tried not to cry. Thankfully, I was successful. I think the gentlemen would have been a little confused by tears.

My illness has brought feelings of isolation back into my life, and getting to know my neighbors has helped me feel like a part of something. However, today I felt pretty alone. When I had a few people show my a simple act of kindness, it made a big difference in my day. I was reminded that people in my neighborhood take pride where we live. And I felt privileged to have people around me who care enough to help me have a nice yard. It may be a small thing to some people, but it means a lot to me right now.

Please don’t underestimate the power of showing kindness to other people. You don’t need extra money to be kind, and it is a gift you can always give. Kindness is possible in the nicest neighborhood and the most run-down street. And it’s something that everyone understands, no matter their background. Please remember that some of us are fragile right now, and we may need some extra love. Feel free to ask us if you can help, because we can be too prideful to ask for a hand. We let the grass grow and the dishes pile up when things are tough, but we don’t like it at all. Or we may just feel alone and need someone to show us that we are not alone, even on our rough days.

Today I am grateful to live in a neighborhood where kindness can be clearly seen. I am grateful for the train whistles and kids yelling and neighborhood cats. I see hope for an area that some people ignore because I understand that while the kindness of my neighbors cannot be included in my property value, it certainly makes a difference in my life. 

Clarity and Grace

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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.