When we deny our stories, they define us.
When we own our stories, we get to write a brave new ending.
– Brene Brown
Beyond the Storms
Is it true that many situations in life are completely out of our control? Simply and unfortunately… yes.
Some days, it feels like our stories are filled with storm after storm after storm. And unfortunately, each chapter of our lives isn’t guaranteed a happy ending… especially when Duchenne Muscular Dystrophy is involved. Within each chapter, however, there are natural periods of respite, periods of rest, even periods of sunshine. And occasionally, the most breath-taking rainbows will appear.
Thankfully, we don’t have to just sit around and wait for a rainbow to appear beyond the storm. We get to choose our own responses to loss and grief. It is our choice to face the situations that we are given in life and our choice to let those situations destroy, define or defend us, especially in our Duchenne community. We have the power to create our own rainbows through the things we can control: our own minds and our own behaviors. We have the power, but it does take effort. Purposefully practicing positive coping strategies can help us heal and find some sunshine again.
ROY G BIV
ROY G BIV is a common mnemonic device to help children remember the order of the colors in a rainbow. So, let’s use this mnemonic device to help remember some of the positive coping skills to find our light in the storm.
Relationships – Optimism – Y.O.U. – Gratitude – Boundaries – Introspection – Validation
Relationships
Whether you are introverted or extroverted, humans thrive on belonging and fellowship with others. When looking for your light, surround yourself with positive relationships in your life to help get you through the storms. Maybe a school counselor, a life coach, an aunt, uncle, or a parent could provide some sense of belonging. School mates, neighbors, siblings, or friends in extracurricular activities may have the potential to feel like a type of family. Even pets – school pets or family pets – can provide a strong sense of connection and love.
Remember: You do not have to face grief all by yourself.
Optimism
Optimism is such a difficult place to get to when you feel like you are in the middle of a stressful storm. However, even searching for the smallest positive thought can change your whole mindset. A simple strategy to incorporate into your daily life is to find a quote, affirmation or verse that resonates with you. Write it on your mirror with a dry-erase marker, put it on a sticky note next to your closet, or make it your home screen image when you turn on your computer.
When you immerse yourself in a quote, verse or affirmation that resonates with you, you will start to believe it. You will start to live it. Here are some of our favorite quotes from the Duchenne community.
Y.O.U.
All healing and growth begins with Y.O.U.! Focus on yourself and your needs. No one else knows exactly what you are dealing with. Whether your self-care is taking a warm bubble bath, watching a movie, spending time with your pet or reading a book, find something that really works for you. Self-care does not have to cost anything or be something big.
Sometimes it’s hard to do self-care when you’re a kid. It can be hard to advocate for your mental and physical health. Adults may think you’re making excuses, or that you want to avoid doing something. If you need help advocating for yourself, try to talk it out with a trusted adult, like a school counselor or your own counselor, maybe even a trusted aunt or uncle. Whatever plan you come up with, approach the adults in your life when you’re levelheaded and can explain your thoughts and reasons well.
And another thing to remember: It is not selfish to take care of yourself.
Gratitude
Gratitude is incredibly powerful and can change one’s mindset from negative to positive when practiced regularly. It doesn’t have to be a big thing that you’re grateful for. In fact, many of the truly meaningful things are familiar daily experiences, people or objects. A favorite shirt, your pet, a favorite teacher or song – these are all wonderful things to be grateful for.
Once we find things we’re grateful for, we need to remind ourselves of them daily. Creating art, writing poetry, making a list, writing one thing a day on a wall calendar, writing a song, and talking with a loved one are excellent ways to refocus your attention on the good things in your life. Another method we’re particularly fond of is the gratitude journal. The gratitude journal combines the mindfulness activity of finding what you are grateful for every day with the practice of journaling. The journal doesn’t even have to be handwritten or typed. Recording your thoughts or using a voice to text program also work well.
In the end, all that matters is finding your own way to celebrate your joy.
Boundaries
Setting limits and boundaries are incredibly important for self-care as well. Sometimes it is hard to admit that we need a break or that we have to say ‘no’ to something or someone. However, when you allow yourself to say no, to set boundaries and to recognize your own limits, you’ll likely be healthier – not just mentally, but physically, too.
Ways to set boundaries include establishing boundaries about how other people treat you, being involved in medical decisions, maybe even protecting how much sleep you need at night. Or possibly you’ve decided that your extracurricular activities are draining you too much, or the homework load is just too intense. Change your schedule or create a new plan and possibly enlist the help of an adult to make it happen. You are worth it.
It’s ok not to be able to do it all. We all have strengths and weaknesses. There are often times in our lives where we need help from others. It’s just a part of being human.
Introspection
We need to know ourselves in order to take care of ourselves. Introspection through reflection helps us assess our emotions, thoughts and needs. It’s fairly common in our culture for people to say they are “fine” when others ask them how they are doing. Most of us don’t want to spill all our problems on – say – the random bus driver. But when you do have a trusted confidant, it is ok to not feel ok and to admit that. We have to be honest about how we are feeling.
Living with Duchenne in your life can ignite so many emotions. Confusion, frustration, joy, sadness, excitement, hesitancy. It sure seems like these feelings are often in hyperdrive. It’s a rollercoaster of a life with ups, downs and unexpected turns.
As mentioned previously, journaling is a powerful and therapeutic tool to write those thoughts and feelings down while practicing mindfulness and introspection as well. Again, when we know our needs, we can meet our needs.
Validation
Lastly, validation is crucial to taking care of ourselves.
Not necessarily validation from others (although that is nice, too) but validation from ourselves. In order to have a strong sense of self, we need to be mentally and emotionally kind to ourselves. Really think about if you judge yourself harsher than you judge other people. Try to look at your situation from the outside and think about what you would tell a friend who was in a similar situation. It’s ok to struggle. It’s ok to make mistakes. It’s ok to feel “not ok.”
Validate your own feelings. Label those feelings and care for the feelings. In other words, if you name it, you can tame it. You are in control.
Growth
True, you won’t find a real pot of gold at the end of a rainbow. But when it comes to change, loss and grief, growth and happiness is the gold at the end of your rainbow. The reward when we take care of ourselves through these hard times is strength, resiliency and confidence in knowing that we have made it through something tough.
There will always be another storm, there will always be another rainbow, and there is always a pot of gold waiting for you. You can make it through whatever comes your way.
Thank you to Heather Benbrook, the co-author of this web page. Heather is a school counselor and also an LPC-Associate completing her supervision hours under the supervision of Bonnie Mondragon, MS, LPC-S, RPTS. For more about Heather, click here.
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