Don’t Miss the Joy

I have been kicked out of my patient support group. Here’s the story: Several months ago, I joined a support group for glaucoma patients online. Other than my father, I don’t personally know any other glaucoma patients. I certainly don’t know any end-stage glaucoma patients. I don’t know anyone close to my age with major vision loss. I enjoyed being able to interact with others like me online, and I hope I was able to be an encouragement to some.
Recently though, a strange thing happened. One evening, I was chatting with others in the group, exchanging stories. When I woke up the next morning, I reached for my phone while drinking my morning coffee, to check for any new comments or posts. My patient support group had vanished. It wasn’t listed under my Facebook groups and it didn’t come up no matter how many times I searched. It was as if I had been blocked, but I hadn’t posted anything offensive (I promise). As I pondered this, I had a strong suspicion that this was from God. I believe that He literally kicked me out of my support group. Why? To teach me to live as a survivor instead of a patient. I had encountered a lot of hopelessness in the patient group, and I had been struggling with feeling hopeless myself since I had to stop driving a few months back. The group had served a purpose for a time, but now it had come time to step into a new season.

I realize now that I can live from the 80% or from the 20%. That is, I can live under the burden of knowing that 80% of my vision is gone, or I can live focused on the blessing of still having the 20%. When I am living as a patient, I am focusing on my loss.

I can focus on the “dis” in disability (a Latin prefix meaning “apart, asunder, away, or having a privative, negative or reversing force”). I can live each day focusing on what is missing. Experience has taught me that this is no way to live. Instead, I can make the daily choice to live life in such a way that I focus on putting the ability in disability!

I can live out of the prognosis, or out of the hope of God’s promises. I can count down the birthdays until the age when the doctors say the light will be put out. Or I can receive each day as a gift, choosing to see everything as a miracle.

Live out of the pain or out of the joy. Both are present. We must choose to put down the pain and take up the joy.

Don’t miss the joy, friends!

I realize now that living like a patient puts a strain on my relationships, because when we see ourselves as a patient, we expect those around us to see us as one too. But really, maybe they just want to love us as they always have, and see us as Mom or Helen or daughter, sister, friend. After all, our loved ones see strength in us even when we don’t see it in ourselves.

I can focus on what was taken or what I still have, even what has been gained. In Christ Jesus, there is always still so much to gain.

“At the end of the day, you can either focus on what’s tearing you apart or what’s holding you together.” ~Unknown

I leave you with these words from Brittany Rust which I love: “Whatever you might be going through today, know that when you look to Him you are His. Know that whatever is going on around you cannot stand against Him. Find the joy that endures the circumstances because the joy is in Him.”

How will you choose joy today?


There’s Always Something to Celebrate

Thoughts on Birthdays, Being Me & Breaking Free

Life has flown in the 6+ months since my last blog post!  Last summer, I decided to start “moonlighting” and I took on a part-time side job with a regional magazine. I had never worked in sales, and advertising sales proved to be challenging– 100% commission, generating my own leads. We work and are paid on a quarterly basis. My first quarter, Fall, was ok. Winter was a dud. Finally, in Spring, success! I finally earned what I consider to be my first “real” paycheck, which was my goal all along. It came at the perfect time when my family needed it most, and it was a blessing. The feeling of accomplishment far outweighed the monetary gain.

Over Christmas break, I decided that I wanted to do more with my writing. I joined a couple of Christian writing groups (for mutual support and encouragement purposes), and I got to work. This month, thankfully, I had my first article published! The trade journal that picked it up has a limited readership and circulation (in the U.S. only), but it’s a start! Seeing my name and photo in print on a magazine page was a great encouragement.

Finally, last month, I decided that I wanted to move forward with pursuing my MBA– for real this time; no more dress rehearsal. I discovered what I now consider to be the program of my dreams, I applied, my previous credit transferred, and now I’m registered to begin courses next month.

Despite all of the political, social and economic challenges present in our country (of which there are many, and they cannot be glossed over or ignored), I am still thankful to live in a place where a girl like me can dream up an idea, and then decide to go do it. I am aware that this is not the case for so many women.

While I so enjoy connecting with other female entrepreneurs here in the US– and trying to encourage, help and partner with them however I can– it is one of my driving passions to partner with organizations that provide opportunities for women in developing countries. World Vision, Kiva and a women’s shelter in Guatemala called El Refugio are my three personal favorites that are close to my heart.

I don’t have any big dreams; I have several small dreams that make up a full, big, beautiful life.

Without Christ in my life, I had nothing. When I found Him I found my true identity. Suddenly I had something to seek and live and run and strive for. I well remember the emptiness of not having Him. Maya Angelou put it this way: “When I found that….I was a child of God, when I understood that, when I comprehended that….when I internalized that, I became courageous. I dared to do anything that was a good thing.”

This week I am celebrating a Birthday. There are a few different ways that I could look at this one. I’m turning 36, which feels somewhat momentous. I am now tilting more toward 40 than 30, and I’m well poised to be rushed along toward middle age at speed. I can sympathize with Job: “…..What’s left races off too fast….My life is going fast, like a ship under full sail, like an eagle plummeting to its prey.” (9:25-26)

I’m turning 36. According to one of my specialists at Johns Hopkins, I will be blind by the time I’m 50. Therefore, I could choose to see my birthday as the subtraction of one more year of sight. Instead of 15 years of sight left, I now have 14 years remaining. The enemy of my soul would love for me to fixate on that. He hates me and he has always hated my birthday, and he almost made me hate it too– starting with the time when something tragic happened to me on the day I turned 15.

But no. I refuse to live that way.

John 9:4 says, “As long as it is day, we must do the work of him who sent me.” We have work to do. In a very real sense, end-stage Glaucoma is darkness closing in, threatening to choke out the daylight. Therefore I cling with all that is within me to John 1:5: “The light shines in the darkness, and the darkness has not overcome it.”

Whatever it is that threatens the light in your life– failure, mistakes, pain, financial crisis, a bad diagnosis or an unfavorable prognosis– instead of allowing it to suffocate or overshadow your dreams and goals, allow it instead to be fuel to the fire that burns within your heart…..The very fire that was first ignited by His love. Allow it to propel you forward.

Keep moving forward, following His leading, trusting in Him, allowing Him to open doors for you. (Oh, but He will!) And while you’re at it, extend a hand to others to help them do the same.

“This really is your one wild and precious life. You matter so much. You are writing a good story for your children. Your community and church need you, your neighbors and family need you, God adores you and Jesus is obsessed with you. Here we are, your community of women running this race together, proud of you, moved by you. We’ll stumble, that’s part of the course; but we’ll leave no woman behind.” ~Jen Hatmaker, For the Love

So this weekend, I will be out celebrating my birthday and exulting in the exquisite gift of this one wild and precious life.

I hope you will be celebrating too! There is always, always a reason to celebrate– Be it a life well lived, or the first bloom of Spring, or the way your hand still fits so well in his in spite of everything.

“Life is a gift, and the Giver is Good.”

-Pat Barrett, Housefires


Coffee Date With A Stranger

On a recent Monday afternoon, I had coffee with a woman who I may not ever see again.  Her name is Ashley and she is my Life Care Expert and I am her client.  At one of my most frequented coffee shops, I sip my soy latte and she sips her Diet Coke, and we talk about my life– where I’ve been; where I’m going.

Ashley is blonde and rather cute and has a nice dress on; looks to be about my age.           We could maybe have been friends.  After I share my life’s story with a stranger, she mentions that she has thoroughly studied over 1,000 pages of my medical records. (How is it that I have 1,000 pages of medical records?)  Ashley pauses, takes a breath, looks at me from across the table in our corner at Java Station, and renders her professional opinion, doing what she came here to do.  I wonder how it feels to be her in these moments.

Ashley believes that at some point in the future, I will lose my ability “to function well in a fast-paced business environment”– such as the sunny shop where I currently spend days pouring over my desk and running to and fro, relishing just about every minute.  She references the list that she made when I shared about my work, and she runs through each item that I ticked off when I talked about my areas of interest and experience, each one a little sunny spot in my life:  Retail, small business, entrepreneurship, creative design, special events, managing people, always striving to bring a little order out of chaos….. This is me.

Ashley pauses again and says, “I know you mentioned that you would like to complete your MBA, but I am concerned that you would not be able to really use it.”  She promises to give this matter a lot of thought and to try to come up with some ideas for a career that I could pursue as a person with low vision.  She’ll have to get back to me on that one.         And she doesn’t think my commute to my office will be practical.  I sit back and reflect on my dream of going to grad school.  I have been dreading this woman’s words for weeks, but still they have come, and I hear them……Time slows down.  I hear the college students at the next table laughing and carrying on.  (I used to be so carefree like them.)

I hear these voices in the middle of this coffee shop on a Monday…..But there is another voice.  It is stronger than the rest, more present somehow.  It is the most captivating sound.  My friend Jessie Lee wrote of this voice in her blog:

Jesus, to me, sounds like rain. Sometimes, like thunder in the valley of the Rockies.        Like the  turning pages of a book.  Like the coffee pot when it’s nearly done brewing.           If grace could make a sound, that’s what Jesus would sound like.

I wonder if Ashley knows my Jesus.  I hope so.

To me, His voice sounds like the breeze rustling in the palm fronds when I’m back on the island with my family, or the wind on the porch at our mountain house when the leaves turn under.  Like a piano, perfectly tuned, or a symphony just beginning to play.              Like the song of birds in the morning, when it’s still black as night but they find a reason to sing anyway.  His voice is soothing like soft waves on the beach and stirring like trees restless before a storm.

Emotion hits me at strange times nowadays.  My friend who survived a brain tumor has told me that it gets her too.  On this day, I make it back to work and I’m perfectly OK until the last worker leaves the bookstore and I hear their key turn in the lock  Then the tears come and won’t by any means stop, so I grab paper and begin to write, because it has become so cathartic for me and the only way I can release the pain sometimes. Even now, in my dark, shadowy office with the single light on, I realize that the voice is there– stronger and more beautiful than any voice I’ve ever heard.  So beautiful that I cannot turn away from it.  Once you hear it, you can’t un-hear it, even if you wanted to.  Grace has a sound.  Once you hear it, all other sounds fade away.

It’s so lovely it will make you cry, but it’s the good kind of cry– like when you actually stop for a minute and think how ridiculously-crazy-beautiful and utterly, shockingly  breathtaking this life really is after all.

Do you know that voice?