Even 13 years after his passing, my friend Brian’s spirit continues to remind me of the hope that is in the world. His love for life was contagious and his passion for music was beautiful to witness. Some of my favorite memories of him were when we didn’t have any plans which was most of the time because, well… college. We sat on the floor of his room, writing songs, singing, laughing and playing guitar. Most of the time, I would listen and watch him create. I loved to just be in the same room with him while he figured out his songs. He had a way with lyrics and melodies, which made it really fun to write music together.
A lifetime ago, and yet there are memories that seem recent and clear. I hear his voice in my head every now and then, his laughter, certain phrases he would use, an inside joke. But even these are fading slowly…like that old favorite song from years passed. You knew every word and recognized each note, but now you struggle to even remember the melody. The tune is beginning to escape you. The words have long gone. It’s scary to forget. But we do. We are only human, after all.
While going through some college stuff last year, I found a CD of a song Brian recorded during his last summer. It helped me to remember, even though it was hard to listen to because I had not heard his voice in over a decade. It is such a great song and I thought it deserved to be heard by more people. I had the privilege of watching this song develop in various apartments around the AU campus. I was there when he wrote it and hearing the words today have a new meaning for me. The chorus is an anthem to live your life in such a way that when someone mentions your name, their first thoughts are of person who lives graciously, generously and joyfully. This song is a good reminder to love fully and dream passionately.
If I never told you, I am telling you now. Thank you, Brian for the reminder to live with my heart fully open, to take risks and never stop dreaming. You are missed and your memory lives in everyone who knew and loved you…
Click the link below to listen to Brian’s song:
I walked 2 miles on Tuesday last week. TWO whole miles. For my amazing running friends who run 40 miles a day, do 500,000 mile marathons, triathlons, and run-15-hours-through-mud-athons every weekend, I know this sounds like the warm-up before your warm-up. But for me… it has been years since I could do it. Years. In the past, I have pushed myself to walk around the block, I try to do yoga or light exercise since being debilitated by this disease, but after a long active day, it usually does not happen. To feel that extra energy “urge” and be able to walk that long was HUGE. It was 2 miles without joint pain or muscle fatigue. I felt like doing it and I was able to keep doing it. And that’s just for starters! I was able to get out of bed early the next day, get ready, and go full steam like my old self of 4 years ago. Oh, how I’ve missed that self! I didn’t have the energy to wash my hair (this is why I love long hair, top knot it is!) and I almost had to crawl to the shower. BUT, I got ready and spent the day at the zoo with the girls. It hurt later and my body was angry with me for the rest of the week, but I enjoyed the day and was not totally distracted by pain and fatigue.
This week has been a little different. After a few busy weeks in a row, my body has shut down on me a bit. I have had kidney pain and exhaustion, but I have been able to keep up with life, for the most part minus some “sleep half the day away” days. Thankfully, it’s summer and the girls have been ok with lazy days and staying in our jammies.
I have also had a crazy “Lyme awareness” summer. I have written articles, had two different newspaper write ups about my journey (thanks to a sweet friend who writes for a newspaper) and was interviewed by KMOX for a quick story about the personal aspects of this disease. I was also asked to record a podcast for a friend who has a women’s ministry. Her new series is called “A Call to Courage.” Monday I will be going to a recording studio to talk about my struggle and how God has been my comfort and my peace throughout this never-ending battle. (Prayers appreciated for this!)
But, to be honest with you I have to admit that I get really tired of talking about this disease. I get weary of how Lyme seems to take over my life. I even get bored with the words used to describe this disease. Chronic. Late Stage. Severe. Neurological. Remission. It gets very old, very worn, and very depressing. There are times when I retreat to my room, turn off my phone, put on some Brandi Carlile (not Belinda), pull the curtains tight and push my head as far under the covers as I can.
Some days, I don’t want this to be my story. I didn’t ask for this. I don’t have to talk about it… right?
Yesterday, I was minding my own business, worrying about next week. I was feeling apprehensive about having my voice recorded – sounding vulnerable and small, as I’m sure it will. I was praying about it, but fearing it a little bit, too. Then I opened up my little white mailbox and pulled out junk mail along with some bills, and a simple white envelope with unfamiliar handwriting, addressed to me.
I wasn’t ready for what was written inside of the little blue lighthouse card. Words written to me, words that reduced me to a humble puddle of tears while I stood barefoot on my porch. I was taken back by the magnitude and simplicity of a beautiful, personal hand-written letter. A woman thanked me for sharing my experience with Lyme in the May issue of the West magazine. Her daughter has been sick for over two years and they have gone to many doctors trying to find the cause of her health problems, to no avail. After reading my story, they asked their doctor to test for Lyme and although he was apprehensive, he tested her anyway and she was positive for Lyme disease. Her words just knocked me over, “I know the Lord meant for me to read your article and I appreciate so much that you shared your story. Ellen now has HOPE because of you, DeAnne.”
Typing that sentence out just made me a mess of tears all over again. I called Annette today and we chatted for a while. It was good for my soul. I gave her the name of my Lyme doctor and we talked about God’s provision and his goodness. I was thankful for her card and she was grateful for my story. We agreed that this was all meant to be. Blessed.
Ellen has HOPE because of how God moved through my story. He is the one who should receive the glory. I’m just thankful my God still uses the broken, the messed up, and those of us who are still in process to help others and bring Him praise. I’m humbled. (And I might still be crying…)
A friend posted the days excerpt from “My Utmost For His Highest” and I was again reminded that God uses our stories here and now… not later or when the “miracle” or success comes. He uses what we may think is the “just getting through it” part of our lives more than any success or victory. His purpose is in the process. Oh, how I needed to read this! He can walk on the storms of my life right now…
“We tend to think that if Jesus Christ compels us to do something and we are obedient to Him, He will lead us to great success. We should never have the thought that our dreams of success are God’s purpose for us. In fact, His purpose may be exactly the opposite. We have the idea that God is leading us toward a particular end or a desired goal, but He is not. The question of whether or not we arrive at a particular goal is of little importance, and reaching it becomes merely an episode along the way. What we see as only the process of reaching a particular end, God sees as the goal itself. What is my vision of God’s purpose for me? Whatever it may be, His purpose is for me to depend on Him and on His power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish— His purpose is the process itself. What He desires for me is that I see “Him walking on the sea” with no shore, no success, nor goal in sight, but simply having the absolute certainty that everything is all right because I see “Him walking on the sea” (Mark 6:49). It is the process, not the outcome, that is glorifying to God.
God’s training is for now, not later. His purpose is for this very minute, not for sometime in the future. We have nothing to do with what will follow our obedience, and we are wrong to concern ourselves with it. What people call preparation, God sees as the goal itself. God’s purpose is to enable me to see that He can walk on the storms of my life right now. If we have a further goal in mind, we are not paying enough attention to the present time. However, if we realize that moment-by-moment obedience is the goal, then each moment as it comes is precious.” -Oswald Chambers
These words and the words on the little blue card quieted my doubts and confirmed my suspicions… I simply can’t stop telling my story. I must continue to be vulnerable and honest, even when it’s uncomfortable, even when it’s inconvenient and even when my emotions get in the way. I can’t stop spreading awareness and education about Lyme disease. It’s important, it matters and it’s making a difference. Annette and Ellen are proof that our stories matter and we must continue to tell them, even when it hurts. If my story can help one person, it’s worth the hours, the research, the writing, the interviews, and my energy. It’s worth every single minute.
Give hope. Give life. Share your story. It just may be what someone needs to hear today.