The Ocean

In mid to late summer of last year my MS took another noticeable swing at me that affected my day to day life. Over the years it had already made itself obvious daily, but it decided to add a bit more heft to it’s punch. I’ve always described my experience with MS as a battle because I have to war against it so the only thing it can take from me are physical abilities, not my mental toughness, joy, peace, or purpose. Each time it strikes and takes a physical toll I go through another war within. I wrote the following in late October last year and decided to share an edited version of it here. Everyone wars with something. Maybe you can relate and this will give you the same hope it gave me.

The past few months I’ve thought a lot about how small my life felt it was becoming as a result of not having the energy to get out and do things on my own much. I struggled to find a peace about it but it was elusive. If social media was to be believed, everyone else in the world was busy doing fun things and living relatively large lives compared to mine. It left me feeling that life was passing me by and I was a passive observer rather than an active participant in it. I have prayed a lot about this and the widening void of frustration that inevitably comes over the course of living with, what has been for me, a slow progression of disability from M.S. these past 29 years. The answer came slowly and in pieces but did ultimately reach a watershed moment as I was driving one morning. My daily Bible study had been in I Peter for a few days. I kept thinking about all the things that Peter had seen, heard, and experienced over the 3 years he had spent with Jesus and how they had ultimately persuaded him to believe that He was the true Messiah. I know he had many memories that convinced him, but to me walking on the water has always seemed right up there with seeing people raised from the dead. When the apostle Matthew wrote his gospel he remembered how everyone in the boat that night had been scared upon seeing Jesus walking toward them on the water. Matthew recorded that Jesus recognized their fear and said, “Take courage! It is I. Don’t be afraid.” (Mt 14:27). Peter replied, “Lord, if it’s you, tell me to come to you on the water.” (vs 28). Jesus told him “come” and Peter “got down out of the boat, walked on the water and came toward Jesus.” (vs 29). Matthew recalled there had been a wind that night and the waves were choppy (vs 24). Peter hadn’t gotten very far before he noticed the strong wind and became “afraid” (vs 30). It was at that moment that Peter took his eyes off of Jesus and the impossibility of what he was doing hit him. Impossibility. That word jarred me when I went back to read the story. Peter was doing something that was absolutely impossible. I identified with impossible. At times it has seemed impossible to live a full life with M.S. You know the rest of the story. Peter called out and said, “Lord, save me!” (vs 30) and “Immediately Jesus reached out His hand and caught him. ‘You of little faith,’ he said, ‘why did you doubt?'” (vs 31). They climbed back into the boat and “those who were in the boat worshiped Him, saying, ‘Truly You are the Son of God.'” (vs 33). It’s all about perspective, really, isn’t it? It was stranger to Christ why Peter had taken his eyes off of Him than the fact that Peter realized he shouldn’t have been able to walk on the water in the first place!

This thought was already simmering in my mind when I heard the song Oceans by Hillsong UNITED (a contemporary Christian music group) come on in my car that morning when everything came together for me. It’s kind of a long song, but the words that got me were about how His grace abounds in the deep oceans of life, and that His sovereign hand will always guide me. I may not be able to walk when fear is all around me, but He will never leave nor fail me. When the oceans rise, I will trust Him and rest in His embrace. I am now convinced that THIS is the greatest experience of life. Going wherever He leads me, as the song says, “Where my trust is without borders; Take me deeper than my feet could ever wander; And my faith will be made stronger; In the presence of my Savior.” (Songwriters: Joel Houston / Matt Crocker / Salomon Lighthelm Oceans (Where Feet May Fail) lyrics © Songtrust Ave, Capitol Christian Music Group 2012). I immediately understood exactly how I was going to get through this. I had been thinking of myself and all the things that I couldn’t do and my eyes were focused only on me. With a lot of tears my mind cleared and I realized that if I refocused my gaze upon Christ then I would stop worrying about and thinking of the life I felt like I had lost. God’s hand is with me in these deep waters. I absolutely will drown if I try to get through this thinking about all the things I can’t do, like Peter, the impossibility of it all. This is the very moment in my life when my eyes MUST be on Jesus. He won’t leave me here to drown in this disease OR in the frustration it has brought.

I have had some pretty crummy MS days since this epiphany and you know what? I haven’t had any of those previous thoughts about life passing me by. Matter of fact, I’ve felt more loved by Him and at peace than I have in a long time. I feel like I see and feel the hand of God upon me more than ever before. I think it’s because I have never been in such deep waters in my life. Some refer to this feeling as a “mountain top” experience. It’s as if I can see much further across the valleys of life now. The view is pretty breathtaking up here and I don’t want to come down anytime too soon.

I got off of social media for a while following this experience because I realized it had played some role in my feelings.  I’m back on now, but I only check it once a day instead of, well, a lot.  I can testify that this decision has helped me keep a better perspective on life, too. 



2 thoughts on “The Ocean

  1. Amy,
    Thank you. This brought tears to my eyes. I felt that I have gone on this journey in different experiences in my life. With losing my parents I felt the deep sadness but I believed in the greater reward which made me feel as I was seeing life from the “mountain top.” I’m not saying I’m an expert at grief just that it doesn’t overwhelm me because of the great joy that is ahead.
    My struggle now is seeing Kenzie suffer the way she does. Like any chronic illness warrior your days are different and it appears life is passing you by. Social media often reinforces the idea of “keeping up with the Jones’s”. The daily reminders that my life with chronic illness is not the same as my peers can be damaging at times. The idea of what we had in mind for her as well as what she thought her life would be like at 15 is much different than what it is. This is the part of grief I have not overcome. It is a struggle for both of us. As a parent I am in this journey/boat with her and I am ashamed to say the rough waters have been overwhelming at times. I’m not sure if it’s my pride and that I wanted so much more for her that prevents me from seeing that God’s got this. I’m working on my faith everyday. The idea of chronic illness taking away her dreams and goals is a hard one to swallow. I keep reminding myself that my plans are not His plans but in all things we need to bring glory to His name. We are learning to adapt and adjust our expectations of what her life might be like. I have been going to the word to calm my fears about this. I happened to be reading 1 Peter chapter 1 last night which reminded me that our heavenly gain is so much more than the struggles of the flesh. This calms and soothes my anxieties and reminds me to trust. Thank you for sharing this perspective Amy. My prayers are with you. Lord willing we will be on the mountain top together one day.

    Liked by 1 person

    1. One thing I know, it will be worth it all. I often think of you and Kenzie and pray for you. It is not easy, but nothing worth having ever is. Love to you, my sweet sister 💖❤️💕.


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