Saturday, August 6, 2016

A Decision to Live

I have been very disturbed this week, as I've read articles and watched interviews, regarding a lovely teen girl in Wisconsin who has chosen to end her own life... and thousands of people are praising her for being brave and strong. This girl has the same disease as I do - Spinal Muscular Atrophy, and has decided at the age of 14 that she doesn't want to deal with the pain and limitations anymore.

I don't know if this young lady has gotten wrong medical information, has poor role models, or is watching the wrong kinds of movies. But whatever has caused her to want to give up, it deeply breaks my heart. I want to sit with her, tell her my story - and Kevan's story, and Joni Eareckson Tada's story, and Nick Vujicic's story, for that matter! She is not alone in pain and weakness and weariness, and this is not the end of her story!

The crazy thing is, when I was 14, I was in the hospital with pneumonia and a collapsed lung, and the doctors told my parents I probably wouldn't make it. At that time, in the midst of incredible pain and weakness and feeling like I was slowly drowning, I could have very easily given up. The short term prognosis was bad, but the long term prognosis was worse - that it was very likely I would be hospitalized many times in my brief life. I had a critical decision to make then, and I chose to live. I was able to do it because of the hope and peace and strength Christ has given me.

I have had to make the decision between life and death countless times in the nearly 20 years that have passed since then - on hospital beds, on ventilators, and in my own bed at home. Choosing life is incredibly difficult sometimes. I wrestle with depression and frustration in my weakness and limits, and I battle with thoughts of being a burden on the people I love.

As a true follower of Jesus, that decision is more complicated than you might think! I often think about what heaven will be like - no more pain, no more weakness, no more limits! I'll get a new and improved body, and I can tell you right now that I will be unstoppable, making up for many years of missed-out activities like mountain climbing and scuba diving, and dancing - SO much dancing! Sometimes I get so homesick, its all I can do to not beg God to let me get there already.

But then... I remember that Jesus came so I could have life to the fullest (John 10:10), and that God commands me to choose life, that I and my family might live (Deut 30:19). He is the Author of Life, and the Giver of All Good Things. And he knows the good plans he has in store for me (Jeremiah 29:11). He knows the number of my days, and he has a perfect plan for each one. Why would I throw away his precious gift of life? Why would I give up and quit before his plan is fulfilled in me? That wouldn't be brave; that would be cowardly and selfish and the weakest thing I could do.

I've been thinking this week about all the incredible, beautiful moments I have experienced since I was 14 years old. In choosing to live, I rejected my own self-pity and all the easy excuses I could use to be worthless. I found true joy in life by doing hard things, taking risks, trusting people, and researching the best ways to care for this frail little body I've been given. Every morning, I chose to get out of bed and keep breathing, keep smiling, and keep moving. I choose to not let my disability rule over me, but defy every limitation in the name of Jesus, and with the help of amazing friends and family who love and support my choice, not just to exist but to truly live. My relationships have been so rich and full, because they've taught me to trust others and receive help, and they've taught my friends a whole new level of creativity, selflessness, strength of character, and love.

Choosing to live is a hard thing to do, but it is the very best thing. It is the only truly brave, amazing, praise-worthy thing to do. Every day is a new adventure, when I remember that I am not alone. Jesus is with me, to give me strength to live, and to carry me through my weakness. In him, I am limitless and strong.


  1. Connie, I just wanted to let you know that this is very inspiring. Jesus truly works through you.

  2. Connie, this was great. I would like to undertake a bit of translation to share some of your material with those in the marginalized community of differently abled. My wife has a good friend who has CP and she is a Christian who has published a few small poetry booklets. I would be nice for you to be able to get to know each other, but I don't know how the language barrier would be overcome.