I am currently reading the book, Joni & Ken: An Untold Love Story. Prior to its release last year, I think it is a safe assumption to say that when in conversation, if the name, Joni Eareckson Tada, should happen to be mentioned, most anyone could say a few common knowledgeable facts about her life: quadriplegic due to a diving accident as a teen; writes books and draws amazing sketches or paints with her mouth; founded Joni and Friends, in which works with the disabled community throughout the world. Through Joni and Friends, many more around the globe are touched through outreach ministries of the organization, such as Wheels for the World and Joni’s 5-minute radio broadcast aired daily.
I realize that this could just be me. However, I might add another bold assumption that while Joni’s name and story is universally known, her husband’s story is not. In fact, I couldn’t have even told you his first name or what he looked like (not that it matters) or anything about his walk with God and with being married to Joni. So as much as I have enjoyed being deeply encouraged again by Joni’s testimony, I am even more so inclined to Ken’s story.
And I think I know why: because in my life–I am “Joni.” In this book, though I have never been quadriplegic nor have I had breast cancer, I relate to Joni. She speaks of emotions and questions and a longing for Heaven that I understand; It comes with the physical suffering. Still God has given her daily strength, grace, good humor and an abundance of helping hands–Joni responds with praises in all circumstances. In reading the testimonial of the Tada’s marriage and faith in all things, I am seeing God’s hand working in Ken’s life. And in a way, I am seeing my family there too–the caregiver.
There are no words, really, to describe my family. The past twelve years since diagnosis has most likely been just as crazy of a whirlwind roller-coaster ride for them as it has been for me. For me, it has taken years to finally release the guilt, comes with the likeness of a heavy disease, that I am not a burden…not necessarily “me,” but the extraness, expense, inconvenience of it all. It effects everyone. (I sometimes wonder if Joni has ever experienced this same guilt feeling?)
Over the past few months of physical changes, I realized the once-removed guilt thoughts had returned. I am in process of starting to depend on care from others more than I ever had before. It has been humbling and frustrating and definitely an area in my life in which God is working with my stubbornness in just simply letting go and asking for help when needed. What has come to mind in this reading, thinking of caregivers is that it probably can be just as frustrating watching someone fight so hard against simply asking for help. I just smiled to think of the moments when I am trying to open something in the kitchen and after many (many) minutes, Mom will approach and I turn feeling half-defeated (pride)/half in gratitude for her presence as I hand her what I cannot open. “Determination,” I told her once. She said she knew…didn’t have to say anything else. 🙂
I’ve never thought of my family in terms as “caregiver.” I had always reserved that title for association with elderly and nursing homes. But my family is my caregivers: they care and they give. So as I finished a chapter in the book two nights ago, I was in thought by a story that happened to Ken. Joni, home recovering from her breast cancer surgery, was relaxing in the living room. Ken decides to use the time to get the patio ready for the upcoming July 4th holiday with friends. Going into the garage, he needed to move the car and as the radio came on, so did a Joni and Friends 5-minute program that he had never heard before. Joni said:
Life is hard for people in wheelchairs…but it’s just as hard when you’re the caregiver. So let me take a minute and pray. I want to pray, not only for you who are listening today who might have a physical disability, but [also] let me pray for the people who help…
Joni & Ken: An Untold Love Story. Ken and Joni Eareckson Tada with Larry Libby. (Zondervan, 2013. pg. 29)
It was then that Ken realized Joni prayed for him. And I sat there…such a simple yet profound gesture on my part in return for my family, my caregivers. Yes, I pray for them, but never talking to God about all that they have done for me…never asking on behalf of their bodies, for continued peace and strength as they continue to help my weakening one. And through this new way of prayer, I hope to see my guilt cease and praise to God in all thing increase.