By Karen O’Connor
“Karen, I fell last night.”
I opened my email one morning to read these words from my sister June. Within a few days I received a similar message. June had fallen again—this time on the driveway as she walked to her car. And she fell another time while going to the kitchen for a drink of water in the middle of the night. I worried at this sudden change. June had experienced good health most of her life. I encouraged her to see a doctor.
My daughter then told me she’d noticed June’s speech sounded slurred. How strange, we thought. June had been a college professor for nearly 40 years. She was known for her presence in the classroom and her distinct and confident voice in front of her students. This was very unlike her.
I accompanied her to the university one day several months after the falls. I was to be a guest speaker. But when we arrived I realized I’d have to supply the energy that hour. June appeared weak, distracted, and fatigued.
Symptoms escalated over the months as she made the rounds to various neurologists. Not one could pinpoint her condition. All agreed, however, that she had something similar to Parkinson’s Disease, and yet not that. More recently the consensus is Multiple System Atrophy, characterized by tremor, rigidity, slurred speech, a decline in the use of her hands, and slowing of all motor functions. There is no cure for MSA, and it is unresponsive to medication.
Changes Continue for June
June’s husband, Harry, died in May of 2013. By that time June’s condition gradually worsened. She needed a walker to get around and driving became a challenge. Reluctantly she moved to a small home in a retirement community. More recently she relocated to an apartment in the main building of the campus and then a month later she moved again—this time to the skilled nursing unit where she could receive 24-hour care as needed. She can no longer type or write or speak clearly.
Her latest communication, which I received as I’m writing this, was written by one of her caregivers. “I seem to be declining with greater difficulty speaking. It is hard to be hopeful, although I have had good moments with Meagan (her daughter) and with Kevin (our brother) and with the people here.”
When I spoke with June months ago before her speech decline, she shared some of her fears and worries and I took notes. “I want to be accepting,” she said, “but I’m scared of becoming totally dependent on others. I’m jealous of people who are well. I’m anxious a lot and I cry easily.”
Then she shared a most telling statement. “I know that acceptance is the key to freedom, but it’s hard to accept this. I had so many dreams, but now my bucket list has only one item: to die early.”
We paused for a moment while she wiped her tears—and I wiped mine. Then I asked, “Are you mad at God?”
She was quick to reply. “No. I’m just very sad. There are so many ‘I don’t knows’ in the medical field that it’s difficult to hang on. Friends in my faith-share group tell me I’m an inspiration to them. But I don’t want to be an inspiration. I want to be well!”
She wondered aloud if she’d be around to help her daughter choose a wedding dress, to visit me in my home, to travel to places she’s always wanted to see. “It’s gratifying to know that over the years,” she said, “I’ve blessed a lot of people in my work and in my friendships, but still . . .” Her voice drifted off.
I wanted to cry with and for her—and have many times since. June and I have been good friends our entire lives. We shared a room while growing up, we gave each other advice on marriage and child-rearing, and we talked through our spiritual struggles, encouraging one another when we lost sight of what really matters—turning our wills and our lives over to the care of God in the good times and in the tough ones.
“I believe in the light of Christ,” she said, as we talked about her faith at such a time, “but honestly I don’t always feel it. Yet I pray each day for the comfort and infilling of the Holy Spirit.”
I sent her a list of “10 Bible Verses for Comfort When You’re Hurting” that she told me, after reading them, have given her hope and encouragement.
1. Job 5:11: “The lowly he sets on high, and those who mourn are lifted to safety.”
2. Psalm 27:13, 14: “I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.”
3. Isaiah 41:10: “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand” (New Living Translation).
4. John 16:33: “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
5. Romans 8:28: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
6. Romans 8:37-39: “In all these things we are more than conquerors through him who loves us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”
7. Romans 15:13: “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”
8. 2 Corinthians 1:3, 4: “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
9. Philippians 4:6: “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done” (NLT).
10. Hebrews 13:5: “I will never leave you nor forsake you” (New King James Version).
Changes Continue for Our Family
It has been a challenging two years all around. I used to be able to visit my sister regularly, but then my husband was diagnosed with cancer in the fall of 2014 and died four months later. As June’s ability to communicate diminished, our contact lessened. Phone calls became almost impossible unless a caregiver or friend was nearby to help interpret June’s words. I missed her comfort as I went through my own grief over my husband, and she missed my words of comfort for her. I turned to text messages and emails even if she was unable to respond to them.
A few months ago we received an exciting piece of news. June’s daughter Meagan announced her engagement to her longtime boyfriend, Spencer. Suddenly everyone in the family perked up, rejoicing over this wonderful event that occurred on June 20, 2015 in Los Angeles, not far from where June lives.
I was so happy to hear that my sister was able to be part of the decision about the wedding dress and to select an outfit for herself as mother of the bride. She was radiant that day!
None of us knows exactly what the future will look like, but of one thing we can be confident. When darkness comes, the only relief we can count on, whether as the sufferer or the one standing by, is the light of Christ. May my sister June and each one of us rest in that truth.
Karen O’Connor is a freelance writer from Watsonville, California (www.karenoconnor.com).