Loving through the Awkward

Today I’m interviewing my beautiful sister and friend, Linda Crews. She and her husband have been married for 31 years and have two adult children. They currently are caregiving for her husband’s Mother who lives with them and has dementia. Linda is a fashion consultant and a phenomenal decorator. But what I’ve been most inspired by recently is her heart for intercessory prayer and an unlikely friendship with a bedridden young woman. This unique relationship intrigued me from the beginning and it has been such a joy to watch it grow and develop over time. 

Since my sister lives 6 hours away I was on the outside looking in for the duration of this friendship and weekly visits. In hearing bits and pieces of her visits with this friend I asked Linda if I could interview her and share in this space and she graciously agreed.

One of the greatest ways we show the love of Jesus is giving of ourselves, no matter the cost, and letting go of our expectations and ways we think we can help someone. Full time caregiving can be grueling and even visiting someone with serious health issues/disabilities can be uncomfortable. But what happens in those divine moments of love and service are priceless. Seminary can’t teach you these things. This blog post won’t get anywhere close to describing it. It’s just a step of faith and trusting that the Holy Spirit will show us how to care and love others well.

I hope today’s post will allow us a little glimpse into a unique relationship that started out a little awkward and uncomfortable but was no doubt a divinely inspired friendship. Maybe getting this view helps us recognize when we’re being called into such a friendship. And hopefully it reminds us  that it’s always worth pushing through the uncomfortable when God calls us to something we might otherwise pass on.

Lean in and listen to what this looked like for my sister and her sweet friend who recently was called to her permanent home in heaven.

Q: Tell us about how you first met Shannon and what your relationship was like with her then. We actually went to the same high school and she lived a few houses down from me but we weren’t friends – just knew who each other was by face. 

Q: How did you reconnect? About 10 years ago I ran into Shannon at a Moms in Prayer group and at the end of the meeting we recognized each other and made the connection of how we knew each other. We spent about 15 minutes chatting about where we were in life. That was it … until 3 years ago. Through what seemed to be a random FB post of a friend of a friend I discovered Shannon was sick  – very sick. ALS was her medical diagnosis and by the time I discovered it she was very far along.

Q: Describe your feelings when you first learned Shannon had ALS  

When I heard the news I just could not believe it. I could see us 10 years ago talking at that Moms In Prayer group. I recalled a vibrant, twinkly-eyed woman a year younger than me who had a business, three girls and a happy marriage and a normal, active life. And now I hear she is in her bed pretty much full time? The thought that kept going through my mind was, “That could just as easily have been me.” I immediately felt a compelling desire to connect with her. Someone from our high school connected me with her husband via text. I explained how I knew Shannon and simply asked if she would like a visitor. He quickly got back to me and said she remembered me and would love a visit. I didn’t know if others were visiting or if they even allowed visitors or if there was some other way I could help. I had no prior relationship to want to visit Shannon and didn’t know her husband or children. I now know that it was a God-given desire that led to a mutually helpful friendship.

Q: What was your very first visit with Shannon like?  I only knew that Shannon couldn’t walk and had limited use of her hands. So on my first visit with her I was a little afraid of the unknown and how I would react. I had a very simple prayer going into that first meeting. “Lord I want to be a blessing to Shannon. In light of being a blessing please help me not to cry no matter what I see when I walk into that room because this is not about me. It’s about being a blessing to her.” 

I had a partial picture in my mind of what to expect when I went on that first visit. I knew she was in a bed and could not use her arms and the last report was that she used her fingers to navigate on an ipad. To my surprise, as I entered her room my first glimpse of her was fairly obstructed by a mask on her face to assist in her breathing. The illness had progressed quite a bit since my last report. It was much worse than I had imagined. I did not want her to feel in that first impression that I pitied her or was scared of her as if her symptoms were contagious. God was faithful to keep the tears back in that very important first moment. 

Her husband stayed in the room with me that first visit and explained a few things to me. It was then that I discovered she couldn’t talk. Inner dialogue with self: “WHAT?!!! She can’t talk?! How are we going to have a visit if she can’t talk? How will we pass the time? This will be a short visit.” I’m here to testify that if you put two women in a room, even if only ONE of them can’t talk with her mouth, they can converse … for HOURS. On that first visit it was a little bit of her husband explaining to me how to communicate with her and what the doctor’s had said but what she was believing. This is when I discovered her faith journey and her belief for her healing. At the end of that first visit I wondered if they would want me to come back. I texted her husband the following week to see if Shannon wanted another visit from me, and she did. Over the next month we just took it week by week. I didn’t assume she would want me to return and they didn’t assume I would want to return. It was a little bit of me learning how to communicate with her and how to raise and lower her bed as needed mixed with discovering what type of books she liked. By about the fourth visit we were in our groove with a routine that suited us both.

Q: Can you describe her physical condition and her daily setting  

She couldn’t move anything except her mouth and her eyes. She couldn’t speak and she couldn’t breathe without the assistance of a machine. Her doctor would come to her to do some therapy and treatments weekly. The caregiver and her husband kept her arms and legs moving on an exercise mat there in the room. She watched tv and youtube and sermons and napped. She was still as sharp as ever.

To communicate she would spell with her eyes. Here’s how it worked. I would ask her “Does the first letter of the first word start with a letter in the first half of the alphabet? “ If yes, she would cut her eyes to the right. Then I would go through each letter A, B, C, D and when I hit the right letter she would cut her eyes to the right. If the letter was in the 2^nd half of the alphabet she would not move her eyes and I would know to start with L, M, N, O. I had to go slow so she had time to cut her eyes. I was terrible at it and we had to repeat multiple times. She was so patient with me when I would miss the letter and have to start over and then my retention was only about 3 letters so I had to write it down. 

The only way to know she needed something is if she cut her eyes repeatedly to the right then it signaled she wanted something. Her husband was great at communicating with her. They were never able to get a computer with the eye recognition to spell easier because the head had to be lined up so perfectly to do that. She had to have her head turned to the side and positioned just right to breath and to keep the mask from hurting her ear. 

Q: Tell us about Shannon – what is she like? What do you admire about her? Oh my goodness. Shannon was so positive and so cheerful. When I would walk into her room each week I could sense the Joy and the Presence of the Holy Spirit in that room. His Spirit was not only in her but upon her for ministering joy and peace to others. Her illness wasn’t contagious but her Spirit sure was. 

Her eyes just sparkled full of hope for her healing and faith for better days when her healing came. She believed with all her heart that Jesus was going to heal her. People think “Ah yes when she gets to heaven she will have her ultimate healing.” But that wasn’t what Shannon expected. She believed Jesus was going to heal her THIS side of heaven. She never doubted it.

She kept her sense of humor through her illness. Oh yes, she not only laughed with me but AT me. I remember telling her one time about someone who had an arm in a cast and couldn’t bend at the elbow. Agonizing with the prospect of being in that condition, I commented:  “That would be awful. I mean could you imagine not being able to scratch your nose if it itched?” And it actually took me about 6 seconds before I realized what I just said to her, the one who hadn’t been able to move or speak for several years. She laughed so hard AT me. I just wanted to slither out of the room in embarrassment. But she didn’t make me feel guilty, instead she found humor it my humiliation rather than reason to wallow in self pity. 

Even though she was fighting for her own life, Shannon partnered with me in prayer ministry. I would tell her about various prayer requests of people in my life and the story behind the prayer needs. I would take her hand and just ask her to pray with me in her spirit.

One time I came for the visit and she had ordered a book for someone I loved. I had told her about this situation that needed prayer. She not only prayed with me but then ordered a book and told me to have them read the book. She entered into ministry with me.

Q: How long did you visit with Shannon? We visited together about 2 ½ years. There were a few times I had to miss several weeks.

Q: Was it ever uncomfortable visiting? How so? Yes the first month was the most uncomfortable. We were both establishing a new friendship (without her ability to talk and my limited ability to spell correctly with her eye movements.) I was learning how to watch for choking and how to raise and lower the bed and mover her head, etc. That required energy and effort. But once we got in a routine it was much easier. 

There was one visit that was particularly difficult. She had experienced a very big disappointment that I know she would prefer to remain private. When I sat down with her for our visit, I could see she was distressed about something. No words. Tears. I asked her what was going on. She spelled out: I need your prayers. I’m WEARY. It makes me cry now as I recall that moment. I asked the Lord to give me the response that she needed. I trusted that He loved her much more than I did and He would answer that request. 

I let her have a moment and then I said “I don’t blame you. I would be weary too. And I began to tell her what a champion she was and how courageous and long suffering she had been and how hard to experience that disappointment and not walk and not talk … but how much God was pleased with her that she never shook her fist at God, but only and always declared His Goodness” I picked up her white board and together we made a gratitude list. We took turns. I wrote something she came up with then I came up with something. Back and forth we made a long list and then we played a worship song on Youtube and rejoiced. She was so amazing. Not many people would be as easily turned from weariness to rejoicing as she was. 

Q: You were working full time and caring for your Mother-in-law in your home when you first started visiting Shannon. What compels you to keep showing up weekly with all you have going on? It was two-fold. The Holy Spirit must have given me the desire to be a blessing to her because I didn’t even know her. She was a mere acquaintance and I had one conversation with her 10 years earlier. But once I got to know her, she was a blessing to me. I was going through a dark time with someone I loved, and she encouraged me so much and entered into that WITH me. She listened to me and then prayed for me and then always checked back up on the situation. 

Q: You visit Shannon every week on a certain day at a specific time. What are some things ya’ll do during those visits? I would hold her ipad so she could see it and check her kids FB page so she could see their posts. We would listen to a worship song on Youtube and sometimes a Pet Collective because she loved dogs and they always made her laugh. I would give her an update on my life and then ask her for any updates. Then we would read from Poldark. She would sometimes fall asleep while I was reading and I would insert some nonsense into my reading and she would smile and open her eyes. Other times I would say “WAKE UP! This is a scene with Ross and Demelza” and she would pop open her eyes. I would pray for her body to be healed either at the beginning or the end of the visit. Before you knew it two hours was up.

Q: What has Shannon taught you from your visits with her? Joyfulness and Peace isn’t something that happens to you. It’s a choice for believers. If you dwell on your circumstances you will only magnify the suffering. She lived the refrain of the old hymn Turn Your Eyes Upon Jesus.She could have compared anyone’s situation with her own and won the ‘whose got it worse award’ but she chose to enter into the suffering with others and pray for them. I had many friends and acquaintances with much easier life circumstances than Shannon, but who complained louder and experienced more misery than she did in the two and a half worst years of her life. This really stood out to me.

Q: What is your favorite thing about your visits with Shannon?

Seeing her big smile on her face when I walked into the room. She had this slightly mischievous grin about her. She could light up the room with her smile. Seeing her laugh. Seeing the love between Shannon and her husband, her high school sweetheart. Oh that amazing love was so inspiring. Reading Poldark with her. Do I really have to pick one thing?

Q: What are the hard parts of your visits?

Seeing her prayers not being answered the way she sincerely and faithfully believed.There were a few times I sat in my car outside her house and just took a deep breathe and prayed for God to  lighten my spirits so that I could be a blessing for her during that visit. 

Seeing her husband growing tired but standing by her side, contending for her healing was both inspirational and sad at times. Once I brought a few people over to pray over Shannon and then we prayed over her husband to be refreshed. Silent tears poured down his face. I could see the suffering of a husband who loved his dear wife and was watching her suffer without the ability to stop it.

Feeling like I didn’t have time to fit one more two hour anything into my week but knowing that she was the most deserving of all of the things I was doing created an internal tug on my priorities.

Q: Do you ever leave feeling discouraged and heavy-hearted for her? How do you protect yourself from being overwhelmed with ache on her behalf? Do you feel this is this part of the process of comforting those who are suffering? 

Absolutely we are to enter into the suffering with other believers. We rejoice with those who are rejoicing and weep with those who weep. 

I Cor 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.

When we have been lonely and been blessed by a visit or a comforting word at just the right time, that equips us to pay it forward for someone else.

I would at times leave with a heavy heart or just fatigued. When my plate was full of emotional challenges at home, I found it harder to walk into our visit as a blessing. But honestly, she had the spiritual maturity to enter into my challenges with me in prayer. She had so much joy that it spilled over to me. I didn’t always have to ‘protect’ her from my heaviness. What started as a friendship with my goal to be a blessing to her, ended up being a very mutual friendship. We blessed each other. 

Q: What advice would you give someone who is considering a ministry of encouragement through visiting a shut in. 

I think the most basic place to start is this simple prayer, “Lord help me be a blessing to this person. Show me what it looks like to be a blessing to him/her.” Don’t assume that what you think will be a blessing will be. I discovered that the things I thought Shannon would like, she totally did not. Ask, don’t assume, what they would enjoy or value.

Give it a little bit of time to adjust to a routine that fits for both of you. And don’t assume they will want your company. Ask if they would like another visit. They may or may not. 

Start with short visits and over time increase the duration if you both have the capacity for that. It’s better to come for the first visit for just half an hour and leave wanting more time than to overstay.

If there is a caregiver, talk with them to get some input on best practices for a good visit. But don’t assume the caregiver can 100% speak for the person. Follow up with asking the person how they would like to spend their time.

Q: I know you and Shannon prayed for healing for her. This is such a personal issue. If you’re comfortable sharing can you speak to what that is like to pray for healing for so long and still not have received the healing.

IT SUCKS!!!!

Whenever we choose to participate in any ministry that give us the opportunity to pray for healing, it’s an invitation to experience defeat as well as victory. If we pray for the sick we will have thrills of victory, but also agonies of defeat. I have decided not to let my defeats, like the loss of Shannon’s life after two + years of praying for her, stop me from praying for others. If we all avoided praying for the sick because of the risk of defeat, nobody would get healed. To pray for the sick, to see them healed, we must be willing to embrace emotional disappointment and suffering, i.e. the cross of Luke 9:23. To be involved in healing prayers you must be willing to embrace emotional pain and be willing to say “I don’t know.”  So what is it like to pray for long and still not have received the healing? It’s disappointing, sad, and discouraging. 

Q: How has visiting Shannon impacted your life? There isn’t a single time I complain that I don’t see her face and think to myself, “Wow, did you really just say that?” But I have learned the difference between sharing my disappointments and hurts with God and complaining about a situation. I also know that any time I’m having a bad day for whatever reason, I remember that Shannon found a way to be joyful every single day she was breathing. She was always heavenly minded and that has challenged me to be more heavenly minded than earthly minded. It’s one thing to know intellectually that joy is a choice, like Paul writes about from prison. But it’s quite another to see it played out right in front of your face week after week after week. You can’t fake that kind of joy in those kind of circumstances.  

Q: What do you want others to know about the power of a weekly visit? Her husband told me that she always looked forward to our visits. One day Shannon told me that she enjoyed our time together because it felt like ‘girl time’. I think our visits made her feel connected which made her feel like there was some sense of normalcy in her life.