“My faith was sorely tested when my husband was diagnosed with ALS”

An avid New Church woman all my life, my faith was sorely tested when my beloved husband was diagnosed with Lou Gehrig’s disease (ALS) in 2001. A friend wept when hearing the news, remarking, “You two are inseparable. How will you manage?” I had no idea. Twelve years earlier in Wales my dear mother-in-law had died of the disease, so I knew its fatal nature.

Unable to sleep for three nights, I kept crying to David, “But I don’t want you to die!” His calm response was, “I don’t think you have any control over it,” which belies his sadness after realizing he would only have a short time left here, unable to physically see any but his first son married or to see his future grandchildren. David loved kids.

As I look back on the two years David had after those dreadful words, “You have ALS,” I realize I lived a nightmare. I lived one day at a time, celebrating David’s good days, but noticing the gradual removal of the things he loved and the relentless progress of the disease, despite heroic efforts at an alternative medical clinic. The disease gradually kills the neurons that control the muscles. It has no known cause or cure. Eventually it targets the respiratory system, leading to death without a ventilator. Those initially choosing the ventilator often have it removed as it’s really not living, and David knew that immediately.

David became unable to do the things we take for granted. He progressed from a cane to a walker, then to quadriplegia. His ability to swallow deteriorated until he could only drink thickened liquids. Even food became too difficult to eat. By the spring/summer of 2002 he had to stop attending church—the beloved contemporary service in Bryn Athyn in which he’d played such an active part.

David, an “atheist” when we met in college, had eventually become an ardent New Churchman, growing to love the teachings. The hardest thing about ALS was David’s being unable to communicate. His last weekend in this world he was unintelligible so we had to use intuition, the final insult to a man who loved talking with others. Another ALS patient I started visiting a year after David died felt the same way. The last Christmas we all had together with David (2002) was spent in his room: bitter-sweet, with many tears. We knew this was his last; he had been put on hospice care that fall.

The Solution

“Wait on the Lord, be of good courage, and He will strengthen your heart, wait I say on the Lord” (Psalm 27: 14).

This scripture passage inspired us both for 20 years, yet how was I going to be courageous? As David’s natural body deteriorated, his spirituality increased amazingingly.“ I am a cheerful spirit in a dying body,” he said, and he was. As he approached each new hurdle he was sad but then accepted it. He wept when he heard our third son was being married the next year, knowing he would not be there. But he recovered when I said, “Of course you will! You’ll be with me!”

Yet with all this sadness, there was a lot of joy. The love the church community showed has stayed with me ever since: their shopping for us, bringing dinners, visiting David. Initially these friends came to help David, but, inspired by his spirituality, they found David helping them. These dear folks were showing charity in action: living their faith. In January of 2003 David’s window of life here was getting smaller until it was restricted to just our bedroom. Everything else ceased to exist for him; I know he loved his family and friends and often thought of his parents who predeceased him. He felt his mother’s presence whenever he had good thoughts.

As David’s body deteriorated, I didn’t want him to stay here. A couple of weeks before he died I begged the Lord to take him—otherwise I would die too (I was physically and mentally exhausted) and my prayer was answered. I wanted him to be free, even if it meant letting him go. Despite my anger I knew the Lord was really looking after me. Church services often unlocked my grief, which enabled others to comfort me: a most amazing nurturing.

The weekend before David died was one of contrasts: one day sleepy, the other restless. His last morning here was amazing. He asked to have all his sons with him then told me he was afraid to die (it took a long time to decipher all this). I know I quoted the 23rd Psalm to him even though I can’t do that now. I told him his parents were waiting, but he was still anxious. So I told him how much I loved him, how much I would miss him, but how I wanted him to go. Each member of our family spent time alone with him. As he was dying our room became alive with caregivers, friends and family: a veritable sea of people who wanted to be with him. He died surrounded by loved ones sitting next to him holding his hands, even after his spirit had left.

I felt light—no more care-giving— and I was surrounded by loved ones. How did I deal with the “crash” after they left? I still grieve for my natural loss, but love feeling him with me. David and I had many wonderful years prior to his death. Before he died I asked him to “haunt” me after he left, to which he laughingly agreed. As his body deteriorated and our natural marriage was severed I felt as though something soft and gentle was holding us together; perhaps this was a new spiritual connection not apparent before.

We knew we wanted to be together forever, working hard trying to communicate better and following what the Lord taught. Through ten to fifteen years of marriage enrichment groups and many church summer camps, we enjoyed each other’s company and loved going to church together. I always knew David would be the first to die; I just didn’t expect him to be quite so young (54). I wondered what the “spirit of the one who had died dwelling with the one still on this earth” could/would be like (Married Love 321). I didn’t have long to wait.

The outcome

At the crematorium, watching David’s earthly remains loaded into the furnace, wistfully thinking he was no longer there, I felt him stand behind me. I remember thinking “Oh, David’s here!” then realizing just what that meant, which made me cry. He had not been able to hold me for months, had not stood for almost a year, but here he was standing “holding” my arms. Was this my imagination or real?

My answer now is real! I have felt him with me ever since and so have some of my kids. Sometimes it’s as if I can reach out and touch him. Other times he seems more distant. Thoughts come into my mind that I sense are from him, and I get insights I didn’t have before. I am convinced my desire to help others spiritually is from David. He had considered the ministry two years before he became ill.

My life is quite different from before. I am more sure of where I am going, even in this new direction. I feel called to move out of my comfort zone and take risks to help others spiritually, to really live my religion. I believe David is my spiritual supporter in ways I can only imagine. I know the Lord needed David to be fully present in the spiritual world, even though it was so devastating, and since then I feel much more connected to that world. It’s as though I have “one foot already there,” as a fellow widow described it. I feel I am getting closer to the spirit of the following verse from one of my favorite hymns:

“Humbly, Lord, we ask Thy blessing; keep us, Father, in Thy care. Let Thy grace descend upon us, as we turn to Thee in prayer. “