Images of Patty McKellar courtesy of her husband, Judson

By Fletcher Lowe

My longtime friend Patty McKellar died of a disease that still strikes deep fear in many of us. Amyotrophic Lateral Sclerosis, or progressive muscle weakness, is the disease that shortened the career and life of the beloved baseball player Lou Gehrig. It summons fearful images of paralysis and helplessness. But Patty was emotionally and spiritually strong, and touched by the presence of Jesus. Here are some of her reflections on living with ALS.

Visited by Jesus

I had just started to pray. Lying in bed is where I most like to pray. I was just settling into it, when I had something that I don’t know what to call — a vision perhaps, or an appearance. It was in my mind’s eye, not like I see you but it was as real as I’m seeing you, yet different. Coming slightly from the right, Jesus was walking down a path toward me. I could not see his face; it was blurred. But everything else was distinct and it was very normal and very natural. And I responded normally and naturally: “Hello, my friend.” Then, I thought, that was the way I would greet the children at the preschool where I used to substitute. I would say, “Hello, my friend.”

Talking to him just seemed so natural and normal. It didn’t even surprise me. And he has been with me ever since, on the right side, always on the right side. That was the side of my body that was still good then. The left side had already atrophied significantly so that I felt little energy there, but I still felt good energy in the right side. So my guess is that energy had something to do with my experiencing Jesus coming to the right side.

A Glimpse of Eternity

What I experienced was this: imagine a totally gray scene above and below the horizon line. Totally gray. Right along the horizon line was a little slit, as if someone had taken a knife or a pair of scissors and made a little slit, a very short one along the horizon. Coming through it was a pink color, sort of a glow back in there. The shade of pink was about midway between rose quartz and raw salmon. It was sort of glowing as if coming from a light source. And I felt myself being pulled toward that little slit. But before I got there, I simultaneously heard myself and felt myself breathe in very quickly through my BiPAP machine — just a quick inhalation. And then I felt myself moving back from the slit and that’s when I woke up and thought to myself: “Gosh, I just almost slipped away!” And the slipping away would have been as if I had slipped through the slit, but I never got to it.

On Loss and Grief

The doctor tried to hedge about the diagnosis, but I knew it was ALS. And he finally conceded that, “Yes I think it is ALS.” But then I had to tell [my husband] Judson and the girls. And that was the hardest. Seeing the grief in them was very hard. After that, as the physical changes came, as the losses of abilities came, I had to grieve each one. Sometimes they were weekly, sometimes they were daily, but my pattern was to see the loss, feel it very intensely, cry, and then move on. I don’t think I really had to cry more than once for each loss.

I seemed to have skipped over denial. I get angry at the disease. I never felt angry at God. It’s just that I’m angry that the disease exists. I am angry that the molecules in the world come together in such a way as to cause this disease. And that does make me angry. And the anger still crops up occasionally.

Coping

ALS is a disease of the motor neurons burning themselves out too quickly. You have a finite number of firings in your motor neurons. So if you choose, you could not exert yourself at all and live maybe two or three times longer than someone who chooses to just keep going and doing. So what if the neurons do burn out? I have chosen that way: to do whatever I can do for as long as I can do it because I love to do it, whether it was my gardening or just sweeping the back porch. I love manual labor, always have. And Judson would sometimes say: “Patty, don’t burn out your neurons sweeping the back porch.” But I loved to sweep! So that’s my choice. And people have said, “Save your voice; only talk when it’s important.” That doesn’t seem quite right to me. I just want to use it until it’s gone, even if it burns out faster. So I just think it’s a choice. Do you want longer or do you want more active? Well, for me it’s more active, but for others longer is better.

I choose this as my quality of life. But others may choose another way as their quality of life; it’s just a different way. It may be more important to them to just simply be with their loved ones longer. For me, the length of time is not important. That sounds hard and cruel, but there is a continuity before and after death that seems to make that not very important. It seems unimportant that my body in its debilitated state should continue for longer, because there is a continuity of the spirit that doesn’t have anything to do with death. So I would rather burn this body out, to just go on and burn this body out.

Dignity

I am physically a very modest person. I wouldn’t even take showers in gym in junior high. So the prospect of having to lie in bed having a diaper changed, and having someone bathe me, is huge to me. I hate the idea of the loss of those two abilities. So my hope, my wish, my prayer daily, is that God will see fit to bring me death before that. But if that does not happen, if God still has work to do in me, I now have a good prayer to pray daily, which you gave me from the prayer book (p. 461):

“This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to do it quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the spirit of Jesus. Amen.”

Yes, “if I am to do nothing, let me do it gallantly.” Those words will be important to me. I will need a lot of strength and patience to deal with that indignity, and patience perhaps to overcome the notion that there is indignity in it. Ideally, I can come to realize that there is something, that there is a gift in there somewhere. Jesus, certainly Jesus, understands and his presence will sustain me.

God Is Love

Through all of this, I have learned that the only thing that matters is love. When you live in love, everything else just falls into place. When you live in God, everything else just falls into place. I first heard the words, “God is love,” when I was about 5 years old. I immediately felt, at the center of my being, that that was truth. Since that time, I have always held on to those words as truth, but in recent months they have become so glaringly obvious to me.

Another way of saying it is that with love, everything is okay. After my stroke a few years ago, I heard my grandmother’s voice saying, “Patricia, everything is okay.” And what she meant by that was not merely that everything will be okay, but everything is okay even in the roughest of times. That means that the “why” question of my illness is beside the point, is not even important, because, in loving each other, in loving love itself, everything is okay. The bottom line is that the only thing that matters is love.

The Rev. Fletcher Lowe is rector emeritus of Church of the Holy Comforter in Richmond, Virginia, and Patty McKellar was a member of the parish. She died nearly a decade ago, on May 15, 2006.

Song in the Valley of Death

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