I can’t say my prayer life has suffered any at the hands of ALS. If anything, my spiritual muscles have bulked up exponentially as my physical muscles have fallen asleep. Nothing has the potential to bring you closer to God like being diagnosed with a terminal disease. And I’m talking close like joined at the hip!
|Erin with son Daniel
|Erin with son Daniel and husband Curry
It was fortunate that at the time of the diagnosis I had already started meeting regularly with my priest to straighten out a few things in my life. When you hit your mid-30s and you aren’t who you thought you would be, which was a mother, and you’re tired of carrying around all the garbage most of us haul about our whole lives, it’s time to bag up that garbage and put it out at the curb and get your head straight about your purpose in life. Fr. “Bill” was the perfect priest to help me do that. He was a tough New Yorker with a heart of gold and a profound love for Jesus, but if someone was completely out of line or caught him at the wrong time, he’d just assume tell them to go to hell as help them to go to heaven. Like I said, he was the perfect priest for me! He taught me to be tough and made me realize that I would never be alone on this journey. I truly believe God sent Fr. “Bill” into my life to prepare me for what was to come.
It was unfortunate that for 14 of the last 16 months leading up to the ventilator we were literally out of our house because of a crooked contractor. He took our money, tore up our house, ran through our money on other jobs, couldn’t afford to hire anyone to help him, and so continued doing occasional, substandard work on our house at a snail’s pace. We finally had to get another contractor and settled out of court with the first one. He paid us back a fraction of what he had taken. Sometimes that’s the best you can do.
All the while this was happening, my body and breathing continued to weaken. Long-suffering friends, who have most assuredly earned their heavenly reward, gave us places to live. We lived for six months in the living room of one dear family’s home, another six months in the basement of a couple from church and the last two months at the vacation cabin outside of town of the nurse friend who helped me deliver our son, Daniel, naturally. We would go to our house every day and spend the day, checking on the progress of the work and pretending we lived there. At the end of the day we returned to our home du jour.
It was at this time that we started taking long walks for an hour or more at night in whatever neighborhood we were living in, weather permitting, of course. The movement of the wheelchair seemed to stimulate my breathing and it was comforting for me to have one-year-old Daniel and then two-year-old Daniel belted onto my lap. He would fall asleep in short order and my husband, Curry, would settle him across my lap with his head resting on my arm. I couldn’t hold my child, but I could be close to him.
Our Fathers and Hail Marys ran non-stop through my mind as Curry drove my wheelchair around these wonderful, older neighborhoods with their massive trees. I began to imagine souls sleeping peacefully in the branches overhead, waiting for Jesus to come.. Perhaps they were the souls of the people who had lived in these houses long ago. This was not a frightening thought to me. They were past worldly cares and I liked the thought of that.
We had quite a scare with Daniel when we were living in the vacation cabin outside of town that had us both praying. It was located in a neighborhood of sorts that had once been a hunting club in the 1920s. Houses were placed sporatically with stretches of woods in between and there was even a small lake. Our cabin was nestled on the side of a hill below the driveway. It took a lot of strength for Curry to lower me backwards down the hill in the little wilderness to the side of the cabin, and then, using our motorcycle ramps, drive me up onto the porch. And it took even more strength and concentration to do the reverse.
On this particular day we were getting ready to drive to our house. Little Daniel was already up at the van playing with our husky-malmute, Loa, but they were both gone when we got up there. Curry called and there was no answer. He searched the immediate vicinity and found nothing. We were thinking that Daniel must have followed Loa when she went off exploring. We were becoming more frantic by the minute. Then Loa returned … without Daniel. Curry drove me in the van down the driveway and into the street where he parked it. He drove my wheelchair out onto the lift, but he left it up in the air to give me a more unobstructed view. Then he and Loa went off to search for Daniel in earnest. My job was to keep my eyes open and to storm heaven with prayers. I tried not to dwell upon the terrifying images my Irish imagination was conjuring up of our dear boy bitten by a snake in the woods or drowned in the lake.
It’s a bit hazy now about how we got the word, but I believe the neighbor next to us got a call from another neighbor a good ways down the road about a little boy who had climbed to the top of the slide in the yard next door to get away from a vicious dog. It had to be Daniel! Curry rushed down the road and soon returned with our fugitive, none the worse for wear. I will never understand how a two-year-old had the presence of mind to climb that slide, but I have no doubt Mother Mary was watching over him. It’s amazing how nothing — not our unfinished house or my failing health — mattered after weathering a scare like that. Daniel was safe and we felt blessed.
It was a joyous day when we moved back into our house in October 1997. We can never thank our friends enough for getting us through that challenging time. Daniel Worsham trick-or-treated in his own neighborhood for the very first time. We went everywhere! I would sit at the curb and Curry would walk Daniel up to the door. It was a wonderful night and a nice opportunity to connect with our neighbors. There is a definite advantage to having a mother in a wheelchair and that is when you get tuckered out, you can hitch a ride on Mom’s lap. We had a very tired, little goblin who had a whole lotta loot. That last was the ultimate irony because Daniel wasn’t crazy about candy! I thanked God I was here.
It became clear in the weeks following our return home that my body had been compensating for my breathing while we were in exile. But once I was back in the security of my own home, my breathing began a steady decline. On Thanksgiving Day, while Daniel played in his room and Curry and I watched the Macy’s Parade, I stopped breathing. It was nothing like I thought it would be. There was no desperate gasping for breath, only stillness. After initially calling the nurse who came to our house once a week and leaving a message, Curry finally understood that I was mouthing 911 … 911 … 911 … 911. They were there in a flash and started me on oxygen. We entrusted Daniel to our beloved neighbors two doors down and rode off in the ambulance, on a wing and a prayer, to start this new phase in our lives.
Fast forward to 2014. Our little Daniel is 19 and a freshman in college. It’s hard to imagine him riding around on my lap when I look at his 6-foot-3-inch frame. I’ve become a bit of a homebody in these later years and Curry and I spend a lot of time in the garden during the spring, summer and early fall. I’ve taken to saying my rosary outside in the gathering dusk and after dark. That’s how I made this rather amazing discovery.
I had not thought about souls sleeping in the trees for years. It all came flooding back one night a few months ago. It had gotten dark and the streetlight on the other side of the hedge had come on and was shining on the leaves of the walnut and hackberry trees directly across the street from me. My eyes idly scanned the leaves as I prayed. Wait, was that a face? It was! It was … Little Orphan Annie, complete with curls, button eyes and open, laughing mouth. I searched for more faces then and in the ensuing days and found many … The profile of the laughing jester, Chewbacca, the smiling pumpkin, the cartoon rabbit, Frankenstein, Mr. Frog, the smiling panda, the yip-yip dog, Mr. Mustache, the owl and more. These faces became my prayer partners and I looked forward to seeing them every night when darkness fell.
I creeped myself out one night when I began to imagine the story Stephen King would write about my faces. Maybe they weren’t smiling and laughing, but rather screaming! They would probably come to life and I would disappear. Curry would come back out to get me and find an empty wheelchair, but if he were to look up at the tree, he would see my face rendered in leaves and SCREAMING! Yeah, Mr. King would like that, but that’s not the story of MY face friends … I will say this, though. If those exact faces leaf out in the spring, I’M FREAKING OUT!
Fr. “Bill” was right. I have never been alone on this journey. I and my family have felt His presence every step of the way. Praying has brought me to the realization that, while I would love to be able to breathe and move my body, I never was my body, but rather the unique soul God gave me … And the last I heard, ALS can’t do diddly-squat to your soul! ... Brothers and sisters, can I get an AMEN?!