Steve's storyLisa S. Fairland, Oklahoma
A true love story even living with Progressive Muscular Atrophy/ALS – by Lisa
About Us – My husband, Steve, and Me
I’d like to share our journey with Steve’s sickness and our journey the last 3 years (as he really started getting the muscle weakness in the of summer 2016). Our first BLIND date was November 15, 1996, and Steve told me only recently during his sickness that he loved me from that very first date. Not long after we started dating Steve shared with me that he had a bad back and I needed to know that. He even took me to the doctor’s appointment with him when he was then diagnosed with Klippel Feil – a birth defect when vertebrae in one’s neck are naturally fused.
Not only did Steve have fused vertebrae in his neck, but also in his thoracic and lower back as well – all naturally fused. Even back then when we were still just dating, I told God that having a few healthy years with Steve is still worth it to me.
Exactly one year later, November 15, 1997, we were married. In August 1999 we left our home in Oklahoma and moved to Okinawa, Japan where we lived & worked until he became really weak the fall of 2016 & by spring of 2017 we returned to the States for emergency medical care as Steve was on crutches by then and was rapidly losing muscles in his left leg and then not much later his right leg (Washington state – we stayed with family).
After numerous painful tests the suspected diagnosis was massive root nerve inflammation and the doctor was optimistic it would heal itself, thus, we returned to work that fall 2017 in Okinawa. Our church rearranged our house and moved the master bedroom downstairs so Steve would not have to climb the stairs. His muscle weakness was getting worse, not better. His last day at work was December 8, 2017 – and that was literally the last day he WALKED on crutches. (Steve still managed to get around in our house with the crutches, but fortunately our bed was high and the shower chair was high as I had stacked all 4 plastic chairs together to make it higher for him.)
Steve stayed home and I worked another two months. In February 2018 we took another emergency medical leave and returned back to the doctors in Washington state. Our church had sent a youth minister with us to help me take care of Steve during the long trip and help us get settled stateside. Our church gave us a wheelchair for the trip. We really needed that wheelchair. Also, the church paid for a wheelchair service van to get us to the airport. God was taking care of us every step of the way. March 2018 Steve was diagnosed with ALS – a very slow ALS called Progressive Muscular Atrophy. On top of that, due to the weakening muscles (which seemed to move from his feet up his body), his sciatica nerve was so pinched he was in excruciating pain.
Steve had major spinal surgery fusing two vertebrae in his lower back – surgery was April 11, 2018. Our youth minister had to return back to Okinawa, but our pastor had made arrangements for a retired Marine living stateside to come and replace him. He arrived April 10 – the night before surgery. Steve recovered wonderfully from major surgery that took all the excruciating pain away, but only days later got a terrible infection that turned into sepsis – so back to the hospital in an ambulance we returned for another three nights. (By the way, the day we returned to the hospital in an ambulance was the day before I was supposed to return to Okinawa to finish out the school year and pack out our house.)
Once Steve was diagnosed with ALS, we decided it was best we return to Oklahoma near family. So, literally after his three-week surgical checkup, May 2, 2018, we began our journey home in our new Subaru Forester. It took us 5 days to get home. As soon as we got home Steve wasted no time getting started to building us a house, we had to get a garage built first to house our shipment from Okinawa. Thankfully, Steve’s ALS was very slow, so we were able to get the garage built, receive our long-term storage and Okinawa shipment which totally filled the garage.
It’s important to note that ALS does not affect the brain or the mind or thinking. If anything, Steve was thinking more clearly during this period of our lives. Additionally, since his diagnosis was Progressive Muscular Atrophy – Steve shared with me that he’d probably had this for many years – like 12 years at least. He remembered his thighs really beginning to get weak back in 2006. Looking back, we considered it a huge blessing that this disease was not diagnosed any sooner.
Building the house started December 10, 2018 and we moved in April 10, 2019. Steve was the general contractor getting our house built and I designed the floorplan making everything wheelchair friendly. Moving into our home was good medicine for Steve. Thanks to his planning he had purchased the long-term care through our work so we were able to hire 4 informal caregivers to help me take care of Steve once we moved into our house.
Since I was still able to be Steve’s primary caregiver at this time the hired caregivers (working different shifts of course) helped with meal preparation, keeping the house clean, laundry, and the biggest blessing was they literally unpacked every box, cleaned, sorted and decorated the house for us. Three of our 4 caregivers were Mennonites (Christians). Our 4th caregiver was also a Christian (not a Mennonite) – she was recommended by hospice. (Hospice care began March 27 – fyi, you don’t have to be literally on your deathbed to qualify for hospice care. Since Steve was diagnosed with a terminal disease, he qualified for hospice care. If we had it to do over again, we would have started hospice care much sooner.)
All through our marriage, Steve has always taken care of me and put my needs before his own needs. I told Steve repeatedly that ‘you are the strongest and bravest man I know’. He was more determined than ever to not only get the house built and us moved in, but then he had other tasks to complete – like getting me a riding lawn mower so I could learn to mow the yard, and he also had to teach me how to balance the checkbook! (Balancing the checkbook lessons actually started back in January 2019 when Steve no longer was able to write or type on the laptop computer.)
Steve also had to get the mortgage as he was the one with an income (social security disability). The mortgage wasn’t finalized until June 5, 2019. After we got the mortgage finalized, I told God that He needed to keep giving Steve more tasks to do. Just as Steve took care of me, I lovingly took care of him every day and every night. I only left the house to grocery shop once a week or other short errands. Our new house is literally right next to the tiny home we started our marriage in back in November 1997.
July 30, 2019, Steve passed away peacefully in his sleep. We were both blessed to enjoy the new house we both loved building together back home in Oklahoma where we started. In the nutshell, it’s almost like God was telling me ahead of time that my time with Steve would be short as I’d reflect back to the day when we first starting dating and Steve warned me that he had a bad back. (Doctors told us his fused vertebrae had nothing to do with the ALS diagnosis.)
All through Steve’s sickness, he continued to be the kind and loving man he’s always been. He always thanked me for taking care of him. I reminded him daily how much I loved him and I wouldn’t have it any other way. God knows the end from the beginning, and God knew years ago that Steve would be sick one day and I’m so glad I was the one to marry Steve and be the one to take care of him. I’d do it all over again. Thank you for reading our LOVE STORY! Blessings, Lisa