Friends, family, faith help during the ordeal of a rare fatal disease

On Aug. 1, 2016, my wife, Jan Olson, died from one of the rarest of all neurological diseases called MSA. Multiple system atrophy has no known cause, no medication and there is no cure.

Somehow the cells in her cerebellum became rogue cells. The protein in cell structure didn't reproduce itself flawlessly for normal brain function. The magnificence of cell function was lost and those mutated cells attacked the nervous system.

This was Jan's struggle, but it was also mine. MSA showed up around 2006, but we didn't know it. Many doctors and numerous tests failed to diagnose her various aches, balance problems, tingling sensations and walking issues. Rush University Medical Center in Chicago diagnosed MSA in 2012. Two trips to Mayo Clinic confirmed our new normal in 2013. This was going to be a difficult road. She continued to see previous doctors to treat her symptoms and some admitted they had never heard of MSA. It is that rare.

It is impossible to prepare for something like MSA. You can only manage symptoms the best you can, make adjustments as needed, find flexibility, and accept your world is a one-day-at-a-time world.

I pride myself on being able to figure out how to fix things. But there was no fix to this. There was no "CTRL-ALT-DELETE" button to push.

We were on a slow, an excruciatingly slow, decline with no way to push away the unimaginable, knowing we were just a breath away from a sob and a tear.

Jan continued to lose motor skills and strength, leading to the use of cane, a walker, a wheelchair and finally becoming mostly bedridden. Suffice it to say that the last couple of years were extremely difficult.

My journal entry for July 4, 2016, has a distinct similarity to what I wrote July 4, 2015.

Where is God in all of this? God is probably where He's always been or more accurately, where we allow Him to be. Our faith teaches us to believe that God is always there. But I think we have to be careful how we attempt to understand that. Once in a while someone would say, "This is God's will." To me, this is a weak, almost useless, cliché. Does God decide to have two cars hit head-on? No, people were driving them. People make mistakes, people make dumb decisions and people commit evil acts that are of their own making. Let's leave God out of that. For me, blaming God is unfair and allows you to throw up your hands in despair and quit.

Was God to blame for MSA? No! I won't go there.

Was it something Jan did that caused the disease? No!

Medical science doesn't go there and I won't either.

MSA is a disease, not God pressing a button somewhere to see what happens.

Much of our wonderful life together was lost to a medical condition.

For many of our 58 years of marriage, we pretty much did what we wanted to do. We savored fond memories of trips with the kids, proms and weddings, grandchildren, visiting five continents, winter vacations and motorcycling through the Rocky Mountains as recently as 2009. However, the luxury of living on our terms was gone. Our new normal was dictated by MSA. It was in control. We lived it, adjusted to it, cursed it, we prayed about it but most importantly we shared it. Our focus went from what we wanted to do to what we needed to do.

Jan and I had a lot of time to talk, to think, to share and to love. There were good times in the middle of bad times. Friends and family came with food, brought a movie, her musical groups came by to sing, some came to play her piano and all came to share their concern and to offer support and help where possible.

This was so important, providing us a respite from the daily routine of facing the demands of MSA.

And unlike many others, we had time to say goodbye - too many times.

However, I cherish those moments of tenderness and reaffirming our love.

Somehow we found the strength to get through very difficult days. For me, this was where God was, giving the family and me the strength and courage to face seemingly endless repetitive days. We couldn't control or master her illness but we were able to compartmentalize it - some of the time. And once in a while, if we began a "pity party" feeling sorry for ourselves - asking "Why us," "Why now," "Why this" -- we'd hear of someone else with their problems and difficulties making us realize there are many others on this road we were traveling.

While God didn't cause MSA to attack Jan's nervous system, our faith helped the family to deal with this awful disease.

We faced those days making some very important decisions we never thought we'd have to make. Our family bonded more than ever before and found the guts to stick together, cooperate and provide the best care for Jan that we could.

For over two years, family, friends and Jan's caregivers made her days as comfortable as possible. There was no task too big or too difficult.

Caregivers treated Jan with compassion, love and even humor, becoming part of the family. We are still in touch. Hospice traveled this long difficult road every step of the way.

Medical staff came to her to make sure all was being done that could be done. A hospice volunteer visited every week. A caseworker on her weekly visit assessed where we had been, where we were and where we were going, preparing us for the obvious, answering questions we didn't know to ask. We were so thankful for these wonderful people we never wanted to meet. Our burden was their burden.

My pastor, the Rev. Alex Lang of First Presbyterian Church, Arlington Heights, was with Jan and me from the beginning of her diagnosis. He came to visit every two or three weeks for the last two years, helping us in so many ways.

For months, the family and pastors prayed for Jan to be released from what her life had become. Living for Jan had ceased to be viable. She and I had long ago accepted her dying, knowing her faith in God allowed for a better tomorrow.

Poets and philosophers suggest that loving too deeply makes saying goodbye more difficult. Maybe.

It also takes love to accept dying as a release for the one you love.

We didn't lose. There wasn't anything to lose. It wasn't a battle. There was nothing to fight.

We were on a road and our task was to make that road as comfortable and acceptable as possible. We did what we needed to do in the best way we knew how.

Release from MSA came for Jan on Aug. 1, 2016, when her Precious Lord reached to take Jan's hand. And "My Funny Valentine" took a huge part of my life with her. But that's OK; that's the way it should be.

She left me with a symphony of memories with "Someone To Watch Over Me."

• Larry Olson lives in Arlington Heights. Based on the theme "Independence," he told the story of his and his wife Jan's experience with her Multiple System Atrophy at a recent production of the Arlington Heights First Presbyterian Church's quarterly oral history night program called "God's Honest Truth." To view his presentation, titled "Degrees of Separation," go online to http://firstpresah.org/sermon/independence-larry-olson-degrees-of-separation/.