Kansas Snapshots by Gloria Freeland - February 3, 2017

“Gloria’s Great Adventure”

I was in the intensive care unit when sister Gaila arrived. She left her school librarian job and family in Bolivia to fly to Kansas City. She said:

Art [had] started sending very detailed letters about what was happening ..., but I wasn't sure about what I should do, being so far away. I could tell he was befuddled, as were the doctors. ... My dear friend Marcy read one of the letters and said “she is slowly dying and you have to go home.” She said that in front of my principal so he knew, also, that I had to go ...

I was hospitalized on Jan. 23. No one in the Manhattan medical community knew what was happening. It began with a bad headache and progressed to tingling and numbness in my hands and feet. Bit by bit, it advanced. Our doctor was visibly shaken. In an uncharacteristic slip in his bedside manner, he told me I was “going to Hell” before his very eyes and he didn’t know why. Not encouraging news!

Soon I couldn’t eat, walk or move my limbs on my own. Before they connected me to the respirator, I said to Art, “I don’t want to die.” The next day, I made the ambulance trip I can’t recall to Kansas City.

Gaila’s arrival was exactly 20 years ago today. When I look back, I can remember my own fears that I wouldn’t be able to walk again or hold my husband and children or go back to work. But I had never really talked to others who went through the experience with me. Recently, I asked them to share their memories.

Gaila added:

... Art and I would travel to KC every day to see you. I was in shock when I saw you in intensive care the first day. You had so many tubes leaving your body and you couldn’t talk. Art was very good about being logical and matter-of-fact ...

Daughter Mariya, who was 10 at the time, said it was difficult for her to see me.

I remember ... being unable to walk into the room because I couldn’t deal with you being hooked up to various machines that were the only things between you and death. And feeling shame later that I wasn’t strong enough to walk through that door. I remember sitting ... in the evening cuddled up with Grandma as she held me through my tears. I remember my teachers reaching out to support me.

My parents were very emotional seeing their “baby” so helpless. They stayed at our home with the girls after school so Art could be with me. Then on the weekends, they changed places with him, sitting beside my bed - one on either side - holding my hands while I slept.

Brother Dave said he remembers how scared he and his wife Linda were.

Our first visit ... was sad. ... I remember, and I thought, “will she be like this the rest of her life?”

Friend and college roommate Deb said:

... I just recall that Art would send his email updates and I would be anxious every day until I got to read it. It was like waiting for “the other shoe to drop” about you because it seemed, at first, things were constantly changing, and not for the better. I couldn’t understand why the doctors couldn’t figure it out and “fix it.”

Art said when Dr. Irene Bettinger first looked at me, she knew almost immediately. She ordered a full series of head through spine MRI scans while I was drugged so I could stand it. With the results at hand, she immediately ordered huge doses of prednisone. By the next day, I showed a slight improvement. It was an autoimmune disease like Lou Gehrig’s disease or multiple sclerosis. Years ago, it was called progressive paralysis and was nearly always fatal.

Mariya wrote about what happened next:

Then came the joy of Dad, through technical terms that I barely understood, explaining that you were going to start getting better.

After a few weeks, I was transferred to a rehabilitation hospital in Topeka. There I relearned how to talk, swallow, eat, walk, stand, read ... all those things I had previously done without thinking.

Daughter Katie had just turned 4 and was too young to completely understand.

I remember going to the hospital to visit you, although I don't remember much at all from when you were really bad ... and going to your physical therapy sessions and playing on the bouncy balls while Mariya and Dad played basketball. I also remember when we went out to eat one time when you were in a wheelchair and worrying that people would judge you or look down on you. I remember how happy I was when you finally came home!

Friend and work colleague Wanda said it was shocking to hear how I suddenly fell seriously ill and how long it took for the medical professionals to come up with a diagnosis and treatment.

Through others, I heard about your physical, occupational and [other] therapies and how you had to learn everything again ... I worried about your girls ... It seemed like forever before you were well enough to come home. I remember I and the rest of your co-workers planning a get-together to buy plants and mulch and more to plant outside your home. The man who helped us at the store ... even offered to drive the supplies in his own vehicle to your home ...

Dave said my recovery was an answer to prayer for them and they were so thankful.

Deb added:

I feel like I held my breath during those months and didn’t exhale until Art started writing of improvements and positive signs ...

Those emails ended up in a booklet Art put together: “Gloria’s Great Adventure: January 1997 through June 1997.” It’s not an adventure I would have chosen. Still, it did teach me how wonderful it is to have family and friends who help when you really need them.

Top-left: As the treatment begins to take effect, I can open both eyes, smile and grip Gaila's hand; bottom: Recovery is well under way and I can breathe on my own during this visit by Mariya and Katie; top-right: colleagues Wanda (left) and Pat welcome me on a visit to my workplace, complete with my own parking place. I was still a bit unsteady on my feet and "fat-faced" due to the effects of the drug.

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