Lindy Kleivo's Story: Home for the Holidays
When I am reminded how fast the holidays come upon us, I cannot help but to think back to 2005. As the publisher of a fast-growing community living magazine, I was very busy finishing up the December issue and anxiously anticipating the long Thanksgiving holiday. I had just turned 33 and overall, I felt great! I was looking so forward to some time off. My daughter, Madison, had just turned two and life was pretty amazing.
Suddenly everything changed when, on Friday of that week, I woke up with numb feet. By the end of the day more than 25 percent of my body had lost feeling and I grew very concerned. After several trips to the ER that weekend, come Monday a diagnosis had not yet been made. My progressive symptoms remained a mystery for several days to follow.
Then, on the Tuesday before Thanksgiving, I was hospitalized because I couldn’t breathe, I couldn’t walk and the few muscles that were still working were failing fast. I begged for a spinal tap after a friend of a co-worker tipped me off to a disorder called Guillain-Barré Syndrome. She had had it just months earlier. The next day, I was indeed diagnosed with Guillain-Barré—a rare, debilitating neurological auto-immune disease that leaves approximately 1 in 100,000 people paralyzed each year—temporarily. This was the one word that I clung to throughout my four-month ordeal. Temporary meant I would come out of it, albeit a slightly weaker person physically, but mentally, much stronger.
And this has indeed happened.
Throughout this experience, during my long hospital stays, I realized that there was only one place I wanted to be. While I am a self professed work-aholic, it was not the office. While I love to be social and enjoy frequent evenings out with friends, it was not to be out on the town. While I love to travel to southern California, it was not to be walking Third Street Promenade in Santa Monica.
There was just one place that was always on my mind—home.
In fact, I tried to emphasize to my doctors that I planned to be home for Christmas- no matter what. I needed to watch my daughter’s eyes light up on Christmas morning and I was prepared to do whatever it took for this to happen- for me, for my husband, for my daughter. We needed desperately to get back to some type of normalcy in our lives. While they understood my needs, each doctor looked at me with a sad expression and simply said, “Lindy, we just don’t think that will be possible. Right now, based on your current condition, it looks like your stay at Marianjoy will be for two or three months, at least.” I was devastated, but determined.
My therapists and my nurses at Marianjoy sensed this inner-strength, which was now in control of my recovery. Each of them did everything in their power to help me achieve my goal and respected my wishes. Of course, they followed the doctor’s instructions, but because they were with me more frequently, they were able to see something in me that the doctors didn’t. They worked aggressively with me, set goals for me and educated me on my disability and the limitations I was faced with. They showed me new ways to do ordinary, everyday tasks using special therapeutic equipment, like to put socks on or to brush my teeth. They listened to my fears and my future dreams, they made me laugh and most of all treated me like a very special person.
I will never forget when Ellen, my occupational therapist, came in to meet me for the first time. She caught me at a very dark moment, when I was crying and depressed. She simply put her clipboard down on my bed and said, “It looks like you could use a hug.” She was right, and that hug kept me going all week long. This compassion towards me, the patient, was important, as I felt very lost and unfamiliar in the world I was suddenly a part of.
At just 33, I was severely handicapped but I was treated with respect and dignity by my caretakers. We were partners in the quest to regain the independent lifestyle I was abruptly ejected from. They were advocates for my happiness and well-being and knew that the sooner I was home with my family, doing things for myself and at ease in my own environment, the sooner I would feel whole again.
I worked hard at toilet transfers and “butt squeezes,” as one of my therapists, Terri, called them. I tried lifting my foot off of the bed with the help of a theraband at every chance I had. I did whatever they told me to do so I could be strong again. I worked harder at rehabilitation than I had every worked at anything in my life. “Repetition,” I kept telling myself and morning, noon and night for weeks- no matter how good or bad I felt, I worked at getting my body stronger and I used whatever was in my path to do so. Eventually I could function somewhat on my own and this meant I was ready.
I passed every test and I arrived home on December 23, and while I still had a long way to go, I was fortunate that our insurance allowed me the opportunity to continue to rehabilitate in my own environment. In fact, when I was wheeled through our front door, it felt like I had never left. The only difference was that we now had a wheelchair ramp in front of the house, and a few handicapped bars here and there, but not for long. Again, I was determined.
Today I am walking, running, and even dancing—usually right at home in my family room, with my toddler at my side. I recently announced the launch of another community magazine and have learned so many valuable lessons through this ordeal. I truly believe that because I was able to spend so much time alone in the hospital, and then again at home, I had a chance to reflect on the important things. My life has certainly changed for the best since my battle with Guillain-Barré Syndrome and I have the people at Marianjoy to thank for helping me to get back on track by showing me how to live the best life possible.