The year my life changed forever
Mel Lacy
Life was good for me in 2006. I was 49, successful, wealthy and healthy, with great endurance. I had the world by the tail—with a lovely wife and family, a great career as a builder and a zest for living.
Suddenly, without warning, toward the last week in July, my health deteriorated rapidly. By early August, I had severe headaches, muscle weakness, and disorientation. In each of four separate doctor visits, I was told bed rest and fluids were the best treatment for whatever it was I had (no one knew.)
I continued to deteriorate and by Aug. 5 I could not stop vomiting. Going to the emergency room is the last thing I remember until Oct. 17, when I regained consciousness. The news was horrific. I was paralyzed from the neck down. Lucky to have survived, I had a tracheotomy, was hooked to a ventilator and had a stomach feeding tube. I had lost 45 lbs. of muscle. I looked like a concentration camp survivor. I was flooded by anxiety—what would happen to me, to my family?
In mid-August, while I was still unconscious, physicians had finally concluded that I had West Nile Virus neuroinvasive encephalitis, which was causing the paralysis. West Nile virus is transmitted to people from infected mosquitoes. Who would have thought that something as tiny as a mosquito weighing less than an ounce could have felled a big healthy guy like me with just one bite? Before this happened, mosquito bites were just an annoyance. They had never been life-threatening. I suspect I was bitten in my own back yard in mid-July. Who would have thought?
After weeks in intensive care, I was transferred to a rehabilitation facility. Rehab for someone in my condition, it turns out, was not a good idea. They sent me home after six weeks and four days later, I had respiratory failure. On the way to the emergency room, my heart stopped. I was revived and spent the next 30 days in intensive care.
During that period, one of the physicians thought I had been misdiagnosed. He sent me to a teaching hospital in Portland, Ore., nearly 500 miles from home. The WNV diagnosis was confirmed. My attending physician said he thought that my head movement was about all I could ever expect. It was a devastating realization. This was, without doubt, one of the lowest of low points.
I was transferred at my own expense to a hospital near my home in Idaho and was finally released on Dec. 26, 2006, still on a ventilator. My wife became my primary caregiver as I lay in a hospital bed in our dining room. A physical therapist visited twice weekly during February. And my wife and I worked at the rehabilitation ourselves. I slowly improved enough so that I could to go to a rehabilitation clinic as an outpatient. The tracheotomy apparatus was finally removed in April.
Progress, when you get WNV neuroinvasive disease like I have, is hard to come by. But in the past three years, I have recovered some movement in my lower arms and hands but not full strength. My shoulders don’t function properly—I cannot raise my arms when they are extended straight out. I have good movement in my right leg and ankle, but not much in my left leg and my left arm is stronger than my right, which is unusual, because I am right-handed. My body core is still weak and I have poor lung function.
Despite the setbacks and the negative prognosis from the outset, there have been some minor victories. These are hard won. I have gained enough overall strength to transfer myself using a slide board which helps me to be a little more independent in my daily routines than in the past. I use a sophisticated, motorized wheelchair, which make a huge difference.
One of the main achievements of the past year is that, thankfully, I am able to drive again. Being given this freedom is a miracle. I transfer to and from the van seat from my wheelchair. I use my right leg for regular pedal controls and have good movement with my arm for steering.
But working harder and longer in rehabilitation, which is effective for most folks with disabilities, is not the right thing to do for anyone stricken by WNV. My doctor informed me that, with this virus, there is a very fine line beyond which I may actually be doing more harm than good. This was tough to hear, having worked so hard and come this far.
So, with that in mind, I no longer go to rehab, but I am able to go to the local YMCA, which has a great pool. There’s a swing chair that lowers down in the water, so I can transfer myself into water and do my therapy. This is wonderful, because once in the water I can walk and am slowly gaining strength.
One of the biggest challenges to overcome these days is muscle fatigue, so I do not have much endurance. As my doctor says, "After you have done your pool workout, that’s the equivalent of a runner having run a marathon."
Will I continue to work to regain mobility and strength? Absolutely. But it will be a long journey and who knows how much more motion I can gain.
My hope is that others will not have to go through something like this. My ability to speak has not been compromised, so I tell everyone I know to take personal precautions to prevent being bitten by infected mosquitoes. Everyone needs to dress appropriately when outside and they need to use an EPA-registered mosquito repellent, like the ones that contain the ingredient DEET, faithfully if you are outside when mosquitoes are biting (typically dawn and dusk).
I never knew this simple information…and often think about the “what ifs” in my life. What if I had used repellent and that mosquito had not bitten me? What if I had not been outside after dark? What if…I had never gotten West Nile virus?
So, I encourage everyone to take precautions. West Nile virus could change your life forever. Don’t let that happen to your family, your friends or yourself. This is a chance you can’t afford to take.
Mel Lacy
