The first time I really heard the words Parkinson’s Disease, they were being used by my doctor to describe something that was happening inside me, inside my skin. He spoke the words in response to my description of some unusual challenges I had been facing. I guess I would call them symptoms. Things like my left arm didn’t swing when I walked. I had lost my sense of smell. I felt a slight tremor in my left hand. He spoke the words to me in a sentence, “It sounds like you may have Parkinson’s disease.” It’s one of those moments that comes along once in a while that changes the entire direction of our lives, though I didn’t realize it at the time.
Normally life happens predictably. I grew up trying to make choices I hoped would result in a good and happy life. I went to school. I tried to do well. I tried to figure out what I wanted to do to make a living. I searched for someone I could love. Because of my parents, my church and my relationship with God and by just paying attention, I discovered early that good made more sense than bad. Bad may have pleasure, but the result of being bad would eventually be bad. Doing good just seemed like the intelligent way to live. It’s not that I always made the right choice and never did bad things. It almost always proved that doing bad things resulted in more bad things happening. Doing what I believed to be the right thing resulted in my life being better, both for me and the people my life touched. It just didn’t make sense to me to do bad things.
I did discover that making good choices didn’t mean that bad things wouldn’t still happen to me. Like most people, I wanted to be happy and successful. Happiness is different for everyone. I found out that what makes me happy can be different than what makes someone else happy. What success looks like is different for everyone. As I live my life I make moment to moment decisions that will determine my own happiness and success.
But then come the moments that will try to destroy the happy and successful life I have been living and pursuing. Usually these moments arrive with words, words spoken by me or spoken to me by others. Words spoken by me like, “Yes, I will do that,” to something I know is wrong. “No, I won’t do that”, to something I know is right. These moments change not only the course of my life, but also change me forever.
Words that are spoken by others, both good and bad, can also change my life and me forever. Like the words, “I don’t love you and I don’t want to be married to you anymore.” Those words were so powerful that from the moment they hit the air, their impact changed the course of my life immeasurably. Those words and the actions and choices that led up to them being uttered caused the life I had planned on to cease to exist, leaving me barely able to stand, staring at a blank canvas.
When I regained my balance, someone else spoke a word to me that again altered the course of my life in ways I could never have imagined. Only this time the word was good. The word was spoken in response to a question I had just asked. The question was, “Will you marry me?” She answered my question with one word, “Yes.” The moment that one word hit the air, its impact changed the course of my life immeasurably.
I had heard the words “Parkinson’s disease” before. I had heard that some celebrities said they have it. I remembered watching a movie titled “Awakenings” that was about people with Parkinson’s. Until those words were spoken to me about me, they were only words. I basically knew what they meant, but they were only words like so many other words. Words that existed to describe something that really didn’t affect my life. Now these two words that I had barely thought about were elevated to the status of being two of the primary words used to define me. And as time goes by, how they affect me grows stronger.
I am at a point in my life that my Parkinson’s body and brain are steering me down a path that has been travelled by many people before me, but it’s all new to me. And like most of life, the ability of others that have traveled this path to be a guide to me is limited. Parkinson’s attacks each person in many different ways. The people in my life, my family and friends can encourage me as I walk this path. Without God and Marcia, it would be impossible to go down this road. God is the foundation on which I have tried to build my life and He provides the strength to face everything. Marcia is the love of my life. From the moment she said yes, my life has risen far above my expectations, despite the challenges of living in this fallen world.
On the day Marcia and I were married, we said words to each other. Living in a “modern world”, we decided not to use the traditional vows but instead wrote our own words to say to each other. The words were spoken as a promise. Words that were spoken out loud and witnessed by our family and friends. Usually, these words are referred to as vows. We were making a vow to act and live a certain way for and with each other. The words were based on our love. Words that up until that moment were only words now had weight and substance and power. Words that would change our lives forever. Words that would result in the creation of new life. I know when Marcia and I said these words to each other, they changed from words into truth. They came to life.
Unfortunately, we have forgotten the words. We have lost them. When we moved into our first apartment, Marcia embroidered two wall hangings. One with my words to her, one with her words to me. But over the years, they too have been lost. What happens when you lose words that changed your life and words that you have built so much upon. I spoke my words to Marcia in love and because of love. Also with the desire to make a happy life with her. I remember what my intention was when I spoke the words to her. I promised to love her forever, with an exclusive love only for her. Rejecting all others. I think I said something about leading and protecting her. Also, something about putting her needs before mine. Even though we don’t remember the words, the spirit of the words endure.
A man I have known and respected for over 30 years has a saying, “Words mean things”. He usually says it when referring to a question about a contract. I think it’s even more true when you are talking about wedding vows. What Marcia and I said to each other were not the words of a contract between two people, we made a covenant with each other. Most traditional marriage vows have words like, “In sickness and in health, till death do us part.” I can’t remember if we said that to each other. It has always been my intention that Marcia is going to be stuck with me until one of us dies, even though I don’t remember saying words that meant that. When you are young and healthy, you can say words like “till death” and absolutely mean them and not really think about the fact that in the blink of an eye you could be at the edge of that cliff staring into the void. I don’t think I’m standing at the edge yet, but the fog has rolled in. It’s beginning to get dark and I can sense the void. Parkinson’s disease up to this point has been something in my life that I have been able to cope with, but as it continues to slowly steal things from me, it is getting harder to see. I have been able up until now to find things to replace what the creep is stealing. I am having trouble walking and getting out of the house, but I have a Segway that I can use to get out on my own and go almost anywhere. Speaking and listening is becoming harder, but there are things like texting that I can still do. I can no longer work. The strange thing is that as I move slower, the days seem to go faster so it’s easier to fill up days so I’m not finding myself getting bored. Driving is becoming a challenge, but I can still drive short distances, and we have a golf cart and my Segway. (I wouldn’t be able to write this if it weren’t for technology, (iPad, slide typing…). I’m still able to think fairly well. One of the reasons I’m writing this is because I want to think about some things while my head is still clear. I’m not so much concerned about what’s ahead for me as much as I’m concerned about what’s ahead for Marcia.
The last song the singer Glenn Campbell recorded before he was pulled into the oblivion of Alzheimer’s is titled, “I’m Not Gonna Miss You.” At the time they recorded the song, I don’t think he knew what the words he was singing were saying. Someone had to stand beside him and point the words out as he sang. The writers of the lyrics said they wrote the song knowing what he and others suffering with Alzheimer’s and those they loved faced. It’s harder on the ones that love the sick person because the sick person is unaware that they don’t remember anyone. The loved ones do remember but are not remembered. Parkinson’s disease can have dementia as a symptom. How extreme or how mild it may affect me is a mystery.
Now I come back to the words Marcia and I spoke to each other. I do remember offering her all that I am and all that I have. I also remember putting her needs before my needs. The bible says we are to esteem others better than ourselves. Jesus also said, “There is no greater love than to lay down your life for a friend. As Parkinson’s takes my life from me, I am keenly aware that it is also taking away Marcia’s life from her. I love her so much that I would like to free her from having to give up a life of living the adventure that is available to her. It is going to be hard for me to watch her having to sacrifice her life for me. There is so much more she can do over the next 25 years than caring for me. Because of my love for her, I would like to be able to find a way to free her from this future. I don’t think I have the option of removing myself from this world. I think the Christians believe that is a one way express ticket to hell. I’m not quite so sure. I don’t believe that someone that throws themselves on to a live grenade to save others from death or injury is condemned for doing that. Isn’t not wanting Marcia to be trapped into a full-time caregiver’s life at the cost of sacrificing a fulfilling, exciting life full of experiences and friendship and ministry considering her needs over my own? I can’t get over the idea of her losing her ability and freedom to live out the potential of her gifts and skills due to the fact that she is encumbered by something she didn’t sign up for. I would need to be very selfish to let her do that. Is there another way to free her? Paying people to care for you is something people do. A man I knew for 30 years developed Parkinson’s like symptoms when he was 75 years old. Early on, he voiced concerns about his wife having to deal with this, but his wife died of cancer when he was 80 and was still pretty self-sufficient. After his wife died, his Parkinson’s progressed rapidly. At 82 he could no longer walk and was confined to a wheelchair and his bed. He had to move out of his house and lived in an assisted living facility with a 24 hour nurse to care for him until he died at the age of 85. Fortunately for him, he was quite wealthy and had options. Marcia and I don’t have the option of being able to afford to pay someone to look after me. Unless God decides to take me home or they come up with a cure, I can’t seem to think of a way for Marcia and me to get out of the way of this bus that is hurtling at us in slow motion.
If I could, I would proclaim to the whole world my love for my wife. If a way cannot be found to free her from this burden, it will take more than an eternity for me to express my love and gratitude for her sacrifice of her life for mine.
The bible could say, ” There is no greater love than for a wife to lay down her life for her husband.”