I have Parkinson’s disease and for me, that means sometimes when I wake up in the morning, I think and feel that "Life is pain." I'm at the stage of the disease where I need help doing things like tying my shoes and dressing and I'm embarrassed by that.1
Some of the effects of the disease, like drooling, leave me feeling like hiding from public view. Let’s face it, sometimes having and dealing with Parkinson’s disease sucks. It’s okay to feel that way. It’s not a good feeling, but the feeling is temporary.
An expectation to feel happy
On the other hand, I think society and I put too much emphasis on feeling happy. I associate a lot of guilt when I fail to be as happy as other people or even myself think I should.
When faced with the argument that life is about happiness, one writer disagreed. Leo Rosten wrote, "Nonetheless the purpose of life is not to be happy at all. It is to be useful, to be honorable. It is to be compassionate. It is to matter, to have it make some difference that you lived."2
I’m not much of a philosopher and I certainly don’t want to spark a debate about the meaning of life. I think Rosten makes some good points though and they’re especially relevant for people with Parkinson’s.
A lot of things tell us to be happy. Everything from commercials to the Declaration of Independence seems to put a premium on happiness. That’s a lot of pressure to feel happy. Putting things in context helps alleviate the pressure.
The Declaration of Independence for example, only states that the pursuit of happiness is a fundamental right and not the achievement of it.
In short, happiness just happens and like other emotions, it’s only temporary. I tend to forget that, and all too often set happiness as my goal and find I’m disappointed when I don’t feel happy.
Looking for ways to help
Rosten goes on to say life should be useful and honorable. That’s a point where I have trouble because I often think of myself as more of a burden to others than useful.
That type of thinking is based on misperception. My limited perspective doesn’t give credit to the compassion others may have for me. I fail to see what they see as an opportunity to be of help.
My response is often embarrassment or shame at needing the help. It helps me when I cultivate gratitude.
Focusing on what I can do
Also helpful is focusing on finding the things I can do. I can sit on the sofa and fold some laundry. Maybe I can’t get down on the floor and play with my granddaughter. I can read a story to her.
At the very least I can acknowledge the help of others and say, "thank you." I think being honorable means being honest about those things I’m unable to do and looking for ways that I can help.
Above all, it means honoring the help of others with gratitude and treating others and ourselves with dignity and respect.
Compassion for my wife
I don’t think feeling compassion for other people with Parkinson’s disease or any other disease or disability is a problem. Where I often fall short is feeling compassion for what my wife is facing.
I understand that she often feels overwhelmed and exhausted by the demands of taking care of me, the household, work, and numerous doctor and therapy appointments.Where I fall short in compassion is my consideration of her fears and anxieties about losing me.
I don’t think anyone likes to consider what life will be like after they are gone, and that carries over into our feeling compassion for our loved ones. I think everyone needs to consider it as a crucial part of being compassionate.
I prepared soldiers, sailors, marines, and airmen heading for combat zones by telling them the love for our families and those we care about includes thinking of their futures without us. It applies to people with Parkinson’s too.
Our lives matters
By finding ways to help others and treating them and ourselves with gratitude, respect, dignity, and by acting compassionately, our lives will matter and make difference.
I don’t think anyone lives apart from others. Even though I sometimes feel sad or depressed, even if I sometimes feel sorry for myself, I’m not alone.
My life, and yours, make a difference in the lives of others. Everyone matters. Disease, illness, and disability don’t define me. I am defined by how I respond to and treat others. You and I make a difference in the lives of everyone we encounter and everyone we love.
Have you ever tried the Mediterranean Diet?