Sometimes I don’t know if it’s me or if it’s me with Parkinson’s that causes me to dwell on death at times. I sometimes think ‘today is the day it will end.’ The day it will all be over.
Is it just me? Is it the disease? Is it me with the disease?
I watch a video of a man who, as he pans and photographs the Hawaiian coast with his drone, asks the question over and over, “Does your life matter?” I sit and watch as the drone flies over alcoves of paradise and his constant question causes me to wonder, does my life matter? Has my life mattered?
The drone skims the water, rushing upon every hue of green that is scattered upon the island foliage.
Does my life matter? The thought whispers into my brain again. Has it mattered at all?
Somehow, I ran across Davis Phinney’s site. Phinney was an Olympic Bronze Medalist in the 1984 Olympic games. Phinney has Parkinson’s disease. His ‘slogan’ for his foundation is, ‘Live Well Today’.
Live well today. TODAY stands out to me like a flashing light. It’s not a question of if my life has mattered. All that matters is today. Yes, I want my life to have mattered. I want to live today so that my life didn’t just take up space, but made a difference. I can live with the fact that life is short and this may very well be my last day, but I find it difficult to live knowing that someday I will stand before my maker, aware of what I needed to do or could have done to make a difference but neglected to or chose not to do it.
It is often easy for me to get caught up in a ‘do good’ mentality, thinking all the good I do will please God, but there is no merit that can satisfy God. It is not works that save me, but grace. I matter not because of what I have done or will do, but only because of what has already been done by Christ on the cross.
So, yes, my life matters but I need to remember that it good things, good works, good deeds – they’re all good, but they are worth nothing without Christ.
There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.
Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.
Ware writes of the phenomenal clarity of vision that people gain at the end of their lives, and how we might learn from their wisdom. “When questioned about any regrets they had or anything they would do differently,” she says, “common themes surfaced again and again.”
Here are the top five regrets of the dying, as witnessed by Ware:
1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
“This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it.”
2. I wish I hadn’t worked so hard.
“This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret, but as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.”
3. I wish I’d had the courage to express my feelings.
“Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.”
4. I wish I had stayed in touch with my friends.
“Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.”
5. I wish that I had let myself be happier.
“This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.”
What’s your greatest regret so far, and what will you set out to achieve or change before you die?
In a recent conference on Parkinson’s disease that I attended, one of the speakers stated, “Hope is medicine.” For the ill at mind, body, heart, or spirit, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard to see, find, or feel hopeful.
One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. If, in fact, you have PD and it did make it’s mark on you by depressing your outlook in the earliest stages, most likely by the time of diagnosis, you may have felt like your whole world had caved in. Then, you may have sat there in the doctor’s office feeling as if a thousand ton weight of steel that has just landed on top of you as you weat in your cave of grief.
One of the hardest things for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which easily lends itself to making depression one of its star players. It can play a large part in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our medicative “balms”. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted vision, making it even harder than it already is to handle. To add to the pot, too often the distorted, left-unattended-view only continues into a downward spiral mentally.
However, as with any disease, having Parkinson’s can and/or will make you think twice about your perspective on life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, etc., you now, whether you realize it or not, have found that you are of value. Why else do we seek out a doctor’s care? A support group? Because you matter.
You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something and you’re going to strive to make it the best you can with this disease.
Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a housebound vet tell of his “adventures”, checking in on a neighbor less fortunate, offering your time to help out in a soup kitchen – do it. Doing activities like this can often remind us that things could always be worse and it always feels good to be able to help someone else.
If you can sing, sing. It’s good for the heart and for those with PD, it’s really good for the voice and the throat muscles.
If you love to do artsy things, don’t stop because of PD. If you have to change to a different art form, change. Just don’t quit.
Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. Walk with a friend and be doubly blessed (and safe). If only intentionally around the house, walk.
Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Talk to someone. Let them remind you of the truth that you do matter.
Living with Parkinson’s disease is hard. It’s a day to day battle of pain, in the mind, body, and spirit. It is a constant fight for control. It is an acceptance for the unwanted. It is learning how to live a new normal while everyone else continues with the familiar. It is learning to realize you matter and there’s a reason you were chosen to carry this load, to endure the pain, to walk this path. So, while on this jour net they call Parkinson’s disease, take care of you. Take good care of you.
“If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”
Chad Sugg, Monsters Under Your Head