It’s amazing how certain things in our lives keeps showing up. In my conversations for the past twenty years with people like you, those newly diagnosed with a chronic or life-threatening illness, the same words and phrases continually appear. Our human experience is shared and our emotional and spiritual lives are ways we can express ourselves to others. Here is something I wrote back in 1997 that I found this morning:
July 2, 1997
What is it that makes us ready to open our heart to a pain which is so pure and genuine? Being incorporated into someone’s life the way a cat hair may get crocheted into an afghan. The opportunity to bond with an individual or family in such a way that when the person is alive you’re a godsend and afterwards all you represent is death and emptiness, or do I? What else might I be? I hope I can restore people’s faith in human nature.
Somewhere when a person has been violated or betrayed, either by someone else or their own body, I arrive and ask them to trust me, to help them navigate this new life. I try to reverse or make better all the ills they have suffered in their life or are currently suffering. My attempt is to help the person clean out the wound and be able, once again, to connect to the human essence of compassion and connectedness.
I like awake wondering how to relieve a person’s suffering. As I write I realize it is about bracing myself for a bumpy roller coaster ride which will continue until the calm of the coaster station arrives at which point the person has died. May I have it backwards, perhaps the roller coaster ride doesn’t start until the person dies or maybe it starts the moment the doctor says, “I’m sorry to tell you…” I guess we need to look at who’s at the control panel–maybe we’ll both be surprised.
So the real question becomes, “How do you measure a year?” as the question is posed in my favorite musical RENT. Maybe love is the only yardstick to use anywhere. That being the case, can I be on the lookout for such a blatant experience? Will I know it as it happens or will I need to look back and say; this was a sign of love. A measure of that person’s trust, not to do harm, faith to be true to my word and genuine in my emotions throughout our journey together.
So for now I will get in the car with you on this ride. I may not be able to take the fear out of the ride, but maybe it’s really about being able to scream with you as we go over the huge drop on the roller coaster–that freedom to release and have witness to the experience.
I offer this post with admiration, love, and support for your journey.
Waiting can be the most anxiety producing element of any diagnostic process. Most who are having surgery are scheduling the surgery and that gives you too much time to think. There is something to be said for the emergency surgery where your brain doesn’t get in the way by throwing all these life scenarios in front of you giving you too much time to ponder the negative.
I received a call today from the mother of a client. The message basically said that the client is in a state of perpetual “death anxiety”. I can understand the fear of undergoing surgery and then waiting to come out of anesthesia hoping for the best but preparing for the worst. In the meantime I often wonder how is the client living his life?
The wake-up call is the doctor saying you need surgery. What do you think about during the time between notice that you need surgery and the actual surgery? This young man is telling me that his biggest fear is leaving behind a young child. If that’s the fear then what are you doing to day to instill all the “right stuff” the child will need throughout his life? What values are you demonstrating? Do you light up every time the child walks in the room? (these are the things the child will remember)
The truth is that until the surgery is done we sit in the “waiting room of life”. This holding place is not as pleasant as the green room of a TV set, the food in most cases won’t be very good. It’s at these times that we are reminded about how small we are in the Universe. The truth is that in the grand scheme of things we’re insignificant, except to those we love and care about. That being said, isn’t it important to make sure that every day is spent fulfilling your dreams of generativity? What’s your legacy going to be?
Obviously the hope is that you’ll have a long time before your legacy is reflected upon, but don’t think that even if you’re healthy that your legacy isn’t being created on a daily basis.
You may think that distraction works to alleviate the anxiety. The truth is nothing can take it away, but by sitting with the fear and understanding what’s under the fear will help reduce its intensity. Let’s face it, we’re not going to be conscious of our death. The Ancient Greeks felt that the way to the Good Life was to meditate on your own death, and yet we try and keep it beyond arms length.
What would happen if it came in a little closer? What can you do today to reduce your anxiety by being mindful of the moment your living in, right now. Don’t throw NOW away!
Too many organizations, books and nonprofit organizations focus on the person with the illness, but one person is seldom the only one impacted by the diagnosis. We assume that people in our lives are obliged to care for us during our times of need, but is it done willfully and without resentment? In most cases the answer is Yes. However, just like the person who is facing the illness has a road to recovery so does the caregiver.
Caregivers are a unique bunch because the research and my own experiences shows that overwhelming caregiving is done by women. The order in which caregiving occurs is the following: wife, mother or daughter, sister, sister-in-law. What happened to all the men? Of course this isn’t an absolute, there are plenty of men who care for the women in their lives, but overall women do it the majority of the time.
My hope is that caregivers find outlets to recharge their batteries. It’s like when you listen to the flight attendant giving the safety instructions…”put the oxygen mask on yourself first, then assist those around you who may need your help”. There is a reason for this sequence, it’s not about being selfish, but you’ll be better equipped to help others if you make sure you have the tools you need so you can keep on providing the necessary care to the person facing the life-altering diagnosis.
Think of it this way…If I give you a penny and ask you to give it away you’re left with nothing. If I give you two pennies and ask you to give one away you still have a penny-everyone wins. Caregiving has to included win-win situations. If not you’ll become depleted and you can’t squeeze blood out of a stone.
Many organizations provide support groups for the support person(s) of those facing an illness. Those organizations are forward thinking because it gives you, the caregiver, the opportunity to discover coping mechanisms that will keep your battery running. It will also give you an opportunity to experience a community of your own. Caregiving is often very lonely and breaking the silence gives you support.
How are you handling your caregiving situation? Share tips with us so that we can all benefit.
It came to my attention that I need to make caregiving articles a regular part of this dialogue. Look for the weekly caregiver entry on Fridays…a chance to start your weekend with a bang.