It is hard to know where you are if you have no map. Actually, there is no map. More correctly, there are maps, but none of them can tell me where I am. There are all sorts of descriptions of how the grieving process goes. Some of them, most of them are useful in helping find a vocabulary for talking about grief. None of them provides an accurate map of where the grief is going, when junctions come, what ways to go when they do, what the destination looks like and where the one grieving is in relationship to it, whatever it looks like.
There are studies that reveal what people have said about how they feel at certain points in their grief journeys. No matter how many studies are done, or how large the pool of subjects is, there is no way to predict how any particular person will move through the grieving process. The studies can provide the average time for this or that, the way the average person who is grieving experiences each step in the process. Have you ever noticed how unusual it is for the high temperature and the low temperature for a given day to perfectly match the average temps for that day? It would be pretty remarkable to find someone exactly average in height, weight, hair color, eye color, were all the residents of the US to be included in the pool from which the averages were detemined.
The grief process is unique to each particular person who is grieving. The last few days have been puzzling. There have been times I have felt very good, a whole person again. There have been times I have felt very much alone, not whole at all, missing Mary Ann terribly. I remember when Mary Ann and I were trying to manage all the challenges of medications and side effects, the roller coaster ride of daily, hourly, changes. It became clear that Mary Ann was living right on the margin between being functional and being non-functional. It took very little to slip from one to the other. The grieving process, especially early on, is very much like that. Grief and healing are the shoulders on either side of the road. It doesn’t take much to drift on to one shoulder or the other.
One of the challenges of caregiving was figuring out where we were in our journey. We knew where it ultimately would lead, but there were no markers telling us where we were in relationship to that destination. That was part of the reason that we lived in denial. It wasn’t so much denial as it was having no clear roadsigns telling us how far we had to go yet.
If you read the posts that I wrote during the last year and a half of the battle with Mary Ann’s Parkinson’s and the Parkinson’s Disease Dementia you will see three words or phrases used very often. One is “Margin” as described above. Another is “Threshhold,” and the third is “New Normal.” Those words fit how we lived during the toughest years, and they fit the process of going through the grief.
As we walked that narrow margin between functionality and the lack of functionality, there were theshholds that we crossed from one level to another, most often to less functionality. When that happened, we would have to locate the new normal. The difficulty in dealing with crossing a threshhold to the new normal is that there was no map showing us where we were on the road. There were no signs, no markers revealing that a threshhold was coming or that we were crossing it. The only way we could tell if a threshhold had been crossed was if we looked back long enough to conclude that there would be no return to the former functionality. We could only identify the threshhold after we crossed it. Once we recognized it had been crossed, we could get on with the task of identifying and accepting the new normal. Once that was done, we could then focus our time on accommodating to that new normal — functioning as well as possible in our new location, new normal.
This weekend has brought those three words and phrases into this journey of healing that I am on. I am moving along a narrow margin bounded by grief and healing. There seem to have been some threshholds traversed along the way. I could not see them coming; they were not obvious when I was crossing them. There were no markers or signs that said, this is where you are. I have identified after the fact, transitions from one level of functionality to another. My code language for good health is “wholeness.” I don’t really know what that destination looks like or if it is even a destination rather than a way to think about the journey.
It is hard to identify a new normal, in this journey toward healing. There are no reference points. Studies can describe pieces of the truth about such a journey, but no one is average enough to fit the descriptions perfectly. I have to say, that looking back from where I am now, it seems to me that the journey I am on is one of healing. Healing is seldom free from pain. I have first hand knowledge of that truth as the saddle sore (my riding trophy) heals slowly. The pain of grief remains readily accessible. It is now no longer disabling pain, but pain nonetheless.
Those of you who read this need to know that what I reveal here about the grief does not shape how I function when I am with other people. Whenever, whatever threshholds have been crossed, the normal in which I am now living allows me to enjoy other people, laugh and celebrate, enjoy the uniqueness of friends, acquaintances and strangers. The grief is near, but I remain on the journey to healing.
December 20, 2010 at 11:27 am
This is such a beautiful, sad, profound piece of writing. It made me cry. Your strength despite all you have endured leaves me feeling like I have a long way to go. My husband was diagnosed with PD a week ago. He is 41 and I am 32. We have a great and challenging love between us that we are both very proud of and infatuated with. We are also very afraid as I’m sure you know.
December 20, 2010 at 9:22 pm
Mary Ann was diagnosed when she was 45 (I was 43). While I cannot, of course, predict how your journey will go, I can tell you that our relationship reached levels of intimacy that I could not have imagined. I learned how to love at a depth that surprised me. You have every right to be afraid. You also have every right to live with great hope. Mary Ann and I had over 23 years of good quality life after the diagnosis. There are many treatment options available now, as well as many in the “pipeline.” We learned not to hang our hopes on any one promising treatment that might rescue her from the disease. With that said, we lived each day with little time spent on what the future might bring as the disease progressed. It is too unpredictable and too specific to each person to waste time on worries about the future. The present was enough for us to deal with. I don’t know if you have children, but our Daughter and Son have become caring, sensitive, mature beyond their years, in no small part due to what we shared as a family dealing with Mary Ann’s Parkinson’s. By the way, we did not treat her as a sick person, just a person. She would not have tolerated otherwise. I should be able to email you directly with my email address. I will be happy to respond to any questions and help in whatever way I can.
Peter
December 21, 2010 at 4:30 pm
Thank you Peter. To answer your question, my husband has two amazing boys ages 9 and 13. They are my stepsons and the only children I will ever have. They had a very challenging Christmas last year when their mother who is a healthy 41 year old, had a sudden heart attack that put her in a coma for 10 days. She survived and made a full recovery but has a birth defect in her heart that cannot be operated on to prevent this from happening again. It was very hard telling the boys that their father now has Parkinsons.
We are trying to remember where we are lucky, and we ARE lucky and blessed. I’ll be around your page…