Incompleteness

Before I got sick with Lymes Disease, I had a lot of hopes, dreams and expectations for myself, especially when it came to physical activity.   Before I met Chris, I was a runner.  I played tennis and was actually fairly active.  Shortly after we got together, we would camp and hike at 10,000 ft elevation nearly every weekend in the spring to early fall.  When we were not camping, we would be planning the next hike or traveling.  We even would camp in the winter on the eastern plains of Colorado in the snow and wind.

In 2001, I woke up from my 40-day coma unable to move nearly any muscle in my entire body.  I couldn’t hold a pencil, talk or lift my hands.  Since the doctors at that time didn’t know why I was so deathly ill, they said I should regain the use of my body.  What they didn’t tell me was it would take many years to get my body back to a functioning level, to where I was prior to getting sick.  The hope of camping at altitude and hiking every weekend was not in my future, at least not for a few of years, as long as I stayed healthy and worked on getting my body back in shape.  So I lived the next 16 years expecting and hoping and dreaming I would be able to be physical once again.  But my body failed me time and time again as Lymes Disease kept flaring up.

When we suffer a loss of any kind, no one ever tells us that we have to change or adapt our hopes, dreams and exceptions for ourselves.  The Grief Recovery Method teaches us to look at these hopes, dreams and exceptions.  Once we can examine them, we can make the changes that need to be addressed.

It’s easy to understand how the death of a loved one changes dreams, hopes and expectations for that relationship.  The person is gone, and all your future changes in an instant.

It’s easy to understand how divorce does the same thing in your life.  You had planned to spend a lifetime with this person.  “To death do us part”.  And yet here you are, sitting with your lawyers, dividing up your stuff, battling over custody and visitation rights for the kids.  So long,  Hopes.  Bye bye, Dreams.  See ya, Expectations.

What you are feeling is grief.

How did your hopes, dreams and expectations change with your loss?

(Coming soon… how “better, different and more” figure into your grief equation.)

Hugs, Cee

email: cee@cee-chris.com

 

Loss: Independence

My beautiful, smart and wonderful daughter has a  heart condition.  When I asked for suggestions for this post, she wanted me to talk about loss of independence.  Cee and I know a lot about the subject, as do any of you who have a chronic illness.  It also applies in many ways to those of you who have gone through the death of a loved one, and many other types of losses.  I’ll address it from the angle of chronic illness first, and let all of you chime in.

Chronic illness robs you of your independence.  Period.  You can’t get around it.  In my daughter Nikki’s case, she has to rely on her husband and son to do certain things for her.  She can’t carry too many things, or things that are too heavy, so she needs one of them to go to the store with her, or for her.    She doesn’t travel alone any more, just in case she gets too weak or needs assistance.  She can’t work, so she can’t support herself.  She has to rely on her husband’s income.  She has lost her independence in so many ways.  She can’t go running or get to the gym when she wants.  She can’t go out with the girls, just to relax and catch up with them.  Heart disease as serious as hers controls her life now.

Cee and I know what loss of independence is all about.  After the three times she has almost died, she needed me to do everything for her.  After the coma in 2001, she even needed to be fed because she had lost so much muscle mass.  After each significant bout of Lyme disease, she would lose what little independence she had gained back.  Fortunately, she’s so much better now that she can drive herself around, do her own laundry, and help to clean around the house.  I still support her.  She’s not ready to go back into the work force.  That’s one of the reasons she became certified as a Grief Recovery Specialist.  She’s able to start earning money again while controlling her hours and working conditions.  That, and the fact that she’s darned good at it.

You might not have a condition as severe as Nikki’s, or as complicated as Cee’s has been, but if you have any sort of chronic illness, or a long term illness like cancer can be, you have been forced to give up some of your independence.  It’s just part of the package.

Those of us who are caretakers for someone with a chronic illness also give up our independence.  We have to be more mindful of how we are spending our energy and time, to be there for the person we love.  I’ve given up the hiking and camping Cee and I loved to do together, for example.

A death in the family often results in a loss of independence as one person now becomes the sole bread winner, or surviving parent or caretaker.  It might mean that you have to give up your house or apartment and move in with a family member.

How have you had a loss of independence?

Keep those questions coming!  Feel free to suggest topics!

Lots of virtual hugs,

Chris and Cee

 

Update on Cee’s Chronic Illness Work

This is a follow up article from my Loss:  Cee’s Chronic Illness article.

Me in the hospital, 17 years ago today.

My first Grief Recovery Method teacher wouldn’t touch any of my health issues during class because I was told that my health issues were too complex.  My teacher did suggest I start by doing a chart on my health.  I put together a timeline and chart that covered any type of illness that I had over my entire lifetime, not just Lymes Disease or when I was hospitalized and in a long coma, but also when I had severe bronchitis as a child.  On this chart I included some of the highlights of my life, like when we moved away from Minnesota when I was a child, graduations, when Chris and I got together, etc.  It was easier for me to correlate events with illnesses.  The timeline and chart gave me a good basis to look for patterns.

The one big pattern I found was:

Lyme disease —> No control over body —> brought up childhood issues

What stood out for me for the fifteen years I struggled with Lyme disease is that I had no control over my own body.  Someone (mostly Chris) had to do everything for me.  I was so weak after the coma that I couldn’t even speak or write, feed myself or wash my face.  I got better and could start doing the routine things of daily life, but I still have moments where I need help with things.

But I saw there was a pattern in my earlier life, when my father molested me.  Despite years of working on incest issues, I found out that no control over my body as an adult threw me back into no control over my body as a child.

So when I met with Cari Dawson this past week so she could work with me on my illness loss issues, I told her my revelation.  We continued to talk for a half hour about my dad and incest issues.  So my homework assignment from her was to do a relationship chart regarding my father.

But I’m finding out that loss of health isn’t that complex.  It’s just one more layer.  I’m learning that the work needs to begin with what is on your mind right now because that appears to be vital.  All losses in our life are connected in some ways.  One thing I’m really learning is that grief is cumulative and negatively cumulative.

Hugs, Cee

cee@cee-chris.com

 

 

 

Loss: Chronic Illness

Cee and I have uncovered a lot of new ideas as we’ve been doing our Grief Recovery work.  We’ve had some huge “Aha!” moments.  But we haven’t started doing a deep dive into the “elephant in the room”, her journey through Lyme disease and the impact it has had on our lives.  That is going to be an epic saga, I think.

Don’t get me wrong, we’ve done a lot of processing of it through the years.  We couldn’t be the happy, sane, caring people we are if we hadn’t.  But chronic illness has huge ramifications, with many layers of losses.

So what is a chronic illness?  A chronic illness is a health condition or disease that is persistent in its effects or a disease that comes with time. The term chronic is often used if the condition lasts longer than 3 months.  Examples of chronic illnesses are:  heart disease, diabetes, rheumatoid arthritis, kidney disease, COPD (lungs), lupus, MS, chronic fatigue, fibromyalgia, and our not-so-favorite, Lyme disease.  These conditions are just the tip of an ever growing iceberg, and often bring with them depression, anxiety, insomnia and a host of related problems.

Chronic illness affects the person with the illness, and also the family members who provide care or live with them.  In general, here are some of the most common losses:

  • mental and emotional wellbeing
  • physical comfort
  • a clear mind, because brain fog is normal with chronic illness
  • personal dignity and physical privacy, as people are always examining you
  • control over your body
  • financial stability
  • the feeling of having a future.  When it’s a struggle to make it through today, tomorrow doesn’t matter any more.
  • friends, as they give up on someone who is always cancelling on them at the last minute
  • independence
  • happiness, as pain and physical struggles replace it in life
  • fitting in, as you park in the handicap spot, or need a walker, or have visible scars on your body, or wear a head scarf to cover your bald head
  • the security of having loved ones in your life.  If you suffer from illness, there is the chance your spouse/child/parent will give up and walk out.  If you care for someone with an illness, there is the fear of death of your loved one, sometimes coupled with the guilt at hoping the end will come peacefully and quickly.

Cee will be applying the new techniques we have learned with the Grief Recovery Method to resolve some of these losses.  I will be working on my related ones as a caregiver at the same time.  We’ll be talking about how it feels, and what it means to get some resolution around these losses.

It’s going to be an interesting adventure.  If you or a loved one suffers from a chronic illness, please join this blog and participate in the discussions we’ll be having.  Feel free to share your own story in the comments below, but please be safe when you do so.  Remember that you are sharing with a lot of people, almost all of whom you don’t know.  Or email us privately.  We will never disclose any communication we have from you without your prior consent.  We treat your privacy as a sacred trust.

Much love and very gentle virtual hugs to all of you,

Chris and Cee

chris@cee-chris.com

cee@cee-chris.com