Spots and Shavasana

Sometimes I close my eyes so hard that soft colored spots appear in the blackness.  Stars and circles.  Shapes ebbing and flowing into one another.  Waxing and waning like moon cycles.  All in a few seconds time, while pinching my eyes shut.  I find this a welcome reprieve when I feel too overwhelmed.  I always have.  When I was a kid, I used to just shove my knuckles into my closed eyes as hard as I could until spots appeared . . . only that technique leaves spots for a long time after reopening my eyes.  As an adult, I have taken the abbreviated version of the experience and just squeeze them really tight – I suspect my optometrist sister appreciates that I am no longer applying so much pressure that I temporarily lose vision performing this sensory activity.  I spent a few seconds like this while crying with Ron this morning.  Just taking a short break from my sobs to squeeze my eyes shut while at the same time not breathing in following an exhale (could this also add to the spots?  I think it could).   

My yoga teacher, Kara, calls that moment of not breathing after exhaling “the gap” and I have learned to try to extend the length of time I am in the gap during my practice of Shavasana (so much prettier in Sanskrit – शवासन or śavāsana), also known as Corpse Pose.  Corpse Pose is a deeply relaxing position that has many benefits, one of which is that it is thought to help prepare us for death.  Though this does not necessarily mean physical death, I pondered this application today in relation to Ron.

Ron mentioned, during our cry, that he is scared of dying.  I don’t know what words can comfort him during this very real fear.  We talked about spirituality and where he will go when he dies.  He believes he will be taken care of by God and will be in heaven, but he worries that he will be lonesome without me.  Selfishly, I worry that I will be so lonesome without him that I won’t be able to find a purpose anymore.  I start to wonder if being guided through Shavasana could help Ron lessen his fear of what it will be like.  Kara has offered to come out to the house and guide us both through a yoga practice.  Maybe Ron will want to take her up on the offer, so he can feel Shavasana.

I cry because I am so sad, thinking about Ron dying.  I am scared, too.  And I am not ready.  Then I get mad, because it is not fair and parts of me still cannot believe that this is really happening to us.  Then I cry some more because it is happening and there is nothing we can do about it.  And then I cry for others who are losing loved ones and facing challenges so much bigger than themselves and struggling to get by and make sense of it all.

Basically, I cry a lot.  I cry so much that my abdominal muscles ache.  I cry so much that my stomach fills with my sniffles.  I cry so much that my chest feels empty and hollow where my heart is.  I cry so much that I become tired and only then do I remotely start to feel better. 

Maybe that is why I have not posted this past week.  I thought that I would post more often, being off work.  But I have a hard time posting when I feel like I have nothing much to say, other than sad stuff, and there are no big changes. 

Ron is just sleeping a lot.  He is very tired and very weak.  He needs more help and asks for assistance with many small things, which I know is frustrating for him.  His nausea is more under control, but he has no appetite and anything he eats causes “burning belly” that makes him feel almost like it is not worth eating.  Plus, no food really sounds good to him anymore.  He just doesn’t enjoy eating and it hurts him to eat.  So, he doesn’t eat very much.  His pain is also more under control since switching from a Fentanyl patch to long acting morphine.  He barely needs to take break-through pain medications, but when he does, he has liquid morphine, which works pretty quickly. 

We had a busy week and weekend last week with visitors.  It is great that so many people love Ron and want to see him.  Yet we are also learning our limits.  Ron and I both recognize that we overdid it, even when trying to be so cautious.  He is able to say he needs a day off between visitors and no more than two people at a time.  We will tweak the visiting schedule.  We will find balance.  Even as we do, our hospice nurse reminds us that what is balance for today may not be balance for the next day.  Ron’s stamina changes.  She reminds us that we need to do what is right for him.  If he needs to call off a visit because he doesn’t feel up to it, we have to, even if people are coming from far away.  She reminds us that people should be coming for Ron, not for their own reasons or needs.  Therefore, it is whatever Ron needs.  If Ron doesn’t feel up to seeing or like he needs to see someone, that needs to be respected.  People who truly care for him will understand that.  People who don’t understand that are probably not the ones he should be visiting with in the first place.  The nurse reminds us that friends and family can talk to Ron through the phone or computer, because of the distance, and this should be enough if he cannot take physical visitors often (which, we have learned, he cannot).  And, even with those means of communication, Ron doesn’t always feel up to it.  Sometimes, just a phone call is too much.  If you do happen to be talking to him on the phone, make sure you are in a quiet, calm place where you can truly listen to him and he can hear you – no multitasking/minimize the chaos.  Basically, every expenditure of energy, even with those he loves, depletes his stores. 

Balance.  Flexibility.  Shifting plans.  Stretching out of what is comfortable and normal.  Being assertive about what our needs are.  Changing.  This is all a process.

Today has been a hard day emotionally.  Ron’s Adult Services worker through the state came out to reassess his needs for a home help provider.  She did this having heard that he was in hospice and that I was taking time off work, in part to better care for him.  I am Ron’s designated home help provider, which means I get a small amount of money for things like shopping for him and doing his laundry and preparing meals and helping him get in and out of the shower, etc.  Obviously, I don’t do these things for the money, but because I love him.  But, the money has helped to off-set a part of my lost income and increased health care cost since I took a reduction in hours at work last fall in order to provide more care for him.  Anyway, Ron was sleeping while I met with the worker, talking softly near him in the living room.  He never opened his eyes or said hello to her.  During our conversation, she asked about the timeframe I have been given regarding how much time Ron has left. 

I knew Ron did not want to know this information, but I thought he was sleeping.  I lowered my voice and shared with her what two different hospice nurses have talked with me about.  After she left, Ron woke up.  I went to him and he let me know that he had heard that whispered figure.  He was in disbelief, asking, “Who told you that?”  I told him and added that they were sure to tell me that no one knows for sure and that he is young and has a good heart and they continue to be amazed by him.  He said, “I will be here for another 6 months, at least.”  He is so determined!  He went outside for a smoke and then moved to the couch, where he sat up for about 2 hours (long for him, since he spends most of his time in the hospital bed).  He planned to eat, but he really just can’t.  He did drink an Ensure and ate a third of a frozen juice box.  Then he went back to bed. 

As he got back into the hospital bed to nap for the rest of the day, Ron confessed his fears to me.  I held him and we both cried.  We are so afraid of losing one another, losing the life we thought we would have, losing the ability to hug and kiss and share. 

We tell each other it will all be alright, which is something humans (at least in our culture) seem almost compelled to say to one another in times of calamity.  Of course, I am thinking, ‘it will never be alright again.’  Ron says he is glad to know how long he has left - glad he feigned sleep and got to hear the real story, even though he didn’t think he wanted to know.  He acknowledges straining his ears to hear my quiet voice.  He says that if it is this short, he wants to know so he can better evaluate everything, including how he is spending his time.  And he will start doing that . . . right after he finishes this nap.