the irony of Being Mortal

April 12, 2015 at 4:21 am (Uncategorized) (, , , , , , , , , , , )

there are so many things i want to say.  the most difficult thought for me to impart is the physical pain and exhaustion i feel every day.  most days i sleep until the afternoon, or the early evening.  when i get up to use the bathroom, often with the hope i can get my day going, it takes so long i worry about making it in time.  that is a shameful thing to share here with you but how can you understand if i am not honest here.  there is pain throughout my body constantly now.  i can feel each and every fiber of my body, with the exception of the times that i have the numbness from neuropathy.  often i stagger and find it hard to prevent myself falling.

i was naive to think i could keep doing this blog at a normal pace when i am progressing with my heart failure. of course there is also the (non-alcohol) related cirrhosis of the liver. there is a long list of other complications that i find too tedious to list.  when i am awake but unable to actually get out of bed or out of the recliner i think of things that i want to make sure i say.  i often look at my laptop sitting a couple of feet away and am over-whelmed with the idea of actually picking it up. then there is the part of putting together comprehensive thoughts.

a couple of months ago we watched a documentary about a doctor who wrote  a book entitled Being Mortal.  he wanted to understand how to have better conversations with patients who were terminal and had reached the point where modern medicine could no longer enhance their life.  his own father was diagnosed with cancer and they found it difficult to have a conversation about what was about to happen.  the ironic thing was he said “what i found missing in every book was the voice of the patient.” yet here he was writing about the subject of dying and again there was not one patient voice. it was other drs explaining how they were handling talking to patients about palliative care rather than further treatment.

as time goes by i have more understanding. patients are just too damn tired and don’t want to use valuable energy to teach healthy people how to treat them.  for the second time in just a few months i have heard friends relay to me that they have not seen someone who they are friends with, and the person is terminally ill, as retreating.  i say to them is that person retreating or are you just not taking the time to go see them?

visiting someone who is terminally or even chronically ill can be frustrating.  sometimes in our optimism we say yes to  a plan one day but the day of the event we are unable to function.  does that mean we don’t want to engage? HELL NO! it means you are going to have to be understanding. it means you are going to have to be creative. it means if you are really my friend get your behind in your car and come to me.  it means you may be sitting in bed next to me or in the double recliner with me and yes you may have to make an effort to carry the conversation, you may have to bring pictures to share or read to me.  it wouldn’t matter to me if you just spent 10 minutes just sitting with me.  of course i don’t say this just for myself, there are so many others out there who are spending their last days alone.  i am blessed to have love around me, even saying that i must be frank and say he needs a break sometimes.  every time there is any opportunity for him to get out and socialize i encourage him.  what holds him back is that i will be alone and then what?

oh i will have my amazing, beautiful in spirit as well as on the outside, sister here in a few more months.  she will also need to go her own way in order to fully life her life.  i have some other ideas on the back burner though so no worries here.

just remember that your time will come and ask yourself what would you like from your family and friends?  now do exactly that for someone you know who is suffering from any type of illness and make their last days their best days possible.  when you give kindness it comes back to you.

13 Comments

  1. prenin said,

    Hi Hun! 🙂

    Yes, this is a good point.

    My mother is now a constant worry as her health has taken a knock and we don’t know the mid-term issues as she’s having problems getting to see a doctor at the moment. 😦

    To make matters worse, Hugh couldn’t cope and tried finding her a care home, then lied about it.

    Mum has already said that if she is put in a home she’ll kill herself. 😦

    Now she has a worrying cough that does not bode well and has recently recovered from antibiotic resistant pneumonia which came closer to killing her than anything to date, so all I can do is stay cheerful, phone every week and be there for her.

    Given her age she’s not going to last forever and all I can hope is that when her time comes it is swift and painless. 😦

    She’s been through enough in her life to suffer needlessly.

    You my friend are strong in so many ways and I really feel for you and Chris, so I feel for you when you describe what you are going through.

    I will always try to be there for you my friend and know that I will ALWAYS remember you.

    Love and huge squishy hugs! 🙂

    Prenin.

    • s blake callahan said,

      hopefully your mum is feeling some better by now my friend. i am saddened to hear of her suffering, however, she has been blessed with you for a son. if only every mother could receive such a gift:)

      you are in my thoughts and i send you love and big warm hugs:)

      • prenin said,

        Thanks sweetheart – love you too my friend!!! 🙂

        God Bless!

        Prenin.

  2. Judy said,

    Hi Sandra, I just sent you a private message. I want to be there with you. I’ll wait to hear what you are up for. 🙂

  3. Terry said,

    You make such a good point. The last few months of my brother’s life, when he lay lifeless in his bed, most everyone but Hospice and my one friend who moved in for that time, deserted me. No family visits, nothing. It always hurt so bad. I was very thankful for my friend who gave me an outlet to scream or cry

    • s blake callahan said,

      too often the healthy move on and forgot those they should be lifting up. your friend sounds like a true and loving friend. it makes me sad to know that you did not receive the support and care you deserved.

  4. Angie, also known as YS :) said,

    Nicely said 😊 If I can move across country to be with you, someone can make a drive over. I mean, there’s not even packing involved in taking a short drive and it feels really good to prioritize what and who is important in your life.

    • s blake callahan said,

      unfortunately not everyone is blessed with a sister like you!! the good thing is this enlightens people regarding who really cares and who should not take up valuable time and energy.

      you are an amazing sister! what you are doing is admirable, loving and just ….. leave me speechless

  5. appletonavenue said,

    I was going to do some work on my novel as soon as I finished catching up with your blog. Then I read this. I’ve always had a spot in my heart for those who worked in hospice. I think I will see if there is somewhere I can volunteer to sit and read to patients, or hold their hands, or wipe their tears. I want the same for myself when I’m ready to leave this place.

    • s blake callahan said,

      you can not imagine how excited i am to hear that you are going to reach out to patients in hospice! how kind and inspiring.

  6. appletonavenue said,

    I just realized. This is what I need to do for Mom. Whether husband wants to come or not. I’m going to visit her every week. Committed. Calling in the morning to schedule a visit.

    • s blake callahan said,

      can’t wait to hear more about your visits with your mom. she will be so grateful!

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