October 22, 2012 at 2:30 am (dying, family, how does it feel to die, moving forward, shackelford ponies, the dr. says) (, , )

has been a tough night.  for some reason my feelings have been as they say “on my sleeve.”  we did watch a movie that turned out to be a bit more sad than we expected.  i noticed the tears and took his hand, it seemed better to let him have his moment and take my cue from him.  we spent the next couple of hours just relaxing.  when he was ready to go to bed he asked “how are you?”  my response to this question has become so automatic with barely any thought, “i’m fine.”  a beat or two go by and then “if being exhausted and in pain all the time is fine.”  what came next made me walk away. “i should stop asking.”  it wasn’t his intent to sound like he didn’t care, i know that.  this was my first clue that i was being overly sensitive.

next i was looking at facebook, which i still don’t know why i am on, and saw some pics that had been posted.  this isn’t the first time i have felt a bit sad when looking at pictures being posted.  facebook has been a great way to keep up with my friends and loved ones, it has made bad days bearable.  seeing the family photos, fun in the sun, and of course the adorable babies (furries included).  tonight seeing all the love and fun that i am not a part of anymore was like ice water and a white hot knife all at once.  to realize that these are people i thought would always be a part of my life and now i question if they ever were.

what is my part in this?  whenever patients would talk about problems with other people, whether it was work, friends or family; my question was “what part do you think you played in this?”  if you can say, honestly, that you did everything possible then move forward.  if all my friends had moved on it would be obvious that the ball is in my court.  that is not the case here.

many people with long-term illness or long-term terminal illness relate to what is happening in my life.  in other blogs it is a familiar story.  from spouses to parents, the question is why. why do these people stop making the effort? the caretakers want to understand and know what they can do. sadly there is nothing the caretaker or even the person who is ill can do.

tomorrow i will have my feelings under better control. tomorrow i will be fine. i will leave it as fine and not be whiny.  tomorrow my sister will be here.  this time next week we will be on our way to the coast.  it may be time to evaluate if facebook is a good thing for me.  if you have people or  things  in your life that are not making you happy maybe it is time to ask yourself the hard questions.  what does it say about them? why would i even care about being friends with someone who is so shallow? who drops a friend because they can’t be as entertaining or spend as much time running around?  i want to spend my last days with people whom i respect and know what they are made of and where i stand with them.

tonight is now early morning and my sister is coming today.  next sunday we leave for the coast.  we will laze at the beach, watch the wild ponies, visit the lighthouse or just be together at the beach.


  1. jmgoyder said,

    I really understand this and I find some FB pics and posts so inane and self-indulgent that it sometimes makes me sick.

    Even though I am not the one who is ill, I, too, have been ‘dropped’ by many family and friends. That doesn’t really bother me; what does bother me is that Anthony has been ‘dropped’. He has one loyal friend who drops in regularly, my mother once a week and me all the time of course, but some of his best ever friends just can’t seem to cope.

    You know what I hate most is that phrase ‘I just want to remember him the way he was’ – I feel like responding ‘he is still fxxxing alive, you selfish moron’ but of course I don’t.

    My heart goes out to you my friend.

    • sbcallahan said,

      chris has experienced the same thing. since we can not be depended on as a couple, he is penalyzed. it makes me sad and disappointed that people aren’t standing by him.

  2. tersiaburger said,

    You and Vic are really going through the same emotions at the same time. I am so happy that your sister is coming for a visit. If you are unable to blog on a regular basis please just drop a little status update. I get a little worried when I do see a daily post from you… Have fun!! Bask in the love of your sister.

    • sbcallahan said,

      long-term terminal illness has many ugly side effects and it would seem this is another one. fortunately vic and i have family. the down of that is we can not expect anyone, not even family, to be all things to us. we need friends outside of family and family needs to have friends and a social life. i was glad to hear you are going on a trip. it will be good for you and vic!

  3. william peace said,

    Been reading your posts on a regular basis. Feel guilty I have not commented in a long time. Do not know what to say really. Your words touch me and make me think about a wide range of issues. Not many people can do that.

    • sbcallahan said,

      there isn’t much to say is there? my lack of future is layed out and it is difficult for people to know what to say. my own family and close friends are often left the feeling they want to say something but just don’t know what that would be.

      thanks for letting me know you are there and remember there is no reason to feel guilty. i expect nothing from the people who read and appreciate just knowing that someone cares enough to spend their time reading my posts is touching and supportive.

  4. appletonavenue said,

    A beautiful post. Hope you have a marvelous time at the beach!

    • sbcallahan said,

      i am so looking forward our time at the beach! the ocean has such a healing effect. thank you for your kind words!

  5. Nathalie Doyle Herring said,

    Really looking forward to post of your Ocean trip with Sister, so happy you get this time together. I have a friend that has a brain tumor and rather than run and hide, unsure of what to say like some peoples, I have requested a lunch a month, then suggested he reach out to three others he wishes to keep in touch with and do the same. He is feeling great with someone to look forward to each week, and I am sure the time will come that he should not drive and it will then be I will pick up lunch and take to him and visit. This has come to bring joy and feelings of togetherness constant and not separation anxiety from the world at large. After my severe car accident, I have come to make time for others or dwell alone, so reaching out is worth the effort!! Please contact a few that you want to see and plan a couple lunches, see how this goes. Think you will love this and find others very willing and happy to break the ice. BEACH BEACH AND SISTER!!! YAHOO!!
    Sincerely, Nat.

    • sbcallahan said,

      thank you for your recommendations. your friend is quite fortunate to have a friend like you. we do have friends that really accept how my health dictates our availability. i no longer drive as far as i would like so it limits some of diversity i had before. my observation was/is that some people just drop you and it is understandable but it still stings.

      my sister is leaving a couple of days before we head to the beach. she is visiting from san francisco so she gets enough beach! we have a great friendship though and it is always fun when we get together. our sense of humor is the same so we really get each other. that is all a great gift to me and i so appreciate her.

  6. tersiaburger said,

    I have nominated you for the Lovely Bloggers Award. I sincerely hope you accept. If you do not feel like responding it is fine!! I just want to acknowledge how much your blog has meant to me. You are so stoically brave. Thank you for sharing your heartbreaking journey!

    • sbcallahan said,

      you are so kind and i do appreciate your effort. i really don’t know anything about the award and how it works. your friendship means so much more than any award could ever mean.

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