Saturday, December 4, 2010


I've been thinking about pain lately, physical pain, about how invisible it is. Unless you see someone grimace or hear them groan you have no indication that the pain is there. It is a completely internal experience and different people experience it differently. I have a fairly high level of tolerance to pain and my daughter has such a high tolerance to pain that her ectopic pregnancy nearly killed her before she finally hurt enough long enough to go to the hospital.

Those of us who have a high level of tolerance can't, I think, comprehend those that don't.

When my brother-in-law, Mike, first started complaining about the pain in his shoulder and right arm (which the doctors now think was simply arthritis and not damage to his vertebra), we expected he should work it off by being active, loosening and warming up the muscles. We all know the less you do, the less you are able to do. And at first he did. But as the pain spread and intensified, he did less and less until he nearly quit moving at all. And as he moved less and less, I'm afraid we weren't too kind in some of our thoughts judging his actions to be out of lack of effort. Our inability to feel his pain or relate to it caused us to be callous. Of course, we know now that something terrible was going on inside him and we had begun to suspect something dire in the last 6 – 4 weeks.

When we were moving Mike from the recliner to a wheel chair, from wheel chair to front car seat, totally inexperienced in doing this sort of thing (and just where was our advanced wilderness first aid, where we learned how to do stuff like that, when we actually had to do it?) the day we took him to the hospital. The three of us had to lift him up and out and turn him to get him seated. The minute we picked him up, from behind and sides, he started to slide down so that by the time we got him half turned, his seat was too low to get onto the seat and we were having a hard time keeping him from falling onto the floor. It was horrible but we did eventually get him in the chair and again into the car while he cried out and cursed with every small movement. I say horrible for us but we didn't feel a thing. I can't imagine how awful it had been for him.

Now that he is in the hospital and is on real pain management, he's come back to himself a little bit even if his decline has not been arrested. While I stayed with him last night, having slept really all day, he was awake all night. And so was I. Not only to keep an eye on him, to keep him from pulling at his IV or dismantling his heart monitor (which he did in the 30 minutes I was gone for breakfast) or even to help him eat but because these are the last days I will have with him. He's been a part of my family for a very long time and I'm going to miss him.


  1. I'm so sorry to hear that your brother-in-law's problems are apparently terminal. I will keep him in my thoughts.

    I have lived with pain of some sort for about 16 years now. I guess I've gotten so used to it that it doesn't really register anymore. It just is what my life is. It does get depressing at times that I can't remember what I used to be like. But I am luccky. Until the knee injury, I was able to at least move around well. Now I have a slight limp most of the time and I can't get down on my knees to clean the floor or stuff like that....

  2. I wish there was something that could be done to ease your (and your family's) emotional pain, Ellen. Sending my best thoughts your way. I'm so sorry you and yours are going through this.

  3. My mom might be alive today if she had paid better attention to her pain. On the other hand, her first doctor diagnosed diverticulitus instead of the football sized tumor that was on her kidney, so maybe not.

    I on the other had will question every ache & pain - maybe because of my mom's experience. I'd rather someone thought I was a hypochondriac (and I am) than to miss something important.

    I'm glad you're taking this time with your BIL - it will be important to you later that you did.

  4. Staying with someone in the hospital is so important. I've been in them and know all too well that just having someone there does so much.

    I also sat with my Dad in the hospital. He went in on Dec. 1st and past away on the 26th. This was twenty years ago. We took turns. On my day, I brought my needlepoint and helped as best I could.

    I'm so glad I did stay and sit with him.

    Pain ... of could I talk about that one. My pain level was a 15 or more. I went to pain clinics for help. My Dr's were amazed when they saw what was going on with my back. Today, it's the mind game that I do. And, today I am winning.

    Hugs to you,

  5. So sorry that your family is facing this difficult one can understand what another is going through...we keep trying and always do the best we can even if it's not enough...will keep all of you in my thoughts...

  6. Speaking as someone who is super sensitive to just about everything, including pain, medicines, noise, light, smells, you name it, I know very well that those who don't process things this way think people like me are just whiney prima donnas.

    I'm very sorry about your ill family member, Ellen. That's so hard on everyone. My thoughts are with you my friend.

  7. Ah, Ellen...would that I could ease your burden. I am grateful that you have shared your story with such candor. Have you ever listened to a podcast of Speaking of Faith with Krista Tippitt (it's now called On Being). She conducted an extraordinary interview with Thich Naht Hanh during which he spoke about suffering and compassion. May you find some measure of comfort here:

  8. I am so sorry for all of your family's suffering. There are no other words that mean as much as when one soul says to another...I care and I am right here. Your family is doing your best work right now. Blessings, The Olde Bagg, Linda

  9. it's so hard and unlikely that we can be sensitive to the details of people's experiencing of life - physical, emotional, whatever - given pain's invisibility in all its manifestations - all entirely invisible. be kind to yourself ellen. steven

  10. Oh Ellen, bless your heart. What you are doing is so hard. I have done it and know how hard it is to watch someone you care about suffer. My thoughts and prayers are with you during this difficult time.

  11. Oh dear, this is so difficult to take. There are so many pains for which doctors don't have any explanation, or long term prognosis. I do hope your relative gets better while you are still with him.

  12. In my family we are physically tough. When my boyfriend was sick while we were visiting there, I could see the "he's weak" written on their faces, especially my paternal grandfather. It made me furious, because they didn't know how ill he really was.

    It is so difficult to try and imagine someone else's pain. It's almost like we have to stop what we are doing and switch our mind to a place of empathy and understanding.

    I hope the hospital makes your brother in law as comfortable as possible.

  13. What a blessing that you can spend this time with him!
    I have a high tolerance for pain as well and I tend to be tough on those that don't. I don't mean to be so judgmental...but it seeps out! Sigh!
    I pray for tolerance!!

  14. My thoughts are with you and your family. This is never easy.

    We were raised to be tough and ignore the pain and so we do. We work through it, ignore it, rarely mention it and keep on going. So far, we, the sisters, have been fortunate that our pain is only that of aging and perhaps doing things we shouldn't.

  15. This is very interesting, Ellen. I'm like you with high pain tolerance, and I do sometimes find myself judging those with low pain tolerance, which is utterly ridiculous, but so it is. It's a very good point you observe, that pain is internal, and only visible for how it affects people, like how the wind is invisible except for how it moves things.

    My nephew is doing his residency now in pain management, in particular for infants, something that had never occurred to me.

    Just a couple days ago I had such severe sinus pain for about 12 hours, I didn't know how I could stand it. And I contemplated chronic pain that so many suffer from. I'm sorry about your brother-in-law, so sorry.

  16. I just read through your last couple of posts and am so sorry to hear about your brother-in-law's condition. Life takes such very sad turns sometimes, I'm sure these days with him mean much to you and your family. Take care ...

  17. I would respond to each of you individually but essentially I would be saying the same thing. Thank you so much for all the love and support and understanding. I can't tell you how much it means to me. If anything good comes out of this it will be that I am a little more understanding and compassionate towards those who suffer what I cannot see.

  18. Hopefully things make a turn for the better — for all of you.

  19. 'm so sorry for your brother and all of you in the family.
    At least they will manage his pain.
    I've known people in their last days in a hospice feel so well - due to pain management - that they thought they were actually getting better.

    When Beloved first starting moaning about the pain in his shoulder I didn't think much of it. And then I saw the x-ray. Now I believe him.

  20. I've only just caught up with this thread of posts. I'm so sorry about all of this, it is profoundly crap. Take care and make the most of the time you have with Mike.

  21. Oh Ellen dear, I am so sorry for what you, your family and of course Mike are going through. We do tend to try to be stoic about pain & changes in our physical well-being. My thoughts are with you & yours. Sending hope. Cheryl

  22. I'm sorry for you and your family Ellen.
    I too have a very high tolerance for pain.. and expect all those around me to do the same... it almost cost my youngest boy his life.... not his tolerance.. but my insistence that he needed to buck up and shut up.

    By the time his girlfriend took him to the hospital... they filmed his gallbladder surgery for teaching purposes... there was scar tissue wrapped around his liver.

    I have since tried to be more compassionate.

  23. So sorry to hear about your BIL. You and your family are in my thoughts and prayers.


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