(I apologize in advance for this post not being in my usual upbeat prose, but the topic is a serious one.  Please feel free to click away…)

I mentioned in Part 1 that 2 of my sons have a high pain threshold, for two very different reasons.  Steven does not feel pain because his “electrical wiring” is messed up as he was born to an alcoholic birth mom who also used heroin and cocaine.  He has a severe sensory integration deficit where, basically, light touch hurts and pain doesn’t seem register in his brain.  It has made for an interesting childhood.

Steven has more stitches in him than Frankenstein, and we have been to our local emergency room so often that they have a cubicle reserved for us.  (In the interest of full disclosure, I have to admit that the latter part of that statement is exaggerated!)  An active boy, he would often fall off of his bike and get right back on without any acknowledgement of an injury.  The only way I would know would be when he would come home at night and a portion of his clothes, a sleeve or a pants leg, would be covered in blood.  Upon inspection, I would find the culprit: a long gash requiring stitches. Due to the lateness of the hour, all of the walk-in clinics would be closed, so off we would go to the emergency room.  (His last gash was from under his knee down to his ankle.)  The ironic thing is, because of Steven’s sensory integration deficit whereby light touch hurts, he would scream in agonizing pain when they would put the Novocain needle in.  A few times they allowed him to choose to have the stitches done without Novocain. On occasion, they have had to sedate him in order to put the Novocain in.  Steven has also broken a bone in his foot and his hand, noticed only when he was walking or using his hand oddly. Through his school program, he has volunteered for several years at a reptile education center.  He has been bit several times by the snakes. but would keep on doing his job, wrapping his arm or hand in a towel so the blood wouldn’t get their tanks all dirty.  As a young adult, he has learned to manage this unique quality of his, and he has not been injured in well over a year.  (Knock on wood.)  Of course, he has also become much more sedate…preferring video games and tv over BMX bike jumps! His wild days of adventurous antics are diminishing, along with his injuries.

Angel, who is fifteen years old now, has a very different and complicated reason why he does not feel pain.  He was abused so badly as an infant and toddler that he developed Dissociative Identity Disorder.  When he was being abused, he would develop an alternate personality which would not feel the pain.  Even though he is safe from harm now, the abused personality continues to do his job and protect him from pain.  The best example of this is the fact that Angel has had persistent problems with ear infections, but they could only be diagnosed by a doctor because he would never acknowledge the pain so we didn’t know they were infected.  One morning when I went to wake him up, his pillow was covered with blood.  When he sat up, blood was dripping out of his ear.  I called the ear doctor who saw him immediately.  Although Angel was about ten when this happened, and he  jumped happily up into the exam chair like a toddler, swinging his legs back and forth while he sat.  “Hi, Doc!” he said excitedly.  “Can I play with your thingy there that listens to hearts?” he asked as he reached for the stethoscope.  The doctor explained he needed to use the device to look in his ear. “Cool” Angel said.  “If you look in there can you see all the way to the other side of my head?” he joked, while he giggled.  The doctor looked in his ear and pushed his stool back in amazement.  He informed me that Angel had a fractured ear drum from what looked to be an extremely bad ear infection.  The doctor looked at Angel and back at me.  He said it was unbelievable.  Not only is an ear infection painful, but an ear drum ruptured as much as his was would cause excruciating pain. He said he had grown men crying like babies when they came in with an injury like this. And there was Angel, grinning and swinging his legs back and forth in the examination chair, just like a happy toddler, (one of Angel’s personalities.)  On the way out of the office,  he even asked if he could get a sticker, and he chose the Sesame Street ones!  The doctor just shook his head in amazement!

The major downside to Angel’s situation, besides the obvious problem that it is difficult to determine if he is injured, is that a part of him DOES feel the pain. Because he does not acknowledge it generally, it goes untreated and the part that does feel the pain does so unnecessarily.  This may be very hard to understand, and possibly unbelievable, but the fact is, the part that feels the pain is very resentful that the “others” are safe and seem to lead a happy life.  After many years of counseling and better understanding his condition, Angel and I see the interactions between his “selves”.  The funny part is, his painful self will actually sabotage the other parts if they are doing something good or if they own something of value. Through counseling, he has been able to be very successful in school.  (His “smart parts” attend, and they would get a lot of attention for their good work.) As if jealous, several class projects were found broken in a heap on the floor the morning he was to have turned them in, and research papers would find themselves mysteriously erased from the computer.  Angel also had two laptop computers “stolen” in the middle of the  night from his bedroom. He wouldn’t tell me for a week or so, so I couldn’t search for them.  We could never figure out where they went!  He was sure someone was sneaking into his bedroom at night, but I suspected his part that had been abused was throwing them away.  We were never able to prove it because the garbage had days ago gone for its final journey to the dump.  I finally bought a lock and locked the laptop onto the desk.  A few days later, the laptop wasn’t stolen, but the keyboard was smashed to pieces!  Angel was also the proud owner of an IPhone that kept disappearing.  For days, even weeks, we couldn’t find it.  Then, it would pop up under the base of a living room lamp, in the bottom kitchen drawer under the towels, and once even IN a sock in the BOTTOM of the sock pile. Angel does not remember ever doing anything with his phone of this nature, but he does have a problem with memory lapses.  For a long time, even though he is fully aware that he has “parts”, he has denied the existence of this vengeful part because he could not imagine himself doing anything detrimental to his prized technology.  A few too many times of having his phone disappear, though, has convinced him that this part is lurking in the background…

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Comments on: "Pain is in the Eye of the Beholder…Part 2" (26)

  1. I popped by via Patty’s blog, what interesting children you have, it must be a challenge, God Bless You.

    Gill in Canada

  2. I don’t even know what to say. We are very familiar with dissociative identity disorder. I just wanted to say that I think that you are amazing and inspiring. Your kids honestly give us hope for our Gavin. Thanks for writing about your family. You continue to inspire both myself and my wife.

  3. Your posts are such an education for me because I had no idea what “dissociative identity disorder” was or what it involved.

    Wow.

    And I agree with Rob, you’re amazing and inspiring.

    Thank you for sharing so openly and honestly.

    I look forward to reading more.

    I’m so glad to have made your aquaintance.

  4. I never thought about the jealousy issue. That’s really helpful for me, right now. I have a part who holds horror. He is so angry, so hard to reach, so hard to work with… Sabotage is definitely part of his game, but it never occurred to me to consider jealousy issues. Boy, does that make sense! Thanks for sharing.

  5. jo-sexualself-injury said:

    I can relate to the not touching part, only mine is I hate to be touched in any way, shape or form. I don’t know how you do it, keeping the family together. You’re so strong! I’m having trouble managing myself.
    I agree with Meredith about the jealousy issue. I have several parts with that. Some days I want to bash my head through the wall.

  6. thank you for visiting my blog,
    Happy Tuesday!

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    help is needed,
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    simply comment with links included.
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  8. I am so glad you stopped by my blog so I could have the privlidge of reading through your blog! You are one amazing Mama.

  9. Kirsten Lesko said:

    My heart is aching.

  10. Hi. New reader. (I followed your link, too)
    I have to say that when I read Pt. 2 I could see myself about 5 years ago. Someone on the outside doesn’t see the frustration and fear on the inside when I have to say, “I didn’t do that”, all the while wondering if “I” did. It’s so damning to my soul to feel so broken. I have a great therapist, tho, who is there for me in ways that go above and beyond what I pay him for. I am very fortunate in that respect, but I have to admit: I would have loved to have the love and support of my family, just once. It is a wonderful tribute to you and your family that you have given love and support to these children.

    • 5kidswdisabilities said:

      Thank you for your comment. The fact that Angel is not aware of what he does was obvious to me, but he has had a hard time accepting it, especially the “bad” stuff. He does not want to believe that any part of him does not “love” him enough to do good things instead. Also, he has done several violent things which he cannot comprehend doing, so he thinks we lie about it. It is a tough situation sometimes!

  11. I know, as a special education teacher that recognition is something that is “nice” but not necessary; but you are amazing! and so are your kids!! As a teacher, I dealt with the students difficulties 6 – 7 hr/day; you deal with them 24/7…..the heart breaking part of all this pain and anguish these wonderful children have to endure is that it could have been prevented. That if the birth parent or adult in care, thought more a about these innocent lives than themselves – these kids would not be suffering! However, looking at your side – you would not have been blessed with the beautifully incredible kids!
    Thank you for sharing your life!

  12. Good and healing thoughts to you all.

    Kate

  13. I don’t have kids, let alone those with disabilities. But let me just say that you are amazing and this world needs more people like you. I appreciate the information I just picked up here, so thank you for spreading awareness and making others in your shoes feel less alone.

  14. Angel is a VERY lucky boy to have a mother who is so interested in him. I share his ‘problem’ but was not so lucky and did not understand what was happening to me until I was in my thirties! I still resent that no one cared enough to see. I still pay for it and it’s really not right. My own mother doesn’t want anything to do with me unless it is to chastise me for my ‘lies’ about the abuse and my failure to adopt the religion she used to invalidate me. Angel had it hard in the beginning and I’m glad he has you now. Mothers like you are rare.

  15. What a challenging parenting experience this must be. Injuries to my children always worry me, and their inability to let me know they were hurt would add so much anxiety! You seem to have struck a balance, though, which I find amazing and inspiring.

  16. This post just makes me want to hug my kids. And hug you for helping your kids and being their mom.

    How could anybody abuse a baby or toddler. It just breaks my heart.

  17. Are you writing a book about your experiences or have you already written it? (I’m a newish reader of your blog so forgive me if this has been answered.) It seems like you have more than enough material!

    PS My son had a ruptured ear drum last year. It was VERY painful for him.

  18. 5kidswdisabilities said:

    I have written a book, but I’ve shopped it around to every agent I could find and no one was interested. (bummer….) So I have to be content with just my blog!

    • meredith said:

      Have you considered Kindle, Lindsey? Have you considered forming a support system to mull over what a group of us could do to get you to that place? It’s worth considering! You have a lot of support on your blog, and many faithful readers. I’m sure there’s a way. I’d help you!

      • 5kidswdisabilities said:

        I am not technology savvy, (thus the boring background on my blog.) I don’t know what Kindle is. I really have a limited amount of time as I work full time. I was hoping a book agent/knight/knightness in shining armor would swoop down and pick up my book, doing all of the work for me. Then I could go on Oprah, do the book tours, and so forth, after I retire from work in a few years. (I understand it takes a few years to get a book into print.) I HAD it all figured out…but, alas, my knight/knightness in shining armor never came! It is still my dream to have it published.

  19. Taryn Cook said:

    Yes! This blog is so awesome that it would make a GREAT book! I can’t believe people aren’t knocking down your doors to get to it! I wish I knew a book agent…

  20. I’m so glad that I a link back to your blog. I just want to tell you that I honor and respect you for taking the time to understand and work with your kiddos. I very much relate to Angel, and I have to tell you, having a mother like you changes everything. I have three kids myself, and I can’t imagine what you must go through on a daily basis, but I can tell you beyond a shadow of a doubt that you are doing an amazing thing for Angel and for all of your kids. Thanks for being you. 🙂

  21. Hi there, I noticed that you mentioned you had written a book. May I suggest self-publishing? I actually just wrote my first book and have been working with a wonderful self-publishing company called CreateSpace. They are owned by Amazon.com and they are very helpful and easy to use. Even their customer service is friendly and helpful (which is hard to find these days…)

    Drop me an email if you’d like more information.

    By the way, I love your blog. You are amazing and inspiring, and your posts and stories have gotten me thinking about adopting kids with disabilities in the enar future since I cannot have my own children. Thank you for your honest and open discussion!

  22. Wow! God has blessed you to be able to offer such love and compassion to your very special children!!! I saw a couple of places where you laughed and so did I,very good I totally enjoyed the read!!!! Got here from Jingle’s Place and enjoyed my visit.
    Love you 😀 😀

  23. Good morning, and thanks so much for dropping a comment at Elvis Sightings… so I could follow you back here and get acquainted! We have some ‘pain is in the eye of the beholder’ issues at our house too, though more like Steven’s than like Angel’s. What an amazing family you have, I can tell after just a little bit of reading! 🙂

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