Chronic Pain Lifestyle

Goodbye, Columbus

      We know that the uses of information that you read here are all flexible.  Trying to read my pain is like trying to piece it together with information that you've experienced, and that if I give you enough information about me you take that information into your own experience, and, where our pieces of information are common, a true story develops in your mind;  but, if the information is outside of your experience, you read information on a computer screen, and accept it at face value, or struggle to capture my meaning, which is like trying to catch the wind.

      The information today is a story from my past.  It's my wife and I as students falling slowly and gently into love.  We were and still are very different people, the types that are unlikely partners.  We courted for 5 years.  We were friends before becoming lovers, but were like polar opposites of magnets, coming together from a great distance.  This distance is so great that I still feel that while we're drawing ever nearer, will always be separated by the gap which all great love never fully bridges.  This feeling gives me comfort.

     My wife was forbidden by her parents to see me.  Many nights I would take her home from school on the E or F train into Queens, where her parents lived.  We'd walk, holding hands from the final subway stop to her folk's house in Rego Park.  It was about a mile through a good neighborhood. 

     There was a streetlight outside her house and we'd stand there, awkwardly in the beginning of our relationship, then kissing as our relationship grew.  We looked at the lighted windows in her house.  After a good-night that poked me in the heart, I'd watch her climb the steps and enter her house.  I went back to Manhattan alone.

     This continued for a few years.  I hadn't met her parents at that time, but I was forbidden fruit; she is Jewish, pretty observant at that, and I am a Catholic.  My wife's level of observence meant this:  Kosher, no mixing of meat and dairy, so cheeseburgers were out (my wife has still never had one).  Separate dishes, one set for meat, one for dairy, but never at the same meal.  No working or writing on Saturday.  No mixed marriage.  No using electricity on Saturday.  So how to cook?  Her mother might put a gigantic pot on the stove Friday night before the sun went down, bring it to a low boil, and take from it what she needed over the course of Saturday, replacing what she had taken with cold water.  No AC. No elevators. It's a bit of a shock when you've never experienced this before.

     Time passed and I finally met her parents after years of courtship.  Several arguments later, it had been settled that we'd marry.  On a Thursday.  After work.  In a Rabbi's office.  And have dinner at her parents ( our reception).

     My fondest memory of my wedding day was Karen in her wedding gown, climbing into a yellow cab (our limo) in front of the Temple and speeding-off to the roar of a surprised sidewalk scene to her parent's apartment.

     My second fondest memory was the Birds and Bees chat between her father and I that evening.  But that's for another time.

     On bad pain days, I think about these things and am grateful to God for giving me this woman, this life.  God bless, Colin

The Sandpiper

    Ruth Peterson suffers from depression.  Her pain , though different from ours, is every bit as real.  Ruth drives to a local beach when she is at a trough, the ocean gives her some relief. This is her story.

     A cold winter a few years ago, Ruth deeply depressed arrived at the beach one morning.  A small child caught her eye as she watched the surf.  The child was bundled-up, put playing in the sand building a castle.

     Curious, Ruth walked to the child who she realized was a little girl.  A row of cottages near the dunes, and Ruth noticed a woman watching her child play.  The adults waved to one another.

     Ruth stopped at the child's side complimenting her on her castle.  The child introduced herself, Wendy, age six, and asked Ruth who she was, and why she was there.  Ruth explained that she liked the ocean, her name was Mrs. Peterson, but was curious: why wasn't Wendy at school?  Wendy replied, "My mother says we're on vacation."  At that moment a bird flew by, "A sandpiper to bring you joy," said Wendy. "My mother says that sandpipers bring us joy," explained Wendy.

      Days into weeks and months.  Sometimes Ruth seeing Wendy, sometimes not.  Ruth sometimes visiting the beach and sometimes not.  Ruth, sometimes deeply depressed didn't always have enough patience to talk with Wendy, occasionally even snapping at her.  Ruth often saw the woman she assumed was Wendy's mother, always waving to her, but never quite making it over to the cottage to introduce herself.

      Ruth Peterson went through a particularly difficult time as spring rolled around.  Her mother passed away and she didn't visit the beach for a week or so.  She realized that she missed Wendy, and that morning drove to the beach.  Wendy wasn't there. Several more days, and short drives to the beach, but still no Wendy.  Ruth wanted to talk with her, maybe even say she was sorry for sometimes being crabby.  But again. that morning, no Wendy.

     Ruth walked to the cottage where she had seen Wendy's mother, so many times before.  The weather had warmed and the door was open.  Ruth knocked on the screen door.  She was surprised to find the woman packing.  A sad look on the woman's face and the house too quiet.

     "I'm Wendy's mother," said the woman.  "Wendy died of Leukemia.  She made me promise to give you something.  I waited an extra week to see if you would come by. I hadn't seen you and was packing to go. It's here somewhere, let me see if I can find it," said the woman between tears.

      The woman returned a moment letter with an envelope addressed in a six year old's handwriting to "Mrs. P".

      "This is for you, " she said

      Ruth opened the envelope.  Inside she found a pretty little crayon drawing of the two of them, Ruth and Wendy, watching a sandpiper fly over the beach.  Wendy had written on her drawing, 'A Sandpiper to Bring You Joy.'

     Six little words from a little six year old. 

     I've been so wrapped-up in my own junk, that I've of missed those beautiful little gifts.  Hard to believe that a six year old, suffering from Leukemia, would reach out, with a message of hope and love to a total stranger.

      I've heard this story before. perhaps you have, too.  In the hopes that you haven't heard it, I wanted to share it. God Bless, Colin

Happy Mothers Day to All

To those who struggle, please God may your burdens be lifted;

To my loving wife, God give me strength to be a good spouse;

To my mother, God grant that I be a better son;

To all mothers, the peace of the Lord be with you.

                                                                           Amen

Sex and Love, III

      The body of this article is taken almost directly from two women who responded to my first Sex and Love post.  The first message is in italics, the second in bold. To all of the mean who've responded to these articles and want to form a group, password protected please, subscribe to this site. I'm thrilled that there are so many of us who are working to overcome the same challenge, but of course I'd be a lot happier if there were no challenge at all.

     Again, please subscribe and watch the site. It's murder trying to keep this organized. If you're having trouble subscribing, drop me an email at [email protected]. Within the next week or so, I'll send each of you a private email with a location, password and log-in, and user name. Informality and fellowship will be the intended themes of our first discussion session, but if it goes in another direction, so be it,

     FYI, the female responses slightly out-numbered the male respondents.

     Here's the gist of the emails below. One of the women is deeply suffering, and the other has found ways to make her sex life work. What do you think?:

    

I have been with my husband for 23 years.  The kids are finally out of the house (for now at least) and I've had this blasted condition for 2 years as well.

I don't know what to tell you.  I just don't feel like making love when I'm taking strong pain meds.  If I don't take my meds I'm in too much pain to even consider it.

I am very much in love with my husband and I think he is very attractive.  He's just wonderful to me and I feel so guilty about everything.  I can't do the housework, I can't do the yard work, I can't do all of the cooking anymore and now I don't want to make love either.  I wouldn't blame him if he left me.  I don't think there are any magic answers for this.

I would like to say that with patience and understanding this will all go away but I don't think that's necessarily true.

If anyone comes up with anything to help with this part of our new lives, I would be very interested to hear it. -Writer unknown

Contrasted with:

Hello again ,

I will be checking out the info you sent me. I believe I will want to share in all you mentioned ... Author, comments, and as for the sexual, I know it is different for the women with arach, but I would be very happy to supply my experience as a woman on your site/blog. I read your post about you and your wife and felt such compassion for you both. Me and my husband have a great sex life. BUT I do not always get the feeling either. But I know the importance of keeping you husband satisfied in that way. He feels guilt, I feel it. But I am there and sometime the aggressor if I see he has had a stressful day. If he is fulfilled I am given satisfaction. To me, I don't care if it hurts, I want this man happy. And when I do have the honor of feeling it is like no one else could ever know. I have always been different, but in this I have had up to 21 .....okay, orgasms in one 'meeting' with my husband. It is unheard of, but I just think I save them all up and when they come they come in large doses! For a woman, we are so different with sex. Anyone can have sex, but making love is what we have. There is much intercourse, yes, but just touches, I love you's, hugs, feeling secure in who we are to each other is far beyond that act. I will say women do need fulfillment as well. But there are so many options, Colin. Use your imaginations. You said the kids were out of the house, do things fun and crazy. If you need ideas ask me, but I won't embarrass us until you do ask. I do not mind sharing. And I want your marriage to be so wonderful and fulfilling no matter what it takes to get back there. But then again, don't look back, look forward to what can be. It's not over, you just need some other input. New ideas. Do not give up. Surprise her each day with something she wouldn't expect. Whether it's a wildflower bunch tied with string, a massage. Go for the feet. Use lotion. It is heaven! I will stop here... So glad you are optimistic about your arach, we do all have to find ways to deal with it. Life goes on and I'm not letting it pass me by! I want it all. I may have pain during the process, but I deal with it. And by the grace of God I continue on.

Dear ____,

     We really do have so much to share, and could be more help to one another if we all just communicated better.  The note at the top of this email was posted to my web site. Your letter followed shortly thereafter.  I don't know who sent the message you just read, but I know you can feel the writer's pain.

     You were kind enough to share openly with me. I think the content of these missives will be helpful to the group.  I've "scrubbed" them both and would like to post them side by side Anonymity will still be preserved--the content of your letter is your property, so I have no right to use it without your permission. I would like your permission, but understand completely if you'd rather that it not be publicly posted. Please note, there is no reference to you, your email, and I've removed anything that will make the content of your letter clear that you wrote it.

     I wish to use it only in conjunction with the first letter with the intent of enlightening those who choose to suffer that their suffering is a choice, not an inevitability.  God Bless,

     Ps. Obviously, I won't do anything until I hear back from you.  If you "pocket veto", don't respond, I hope that our line of communication will remain open.

Sex and Love II

This can happen, too:

I couldn't find a spot where I could reply to you on the blog. I am Janice a
55 year old woman with A. I don't know what your talking about when you
speak of your sexual disorder but I can tell you what happened to me. My
last husband developed nerve damage in the area of the penis 4 years before
we divorced and he could no longer have sex. I with the A was becoming more
and more disinterested too due to nerve damage that caused a lack of feeling
in the area where we need it most. My husband could not perform so he quit
trying and that was ok with me but he was the type of person who associated
sex with love so after the sex stopped he no longer kissed me or hugged me
or told me he loved me. This contributed to the end of the marriage. I
didn't need sex nor could I even feel it most of the time but I did need
affection and love and I needed to be held and kissed and told that I was
loved. Don't make the mistake of not holding your wife and telling her that
you love her. Kiss her bring her a flower let her know everyday that you
love her. Sex is not love and love is not sex don't make the mistake of
combining the 2. Talk to her and tell her what is going on with your body
but don't forget to tell her and show her that you love her. All human
beings need to be touched, held and told they are loved. This issue helped
to end my marriage don't make that mistake. Janice

Sex and Love

     The most frustrating aspect of some marriages in general, and my marriage specifically to a woman I love deeply, is the gap that sometimes develops between us because of my inability to fully give and receive physical affection.

     SOMETIMES I JUST CAN'T DO IT!!! SOMETIMES I CAN'T FEEL IT!!! SOMETIMES I DON'T WANT TO EVEN TRY!!! SOMETIMES IT HURTS LIKE HELL!!!  In any case, it's hard to breach the wall of disappointment between my wife and I trying to explain these things.

     Even after 25 years of a monogamous relationship. After 20 years of a loving marriage, my wife and I are blessed with four kids.  I didn't expect that after the kids were no longer babies, that we'd ever have trouble expressing our feelings--vocally, emotionally, or physically.  I looked forward to these years.  Then 2 years ago, BAM! I went on the sexual function disabled list.

     We've tried everything, yet most of the time we are both frustrated by the wonderful peace that follows sex.  Think about it.  What if you had to stop making love, more frequently than not, and the emotional void that would follow. Both my wife and I struggle with feelings of inadequacy.  Unfortunately, all of the talking, explaining in the world doesn't fill the void.

     Particularly, I hate that the woman I love, the woman I'm more physically attracted too today than 10 or 20 years ago, is puzzled and unsatisfied.  "It's not you, it's me", doesn't satisfy as would the act of my simply showing her.

     That's it in a nutshell: I am usually unable to show my wife how much I love her.  She says it's not the sex.  I think for her it's emotional satisfaction leads to good physical sex. I feel emotionally inadequate, thus fail to deliver on that front, too.  Good sex for me draws me closer to my wife, and the emotional satisfaction she craves.  It's as if we're rotating in different directions.

     Well, life isn't perfect. I thank God that I have her.

      Please drop me a note by commenting on this article if you've experienced this and what you did to work around it.  I'll protect your anonymity. Thanks

A Quick summary of what I'm doing to get better

1. Accept that my life has changed, and that it's my responsibility to make the most of what I am.
2. I believe in God, and pray for help. I also thank God for a shot at a new and different life.
3. Build a team of medical supporters who know me, know what I want and take their advice.
4. Good days and bad days just happen.
5. Look at the big problem, break it into it's smaller component problems then solve for these smaller problems. The big problem then starts to fix itself.
6. Do something positive and different every day--even if it's tiny. Remember any plan attempted today is better than a great plan scheduled for tomorrow.
7. Stop feeling sorry for myself, and look at how my life has changed all of those lives around me.

I'm no saint, I do the best I can and I screw-up more often than I'm successful. All I can do is my best.