My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Saturday, April 23, 2011

So greatful for the internet.

I found a site today and it reminded me again why the internet is so important to me.

The pain started six months after I moved to NYC, too soon to have made any strong friendships, ones that could weather the storm that was my life with trigeminal neuralgia.

The first surgery I had worked for three months. Six weeks after the operation I was working at House Beautiful magazine. Almost immediately I made 2 good friends, Jan and Blanche. We spent many weekends together and often went as a trio to lunch or dinner.

Once the pain returned it was impossible to continue with the relationships. Everytime they invited me to go somewhere I had to say 'No." New friendships can only take so many rejections before they end. No one said anything. It just petered out. Did I not return their calls? Did they not return mine? I do not know. I just know they had lives to live. I had only pain.

My family was not there for me. My half siblings were there for none of the 12 surgeries I ultimately had, starting in 1977. My parents, one or both, came for the first 3 but then stopped. I was truly on my own.

Work and family are where you make friends. I had neither and was in no position to either make a family of my own or meet people to make new friendships.

I did have 2 friends in NYC, both from my apartment building. One I rarely saw and yet I think we both considered each other a 'best friend'. The other was a woman, also disabled, who was not able to get out and around. She told her father "The only reason we are friends is because of our disabilities. Otherwise there is no way we would be friends." She was telling the truth. Necessity makes strange bedfellows, or friendship in our case. Sadly both of them died. I was alone again.

A few years later I moved back to Pennsylvania, only a few minutes away from one sibling and 30 minutes from the other. My brother would leave Florida and move back a few years later.. He also now lived about 30 minutes away from me.

The 2 sisters were friendly at first. Then they decided they did not like me, no idea why and they never discussed any issues with me so we could work things out. Alone once more.

I did make a friend in my townhome community. It was again a friendship based on need rather than shared interests and like. Jane (pseudonym) was a lovely lady who took me everywhere with her. I was unable to drive; I was very dependent on her, but year by year our differences grew stronger and need became the only tether. Ultimately the friendship ended. A newer friendship, with someone I met at a yardsale, was more based on similarities and shared interests. Then she moved to New York.
We talk on the phone almost everyday; but it is not the same as someone there in front of you whom you can see and spend time with.

I sing in the church choir, and know people in the church, but there is no one I can truly call 'friend'. Some have been very kind and friendly, but they all have their own lives. Many work, they have children and grandchildren, their time is filled. There is not much room for someone new. I go to choir rehearsal and service, and fellowship afterward but, ultimately, I have to go home, and it is once again to home alone.

The computer is often a harbinger of pain for me, because of the intense amount of eye work, reading or writing, but I would be bereft without it.

It is here I "talk' to my nephew, the one person in the family brave enough to have sought me out years ago when no one else would. We write almost everyday. On facebook I "talk" to some people from high school, discuss politics or chronic pain or medical issues or even nothing at all, meet new people through websites and now blogs, have lovely, kind people at my website.

If it was not for the internet I would be even so much more alone. Yes, the people, for the most part, are only names (and maybe a picture) but it is people with whom I can feel a connection, sometimes even a kinship. For that I am almost unutterably greatful.


  1. It can be so hard finding good friends. I'll be praying for you.

    I'm following.

  2. Found you via your message to BookBlogs, and now following. There are lots of friendly and supportive bloggers there.

  3. Dearest Carol:

    I too am a chronic pain sufferer and have been for the past 7 years. I was seriously injured by a mental patient at my nursing job. I've had needles in my spine, surgeries, acupuncture, physiotherapy, aquatherapy, have seen doctors where I live, in Toronto, Kingston, Belleville, Markahm, Guelph and even Buffalo in the United States all to no avail.

    I live on 8 Percocet and 6 Oxycontin a day just to be able to get out of bed and dressed. I am totally housebound and haven't even been inside a store in 7 long years. My days are long and lonely. Our boys both moved out last year and my husband is gone from 6:00am to 6:00pm Monday to Friday. It is a looong, boring, LONELY day every day for me.

    The injuries I sustained were 3 herniated discs at L3-4; L4-5; and S-1; a tear in the annulus which is tough fibre like material that covers the discs; and my right S.I. joint is what they call "unstable". It's sort of free flowing which causes me to fall anywhere between 8 to 15 falls a month. I've knocked myself unconscious, broke my elbow, my ankle, my wrist and have constant bruises. I have a walker but when I fall it doesn't do me much good because my right leg gives out with no warning whatsoever. I go to take a next step with my walker and it's like my right leg is suddenly not there and down to the floor I go.

    My life is the computer, without it I'd be totally lost. In the beginning when I was first injured I still had lots of friends who visited me regularly but as usual, those people eventually began to visit less and less until I was and still am, left with no one. My parents are both dead and didn't care when they were alive anyway and my only brother lives 3,000 miles away and I only see hime about once every 5-7 years. I haven't seen him now since Feb. of 2007 when our father died. He doesn't phone or email me either.

    So, I can completely understand the position in you're in and am offering my friendship to you, Carol. Perhaps we could commiserate together and become friends over-time if we are careful and tend our friendship garden each day. I'm sure our friendship would grow over time.

    I've signed up to your blog and was hoping that you might like to sign up to follow my Book Review Blog. I've read 76 books so far this year. Without my computer and books, I'd be totally lost. Please have a peek at my site and you can decided if you'd like to follow it or not. Go to:

    Looking forward to hearing from you.

    Yours in newfound friendship,

  4. Book Blogs is a great place. I'm glad you found it. :-)

  5. I'm following. I totally understand. I am right there with you. I hope you will perhaps visit and follow me, too. I believe we have some things in common.
    McGuffy's Reader

  6. Elizabeth, neat blog. Good luck with all those days to fill. Ill be reading.
    Thank you for the note and the prayers.

  7. Deborah, I swear I can smell the lavender. (*_*)

  8. Louise, I could not find your blog, the address sent me to a google page instead. ):
    I am so sorry for all ou have gone through.
    You might be interested in, for women and men in pain and those that support them. I have kept it small which means there sometimes is not much activity but the folks who are active, when able, are about as supportive a bunch as you would like to know. (:
    I hope you;ll come check us out.

  9. Ann What a great page. I love the look of it. It feels comfy.