Letter to normals

annapurna · #1 (**permalink**) 03-22-2007, 12:57 PM

Mark, thanks SO much for posting this. I'll bet EVERY spine or other chronic pain sufferer can relate to this. I'm particularly frustrated because I can't easily sit or drive for more than about an hour. I can walk, run, and climb mountains all day, but just don't ask me to sit! You can't believe the amount of criticism I get when I tell people that I simply cannot drive three or four hours to get somewhere. They always say, "well, if your back is so back, how can you do all that hiking?" I ask God to help me be understanding in these situations and not wish a killer case of spondy on them.

Thanks God for understanding friends like all of you!

Best,
Laura

dshobbies · #2 (**permalink**) 03-22-2007, 06:12 PM

To be honest, it wasn't so much comments that I found thoughtless, it was actions... and I found my friends much more willing to bring their own activity level down to mine than my family. I couldn't believe that I had raised such selfish children... but conversely also understand that they're just living their lives as best they can. Why shouldn't they want to go to a movie, and why shouldn't they include their father even if I couldn't go? This statement can be applied to so many other activities. When the day revolved around me, it did but when it didn't, I was left sitting alone. It hurt no matter how much I tried to understand.

Not so with my friends. They always tried to make sure I was comfortable and their concern was much greater than family's. But then again, when seeing them, movies and shopping, etc. weren't even on the table.

The bottom line is those who can, should - regardless of those who can't. The opposite would only result in martyrs and I don't want my friends or family in that catagory.

As for thoughtless comments, I have a friend who lived an adventurous life until grounded by her back. She complained that when in the company of those friends who shared this passion, they would only talk about their shared interests even though she could no longer participate.

I assume, through personal experience, that they actually thought she wanted to hear about the life she loved, never realizing that all the while, she was crying inside. However, with both friends and family, IF YOU DON'T TELL THEM HOW YOU FEEL, THEY CAN'T KNOW. If it hurt so much, all she had to do was tell them they she preferred not to discuss it. Theit attempts at comforting achieved just the opposite but having never walked in her shoes, of course they didn't understand... but true friends want to so it's up to us to educate them.

Should I asked my children not to include their father if I couldn't do something? Should I have denied my husband an enjoyable activity just because I couldn't join him? Though some with chronic disabilities might say yes and I'm sure there were times I did too, my disability invaded enough of my wonderful husband's life and I should/would be ashamed of myself for holding him back further, regardless of how much it hurt.

We are all so involved in our pain and how our lives were stolen by it that we failed to see how someone else might feel.

Now about my wonderful husband, read my other post!

Dale

Maria · #3 (**permalink**) 03-22-2007, 07:44 PM

Dale,
Long ago I hurt my back in 1982. I was 28 and an RN working full time with a great boyfriend and we loved to dance (South American) and party, have fun, go to movies and all the good stuff young people do.

So when my world came crashing down I didn't know how to handle the fact that his didn't. I wanted to hold him back in my heart but knew I couldn't do that. Still, this took some years to learn actually, and several relationships after that.

I finally learned to be content with the fact I couldn't do something yet I could feel OK letting someone else do it because why not, they could and why should they suffer my pain when it wasn't theirs?

I firmly believe in NOT making others suffer my pain, but that might mean not sticking around me either if I'm in a snit with my painful backside! I sometimes needed or need time to myself for recovery while I just lie down and not move~

mmglobal · #4 (**permalink**) 03-22-2007, 08:44 PM

Discussion about activity levels brings back some memories. I hung out, disabled and afraid to do ADR for more than 2 years before my surgery. I knew about ADR, Dr. Zeegers and the AlphaKlinik, but was afraid to take the leap. In 2002, we tried to take a very innocuous trip... driving up the coast to San Simeon. Driving did not bother me, but any type of sightseeing... the musuem stroll killed me. I had such a lousy time on the trip, that I wasn't going to go on another. Diane wanted to take a trip with our daughter and I encouraged her to go without me. It was another innocuous trip... up to Monterey and S.F.... very benign sightseeing.

That was absolutely the tipping point for me. Me being unable to participate in such a simple activity. I'd tried to participate and it wasn't worth it. Finally being completely sidelined and unable to participate really drove home the answers to the "am I bad enough" questions. It really brought me to understand that I was functioning at such a low level, that I really felt like my life was over.

When Diane spoke at my conference in NY, she talked about how important it was for her to let herself take care of herself. Just because we are in jail, we should not expect our families to be in jail with us. (So Dale... don't let Julius' disc herniations hold you down.... Leave him home... let's go dancing! Actually, I can't dance since my surgery, but since I couldn't dance before my spine problems, I'm not sure if it's related or not.)

Mark

marijo · #5 (**permalink**) 03-26-2007, 12:05 AM

I have just spent ages writing a really emotive post, and then lost it.....I am so p....d off I can hardly speak write or think.
M.x

Maria · #6 (**permalink**) 03-26-2007, 05:52 AM

That's a really frustrating feeling to lose a long post ~ hopefully you'll be able to post again soon! Take care and hope you didn't have to sit too long while you were writing~ looking forward to whenever you'll be replying again! Maria

dshobbies · #7 (**permalink**) 03-26-2007, 06:30 PM

Marijo,

Been there, done that! I just posted a question to Mark asking if something could be done about the mysterious key that makes these unposted replies vanish. He said no...suggesting hitting the back key or control z.

Though I do someetimes get caught up in the moment, I've learned that when knowing the post will be long to write it in word, then cut, paste and post.

Please don't give up, we want to hear what you have to say (or at least read it). Better luck next time,

Dale