Monday, October 29, 2007

When people back away

I am a fairly private person, don't like to feel I'm burdening others, or sound like I'm complaining. So, I have this blog, where I can just jabber away and not worry about it. When asked though, I don't have a problem talking about things.

There's been something long bothering me. While having CM/EDS and all the related secondary issues, surgeries are part of the territory. With the last several, I pretty much get shrugged off. People used to do a prayer with me beforehand. Not anymore. Now, when I send an update to them, I get messages back saying, "I thought the last would be it. What are you doing now?" Geez, sorry for having defective connective tissue that's breaking me down head to toe. I get sent off now, no laying of the hands, which gave me so much comfort.

I haven't been going to church the last...month? Two months? I lost count long ago. It's primarily because I'm in so much pain there's no way I could sit on one of those folding chairs for longer than 5 minutes now. But what saddens me terribly is being gone from a place that was so much a home, only to find out it doesn't seem to matter to them I'm not there. No calls, no emails, no drop-ins.

Would it be different if my disease had a household name, something everyone knows about? Would they understand then this time bomb that is eating us alive here, emotionally for some, literally for me. What happens to my family when I'm gone? Who will they lean on? Will the church folk think "Oh! I guess this was serious." Like all of this hasn't made that pretty clear?

Maybe they think because I've had so many surgeries that I'm just used to it. Well I'm not. No one gets used to that, not even after more than a dozen. I may act strong and brave but it's to try to keep myself calm and help my nerves.

So there it is. I know we're all dealing with things so there are no hard feelings. Some people I know may just not be ready to think about this, and too some just aren't interested and they have that right. Some can't take this. I'm the same way, but I never get a break from it.

A break. Wouldn't that be nice?


  1. Sharon and I would lay hands on you in a minute, if we were there. I sent you the dream catcher to take with you to the hospital. Sharon made the hoop out of native willow and sewed the web, and I put the feathers on it. I can totally empathize with you. If you look back in by blog comments, you will be hard pressed to find any from my family members. Leslie, you, Linda, Scott , my support group friends, these people leave them all the time, but no one who supposedly cares about me. Not even my own daughter. I am so sorry you have these feelings of abandonment, and I don't care what things people have going on, there is no excuse. We never get used to the hospital, and the things they must do to us there. Even though we have never met you face to face, you are a special friend to us, and we love you.

  2. Wow, you took the words right out of Cyndy's mouth! She gets the exact same response from people at church. For her, it has been over a year since she attended; nobody ever calls her or checks on her. The friends that she used to work and volunteer with--they act surprised when I tell them Cyndy had another surgery and now is still not doing well.
    Through it all, remember the most important thing: God cares. God's people may act indifferent or too self-absorbed in their own lives, but in spite of the loads of crap you always are wading through, His loving heart is broken for the pain you suffer...and the rewards aren't here on earth perhaps, but He hasn't forgotten the longsuffering you're showing. Keep your head up :)

  3. I can so relate to this blog. My oldest daughter has not asked me even one time in the last 3 years how I am....hasn't even mentioned that I have Chiari. I have some other family members that are the same. It is very hard and I really don't know what to do about it :( hugs to you

  4. Sadly, I too can relate. when I fell from my horse and broke my C1 so badly, my pastor never came to visit me until one month after my injury, and that was just when he happened to be driving that way (he had a horse in the trailer behind his truck). He nor his wife ever called...I quit that church because of that. A pastor is a shepherd of his flock and it's a calling.

    Amazingly it was another church who took up the slack, called, visited and brought lots of meals.

    I think our problem is, we don't get better. We get worse. And People can't understand or relate somehow. They think you either get better or die. But what if we just get worse and worse?

    I just lost a friend, whom I thought was a friend anyway. We worked together. She would not answer my emails and finally she just wrote to me out of the blue and said that we just had a co worker relationship and now that I don't work there anymore, it's ended. She doesn't want to email or phone or stay in touch. I cried really painful tears.

    That is why we cherish our peers online so much, because "they" never tire of us, they understand.

    God bless you, and we will do a cyber laying on of God, it will be the same!

    with love

  5. Sadly, with so many people, "out of sight" really is "out of mind."

    I, too, would lay hands on you and pray for you.

    I didn't realize you were in pain to sit. I'm sorry. :-( That is so crappy. I hope they can do something to help you with that!

    I offer a toast (hold up your Lortab pills):

    "Here's to weird-ass diseases!"


  6. I know I have seemed to drop off the face of the earth but I still pray for all of you. Everything I had and now RSD have me in so much pain. I know each of you deal with horrible pain as well. I haven't left you gal or any of my other friends. I've just been hiding trying to keep it all together. Know that I pray for each of you and I think about everyone many, many times a day.


  7. Dearest Keesha,
    I am so sorry to hear this is how people are reacting to you. I thank Bobby for responding 1st, but know he speaks whole heartedly for both us. The last months of my Dad's life he called every Sunday. Looking back, that means more than I can say. People around us who, like you said, have to ask, What is that thing (or in your case things) you have again? People who are close or just on the parifery (sp?)of our life just stop asking how we are doing. Either because they are tired of hearing about it or they just can't take hearing how sick someone they know really is. When people hear Cancer or surgery, they think "oh good, your going to get better right?" It is a whole different mind set when you know the procedure won't make you better, it just may fix one thing or another for a while. I can't express strongly enough how much comfort Bobby and I have felt by having you in our lives. You and your family are in my thoughts and prayers everyday single day. All our fur children, Bobby and I send many hugs.

  8. I just read Sharon's comment. (By the way, it's spelled "periphery," Sharon.)

    It reminds me of this:

    Before I got sick, the notions of incurable disease, becoming disabled, and medicine that is not perfect were very abstract ideas to me. When I first got my diagnosis of cancer, I thought there were two possible outcomes: it would either quickly and painlessly kill me like getting hit by a bus, or, I would have some not very invasive or damaging medicine and would come out of the experience healthy as ever, never needing follow up appointments, and with very few scars.

    But the roller coaster of disease quickly taught me the error of my ways. The medicine was long and painful. Doctors started saying to me at every check up "This side effect will last the rest of your life." That shocked me, at first, because it didn't fit neatly into my two options of die cleanly or be cured quickly.

    Over time I got used to all these ideas. Over the course of a year, I have grown used to my changes and disabilities.

    But I think these people who care for us and then seem to drop off the radar only do so because they are confused. I think they see two black and white options like I used to. Once the initial "all clear" is sent up, they rejoice with us. But then when major health bumps happen down the road, they don't know how to deal with it. Suddenly, what was supposed to only be x months of medicine morphs into a beast of y years of medicine. And that is scary. That doesn't fit the mold. At that point, it is easy to fall off the radar.

    I sure know I've done it to other people before I got sick!

    Hmmm . . . I have enough here for a post. So I'll post something of this thought on my blog!

    Are you feeling better, Keesha?

  9. Lets face it, we scare people. We remind them of their own mortality. And through all that we have gone through and that we are still here, we are probably stronger than they are, and if they were in our shoes, well, they couldn't handle it.

    Keesha, I wish we were all there to form a circle around you, to pray together and lay hands, and annoint you with oil. We could celebrate communion together. And afterwards, have a covered dish supper. Sounds like a perfect Sunday, doesn't it!


  10. I am from Virginia. I had a posterior fossa decompression in March of 2000. The arachnoid cyst that caused my ACM has grown back, as have my symptoms. Yet no doctors can bring themselves to acknowledge that my symptoms are from either my posterior fossa arachnoid cyst, my compressed cerebellum (because it's contained within my cranium still), or my syrinx from C5-C7. So I dare say you more than understand these all too frustrating doctors appointments that never seem to end and the rollercoaster symptoms that are different from hour to hour let alone day to day!

    So I try not to talk about it unless asked. And even then, I know there are those who ask only to be polite. They get the standard "I'm here", "I'm doing", or "ok". Whatever, because they don't really want to hear. But I never ever expected to hear that my very closest friend of 26 years - we had been like sisters since we were 7 - was explaining my growing absence from her life in terms of "she's just not fun anymore. She can't go anywhere half the time because she doesn't feel well enough. She's gotten boring."

    And then this past week, a former co-worker called to tell me that she had gotten engaged. She explained to me that she knew that she and others wanted to call more often but just didn't know what to say anymore. They know I'm in pain that they will never know while they still are living good lives. And even though they know a phone call would probably make my day, they just don't know what to say to me. I was so floored, I didn't know what to say at all.

    I feel betrayed by these people who have come running to me continuously - even through my illness in some cases and making my life more difficult - with their dramas. Their panic attacks over such trivial things. "He didn't text message me tonight when he said he would! That's it! We are through!" at 3am . . .and I'm realizing that there have been those who are there who don't have to ask me how I'm doing because they are talking to me daily and they can hear it in my voice. They call me on the day of my appointment to hear how it went - their first question is what did the doctor say followed by where do WE go from here.

    These friends don't walk into my house raging about what a horrible day they've had - they wait to see my face or hear my voice first. That is how they know how I am doing. How are you is such a vague question, especially when you start hearing from them less and less frequently.

    And then there are the friends who bring you dinner on the days when you sound like crud - not because you asked, but because they want to. You could have asked they didn't give you the chance.

    I realize that when I am feeling myself again (or closer to it) the rest of my fairweather friends will be back asking me to go dancing, on road trips, wanting to use my house for a party, whatever. But the friendships I will choose to pour my heart into are those where the friendship pitcher is already half full. I know, that was cheesy, I couldn't resist :-)

    I am sorry to hear that you are having to wait for you pre-op. Try to be as constructive as possible and get all your questions and materials together for your trip and THEN do whatever you can to keep your mind off of it.

    I pray for you have safe travels, skilled surgeons and care-takers, quick recovery and much improved health.

    I blog at under 'mommy head hurts'

  11. I was very much surprised by the response to my "When people back away" post. I thought it would go by quietly unnoticed, and instead to my great sadness I see from the replies that so many others with chronic illness experience the same emotions. It's a roller coaster ride, being trapped within ourselves.

    Billybob & Sharon, thank you so much for the dream catcher. I will keep it near.

    Margy, I am sorry for what Cyndy has been going through. You have a kind and compassionate heart and I thank you for being there for her through thick and thin.

    Gina, that breaks my heart to know about your family. Have you visited at the message board? It's a great place to give and receive support from fellow CM/SMers, people who understand.

    By His Grace, you are right about our online friends. I think we tend to go unnoticed when we are stuck at home so much. You're a dear.

    Scott, yep, out of sight, out of mind! Everyone goes about their daily lives while we can't get out of these 4 walls (or if we do, we pay dearly for the next 3-4 days), KWIM?

    Linda, I'm sorry for what's been going on lately with your symptoms. I hear you about trying to keep it together. You're in my prayers.

    Sharon, I love that your dad called every week. That is precious.

    Betsy, thank you so much. I can picture that--praying and celebrating together. :)

    Anonymous/mommyheadhurts, I am thankful that you shared your story with me. I don't know if you saw above, but you wouldn't be alone at the ASAP board. It's comforting to have so many who understand and be there for you. I am glad to have "met" you here. :)

    And everyone, you are in my prayers to have days as pain-free as possible and contentment. Rest easy.