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Face to Face with gargantuan bitterness, still wringing out the stains.

Saturday, January 16, 2016

My apologies in advance for this laborious and confusing rant. I'm still having quite a difficult time talking about this, so I'm hopeful that typing it out helps me move closer toward some answers, and further from tears.

I was admitted to the hospital on 12/28 for a new drug trial for my EM. I was discharged last week and am trying to get past the side effects of the drugs, but still joyous to be home. You know me, I just love my own bed :).

I had a very strange experience with another patient while there.
Let me start off by saying that I thought I was a strong chick when it came to certain things. But it turns out that I was just mushy and squish inside with this encounter.

On New Year's Eve one of my nurses told me that a patient wanted to meet me at the suggestion of my pain doctor.
'How wonderful', I thought. 'Perhaps I will make a new friend with someone who knows chronic pain and disease. We could support each other. I'm in!'
I needed a change of scenery anyway. I had been dealing with tremendous muscle pain throughout my body, eye pain (eye pain?!), and waaaay too much barf with the new IV drugs. Blech!

A little while later she came into my room. Let's call her Helen. She was 61 years old and had been suffering from CRPS [complex regional pain disorder] for 24 years I think. I have CRPS too, but it's not my primary condition. My Erythromelalgia pretty much consumes me. Still, we were both gals fighting to survive each day, or so I thought.

We made some small talk about what our lives are like and the methods we use daily when pain is a monster. Helen seemed quite snarky, which didn't bother me much.
But then she quickly jettisoned into a story about how she WAS married for 27 years. Shoulder surgery somehow triggered her CRPS 3 years into her marriage, and her pain just spread from there.

My EM woke up about six years into my marriage, and I have been married for 17 years. Obviously we both had marriages that leaned more toward the 'in sickness' portion of our wedding vows.

Perhaps I'm naive. I thought we were just having a conversation. But now I look back and see that Helen was he!! bent on trying to decide my future for me. Darn you Helen.

She asked if I had gone through the standard Pain Management therapy program with a psychologist to deal with the ever-changing life of a person with chronic pain - yes I had.

Then she asked if my husband was in therapy to deal with all of the chaos that comes with being married to my disease. I told her that he was not. It just wasn't his thing. But he was my partner and supporter. We were a team.

She then said that this past March 2015 after arriving home from another round of pain treatment, her husband announced that he had decided to leave her, no longer wanted to deal with her chronic pain issues.
*blank stare*
I told her I was very sorry for her situation and asked if I could be helpful in anyway, but there was just no point. F$$$ him", she said.
I wasn't about to say anything in response. 27 years is a very long time to be married, and I didn't really know this woman at all.

Internally I started to question why my doctor even wanted her to meet me. Was this a spiritual thing? Was I being tested? Hmm.

Then Helen launched into her opinion (as if fact), that if my husband did not go to counseling soon, our marriage was doomed. He would leave me. And that if he did not divorce me, he would end up hating me for the rest of his life. Resentment would well up within him for all of the parties, weddings and vacations that never happened. It would destroy us. She was sure of it.

*blank stare*

She asked if I still had any friends left. True, I've had a lot of friends fall to the wayside. People get scared of what they don't understand, or they are just plain grossed out by what is happening to me visually. I get it. But I told her that I had some great friends that have stuck with me regardless. And I was thankful for every hospital visit and phone call.

Helen didn't have any friends left. "I lost them all years ago. F$$$ them!!", she huffed loudly.
I told her that it might sound easy to tell yourself that you don't need friends, but we all do. 'This is a hard journey to go it alone', I said.
"Well I'm stubborn as he!!, and if they don't like me, well f$$$ them!! I don't need any friends!", she said.
Wow, so much hostility and hurt there.

I started to question myself as to why my doctor wanted this woman to meet me. Was i supposed to cheer her up? Talk her down off of the anger and hurt she was spewing? I wasn't sure. But I felt terrible!

I desperately tried to change the subject. I asked her about some of the things that were going well in her life, but she really didn't have much to say on that.
Yes, we had had similar lives before the health nonsense took hold: We loved our busy jobs, were social, and physically active people. Yes, we eventually had to give up our jobs, our lifestyles, our social life (mostly). I get that.

Finally she threw in that even if I managed to eek out the next couple of decades with this pain, I would probably end up committing suicide.

I looked at this woman and saw bumpy jagged edges and razor points surrounding her. All of that hurt and anger was suffocating out any room for joy.

Helen needed to go back to her room, so I told her that I would like to stay in contact with her and be available to her if she needed someone to talk to. Someone who understood what a chronic pain life was like.
Aw crud, I thought. Did I just say that???

She said that she would have her nurse drop off her email info later, and left. And then I started to cry. And cry. And cry.

My husband took the day off from visiting me on New Year's Eve, since driving can be dangerous. And then SHE came into my room with all of that darkness, and cruel predictions of what she was convinced would be my future. Oh boy what an awful New Year's Eve, eh?

The next morning I was still heavily emotional. Helen's visit burrowed through to my core. I told my hubby about what had happened the next day when he came to visit, but he could barely understand me through my sobs.

He wanted me to rip my doctor a new one for sending that woman over to my room. But I told him that I was sure that she had some good intentions behind the meet.
Perhaps she was hoping a friendship would be created and some healing would begin for Helen at least emotionally? I don't know. My doctor didn't bring it up once for the remainder of my hospital stay, and I STILL cry any time I revisit the scenario, so I'm not going bring it up.

Was I supposed to meet Helen as some twisted sort of motivation to stay positive - or else turn into Helen?

Was Helen supposed to meet me to be reminded of how it IS possible to live with pain, and still hold back the rage?

Would Helen's twisted-fortune-cookie-rant about how I would soon be divorced and suicidal infect my life? Ahhh!

I never got the note with Helen's email info. Part of me is happy that I didn't. I feel guilty for that! Ugh, forgive me...

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Member Comments About This Blog Post
    I'm sorry I missed this blog! I don't know why I didn't get a notification ... I just re-subscribed to your blog and hope to now be notified whenever you post.

    That woman is that woman and you are you. I regret it deepy that you take all that to heart so much instead of looking at that person Helen and thinking that you and she are just totally different people with totally different attitudes. You don't have to like her or be friends with her. It is amazing, isn't it, what a huge difference it makes what attitude we choose?

    I think that the husband and her friends may well have left because of her attitude. Not because of the illness.

    emoticon emoticon emoticon
    1079 days ago

    Comment edited on: 5/4/2016 2:34:42 PM
  • OOLALA53
    I think it was a gift that she didn't leave the email address. I don't know if you're going to be able to figure out a satisfying reason this happened. But if there is anyone who can move on from it and stay with your own reality, it's you. No one knows what will happen!

    I hope we'll meet some day.
    1130 days ago
    Bren, I have no idea why your doctor would think it a good idea for you to meet this woman. I would put the conversation out of mind completely. Don't even dwell on it. She does not get to determine the course of your marriage, your health or your life. The way I see this experience? From a spiritual perspective, this was a spiritual attack, and it did not come from God. God does not test us with illness, with doom and gloom, or fear, or threats. Satan is evil. God is good.

    John 10:10 (Jesus speaking) "The thief (Satan) comes only to steal and kill and destroy; I (Jesus) have come that they (meaning us) may have life, and have it to the full."

    Jeremiah 29:11 (God speaking) "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

    I hope you are not dwelling on this experience and in fact I would not even keep discussing it. The more you speak on it and dwell it, you give power to it. Don't do that, honey. God is FOR you, your husband and your marriage. This meeting was not sent to you by God for any reason. There is no benefit or blessing coming out of this interaction. Just say, "I'm not having any of THIS!" and move past it.

    I will keep you and hubby in prayer. I will also pray for that woman. Love you, girlfriend.

    P.S. To clarify, I'm not suggesting this woman is evil but her words to you were inspired by evil. I'm speaking as a Christian of course who believes in a real devil that influences susceptible people. Helen is obviously suffering a great deal in many areas of her life and was venting out of the pain from her body and emotions, and whatever is in her thought life. She needs prayer certainly but that doesn't mean she has the right to project negative things onto you. So all I'm saying is, don't receive it; don't think too hard on it. There is nothing to analyze. Don't adopt a negative or fearful outlook for your own situation.
    1144 days ago

    Comment edited on: 2/29/2016 1:12:07 AM
    Oh Bren, I have no idea why that doctor sent this person to talk to you. It was very unwise--yes stupid! to do that to you. I would suggest sparkpeople to that woman but honestly I don't want to read her negative rants.

    WE LOVE YOU! emoticon emoticon emoticon emoticon emoticon

    You can find plenty of supportive and loving people here on sparkpeople! You have touched many of us. You are so much fun to chat with. I remember your tuby-- inventions. Very often you make me laugh.

    Stay away from that woman. If she visits you, feel no guilt, and say you can't talk now. Maybe she'll get the hint.

    I hope you can feel the love from all your friends here. chris

    1171 days ago
    You poor soul! If only there were things that made sense on this world and everything and everyone be happy and content and harmonized.

    Alas...it is not to be.

    Here goes.

    Helen is negative.

    You, my lovely friend, are as positive as you can be. A light in my life that I am forever grateful to have.

    Helen is bitter. I mean, she just had her husband walk out on her. Maybe she saw it coming or maybe, with her wrapped up with herself, she was blindsided.

    Needless to say, perhaps she wanted to (in her own convoluted way) warn you in what may happen. She was absolutely tactless in the way she did so. All prickles and thorns. Yes.

    My odd advice is to let this run through your system. Take what you can from that whole meeting and let the rest of it go. Of course you're going to cry in the could of, should of, what if areas. Yet, as time goes by, hopefully this will become nothing but a thorny memory. She will become just a wisp in your life of memories and in the end...you'll just feel sad for her.

    Move on.

    1172 days ago
  • NUMD97
    I have kept this blog up for several days now, because I wanted to be sure I answered it, Bren. So many wise postings below mine. I totally understand why this encounter would have unnerved you. I do believe that your doctor's intent was a well-meaning one: Without knowing for sure, of course, considering the rarity of your illness, s/he probably believed that you both could get some support from each other which may be hard to find elsewhere.

    Having said that, please, dear Bren, keep in mind everyone's situation is different. Unlike someone else who posted here, and again without proof, I do not believe this woman was "evil" to begin with. As you well know, chronic pain is an extremely difficult situation to bear. Yet, it is not your responsibility to uplift her and show her a "better way". Her situation did not work out well for her, as she does not have the incredible support network that you have. Randy and you have made a mutual commitment to your marriage. And he has stood steadfastly beside you. Only you know what your relationship is, and this total stranger has no clue. Her situation is a very sad one, but that does not mean that it has to become your path.

    By your very nature, you bring out the best in people. And that has nothing to do with your illness. You are you, and you are unique and you are good. And oftentimes I read your postings and am humbled by your good cheer. We all could learn many important life lessons from you.

    I am glad that you have close family and close friends both inside and outside these cyberwalls to give you the nourishment and the support that you need. Life is short, and I, too, albeit not in your situation, have done some "housecleaning" of late and gotten rid of some toxic relationships. Some relationships are just not capable of fixing and they are best let go. I only point this out, to illustrate that it's not necessarily because of chronic illness, but some people just are not able to "go the distance". Part of life's many, many lessons. You are not alone in that respect.

    We surround ourselves with love and support. Anyone not able to do that, is best left cast aside.

    Bottom line, Bren: Don't give this incident another thought. It's just not worth your time.

    I wish you well, as I always have, and if you need something, you know where to find me. I always welcome your thoughts, Bren,

    1172 days ago

    Comment edited on: 2/1/2016 4:29:36 PM
  • PHOENIX1949
    Late on replying as I am still having trouble articulating my comment.

    Seems like this last hospital visit put you in touch with folks along the spectrum of your affliction -- a young person just beginning the journey, you in the thick of it with your wonderful sense of acceptance and humor, and an older person beset with bitterness over her lot in life.

    Shame on the older woman for projecting her misery onto you. I imagine many people feel the need for several showers to wash off the negativity she spews.

    Keep on being Bren with the supporting husband.

    1176 days ago
    My guess is that Helen would have found a reason to be bitter even without chronic pain. I know people like this. I don't think you have any responsibility to her, and like you, I wonder what the doc was thinking having her meet you. Maybe it was the hope that you would rub off on Helen and not the other way around. I fervently hope that you can find a compartment to put her bitterness in, and not have to feel it ever again. I doubt that you could ever end up so hateful, you're not that person. I don't think it's in you. Maybe the doc didn't even realize the personality differences and just thought hey, they both have rare conditions, maybe they'd like to meet. Maybe the doc didn't know how incredibly caustic the meeting would be. I'm so sorry you had to go through that.
    1187 days ago

    You have no reason to feel guilty. It sounds as though your Dr had a patient that was going through a difficult time and wanted her to see that even in the midst of issues with pain that happiness and grace were possible. It was more for her benefit than yours. They should have warned you so that you did not think they were sending you a friend but a desperate bitter person who needed cheering up.

    Pain can take a lot out of a person. One of the reasons I have gained some weight back is that it is hard to cook due to the pain. So I am trying to work on ways that I can make myself healthy home cooked meals that don't require me to be in the kitchen for long periods of time.

    My pain issues are post car crash but everything is getting there. My surgeon said most people would be bed ridden and I am back to work and working on getting my life back to normal. I managed to get off the cane last year so that was a journey from bed ridden to wheel chair to walker to rollator to 4 cane to cane to free.

    I would tell your Dr about the suicide fixation that Helen seems to have going plus tell him that you are just not up to dealing with her if for some reason she goes to him to get in contact with you (low chance). That way if you feel you have any obligation to her you have ended it. (No reason you should feel obligated but you mentioned feeling guilty about not getting email address). Other than that I would not worry about it.

    I do have an idea that might help. Cleansing your aura. It sounds sort of new age but it might help. Set aside some time (plan nice dinner or etc with husband) and start with a shower and think of washing away all Helen's negative energy (just let it go down the drain and out of your life and house). Then once you are all dried off and renewed do some self care you like. Finally follow it up with the fun time with husband -dinner/ watching movie together/ something you both love :).
    1187 days ago
  • DSJB9999
    Bren darling you have nothing to feel guilty about. I agree I think your doctor was trying to show her that some people deal with the condition more positively. You need to use it as a reminder how strong you are and how Lucky you and your dh are to have each other. Hugs to you x
    1187 days ago
    P.S. Please, if you do talk or write to your Dr let her know about the suicide comments she made! I think she was talking more about herself than you...and the Dr should be aware of her comments! She should know this was the kind of thing she was spewing at you...one day she might say it to someone who can't handle that kind of toxic negativity and it could do even more damage than it did to you!
    1187 days ago
    Oh Sweet Bren! You have NOTHING to feel guilty about! I would be elated Helen didn't leave her email! I totally get where your husband is coming from as I found myself angry at your Dr, too, for subjecting you to this woman, especially without any information so you knew what to expect and what she thought would be accomplished by your meeting! You might consider putting it in a note to your Dr. No one deserves to be blind sided like you were! I am so sorry! What a nightmare! I didn't read anyone else's responses to you as I didn't want to be shaded by their remarks! I know you are giving and upbeat, but that doesn't mean you should be used to fix someone else! I have a feeling your Dr didn't know what to do with Helen! She is bitter and projects her experiences on to you! Well, that doesn't mean that's what is going to happen in your scenario! Wow! Just an emotionally painful experience and I am not surprised you cried and are still crying! I relate to your situations in that I have chronic health issues and two knees needing replacement and I know I am not the way my husband married me! And my DH also is disabled now and has many chronic issues including mental health issues! We are both trying to cope with our personal issues and our marriage and it's a rough situation! But we have not given up and do hope things can work out somehow! I, too, have lost friends that I never dreamed would go...that has been so very heartbreaking and difficult for me! Life is hard...people like Helen are not supportive, they're destructive! We don't know if Helen's husband left due to her illness or what her illness did to her! You are not the same people! Again, so sorry and if I can listen or be of any support...I am here!
    Much Love & Hugs,
    1187 days ago
    Aw Bren, that really stinks!

    When stuff like this happens, it's important to remember that not everything has deep cosmic meaning. Helen is simply a moment in your otherwise extraordinary life. Don't let her poisonous energy colour another moment. I am, however, with your husband... I think you need to let your doctor know that you did not appreciate the visit, and that you hope she'll be more discerning about who she sends your way in future. Perhaps even ask her what she thought to accomplish with bringing the two of you together... perhaps her answers will give you some closure and peace.

    ...now as to your lingering distress... as much as you don't want there to be any truth in anything Helen had to say, I wonder if her projections inadvertently tapped into some very deep fears you keep stuffed way way way down beneath all of the graciousness and positive energy?

    Bren, clearly you are the strongest person any of has had the pleasure to meet, but you wouldn't be human if you weren't occasionally afraid. And that is what I hear in this blog. I'm as honoured to share your vulnerabilities, as I am blessed by your grace and gentle spirit.

    If there is anything to be gained from this atrocious visit, let it be whatever learning you take away for yourself. Let the experience heal the dark places inside of you that rarely ever see the light of day (we all have them). It is rare opportunity that any of us receive to the darkness we hold within. I think, perhaps, that you've been given, through Helen, a lifeline to help shine a light into and heal whatever shadows you may have.

    I wish you peace!

    1187 days ago
    Oh my BrennieBoo...,
    I'm so sorry! So awful and so weird and toxic! Who KNOWS what the doctor was thinking except that maybe hoping some of your contagious sunshine would rub off in her but goodness, that is a heavy load to carry.
    Okay, let's take a quick moment to remember that she did not turn into a negative, f-bomb dropping woman overnight. She is a sad sad woman who openly declares she doesn't need anyone. That, is what killed her marriage not the pain. She's lying to herself and striking out at you because you are a shining example of a life lead with grace. You are loved and adored because even through it all, ....... You're a freaking beautiful person. I know that awful feeling of insecurity but it's a lie. Your husband loves you and your marriage is a testament to what an awesome team you guys are. I'm glad you don't have her address, she is destructive. You keep being you, loveable, wonderful, you emoticon emoticon emoticon
    1187 days ago
  • ALEXXX21
    Bren, --virtual hug---

    I can not even imagine this situation. Thank goodness you are a woman of such grace, I don't think I would have handled this nearly as well as you. All I can say is try to let it go. This 'Helen' knows absolutely nothing about you, your husband, or your life. I'm so proud of you for trying to cheer her up and change the subject. You really are a rock star. It's odd how sometimes things like this come into our lives and test our patience. Don't let that negative energy break your eternal positive sunshine, beautiful emoticon
    1187 days ago
  • SYZYGY922
    WOW. It almost sounds like maybe the visit was more for her benefit than yours. I mean, she's the one with the bad attitude. I don't even think it's her fault that she has a bad attitude -- bad things happen and can make us bitter, after all, but it sounds like she was trying to spread it around. I'm sorry that happened, though. I would be very upset if that happened to me. She has her insecurities and she probably doesn't want to be alone with them, so she tried to drag you into her mess.
    1188 days ago
    PLEASE PLEASE read the blog I wrote today called "Don't Cross The Line!"
    1188 days ago

    I really feel as if the intentions of your doctors was of positive intent, maybe they were unaware of how horribly callus she is and really just wanted her to meet someone she could relate to health wise OR maybe they saw you as the strong extremely positive person you are & thought it would rub off on her. It really sounds like she let her illness get the best of her & she is almost jealous of you & the way your life has turned out in comparison, rules of attraction are real so maybe she should get on to raising her personal vibration to attract positivity.Either way I am so sorry you had to experience such emotions & have her low vibrations infiltrate you and bring you down.

    I have always truly admired your pure positivity & strength (heck,I'm pretty sure I tell you all the time ) and that is one of the many reasons why I love hearing from you & being your Spark friend. Surrounding yourself with positive amazing people helps make this life a little sweeter.

    emoticon emoticon
    1188 days ago

    Comment edited on: 1/16/2016 4:45:18 PM
    I second some of the other comments. Do not let her negativity affect you. Now why your Dr wanted her to meet you is his judgement, but I wouldn't focus on it. You two are obviously not a good connection, so don't stress about it. She has a very negative view on life and you DON'T, that's so important, how you've embraced your pain says a lot about you. Continue to fight it with a positive outlook. Don't worry about Helen. You could try to change her mindset, but at that age, she's probably quite stubborn and set in her ways.
    1188 days ago
    emoticon Her negativity is hers... don't let it infect you. Your attitude in the face of chronic pain is amazing, and your friends and loved ones care for you, so don't let her maggots get inside your head. Feel free to rant her. This is a safe space for that kind of thing. I know I won't judge you.
    1188 days ago
    ...person we meet, or there won't be anyone to bring us out of our funk or take care of us when we need it. We also need that positivity in our lives, so why don't we provide it? We are the best ones to do that & it's our lives. Shake it off!
    1188 days ago
  • COMICO120
    Hey, that's rough. Thank you for sharing. You needed this rant and good for you for getting it out there! It might help to pivot the negativity. Try sending out five amazing wishes for Helen into the universe. I'm sending good vibes your way!
    1188 days ago
    Nothing to forgive. You don't have to like everyone you meet. You need to keep Helen in mind though, as a reminder of what you can become if you don't have a positive attitude. Yes, her story is sad. So is yours, so is mine, but we can't infect every
    1188 days ago
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