Thursday, July 8, 2010

Sometimes you get Scrooged

Friends...How many of us have them..Friends. Wait wrong song.

You know that old song, make new friends, but keep the old, one is Silver and the others... Gone? or is it Gold?

I must say you really find out who your true friends are when you get sick. Nothing causes you to reevaluate your friendships, priorities, and where you expend your energy like getting a chronic illness.

If you only have so much energy allotted to you each day (or spoons if you will), where you chose and with whom you chose to spend that energy becomes priceless.

This disease, well any disease I would think, but this is the one I got - so this is the one I know.. This disease is a series of losses. I know I have said it before - but this disease is a never ending series of loses and readjustments. Some bigger and more painful than others.

And there is nothing more painful than losing a friend. It hurts you to the core. Especially when the loss is due to something you did not chose. It's bad enough  you get sick, but even worse that the people who you assume will be there and care, aren't and don't.

I am not sure that is entirely fair to say. People care and show it in their own ways. I try to be really cognizant that not everyone feels like me or expresses like me, and therefore I try to allow the people in my life to own that and I accept them for who they are. Because I love them.

For instance, I know my husband is not the best communicator in the world. I mean - Hello - the guy told me that during deep conversations when its his turn to talk he "hears crickets" - he just doesn't know what to say. I get it. I love him and accept that when I tell him how I feel, I tell him what I need and I may not get that back in words.... but I do get it in his actions. Or he will try in his own way, but I accept I am not going to get a dissertation of how he feels.

I know some people are not as touchy feely as I am, nor are they as fluffy and upbeat with emotion. I understand, I get it and I accept it. But I also know that just because you may not be a certain way doesn't mean you shouldn't try. Especially when I need you to. Especially when I verbalize what I need from you and tell you.

I don't ask people to read my mine. If I need something desperately from someone I will tell them. And I did.  "Hey, I get you are not fluffy but I need you. I need you more now than I ever have. I am scared and I need you to be my best friend. I know I will be needy but I am scared to death and I need you to be there for me"

I lay it out on the table and because you love me, I guess I feel like you are supposed to try. Sometimes you do things not because you want to, but because the person you care for needs you too.

Sometimes you take one for the team. Maybe giving someone a hug is right up there with going to the dentist, but you see someone in pain that you love and know they need you so you hold them. Cry with them and tell them it is okay, we will get through this together.

I get it.. Having a sick friend is probably a drag. A pain in the ass. Especially at the beginning when everything is new, and you feed in to all of the websites telling you your dead in 5 years, when you are latching on to any hope and looking for any case study that will save your life, sending endless emails of case studies or treatments and seeing more doctors than Madonna has bustiers. I get it. It probably gets old.

But the reality is, everything that is emailed, spoken, shared and said is all real and is all really happening to someone you love. And it is painful and lonely to go through it alone. And when friends don't acknowledge and talk with you about your illness and what it means, that is exactly how you feel. Alone.

It is so lonely to get sick. You lose a confidence in life you used to have, you lose energy so you don't go out as often, you lose so much and your mourn. And to go through all that without a good friend is painfully lonely. The only thing worse is to go through it with a friend who acts like what you are going through is insignificant. Who doesn't validate your fear, your illness or your need.

I had a friend when I was diagnosed. It was a dear precious relationship to me. A long friendship of intimacy. Where private thoughts were shared, confidences were held, confessions were made. There were ups and downs, good times and bad. It was a friendship. A safe place I thought.

Then I got sick. Mind you, my timing sucks. Not only did I get diagnosed with a rare incurable illness, but I lost my job the same month. And not only did I do those two things, but I did them during the worst economy we've seen in ages. And not only was the economy bad, but we lived in one of the worst housing markets in the nations.

So my friends and neighbors - Everyone I knew was going through heavy duty stressful times. People losing homes, people walking away from homes so underwater their address was next to the Titanic. My timing sucked. I get an F in the timing department.

But in some weird way - the economy and housing we were going through it together. We were helping each other through it and talking about it. Being able to talk about it made it so much better. It lessened the stress and made it livable. We were a community and we had gathered around each other to help. Like communities do during a natural disaster. Only this wasn't natural, it was economical - but we were there for each other.

So I guess I thought that when I got sick, my community, my close friends would rally around me, we could talk about it, we could lessen the stress and make it livable together. But that didn't happen.

I can't say that it was all bad and heart break. Out of the loses of some friendships, new ones blossomed. People that used to be just acquaintances opened up to me to say some of the kindest words that have ever been said to me before. New friendships were made and those turned out to be my saviours.

But I mourned over the friendships lost. I cried and mourned and spent way too much time wondering why. Why doesn't she care? Why am I not good enough for her to show me she cares? Why am I not worth it for her to give me what I need and what I asked for?

Then after many moons of crying, I realized it wasn't about me. It was about her. People can only give what they can give. My mom once told me some people just can't handle dealing with an illness.

That concept is foreign to me. How can you not handle dealing with someone who is sick? I mean, how can you not have compassion? How can you not have empathy? How can you not be strong for a friend or loved one? But the lesson I learned or perhaps was supposed to learn again, is judgement.

Just because I would have done, or have done or would do - does not mean that others are capable of the same. Perhaps I was supposed to learn to cut my losses and fill my life with positive energy and people I could rely on without judgement.

It was such a painful journey though. I remember during those first few months even thinking "Okay, well she cant handle hearing about it or reading about it, so I just wont talk about it with her" - and now I realize how sad. How truly painful that I was willing to stay in a relationship where I could not talk about something so serious that was happening to me. I guess I felt like, well - I get it, your not fluffy, your not overly open emotionally so I will accept your limitations. But in doing so, I felt slighted. I felt like our friendship became an acquaintance. I felt like, I get it your not fluffy but sometimes you need to get over your bad self and love your friend more.... especially when I expressed what I needed. Sometimes you need to make time to give back.

The title of this blog is I got scrooged and you may wonder why. Well, when you are diagnosed with anything I think the first few months and probably the first year are an emotional roller coaster of readjustments. Finding a new normal. Acceptances of new limitations and grieving of loses. It's a doozy of a ride. And during that first year, friendship is so crucial. With illness all of a sudden, nowhere and nothing is a safe place any more. You realize anything is fair game. Life sometimes does not play fair - so you crave safe. You crave people and closeness and love.

So with that said, holidays become so much more important than they ever were before. The irrational you thinks "What if this is my last Christmas" and the rational you that is trying to remain calm just says, "I don't want to be alone this holiday - I need it to be joyous and full of love and laughter"

One of the most painful (not the most, I have a past that could be an after school special) moments I have ever experienced was just being diagnosed with an illness and finding out that you are not invited to your best friends house for the holidays because "Your illness is a drag and she cant handle it"

Wow - Talk about an iron skillet to the face. Ouch. So after months of going without what I needed in our friendship, accepting limitations I shouldn't of had to accept from a friend, I am then not invited to Christmas. It was so painful. I had already expressed what I needed from my friend and in that plea I think I even stated that I needed to be around friends during the holiday - and apparently my illness was a drag. All I could say was...."I got scrooged"

I think I was starting to accept that I was not going to get what I needed from that relationship, but I was so sad. It hurt so badly. Again - I expect no one to read my mind, so I verbalized my hurt about the holidays. I was sad. But I don't think my pain, hurt or betrayal was understood. I don't think the understanding that we are all going through stressful times, we are all losing our homes, we are all hurting from the economy - only I am doing it with no job and a new illness was there. Perhaps she was only able to handle so much stress and wasn't strong enough to be my friend to. Perhaps she also cut her losses.

I try to forgive and understand the why behind the what people do, so the holidays passed but things were not the same. As she pulled away I became close with someone who shared my same perspective on life,  sense of humor and extrovert. I can honestly say I could not have done it without her. I would not have made it through the month of testing without someone to giggle and gag with over the invasive procedures. I would not have made it without someone to love me enough to joke with me about the darkness and misfortunes that may lie ahead, and cry with me when I got scared. And listen when I needed her too. Some of the funniest one liners were made during these times. "Go ahead and pick up the kitty, if she scratches you, you just won't heal"

At the beginning of my new friendship one of the most beautiful gestures that has come from this journey was when I mentioned something about muscle fatigue, and my new friend responded with a well educated response about my disease, and I asked "How did you know that" to which she responded "I have been reading up and researching about Scleroderma since you told me you were diagnosed" I don't think my other friend had even looked it up.

I was so touched it brought me to tears. What a beautiful, selfless, thoughtful act that I will be forever grateful for. At the moment I knew she was a true friend. Since that day we have learned so much from each other and supported each other through some tough times. We've had tiffs and ups, downs but we both know our friendship is a safe place and we can be real and raw with our emotions and if one of us needs the other, we know they will be there.

My friend was there while I mourned and grieved my old friendship, and understood my sadness and confusion, and understood my decision to cut my losses. I just did not have the energy anymore to give and not get back. My energy is too precious a commodity now.. and I let go of that friendship. Letting go was so difficult, but time heals all wounds. There are still times I want to pick up the phone to tell a silly story, but I also realize since the time has passed I haven't felt as empty and let down. I know where I stand with the people I have in my life  now.

I think the last straw was when I told her I had to start chemo and the response back was... "Are you going to the gym tomorrow"

I guess that was my last clue that I should cut my losses and fold em. Still very painful. Still very sad. But in that pain came friendships from places and from people I never expected and never even realized were my friends. It is quite eye opening. So many lessons to be learned.

I had posted a question about loss of friendship after diagnosis on one of the Sclero site and sadly and surprisingly there were a few people that validated they too had lost friends. People not understanding the new limitations of disease, etc.. I find that heartbreaking... But I guess we're not in Brownies anymore and not "friends till the end"

Life is funny. Life is good.

Hope this finds you all well and wearing a great big brownie smile!!


  1. Sorry peeps. I have no idea why that one area is highlighted white and I cannot remove the yellow from the highlighted words. I think there was a glitch with spell check. Sorry!!
    Peace and Love ~

  2. All this time I thought I was the only one going through this and feeling these things. Thanks for posting.

  3. Hi Krissy!!

    I'm sorry!! It is so painful.

    I know sometimes it's really lonely with the Big S, but remember, not to sound like a total cliche' - we're in this together, which helps a little

    Especially when you hear and get validation that others feel/have felt what you do too.

    I am sending happy vibes and happy thoughts your way today!!

    Happy Friday!