Did anyone else find Christmas depressing?

[dragonmama]

Christmas was roughly 6 months since diagnosis. I'm still plugging away, making appointments, collecting information, assessing alternatives, hoping a follow-up MRI will show no growth so I can relax into watch and wait status for a while.

It was also 6 months since I told my close family and friends about my diagnosis, and quite frankly, the amount of support I've received from my nearest and dearest has been pitifully limited. Four of my five closest friends became instantly distant and uncommunicative. Two of them didn't even reply to my email for 6 months (oh thanks - they manage to muster a few words of concern just in time for Christmas)! They've avoided all contact with me for the past half year - despite the fact that I do not want to make my AN a focal part of my life or interactions with others. I would just like to be able to do normal things, like spend time with my friends, have a laugh at things, share our experiences - the usual kind of thing you do with friends. I'm not in the habit of making myself a burden...

My hubby is doing the typical man-thing and focusing on supporting me in practical issues, feeling completely at a loss and over his head in the deep end when it comes to supporting me emotionally. That's mostly fine, since I do manage most of the time, and I manage with enough emotional energy to help him through the rough patches and our kids too.

I have one friend who has actually continued to connect with me as closely as ever and who asks me about it, demonstrates concern, and is willing to listen. Like I said, I don't want my AN to be the focus of my life, and she totally *gets* that, and we mostly talk about other stuff and have a great time together. In fact, most of our conversations don't even touch on my AN - they're just about connecting and caring about each other and being friends. (Of course, she's the friend that lives halfway across the continent.) I also have my acupunturist, who is really wonderful - a very knowledgeable man with both eastern and western medical training and a PhD. He is a great resource and I can bounce things off him and get a well-considered response complete with things to consider, and he's very aware that there's more to me than just a tumor.

I have to avoid talking about it with my mother, because she has a tendency to focus on worst-case scenarios, building them up and stressing me out completely. If I talked openly with her about my AN, I'm sure I'd die of a heart attack within the next year - she winds me up that badly. LOL!

And that's it for the people in my real life.

Made me feel really grumpy at Christmas. Hard to feel like being generous or loving or connecting with people who've taken my emotional support for years, but run like scared chickens when it's time to return the favor. And that, in turn, makes me wonder what they heck I've done with my life? Have I tossed all that time and energy at the wrong people? What have I been doing wrong when I've been choosing friends?

I knew I was taking a risk when I told people about my diagnosis, because about 9 years ago I lost a lot of friends when I had a metabolic disorder (hyperparathyroidism) and required surgery. I found out later that someone had got it into their head that I was *minimizing* what was wrong with me. They assumed I was dying of cancer and wanted no part of that. And they gossiped about that behind my back and most of my community took their word for it and ran scared. But my closest friends all stayed true through that time. They knew I was being open and honest. And when people finally came to trust that I wasn't dying of cancer - after two years! - they started coming back into my life.

So when I was diagnosed with my AN, I thought back to that experience and I realized that I couldn't just talk about it openly, that I'd scare too many people off. But I didn't realize that I'd scare off the people who've been with me for 10, 20, 35 years!

And I know that I'm not really all that depressed about the amount of emotional support I've been given, because I'm pretty self-sufficient emotionally, and aside from a bad spot here or there, lasting a couple hours at a time, I've really been fine, and all I really could use is a friend to remind me that I'm fine and give me a hug, to get me over those bad spots.

But I am depressed about finding that I hit the limit of what so many of my closest and longest friendships could tolerate. I know I've seen this discussed here on other threads - so I know many of you will understand and have experienced this dynamic too. Can I just yell "Blargh! Pah! Poop!" and get this disappointment and frustration at human frailty out of my system?

[Tod]

Yell away! Vent as dramatically as you want, you are in a safe place.

The holidays can be terribly difficult, even for people seemingly without problems. I rode into the days of before Christmas on a bit of high, but there was no escaping the fact that I would begin radiation as soon as they were past. So, it was easy to not be happy. It would have been easy to be depressed.

It is something I fight on a regular basis. For me, the key is to understand that while occasional sadness, depression, and fear are okay, it is the HABIT of any or all of those that is detrimental. Despair is the habit of giving up.

Acknowledge your feelings. Accept them as legitimate. Acknowledge that your friends and family are imperfect, just as you are, and suffer the same difficulties in finding the right emotional response as you do. I suspect we all want to be taken care of as we take this journey, but for many of us, it is just not going to happen. We have to take care of ourselves.

We can do that by reaching out to each other here, as you have done, by sharing our stories and feelings and finding out that we are not alone.

At one point in my life it was very difficult for me to realize that none of the people I loved were perfect. Then I realized that took a lot of stress off of me to stop trying to be perfect. Once I understood that, I could just yell and vent away. ;-)

This journey is difficult, no matter what time of year. But in truth, you are not alone.

-Tod

[Jim Scott]

Hi, Gael ~

Although I'm sorry to learn that your family and friends have chosen to ignore or withdraw from you as you struggle with your AN diagnosis, as you astutely noted, this is, unfortunately, quite a common reaction.  You seem to have accepted that reality, which is a positive because once you do so, it's easier to forgive and move on with what you have to do for you.  Of course, your frustration and disappointment are totally justified and, as Tod posted, this is certainly the best place to vent those frustrations because we understand them, many of us having lived through the same thing. 

It's a shame this situation dampened your enjoyment of Christmas, but it is not surprising.  My suggestion is that you continue to accept the reality that everyone carries their own physical and/or emotional burdens, some you may not even be aware of, and don't care to help you carry yours.  Some will simply not understand your feelings and some may but won't want to deal with them.  Even if you've always 'been there' for family and friends in times of stress, that, sadly, does not guarantee that they will automatically reciprocate.   It isn't your failure but theirs.  My view:' so be it'.  You can't change people's attitudes and being angry and/or resentful with them accomplishes nothing good.  I would try to accept the lack of emotional support as simply human weakness, take what you can from those few that are willing to offer it and move forward, looking at the day when this entire experience will be behind you.   Meanwhile, you can take some small comfort in knowing that there are quite a few folks who have gone through this experience, had to deal with a similar lack of support from friends and family and did just fine, with a much sharper knowledge of human nature and who they could count on in the future.  For just about all of us, that will be a short but valuable list and one worth keeping.

I trust that you'll adjust be able to deal with this disappointment as you move forward.  You'll certainly be in my thoughts and prayers. 

Jim    

[CHD63]

Hi Gael .....

As both Tod and Jim have said, here is the place to vent ...... we all understand exactly what you are feeling.  No one can really understand the terror we feel upon diagnosis and how it affects all aspects of our lives, except for those of us who have traveled this path.

Those of us who deal with hearing and balance issues (to say nothing of the tinnitus), have chronic fatigue from the energy we expend trying to hear and stay upright.  This puts our emotions constantly on edge at all times.  Others who do not have these issues cannot possibly understand.  It is very easy for them to think, "Well, if he/she would just get over it and move on with life ....."  Well, we cannot just get over it.  It is something we will deal with to a greater or lesser degree for the rest of our lives.  Now, I am not saying we should use this as an excuse, but it is a fact of our lives.

Having said all of that ..... I really try my level best to "act" normal because I want to "be" normal.  My dearest and closest friends understand what I deal with on a daily basis, but they also understand I do not want to use it as an excuse.  They (and I) know my limitations and we use humor as much as possible to lighten the seriousness of the issues.  "Hey, my drunken friend, grab on to me!", etc.  If you can laugh at yourself, they will laugh with you.

If your friends are distancing themselves from you, it is either because they are not strong enough to handle the situation or they were not true, caring friends in the first place.

Many thoughts and prayers.

Clarice

[dragonmama]

Thanks for the wonderful replies!

Jim, I hear what you're saying and I appreciate your wisdom. I do try to take my friends' failings gracefully, and I try not to hold anger or grudges. I know that when they decide to spend some time with me again, I will welcome them back, without reproach, because that is the kind of person I choose to be. I don't want to sink into despair or revel in self-pity, but I am finding myself *lonely* because they've withdrawn their friendship. And since I'm an introvert and take a long time to get close to people, it's not so easy for me to just replace them with someone new. A close friendship takes me years to develop.

Sigh. I was wondering if the cosmic message behind my AN was that I listen to others too much and should spend more time listening to myself. Well, I had plenty of time to do that over Christmas! Maybe the real message is that I have to become a more interesting and amusing companion for myself...LOL!

Tod - thank you for sharing about your radiation - you reminded me that other people have bigger worries on their minds. A little perspective is always a good thing! I hope everything goes well for you. I'm including you in my prayers.

Clarice - thanks for your words about how what we face on a daily basis is part of our lives now and forever. Sometimes I just need to hear that what I'm dealing with is really real. People have a tendency to minimize things or explain away things in an effort to comfort, but I find that their words don't comfort me - but lead me into self-doubt.

My younger daughter was diagnosed with an anxiety disorder in November. I'd been telling people about what was going on with her since she was 3 (yes, right around the time I started to go deaf), and I first noticed things I felt weren't normal, but until that psychiatrist said definitively "Yes. This is real," all those friendly attempts at comfort by minimizing or explaining away things weighed on my mind as a huge self-doubting crow in the back of my thoughts, cawing against my own instincts and observations. They pulled at my attention and energy so that I wavered uncertainly and couldn't commit to a course of action - I wasn't able to confidently lead the way for my daughter.

She has made *huge* progress since that diagnosis because now we all know it's real, and we all know how to proceed and it turns out that the right path was the one I kept starting down, only to be pulled up short by the self-doubt I fall into when all those close to me are determined to pretend that what I see isn't there. I think I must take their words too literally!

Gael

[Cheryl R]

Gael,    This all is just my own opinion.  I bet every person that that is now avoiding you, would each have their own different reason for why now based on their own personality.         I do think many just are not sure now what to say to you.     We know it is not cancer but some may associate as similar to cancer and scare them on what to say.     Also some might be thinking this could be me and  I don't want to think that a tumor could be happening to me.              I have a cousin who is very nice and we keep in touch due to distance but she never wanted to hear one word about mine and said so, so I would not think it was about me but she did not like to hear about anyones health issue.  She apologized that she is that way with everyone.      That really surprised me.        But yes a true friend will do what they can for you in spite of how it can bother them or scare them, or they are not sure just how to act towards you.            You know your friends and their personalities,while I do not but this is opinion about some people.       I think is about any health issue and not just our ANs.                I hope it does go better for you!                Cheryl R     

[Ned]

I just rediscovered this site, after FSR in 2003.  In the beginning I was wait and watch and it was emotionally horrible.  My emotions got somewhat back in control after treatment.  In my case,  I felt very alone then and even now.  Initially I joked about it, using it as an excuse "hey I have a brain tumor and can't do that".  Most people just don't understand, some do but most don't. 

[dragonmama]

I hear you Ned! I've done a bit of joking about it, but I find it's kind of like dropping a time bomb in a room - people escape pretty quickly.

I guess this must be the way anyone with a chronic health issue must feel - certainly gives me new insight into what life is like for them on an emotional level.

An older guy on the bus the other day seemed kind of chatty, like he was lonely, and mentioned he had diabetes. I said something to acknowledge how hard that must be on a daily basis and he actually teared up and was really grateful. It took so little to connect with what he was going through.

[Ned]

Amen to that.  This journey has taught me to be so much more compassionate, it has made me a better friend, father, husband and son.

[MDemisay]

No to tell the absolute truth, it went very well, I blocked the news of my tumor's regrowth very well. I had gotten the news in October and had been so nonplussed by it. That I thought well we'll do something about it after the holidays were over and I planned to tell my parents( who are aged) now in October. Of course, when My mother picked up the phone to tell me of the sale of their summer home this trumped my news. Oh well! What a mistake! I finally told them recently!

The Christmas season was a blast!We hold an Annual Toy Train Show every year since 2008, 2011's show was spectacular!

Mike

[dragonmama]

Wow Mike - you have quite the strength of character there!!! It took me the better part of this whole year to get to the point where I am able to block the existence of my AN out, so intrusive thoughts and feelings don't take over and ruin every day.

Do you have a treatment planned? Wishing you more strength and healing energy.

[MDemisay]

Not really! It almost fell apart, you see I was supposed to set up advertising and cable coverage for the event but that was supposed to be set up in October! In my state of mind, I had forgotten to do that, luckily from past experiences the community responded and the event was well attended. Too much energy had gone into the tables and planning to worry about news and advertising.

Oops! Blame "Irv"!