Friday, September 21, 2012

...and the Good News

Last time on My Life as a Mighty Mito Mamma...
I'm not going to recap something I wrote 2 days ago so you'll just have to go read it...

Something happens that amazes me, astonishes me, surprises me, and makes me go "Hmmmmm" all at the same time.  That is the "good news", even though it's not news.  It's really just the "good" part of the story.

So, after telling you about how sad it makes me that the people I think are close to me and actually care for me prove otherwise with their actions, I'm now going to tell you about how happy it makes me that people I barely know or complete strangers do remarkably kind things to help me.  (I think that was the world's longest run-on sentence... but I don't think my 12th grade English teacher is reading so I'll be okay.)

As I've been dealing with the upset of final proof that certain people really just don't give a shit as much as I thought they did, I have also been dealing with learning how wonderful some people in this world can be.  Unfortunately, the kindness of others that I've experienced has not completely outweighed the apathetic nature of my "friends" and some family.  It's getting there, though.

As all of you know by now, I was the chairperson for this year's Energy for Life walk.  Chairperson or not, I try my hardest to raise money for the EFL walk and United Mitochondrial Disease Foundation.  I also ask (make that beg) my family and friends to walk with us as well as raise money and spread awareness.  

As I mentioned in the first half of this blog post (2 days ago), not all of my family and friends walk with us or raise money.  I understand if you can't walk due to medical reasons.  However, if you can't walk, you can volunteer.  I start telling everyone I know about it over 2 months prior to the walk.  How many people already have plans on a Saturday morning 2 1/2 months ahead of time? The answer is no one, unless they're traveling.  Okay, so you can't volunteer because you have plans.   You can donate money.  Oh, you're broke because of this shitty economy?  That sucks.  Well, you can still raise money and awareness by asking everyone you know to donate and request that they ask everyone they know to do the same.  Most people, however, do 3 out of the 4 (walk, donate, and fund raise) and some even do 4 out of 4.  

So, if you supposedly care about me, why is it that you were unable to do any of the things listed above?  Insert lame excuse here... or long list of lame excuses to cover all 4 of the things someone could do to participate.

Then there's the people who've never met me who donate $500.  Not only has the person who donated that money never met me, but they also barely know the family member who asked them to donate.

I do have one friend who works her ass off to raise money for the walk.  She even donated her time this year to help me plan and prepare for the walk despite having a family of her own to take care of and a full time job.  While my friend (we'll call her "rock star" for the purposes of this post) was fundraising at work she was asked to explain Mitochondrial Disease.  She explained the disease to the best of her knowledge to her coworker.  He then asked her if I have kids.  She, of course, said yes.  He asked how mito is affecting my kids.  Rock Star told him what she knows about how it's affected my kids (which isn't a ton, but a little).  He said "it must be really hard on the kids".  She said "yep, it probably is."  He asked her how we're doing financially and she told him we have lots of medical bills,etc. and that I had just spent 4 days in the hospital the week prior to their conversation.

When they were done talking, the coworker gave Rock Star $100 for the Energy for Life walk.  That is awesome!  A hundred dollars from someone who's never met me.  I was ecstatic to hear that.

A little while later, the same man came back to my friend's office and gave her another $100.  This time, however, he told her it's for my husband and I to spend on my kids!  He told her to make sure I use it on my two girls - birthdays, Christmas, sports, or other activities... whatever I want for them.  

Wow!  Needless to say, I got a little verklempt.  I was practically speechless.  And if you know me, that means a LOT.  It takes a lot to make me speechless.  This person also wanted to be sure to remain anonymous as well.  Granted, I wouldn't have known who it was even if I knew the name.  But he didn't want to take any chances, I gather, that he would be recognized for it in any way.  Talk about selfless.

Side note - This is funny.  I wanted to put that SNL video here because I used the word "verklempt".  At the beginning of the video Mike Meyers (Linda Richman) says, "First of all, I wanna say 'Happy Birthday' to my daughter, Robin."  Lol.  "Why is that so funny," you ask?  Well, my name is Robin and today is my birthday.  

So, why is it that a complete stranger can donate $200 while my "friends" can't donate $5?  Why is it that a complete stranger takes more time to ask how I'm doing, what our financial situation is, and how my kids are doing than most of the people I know?

I guess the only difference is that those people don't know me.  That's the only thing I can tell.  I must not, therefore, be as good of a person as I had previously thought I was.  It must be a personal thing.  What else could it be?  Why else would someone who doesn't know me go out of their way to help but people who do know me could care less?

The only other thing I can think of is that people in this world SUCK!  I expect people to be kind and giving and loving and caring.  However, I obviously expect too much.

Regardless... I am going to continue to be kind and giving and loving and caring to those who are the same to me.  Should I be the "bigger person" and act that way toward everyone regardless of how they treat me.  I guess so.  But that's not how I roll.  If you are there for me, especially during the important times in my life (good or bad) then I will do anything for you.  I am NOT, however, one of those people who can love and care for someone, give them pieces of myself, and open myself up to them to only have them not return the feelings.  After everything this disease has taken out of me, I don't have enough pieces of myself left to give them out freely to people who don't return it.

Last Saturday, at the walk, I had a smile on my face just about the entire time.  There are lots of reasons for that but I'll just discuss one right now because it's fitting.  I absolutely LOVED being around other people who are dealing with Mitochondrial Disease in one way or another (suffering from it themselves or caring for a family member suffering from it).  I was not alone.  In fact, far from it.  It wasn't just being around others with chronic illness.  These people know almost exactly what I'm going through and vice versa.  Considering the fact that the large majority of people in my life do not know what I go through on a daily basis or how I feel when I'm real sick, it's so nice to be around people who do.

Because of the walk I have met a lot of great people in the mito community.  One of the people I met is the mother of an adorable little boy who has mito.  We have been facebook friends for awhile but never really talked or met in person.  I invited her to the fundraiser party 3 weeks prior to the walk and, to my surprise, she came and even brought her son.  I was so thrilled to finally be able to meet her and her son.

With us being facebook friends, she saw that I was in the hospital a week before the walk.  On the day of, her and her family/team stopped to talk to me and introduce me to her husband.  Once again, so glad she did.  Partly through the walk I was told that there was a family stopped on the side of the walk route.  I went to check it out and make sure everyone was okay when I saw that it was her.  She let me know that they were just stopping to check on her son.  She then informed me that she was worried about me being at the walk.  She said she couldn't believe I was there and doing everything I was doing with the fact that I had just gotten out of the hospital a week prior.  SHE was worried about ME!  Really?  Even my own friends and family were not worried about me (except for my parents and husband... that's almost always a given when I'm talking about family & friends who don't do this, that, or the other).  It really touched my heart to hear that she was concerned about me, what I was doing, and that it was going to make me really sick again and/or put me back in the hospital.

I have come to the conclusion that I need to try to get together with the "mito community" more often.  I think I will be reaching out to others to see if they want to meet more often than once a year at the Energy for Life walk.  It just seems as though they would understand and be more sympathetic to my situation and how sick I am.  Obviously having "well" friends does not work well for me.  (ha!  no pun intended... it just came out that way.)

We will just have to see what the next few weeks/months brings.  Will I move on like I've been wanting to do for awhile now and try to find/make new friends... friends who understand me?  Or will I dwell on the past and continue to put up with friends who clearly don't have room for me in their thoughts, hearts, and lives?

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