Kara Swanson's Brain Injury Blog

October 12, 2014

Let’s Put Our Heads Together

Filed under: Uncategorized — karaswanson @ 10:46 am

Most of you are familiar with the common problem of sleep dysfunction after TBI. When our brains slow down and begin to trudge through the muck, we are forced to shut them down and recharge. Often they don’t have an entire day’s worth of energy and efficiency in them so many of us take naps and a lot of us find ourselves up and about during the quiet hours of the night. Many times howling at the moon or, at the very least, playing games on Facebook. 😉

On many occasions around the country when I have keynoted a speech on brain injury, I have found fellow survivors in the lobby the night before at all hours. It is a delicious secret (not any more!) that we have enjoyed story-telling and camaraderie and even the rare sing-a-long at those hotels with lobby pianos in them.

On one such night many years ago, I went to the front desk to get some change first before I joined my tribe. The survivors were all huddled and sharing something fun and funny and I was smiling, watching them from afar. A hotel employee, not realizing I was one of THEM, said, “Yeah, they put their heads together and not a whole lot happens….”

Insert curse words here.

For those of you who have followed my blogs and heard my speeches or downloadable Fork Bytes, you, no doubt, have heard me talk about my uber-strong belief that the best way to not feel disabled any longer is to do for others. The best way to not slip under the waves of having people always helping you is to help someone else. The best way to stop feeling sorry for ourselves is to go out and find others who need our help.

It’s time to put our heads together.

Over the years I’ve seen TV ads for charities which boast that, if you pledge $29.99 a month to help this group or that, they will send you a beautiful sweatshirt. A hat. A gorgeous tote bag. A lovely calendar….

I have always bristled at that. Why don’t they save the money from the flippin’ tote bags and use all the money given to actually help the cause these generous people are donating to?

Lately in the news I’ve seen a few reports where charities have been uncovered and discovered as having misused donations. Some in mind-boggling, criminal fashion. There was one that was actually putting just three cents of every dollar donated toward the cause while the foundation’s leaders lived lavish lives and laughed all the way to the bank.

When you find out how many of your dollars actually DON’T house the homeless or comfort the sick animals or shoe the children or clean the water or warm the disaster victims, you become hesitant to drop that change in the container or write that check and understandably so.

It’s time we put our heads together.

Breast Cancer Month has become, strangely and incredibly, fun. It is fun for so many because pink is fun. Pink is fun on coffee cups and ribbons on sweatshirts. Pink is fun when baseball players use pink bats and football players come out in pink shoes and pink wristbands and there are pink charity walks and charity runs and we all feel good about ourselves.

Breast Cancer Month gets a lot of play and it should. Breast cancer affects everyone because everyone knows some precious “gals.” Their own, their mom’s, their wife’s, their sister’s…

We gotta save the boobs. Gotta save the gals and all the glorious women who sport them.

But, make no mistake, breast cancer is not fun. There’s a whole reality beyond the pretty pink ribbons…

The other night was like a perfect evening with glorious food and friends watching a God-given sunset by the sparkling water. Everything came together and it was magic. It felt right. And I knew entirely that this was a great opportunity for all of us survivors and everyone who supports us to make a real difference. To step out from underneath the label of the disabled by helping someone else. To feel empowered and strong and helpful and valid and active.

It was a great opportunity to put our heads together and soar.

I’ve known Christine Benjamin for more than 25 years. She is a breast cancer survivor who has watched many of her family and friends battle, survive and, too, succumb to this terrible bastard of a disease.

Although she has dedicated a good part of her life to helping those with breast cancer, she’s got a lion’s heart. From the time I was injured and all through these twenty years now, she has shown up in countless ways and on countless days, helping and giving and encouraging and taking care of me.

She’s a plum and I respect and love her dearly.

Here’s where we come in…

We, the ones who many think no longer count. We, the ones who are mocked and giggled at from aside a hotel lobby in the middle of the night. We, the ones who have to be helped and often provided for. We, the ones with the damaged pumpkins, the soft pears…

It’s time to put our heads together and ROCK THIS LIFE!!!!!

Let’s shed that coat of the disabled and feel how wonderful it is to help others. Let’s stop fearing where our donations might end up and make them go to a responsible group that actually digs in and helps people. Let’s show solidarity to the women battling breast cancer by saying, “Hey, we’re here to help. We salute you and we support you and we want you to be here tomorrow!!!!!”

Christine is the Director of a group in New York which actually helps people. They work out of a modest space. They don’t funnel donations to lavish vacations. They don’t take your dollars and drive them away in Jaguars you help to buy.

No.

They put their heads together too.

With seventeen employees, only six working full time, they dig in and they help real people with real problems. All of their supportive services are provided by people who have faced breast and ovarian cancers and who have been specially trained to offer counsel, compassion and direction. They bring in physicians and researchers and practitioners to offer webinars for people all over the country. People who need to feel empowered by information and options during a crucial time when, so often, they lose hope. People who have had their lives turned upside down like a snow globe after some dreadful and scary-as-hell diagnosis.

People whose plights we can appreciate.

You can donate to this group and know your money is actually making a real difference. All of it. A dollar. Ten dollars. Whatever.

You aren’t going to get a tote bag. You’re not going to get a calendar. Nobody’s going to start calling you every week to give them more money.

This is one moment. One moment when the marriage of two powerful groups of people can do extraordinary things together. We have the opportunity to step outside ourselves. To be the ones helping for a change. To target a disease that affects all of us.

Better than a tote bag any day.

I know you guys. I’ve known you for twenty years now. Let’s knock this out of the park. Let’s show the women fighting breast and ovarian cancers that we over here in the pumpkin patch have fabulous powers! That we stand beside them and cheer them because we understand what it’s like to survive something that knocks our worlds sideways.

That hotel employee who thought that, when we put our heads together nothing happens????

Let’s show them what we’re capable of. Send a dollar. Send a few. Know it means something. Know it wields a power so intimate that it will actually help someone who needs your help. Our help. Together. What could be more important than that?

Christine is going to make sure that all of our donations go to something special and specific and I’ll report back in a month and tell you exactly how your donation helped. Actually helped someone real.

This is exciting for me and I hope you’ll join in. Put a note in it to Christine that says, “Kara’s friends are putting their heads together” and send it in care of:

Christine Benjamin LMSW
Breast Cancer Program Director

SHARE
1501 Broadway, Suite 704A
New York, NY 10036

http://www.sharecancersupport.org

Thank you for joining me in this. This blog reaches around the world and I know that the hearts and hands of the wounded can move mountains. Let’s move mountains. I love you guys!

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9 Comments »

  1. :)) writing a check and note right now… Thanks. :)) Let’s rock someones life!!

    Comment by Linda — October 12, 2014 @ 11:30 am | Reply

    • You make my heart sing!!!!! xo

      Comment by karaswanson — October 12, 2014 @ 11:59 am | Reply

  2. Nice !!! :)) xo

    &

    …enjoy everything…

    Date: Sun, 12 Oct 2014 14:46:57 +0000 To: lindylu42@hotmail.com

    Comment by lindy lu — October 12, 2014 @ 11:30 am | Reply

  3. Kara, I so related to everything you said… both about people underestimating tbi survivors, and about the power of helping others, the reluctance to give when you don’t feel like what you are able to give is used for to actually help and make a difference, and the endless phone soliciting and mail requests for more and more that follow when you do give. I end up feeling like what little I can afford to give is just used for more soliciting – and heaven knows I already have more totebags than I probablay will ever be able to use in this lifetime! It would be wonderful to know that every dollar I give really is helping something as important as women with breast and ovarian cancer. So, do checks get made out to SHARE, Share Cancer Support?

    Comment by Kathie M. — October 18, 2014 @ 2:40 pm | Reply

    • You ROCK, Kathie!!! You just made my day, first thing this Sunday morning. :)))) What I like especially about what SHARE does is two-fold: Not only do they take survivors like us and train them and put them on the help lines because they’ve been there and they actually know the real experience, but they also bring in big guns in terms of information and make it available to anyone. I appreciate this for all of us who don’t make a ton of money after our injuries and wonder if we have access to the best. A poor woman in a tiny county in wherever land can pick up the phone and listen to a webinar by an expert they would normally not have access to. It’s the gift of peace and empowerment, knowing more than you knew. Hearing more detailed information and cutting-edge treatment options than maybe your one doctor can offer in a six minute visit. It’s real women who have survived turned back and saying THIS is a way. THIS might help save your life and your hope and your sanity and your self esteem. Yes, make the check out to SHARE. I’ll ask my friend Christine, the Director, to actually report to us exactly where your money went and who it helped. Thank you for joining me in this. You have made my day :))))) Kara

      Comment by karaswanson — October 19, 2014 @ 9:50 am | Reply

  4. Reblogged this on Broken Brain – Brilliant Mind and commented:
    Yes

    Comment by brokenbrilliant — November 18, 2014 @ 9:21 am | Reply

  5. […] Originally posted on Kara Swanson's Brain Injury Blog: […]

    Pingback by Let’s Put Our Heads Together - Head Injury Talk News and Recovery | Head Injury Talk News and Recovery — November 21, 2014 @ 8:00 am | Reply

  6. I just wanted to send out Thanksgiving wishes to everyone who has written on this page. We all know the burden we have been given to bear which none of us asked for. Today is a bittersweet day with the whole message being about thankfulness. Well I can say that I am so thankful for this place to share and to know that I am not alone. God Bless all of us going through the horror of dealing with brain injured love ones.

    Comment by Margaret — November 26, 2015 @ 12:31 pm | Reply

    • Your side of brain injury includes just as many dreams and hopes littered along the side of the road, abandoned after this monster came into your lives. I hope this place, any many more, provide the comfort of knowing you are cheered and well-wished. I hope that all of you find the right recipe, in your own particular situations, to improve your situations so that you can feel you are living and loving again.

      Comment by karaswanson — November 27, 2015 @ 7:29 am | Reply


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