Just when I thought I knew myself so well…

February 14, 2007 on 6:03 pm | In LMS | No Comments

Jeri & Fran 

I have a MySpace - okay, I have THREE MySpaces - for three different purposes.

I have my personal friend page and my business page, where I sell my products (www.myspace.com/boobease).The most recent page is the newest phase of my grieving process. I didn’t know it was, but [my higher power I choose for simplicity’s sake to call] God led me to it. I have been compelled for the better part of the last four years to raise awareness that Leiomyosarcoma (the cancer that killed my daughter) exists. Because it is a rare cancer, it does not receive funding for research like the more common cancers do. Those of us who have been affected by this disease are driven to help find a cure.I suddenly became ready, about a month ago, to post my page. I called it “Leora’s Legacy”, and gave a little background and info. WOW- what a response the page has received!

Upon thinking about how I should have done this a long time ago, I realized that I was not ready before now. I spent the last few years sorting things out, and taking care of my little family, so we could heal. Hindsight being what it is, I am seeing how I have gone through this odyssey we call grief just as I was meant to. I have progressively risen to different levels of healing as I go. Of course, I would prefer to know I am doing this as I go, but for whatever reason, I guess I am not meant to know until I have moved through it.

When I posted the MySpace page (http://www.myspace.com/leoraslegacy) a floodgate was opened of others affected by this disease. People from everywhere are contacting me. LMS attacks only hundreds of people, but the ripple effect is enormous. Each one of those hundreds has many people who love them. I realized this is not a futile cause! Awareness is not hopeless!I’ve spent the last several weeks trying to analyze the intense emotions I have been feeling. At dinner the other night, Fran and I sat across the table from each other, and he asked me how my page was going. My eyes immediately welled up, and I felt as though I would burst. The best I could explain to him what was happening is that I feel this tremendous power inside of me. My body buzzes, and I feel so emotional. All of these people are reaching out to me, and I FEEL them. I feel their love, their strength, their fear & frustration, their anger, and their need to reach out to me as if I am their hope. 
He asked me if this power was a good or bad thing. I told him I wasn’t sure, and that it scares me to death. He said, “Maybe it’s divine.”

I instantly knew what he meant. This man that I share my life with struggles with his own relationship with his own higher power, but I knew at that moment that underneath it all, he believes. He had probably made the most profound statement to me that I had ever heard.

I instantly knew what he meant. This man that I share my life with struggles with his own relationship with his own higher power, but I knew at that moment that underneath it all, he believes. He had probably made the most profound statement to me that I had ever heard.I am not a religious person. I am not a Christian. I am spiritual - VERY spiritual. I choose to call my universal power God in most circles, so everone can relate to who I am speaking of. I don’t believe that we have to believe in what anyone else tells us to. But I do think we have to believe in SOMETHING if we want to heal.

During this conversation with Fran, I knew right away that God was doing what God does best - working through other people. If God was sitting across from me, he would’ve said, “DUH!” It WAS divine. This power is something I have never experienced before. I feel a connection to the whole Universe in a way I never imagined. This “power” does not belong to me. It is coming through me. I blocked the flow at first, because it was so powerful that it frightened me. I am now making a conscious effort to let it flow. My mind is now calm, and all of the ideas I have been rolling around in my head are becoming complete.I am asking for guidance through this stage of healing. I didn’t realize how much I had stopped feeling until this hit me. Part of the trauma of losing my daughter, I’m sure must have caused certain parts of me to shut down somewhat. It wasn’t enough for anyone who knows me to notice. It wasn’t even enough for me to notice myself. In fact, I didn’t realize this until just now as I am writing this (ahhhh, the power of writing…) I have been just as loving and affectionate as always. I am still attentive, and open. All this time we all thought I was doing so well after I lost Leora, who would’ve known that I was so different on the inside? I was Me, only a different Me - but not THAT different.

This new rush of emotions has been quite overwhelming. Ever since Leora has been gone, I have been committed to helping others, whether it be grief support, fundraising, or anything related to the issues close to my heart. I have spent the last few years helping others heal from grief, especially those who had lost someone to cancer, and those who have lost children. What I stopped short of, however, was helping the people who were actually afflicted with the disease, or the children who were dying. I could volunteer for Make-A-Wish, but could not meet the Wish Kids. I could spread the word about LMS, but I could not become personal with the people who have the disease. 

These things I “could not do” have turned out to be the things that are suddenly accelerating my healing. When I posted the page on MySpace, I was immediately befriended by people with this rare and cureless cancer, and their friends & families. I couldn’t help myself. I was compelled to love them back, and I can’t stop. 

So how do we know when we are truly healing? Maybe it is when we are willing to risk it all and love someone we know we may lose, just because it would make life so much more empty if we didn’t do it. And that, as Fran said, must be divine.

Welcome to My Blog!!!

February 10, 2007 on 10:02 am | In LMS | 2 Comments
     

 

Well, I finally did it.  

I am not quite sure why it took me so long. I have been suspiciously eyeballing the “Start a Blog” button on my administrative control panel for about two years now, but could never quite bring myself to hit the button.

As most of you know, the Shining Light Grief Support website has been up for about a half a year now, along with the monthly newsletter. The response has been steady (slow & steady wins the race, right?), and very positive.

But Ahhhh, I never imagined the power of MySpace! A few weeks ago, I woke up out of an apparent three and a half year sleep, and thought, “Hmmmm, I need to create the Leiomyosarcoma Awareness page that I have been rolling around in my head for the last few years.” I decided to create it on MySpace.

HOLY COW!!! You could’ve knocked me over with a feather…the response to this page is unbelieveable.

Quick education of what Leiomyosarcoma is: It is an extremely rare and aggressive cancer that constitutes about four in every million cancer cases. It usually affects people middle age and older, but can affect people younger as well. Leiomyosarcoma, also called LMS, is an unusual cancer that affects the soft tissues of the body in the trunk, limbs or head. Attaching itself to blood vessels, it spreads through the blood stream, affecting other areas such as the liver, lungs, and other soft tissue areas of the body. Surgery is the first plan of action for this cancer, due to the resistance it has to chemotherapy and radiation. Frequently, however, many surgeries are needed due to the aggressive nature of the disease. Tumors tend to grow large and fast.  There is no cure at the present time for LMS, and remission is difficult to attain. CT scans are needed for the patient’s lifetime, because this cancer can resurface any time in any part of the body. 

Because LMS is so rare, most doctors have never seen it, and most of the public has never even heard of it. There are a handful of specialists in just a few teaching hospitals around the country. As a result, little funding is given to researching this cancer to try and find a cure, and many oncologists do not treat it properly.

That being said, because of the rarity of this disease, the handful of people who actually have it are very few and far between. What I have come to realize is that the amount of people touched by or affected by this disease is HUGE. There may be only HUNDREDS with LMS, but there are THOUSANDS suffering the devastating effects. The realization has had the following effect on me- yes, an AH-HA moment-
As I spent the last few years, since my daughter died from this disease, contemplating how I can best make I difference, I have been heavily involved in helping others heal from grief. It has helped me to heal, and has helped others as well. So I have moved on from one phase of healing to another (over-analyzing every step of the way, I’m sure), but was not ready for THE BIG STEP.   

Actively participating in finding a cure for this disease was overwhelming to me for a lot of reasons.   

First of all, it is so rare, how will I ever find enough people who even care about this little GIGANTIC disease? After all, no senator’s wife, or movie star’s father ever had it (that I know of, anyway), so who is going to listen to me?    

 

Secondly - and I struggled with a lot of guilt over this one - I thought that if they found a cure within the fist couple of years after Leora died, I would go crazy, because we could’ve gone to extremes and performed heriocs to keep her alive longer. But her quality of life would’ve been horrible. Her case was too aggressive and too extreme.

 

I realize now, of course, that these are very normal things to have go through my head, and I just needed time to work them out. I have let things just sort of flow in the natural progression of things, and miracles continue to be placed at my feet.

 

By posting the awareness page, I have realized by the overwhelming response, that I CAN make a big difference. There aren’t just hundreds of peole who live with LMS. There are thousands! They consist of those stricken with the disease, those in remission, those who did not survive, those who loved and lost them, and those who live with the uncertainty of life every day that someone they love may not be here tomorrow because of LMS. We are everywhere, and we are HUGE!!!

 

Good God, how did I not see???

 

By creating that page, I have, for the first time since I lost my daughter, befriended people who are fighting this disease, whether in remission or currently active and the people who dearly love them. It was too hard for me to get close, and possibly lose again. But how can I not love? It just wasn’t me. I don’t know how I ever lived without knowing Robin - who told me I MUST share my stories - while she fiercely battles this disease, and Dyann and her NINE kids that share their intimacy as a family and a tighter family bond than I think I have ever seen. I want to find a cure for them- for the ones who still are fighting and have a chance.

 

I can see my loss in the grand scheme of things now. I can see Leora was lost so that others may live. Without her loss, who would listen to me? I lost a child. Everyone listens to me. That is the gift that we have all been given. My daughter, like all of us, was put here to fulfill a much higher purpose than anyone knew. She finished her work here. She showed me where she left off and I begin. I have much more work to do now.

 

Now I am unafraid, and the battle is escalating to new heights…

 

Stay with me, my friends. We have a long way to go, but together we can make it!

 

Much, much love, Jeri

 

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