Wednesday, August 22, 2012

Don't Stop Believing And The Voice Of Experience

Words, and songs, have different meanings depending on who is speaking and singing. While I love Journey's Don't Stop Believin', it, somehow, resonates as true when it comes from a stage 4 melanoma survivor who has been NED (no evidence of disease) three years. When Mark says "don't stop believing" I don't stop. When he encourages someone who is depressed, scared beyond belief, and facing the almost unfaceable, we know he's the voice of experience and we don't stop believing. There are many more who give those words of hope and encouragement because they are living proof that living with stage 4 melanoma and being NED for a long season happens and it's happening more and more. As a matter of fact, another stage 4 melanoma survivor who is currently enjoying her own season of NED is up in arms because melanoma research sites aren't updating their pages to reflect this. Voices of experience are speaking up and speaking out and they will be heard.

There are other voices of experience. Voices who never stopped believing even when their warriors died. They truly believe they'll be reunited one day. They truly know their loved one battles no longer and is truly cured and whole. And, man oh man, do they truly miss their loved one. And they have voices of experience that speak words of how to get through this time with the warrior so you'll be better able to cope when the time comes to continue without him or her.

I want to share a post from a woman whose husband died from melanoma three years ago. I'm taking names out but otherwise this is exactly what she shared. And, it has resonated with men as well as with women. This wisdom will help anybody who is in this thin place, or will be one day, no matter what the disease or condition:

I am writing this as a widow. I have made many friends on this journey of melanoma and loss. I see many familiar names and want you to know that I continue to keep you in my prayers. I want to share some ideas, for those still in the battle and their family:

take videos, keep the camera rolling, record every day conversations, buy recordable cards and have your loved one s
ay "I love you".


take pictures, holding hands, hugs, kisses, even tears. A special photograph I have, is me lying next to _____ in the hospital bed.

trace your loved ones hand, you could make a family hand book, or quilt
I bought one of the baby keepsake mold kit that you can place a baby's foot print or hand print in. I had my husband place his hand in it. Three years later, I can still put my hand in his.

Clip some hair. You could put it in a locket. I bought lockets for my girls and had my husband write "I love you" on the inside of the locket.

Build-A-Bears with a voice module. Your loved one can record a message.

If your loved one has several blankets, rotate the ones they use, afterwards your family will have a blanket that provided comfort to their loved one

Record the love you have for them and let them do the same thing. It will mean so much. You will not have to say..I wish they knew how much I loved them, how important they are, special memories that will last forever.

Hearing is the last sense that leaves. I am sharing some of my last words of love for _____...

I love you, _____
You are a wonderful husband, you never disappointed me, you have given me enough love to last a lifetime
I sang his favorite song
I told him that I would be okay, that the angels were waiting to take him home. I told him to go to God.
(I know that he heard me).... he had one final tear and then his last breath was so peaceful. He was a kind and gentle soul and he left me with a passing so sweet. I have his last tear in a special box.

Little things can bring comfort
Personal items they used
deodorant, soap, favorite t-shirts
Simple, yet profound, advice from someone who has been there and will never leave there. 
We would do well to listen to our voices of experience. In life. In death.
Don't stop believing.
Be grateful for those around you that provide encouragement from the depths of their experience and pain.
We will surely walk in their footsteps one day.
Charis