Connecting through the world wide web

This morning, I signed on to facebook and saw a post I knew was coming. A lovely man from down south, Sarah’s honey, Bob, passed away during the night. Another man is on hospice as his wife and 2 20-something year old kids sit helplessly by. The comments on their posts are many, from people all over the place, and many that they never even met. I have said this before, myeloma seems to pick the nicest, kindest, smartest, funniest, coolest people in the world. I’ve met my share, both in person and via the internet, and I truly believe that. Some years back, a woman from Indianapolis, named Nancy, some may know her as La Cootina, died from MM. In one of her last posts, she mentioned how close she had come to feel to the people she “met” on the internet. She spoke of being surprised
at how much support it had actually provided her. I can say that I definitely feel that way too. Going to my MM support group and interacting with the folks I have met online, is the only time I am around people who know this path I walk with Tim. Being among the younger set of MM couples, it’s not like all our peers are dealing with cancer or other life-threatening illnesses. You feel a bond with these MM people automatically, because you know they know your heart, and the angst in your mind because you are facing the same thing. When these people, or their spouses, get really ill, I think about them daily. I put them on the prayer list at my church so their names are read out loud during our service. I pray HARD for them and their families. There is an empathy there that is not imagined. The day that the lovely Paula Kilgallon died, I sobbed like a baby at my computer, with tears streaming down my face. These comments you read on these sad posts show the enormous out-pouring of love and empathy that people really feel for their “brothers and sisters” on this MM rollercoaster with them. Despite our differences, we all have so much in common. 2 years ago, I had a family member say to me, “why do you do this to yourself. Why don’t you unplug” and avoid all this? This is brutal watching others die of this.” Here’s my answer, because we help each other. When Paula’s MM crossed into her spinal fluid, she e-mailed me, having seen me comment about this on someone’s blog at some point, long before. I went to our support group meeting that day and got the name of the drugs we use here in the states for that condition and gave her the information when I got home. Unfortunately, her doctor used a different drug, and the results were not good. I knew that this rare complication was very often the result of very aggressive disease and seen at the end of someone’s MM journey but I didn’t say that, because I’d also met a man who beat this manifestation and got more time with his son. But, Paula was worried more about her Bernard than herself. She e-mailed me back and said the relief it gave Bernard to hear there was a treatment was priceless. The UK has a socialized medical system and cannot always get the same meds we have here and I told Paula and “B”, that if they wanted to come here, I would have my spare room made up by the time their plane landed, and I meant every word. There were other times that information I had helped someone and many times that someone else’s words helped me. This is why we do it. Because we are a sisterhood/brotherhood. Because we are brave and we stick it out and don’t run when the going gets tough. Because we know how much we need people to hang in there and be there for us so we damn well hang in there for others in their time of need. Because if there is ANYTHING we can say or do to ease someone’s gut-wrenching pain and grief just a smidgen, we’re going to say/do it. Because basically, WE ARE SURVIVORS. All of us, even those that we have lost to this %$#&#@ disease. We are a bunch of kind, smart, funny, empathetic people who were thrown together because of MM and we’re on this rollercoaster together until a cure is found and beyond. Last night, Tim was flipping through the channels and turned on the Stand up to Cancer show. I came into the kitchen and cried for a few minutes so he couldn’t see me. There was a scene that just got to me. This woman was a complete stranger to me but I could still relate to what she was going through. It’s too easy to plug myself and my husband and child right into that same scenario because our reality is not that different. Anyone who reads my blog knows that Tim and I have been very sorely disappointed by people who backed out of our lives because they just didn’t want to deal with what happened to us. If it were not for my friends at church, the kindness of neighbors and sometimes even strangers, and the support that I’ve gotten from others dealing with MM that I’ve met on this internet, I think I’d go bonkers. I read as people, as well as myself, try so hard to send strength and peace and love to others going through unimaginable pain, and it’s real. It’s as heartfelt and real as you get. So, for me, this is why I stay in there, connected with all these people. Because I have their back, as much as I can have it, and I know they have mine in return. And you just don’t throw that kind of love and support away when you are dealing with something as hard as we’re all dealing with. It props you up on those days when you don’t think your legs can hold you and your heart is breaking. And, these lovely people who have gone from us, they are NEVER forgotten. Never. You hold them in your heart forever.