Over the last couple of days I have been 'bashed' by a blog reader, via e-mail, for speaking 'lightly' about Multiple Myeloma. Maybe it was the 'Hillbilly/ Moonshine / Revlimid Parody' or something else. I wanted to share this experience with you, not for your support, but just to let you see how some people approach life when MM is foisted upon them. Somehow, I thought that this day would come.
She wrote this to me: 'Don't you understand what a dreadful, destructive disease myeloma is?' 'Don't you realise that people are dying from this?' 'This is no topic for... (humor)..' And so on.
My response included the following thoughts:
Multiple Myeloma, as viewed in a vacuum, isn't funny. It is a destructive cancer. But there are many ways to deal with this diagnosis. I've made my choice. It may not be right for you and that's okay.
Yes, I know all-to-well the darkness of MM. I know first-hand the extreme physical and emotional pain it delivers. I know how devastatingly expensive fighting this disease can be.I am no stranger to the strain and stress MM puts upon my family, friends and all whom love me. I live daily with the medicine and their difficult side effects.I know the depression of not being able to work or to lift up my kids.
I have experienced the fear, confusion and uncertainty of where this is all heading. I have seen it in my mirror, on the loving face of my wife and on the faces of the hundreds of MM patients I've met in person.
I know what it's like to be a father of two young children, praying that I have an opportunity to see them grow up. Knowing them and being their dad has been one of the most powerful things in my life. Every day with them is a gift because I choose to see it that way. Would the thought of this blessing have been with me every day without being stricken with MM? Or would my busy life relegated such daily thoughts to the background?
I know the dreadful fact that I might leave my loving wife too early. I am a much better person for having known her, learned from her, loved her, and received her love and support. I want to grow old and cantankerous with her, dog-gone-it!
In no way do I hold myself to the standard of being a Myeloma 'expert', as you suggest. I am only an imperfect participant in my own personal journey. I struggle to understand all of the facets of the malady and the efforts of my team to vanquish it.
I reluctantly started this blog to communicate with my family and friends about MM and our family's battle against it. Nothing more. There are only 15 followers and a hundred or so visits to the page every day. One must not visit my site to feel that that they're doing what they need to do to successfully exhaust 'everything important about MM'. In the world of Myeloma, MyelomaYoureloma is not on the list as a 'must do.' And I am perfectly fine with this fact. I have benefited from the encouragement and loving support of those whom have contacted me through this blog. Many of them are MM patients or caregivers and they buoy my spirits in important ways they may never know.
Dear lady, I believe that you have the right to think differently than I do. And that you have the right to contact me with your thoughts. I appreciate the fact that you've taken the time to do so. I believe that you are in INTENSE pain because your father is battling this evil disease and you, sadly, can't cure it. I can't either. My wife can't snap her fingers and make this beast go away. But I do believe that it will eventually be cured - and my doctors do, too.
One of the most prominent physicians in the MM world took my hand in his and said 'If I don't screw this up, Sean, you will be given many years of good life.' To which I replied, 'Well, don't screw it up! There might be a bonus in this for you!' He laughed. The other doctor in the room also laughed. Ooops, there goes my attempt at humor again. I'm built that way.
You don't know me, but I refuse to surrender to Myeloma. I refuse to let it destroy my relationships and to steal the beauty, in the midst of the darkness, of the world around me. I refuse to succumb to the idea that I should be dying every day. I am much more interested in LIVING every day. I refuse to let MM change my light-hearted look at the world. I refuse to deny that I believe that God loves me and that I can handle what I've been dealt. I will continue, in my own way, to reach out to my MM warrior friends.
We are all connected through something I call the Burgundy Thread. Burgundy is the official color of Myeloma, or colour for my UK friends!, and in my imagination I see an invisible, unbreakable thread that connects us all together, whether or not we meet face to face. You are not alone. There are many people out there willing to offer you support, including me.
Your correspondence has moved me. Your choice, and your choice alone, is to keep visiting my sight and/or to keep in touch. I hope that you do. Lambaste me if you must - I can take it! I wish you the very best and will think about you and your father often as you move forward.
Sean
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17 comments:
I feel so sad for the woman who wrote to you. I would guess that she is so deeply in mourning at her father's diagnosis that the she feels like the whole world should be mourning too.
I, however, appreciate the humor you inject into your posts. I did not want to laugh for the first few weeks after my husband's diagnosis (in June of this year), but after a little while, I NEEDED to laugh. MM is too hard to deal with, for the patient and the family, if we can not restore ourselves in other ways. It makes my heart happy when I can make my husband laugh.
It also makes my heart happy to report that my huband's M-Spike went from 3.4 to 0.4 (in about 4 weeks), and now to 0.0 (in about 7 weeks). The light chains show the Myeloma is still there, of course, but the SPEP is no longer sensitive enough to detect it. We have a meeting at Stanford in a few weeks about stem cell collection, etc. Fingers crossed.
I'm THRILLED to hear your good news, Ladyaero! I'll cross everything, my eyes, my legs, etc. for you and your husband!
I, too, just want to reach out to her and her dad and give them a big hug during this overwhelming time. Everyone tackles the challenge differently.
MM stinks, but there are some ways to make it a bit easier - hope this is true for them.
Keep fighting! Sean
Well Sean, you already know that we're just as "guilty" as you are where humour is concerned.... banana anyone? ;-)
Lorna! You and Micky epitomize hitting MM head-on with grace, love and massive doses of humor...er, humour! Thank you many times over. Please don't offer me a banana. I'd only slip on the peel.... Hugs! Sean
Excellent post, Sean.... It's much easier to roll with the punches and have a positive attitude!
That was an excellent post. I could relate to everything that you said! (And I hope this lady doesn't find out about my blog, or she might have a heart attack!)
Good posting Sean, I can relate to it all.
Myeloma becomes a series of treatment/remission/relapse all being a different experience and with each one the ability to put us in a different frame of mind.
Keep up the postings.
God bless you.
Sid
Amen to all of your wit and wisdom. I struggle and strive to find the joy and humor in my life and appreciate reading your blog and finding good reasons to smile from your posts. Keep up the good writing and the mm battle. Thank you, Kris
WTF was that! You'll only be getting 99 visitors a day from now on - I'm not coming back for more of this emotional stuff!
I hope your emailer doesn't come across my comment on someone's blog recently (not even a myeloma blog) where the blogger had said that her father said (paraphrasing) that if it wasn't fatal you could find humour in it, to which I responded sometimes you could even find humour in fatal stuff!
As I've said before you do whatever it takes to get you out of bed in a morning. I mean some people can't even be happy and find joy in life when they are healthy!
AND you get 100 visitors a day - I only get 3 and that depends heavily on whether Lorna can be arsed! ;D
xx
I think laughing is a release and humor is a defense sometimes to keep us from going where we just don't want to go. Tim almost died at 43 and our daughter was only 8 years old. Then, when it looked like he was going to pull out of the strep sepsis, they told us he had MM.Then we found out that it was uncurable(which I don't believe now). Oh, and we had just bought a 2 family house and took out a BIG mortgage 10 days before I rushed him to the ER. Yippee. When the ashes settled, he said to me, "For whatever time I have left, I am not going to spend it crying and moping" and he has stuck to that idea like glue. Is MM funny? Heck no. My heart broke in a million pieces the day I had to tell my husband and our daughter that he has cancer. I'm mad, sad, disappointed, and scared.
BUT,I put my game face on everyday to help my husband keep his chin up
and the truth is, there are folks who have things a whole lot worse than us. Unfortunately, there is sadness everywhere you look but if anyone thinks that being depressed will make things better,
it sure won't. So, we joke and try to see the lighter side of things.
Because really, the alternative doesn't look like much fun and I can't see where it helps the person who is sick at all. From day one, it has bothered Tim how his illness affects all of us and
showing him the depth of that would just upset him more. We all have days when the smiles don't come easy or at all. One has to try really hard to find things to be grateful for but they are there.
Some days, it felt like the only thing I had to be thankful for was that the elastic wasn't shot in my underbritches so I just started from there with my grateful list.
Tim and I would rather make happy memories for Olivia than sad, depressed ones so that's what we do. Laughter is the best medicine
and Tim's doctor doles it out with the best of 'em and I sure appreciate EVERY SINGLE laugh I get from reading the blogs of all you goofballs!!! MM'ers are a hysterical group, thank God!
I would just like to add that laughter gives a big boost to the immune system (=scientifically proven)...for this and for many other reasons (my wacky sense of humor), I plan to keep laughing for a very long time...
Uhm, does the name Norman Cousins ring a bell? Case closed.
:-)
Margaret
Smoldering in Florence, Italy
Hi, all! Thanks so much for your input. Margaret, Sid, Denise, Karen, Paula, Dom and Nan, Lorna and Micky - I've been reading your blogs for a long time - good to hear from you.
You are right - laughter and well-placed humor are, indeed, good medicine. And it doesn't cost nearly as much as Revlimid!
Be well! Sean
Hey Sean,
I have just discovered your blog and I for one like it. When I was diagnosed with the mighty MM I immediately told family and friends that if you are going to cry, do it somewhere else. I don't want to see it or hear it. It has worked well for me but every once in a while, the tears do come to surface.
My mantra is "I might have cancer, but cancer does NOT have me". I belong to a support group and am one of the younger people there. We did a walk to raise funds for a research chair for a cure for MM and I decided to make t shirts and the profits would go to the chair.
Cancer Sucks ... that says it all for me and looks pretty good on a t shirt. There were many a folk though, that frowned on my irreverance of a serious illness.
one of my pet peeves right now is I was told twice in two days that I had a serious illness and that there was no cure ... this was almost a year after my stem cell transplant. Two different women, coming from two different areas of my life. I wanted to say "Really, I did not know that" If we can not laugh at ourselves, who can we laugh at.
Thank you Sean, for being you ... and then being a person with MM
La vida ya ha sido un regalo, no todos pueden contar lo que tú has hecho con ella. Te admiro.
Si viéramos las cosas con más sentido del humor, el mundo sería definitivamente diferente, muchísimo mejor. Seguiré tu blog y volveré a escribir, esta vez en inglés (mi esposo es guía de turismo y me ayudará en eso, lo prometo)
Un saludo desde La Habana, Cuba.
Adela.
My old friend Sean. I love your sense of humor. I've always loved your sense of humor. I don't know the struggles of MM, but I have my own fair share of challenges with my body and learning to laugh in the face of these challenges is a great gift. Keep the giggles coming, dear friend.
Translation of Adela from Havana's comments courtesy of my terrific nephew Timothy: "Life has already been a gift; not everyone can tell [a story] like what you have done it. I admire you. If we saw things with more of a sense of humor, the world would definitely be different, so much better. I'll follow your blog and I'll write again, this time in English. (My husband is a tour guide and he'll help me out with that, I promise.) Greetings from Havana, Cuba. Adela."
Muchas Gracias, Adela! Thank you! Love to you and your husband in Cuba.
Roger: THANK YOU! What can I say other than watching you and your medical battles through these many years has been inspirational. I know that it hasn't been easy. You began fighting when they knew very little about your malady, but just look at how many lives you have touched in these last 15 (or is it more?) years. Bravo! Karen and I love and can't wait for you to meet the kids! Sean
Wow! You handled this sooooo much better than I would have. Hope they don't find my blog. lol.
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