Always Fighting for the Love of My Life

Edward J. Demyan; Pancreatic Cancer Victim; Supported and written by MaryKaye Mackulin, who loved him.
RIP my sweet man ... 1963 - 2011

Tuesday, September 6, 2011

20 Days Later, who is reading this

I am a bit surprised to see the number of "hits" this blog remains to get on a daily basis; I mean, Ed's fight for life has ended, but his battle against that f'ing monster PC continues, is that maybe why you are all still reading?!  I really cannot guess.

I'd love for people reading to post a comment, just to get an idea of what is going on in your heads.  I am really perplexed by this.

I cannot believe it's been 20 days since Edward James took that last, labored breath.  Sometimes I feel like it's been forever, sometimes it seems like a mere moment ago.  All I know is that my heart is broken into a million pieces;  I will not post what other people are feeling or thinking, because I am not them.  This doesn't mean that his family and friends are not dealing with his loss just as deeply, and, I'm sure, it is just as hard for them, but this blog has always been about Ed and myself and our journey.  I kept most other family/friends out of it unless it was something specific, not just an assumption of feelings or thoughts.  I will not write for my child (much) or his children, I never have.  I think somehow that has come across as that they are not important or were not involved in the journey, if you have thought that - you are wrong;  I cannot speak for them, I could speak, however, for Ed and myself.  So, there you have it.  This was "our" story as a couple - not about anyone else;  I could write a blog, I suppose, from other peoples perspective, but it would be a lie, 'cause I don't know their perspective.  So the continued comments and implications that have been put out their about certain people being treated unfairly or as unimportant, are incorrect and those are assumptions, and well, we all know what that means.  Again, I reiterate, Ed chose who he wanted involved in what - HIS wishes, no one else.  And again, I reiterate, if you didn't communicate with him or contact him in the last 17 months, then where do you get off on making any comment at all ....    Funny how people think they can speak for him now that he is not here to defend himself and he cannot disagree with what's being put out there.

I knew him better than anyone, some people don't seem to like that much, but it's the truth.  We communicated openly and honestly about everything, from day one;  there were no awkward silences when questions were asked, we just answered.  Sometimes the answers wouldn't come immediately, but they always would in time.  Ed put me on break once for about 3 weeks in the summer of 2009, during that time he sought counseling immediately to make a decision about our relationship.  Needless to say my heart was completely broken, but he didn't wait on getting help - not a lot of men would do that.  He called my every night while we were on that "break", but it didn't sooth me (this was prior to his diagnosis, obviously) cause I always felt like he was throwing away time that we would never get back.  I still feel that way today.  But in those three weeks (which, mind you, two of them we wouldn't have been together anyway, so really, he put me on a 7 day break which I still hated) he realized that he did want to spend the rest of his life with me and that 3 weeks of not seeing each other was more than he could bare as well.  I lost quite a bit of weight at that time, I was sick to my stomach that entire separation period.  But like I said, he didn't take it lightly, he sought professional help immediately and he found his way back.  That is an extra special man my friends!  If everyone was willing to admit when they needed a little help & seek it & take it seriously (that is key), how much better off would this world be.  I myself will probably be seeking grief counseling soon, but right now I still feel like there are a million things to get finished, and then again, maybe I won't - time will tell.  I have no problems spilling my thoughts to friends & strangers alike - um, hello, this blog for instance...  I am honest to a fault, my heart and mind are an open book, and communication is something I value very much.  I had a 13 year relationship with someone who just couldn't communicate and talk to me (oh, and lied to me, a lot)...  I learned from that experience at a very tender age that I could never and would never spend time with someone like that again - be it "friend" or more.  You cannot waste your time and energy on people who are not willing to communicate with you on an open and honest level (my own kid has this problem right now).  And, it doesn't have to be verbal, writing things and feelings down is sometimes easier, but it is just as important, because it is still open and honest communication.  So, if you love someone, make sure you let them know - don't assume they know, they don't.  And, if you are not being told you are loved by someone you love, keep working on the communication - I guarantee you, it is worth it.  

Believe me, when you communicate, the reward is more outstanding than you could ever imagine, and I was able to experience that for close to 6 glorious years. 

So, again, I don't know who is still reading this or why - but there you have my thoughts on day 20 without the man of dreams sharing this planet with me.

Peace - MK


  1. I guess I check this post to learn more about my brother and his relationship with you MK.
    I love you both very much.

  2. Awe, thanks Frannie - me & my fam love you right back. I appreciate the post ;)

  3. I still have it in my favorites. I have checked it almost everyday since I saw you at the taste of cleveland. I love to read about how happy the two of you were. If times are hard I read your stories and I remember how much pain he was in and it makes me keep on fighting. I love both of you very much and will always check to see how you are doing.


  4. MK- Why do I read it? Because I have a deep understanding for people who are grieving. For people who have lost the most important person in their lives. I love your honesty. It's hard to often be honest with oneself.

    I originally started reading this blog because I had come upon Ed's battle with cancer. I thought what could I do to help? Pray. I prayed each and every day for Ed and you too. I loved how both of you took each day at a time, and tried to make it the best day possible.

    I think that the biggest thing I received from reading this blog is unconditional love. Both you and Ed had unconditional love for each other. That can sometimes be rare.

    Regarding grief son died 6 years ago at the age of 25 years old. I have never sought grief counseling. I find that I have no problem getting my feelings out. I do that on Facebook often. If someone does not like it, oh well. If ever my grief prevents me from doing the things I need to do in life and my daily responsibilities, then I would seek counseling.

    I continue to keep you and Ed's family and friends in my prayers.

  5. MaryKaye, Not only do I read this, of cource I know you, but some of my work friend also do. I asked them why they still read the column. They are fasionated with your love story and are truly moved on how it ended. At this point they fell like they know you somewhat and want to see how you are coping with this. I actually do know you and my heart breaks for you . I read this today and think of when you guys met and how perfect you were together. You know I saw that from the start. "Lifë is no dress rehersal" LOL! For the record I understand just what you mean about communication and love. I am experiencing this for the first time myself. Take care as I know you will. You have always been a fighter. Kim McGuire

  6. MK,

    I began reading your blog after seeing a news article on Ed's battle many months back. I was so touched by your sharing these important last months/weeks/days with us that I checked back everyday to see how things were going. I said many prayers for you and Ed and your family, that you would find peace and strength in the end knowing that you had done all you could and that you and Ed had lived a good life together, albeit short. I continue to check back and read for this reason- just because Ed is gone, his stories and his memories are not- they live on within you and his children. I admired the way that you decided not to spend Ed's last time on Earth in mourning- there is plenty of time for that now- But you also keep him alive through the stories you share here in your blog- Ed's legacy lives on. Keep on writing, Ed would be proud.

  7. MK

    I read your blog because I value the way you write. You put into words, so articulately and openly, how you (feel) felt about Ed and how he (feels) felt about you. Someday, I wish to “LOVE” someone as much as you loved Ed and, to be loved like that in return. Most importantly to be able to share that “LOVE” like you both did. Somehow, you managed to make others feel it.

    When Ed was alive it was fun to read about your adventures and heartbreaking to read about his setbacks. But, it was difficult to grasp that it wouldn’t last much longer. It felt like you two could keep going forever. You grabbed my attention, made me laugh, cry and angry all in a post.

    I read now because I want to know where you are and how you are feeling. You put so much time and effort into someone else that I fear that you didn’t have time to care for yourself. Not that giving your heart is wrong but sometimes you need some to take some back. I think grief counseling is a good idea.

    I admire your strength, courage and determination when it comes to reminding people how important it is to NOT take for granted the people in your life especially those that you love.

    You are one extraordinary woman and you have a great gift for making others feel in your words alone. I appreciate your sharing. I hope that the sharing helps you heal.



  8. We read to check in and see how you're doing and to offer you always. Xoxo phil and jen

  9. I read your blog everytime you posted,just to see Ed's progress and how you guys were doing. It was great to watch all the things you guys were doing and so much you shared.We didn't hang out much in school,but after 30 yrs of being out we saw one another at functions for Ed.I got to know briefly what a incredible person he was and the love you both shared.Going to see the both of you in his final days,I thought that there would be more time to hang out and get together,but that was cut short.I was out of town when he passed and that really bothers me.Life is too short so dont waste it by not opening up to old friends and family.Ed you will definitely be missed and MK your strength is incredible keep it up, will continue to read to see how you and paige are doing.. Jim

  10. I check back and read because you do it so well. I think you let us feel what you were both going through emotionally. We all have emotional healing that needs to be done - and it's better to learn through others. I guess I also want to see how YOU are doing and that you will be okay one day. You had a great love, and that will always be with you. You're still an important person!

  11. MK...I ck back too. Craig does, as well. I guess we are checking in on you. Figured you would be still posting how you are feeling. It's all too fresh, Ed has just been gone a short time. Hard to believe the day of his passing came. We all had hoped for a miracle. Our hearts ache with and for you over his loss. Hard to see a friend go from healthy to horribly sick. Ed was such a kind spirit, I can't see how anyone could NOT love him. I looked back at all the years I have known him. From Art Class with Mr. Carroll in high school to now. I have NEVER seen Ed in a bad mood or pissed off...when he was around his friends he gave us the best of himself. He always made us feel welcome and cared about. A special quality that not all hold. We can't imagine the pain you are going thru. I know, personally for myself, sometimes, writing things down can help give clarity and help relieve the pain a little. Although Ed is not with us are. You both mean the world to us and we all love you both. So, in saying all this...guess this is just another avenue to check on make sure you are ok. You shared such a personal journey. Just because Ed isn't here...your journey continues. It's a good place for you to vent and still share... We are all missing Ed but can't imagine how empty your heart must be right now. Just know, we love and care for you very much! May you find peace in your heart MK! Praying that we all find peace in the passing of our dear friend. You are on our minds everyday...we continue to send prayers in your direction. We love you! Nanci & Craig

  12. I started reading about a year ago. I must say, this blog made me realize I was feeling sorry for myself over really minor issues that were correctable and that I was taking life for granted. I really became disgusted with myself after reading about the zest for living you and Ed displayed as it seems I had my finger on "fast forward button" of life. Procrastination, envy, indecision and sloth have no place in my life any more.

    I owe you a lot, thanks

  13. Well, I was having a crappy, feeling bitter, kinda day - so Thank YOU Tom... Guess you helped me right back.

    Tom, hope you do the things you love & get out there and live your life... Right now I am sad & angry, but I also know I will get through it.

    So Tom, thanks for helping me on one of my bad days. Peace, MK

  14. MK,

    I believe I met you just once and I wasn't really friends with Ed. I did, however, have all three of Ed's daughters in class. As I was pulling into the school parking lot the other morning I looked over at the car that had pulled in before me. I was so use to seeing him in the morning as he dropped one of the girls off, that for a brief moment I thought . . . but then realized what I was thinking wasn't possible. Ed was a parent that was involved with the school, and I checked the blog often to see how he was doing. I checked today because I was thinking of him and the girls. My thoughts and prayers continue to go out to you and his daughters.

  15. MK - I love the photos you post. Love is written all over your face and Ed's face. What you have/had with Ed is so special. Something that many people look for their entire lives and never find it. Unconditional love. I continue to keep you in my prayers for peace.

  16. Since you asked...I just last night happened upon your blog by accident through an unrelated search. I read it backwards, knowing how sadly those ups and downs must have ended - someone close to me died of melanoma almost two years ago. There were many parallels - both between the men (makes the phrase "only the good die young" all too real) and their mostly hopeless and devastating diseases (all terminal cancers, really). I was struck by your honesty, openness and, of course, love. It was everyone's story, in some way, and you told it simply, eloquently. And you continue to tell it. Thank you.


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