When Death Calls

Friday, December 2, 2011
The moment I decided to take my pain and grief into the public eye, I made a promise to myself and to the unknown people who might read it. The promise was this:

No matter what my thoughts are, what words it takes to express myself, wherever the journey through this darkness may go, I won't sugarcoat how I feel or think. I accept nothing less than total honesty, even if it's raw, painful, uncomfortable.

Some of my thoughts, like those in this post, may cause someone to fear I'll do something there is no returning from, death. I hope by explaining this now, it will allow you to read my words without fear, and most importantly, read to the end. I know I'm not the only one who is weighted down with grief to think these thoughts. I know other people feel like I do. I want other people to know it's ok to feel and think dark thoughts.

I want to stress that while there's nothing wrong in thinking and feeling these things, it is a thin line to walk. If you are grieving, or have a loved one who is grieving, in some cases professional help may be needed. I know myself, have walked a very dark and lonely road for the majority of my life. Dark thoughts are a comfortable companion for me. I have put together a "Grief Resources" page, found at the top of the blog, for anyone who needs it. I will continue adding to it as I come across things I think will help others, as well as those things that have helped me. I'd be happy to add links or anything else you feel will help other who are grieving the loss of a loved one.

J put this on FB one day: "p w/out c = empty shell, j w/out k = incomplete alphabet." My alphabet is incomplete now. Feeling incomplete doesn't begin to describe how I feel. It's more accurate to say devastated, had my heart ripped from my chest, plunged into darkness. Those are the ones that come to mind right this second.

Since the day he died, I've wanted to die. A few times over the last month I've plotted ways I could die. I feel like death has invaded every fiber of my being. There is no life without him. I just exist, I'm not living. Before anyone begins to believe I'm suicidal, let me assure you I'm not.

J and I were very matter-of-fact about death and dying. We weren't afraid of it. We joked about it, which caused some people over the course of our lives, apart and together, to call us morbid. For most of J's life, death was his companion.

He had a disease called Duchenne Muscular Dystrophy. It's a form of MD that affects mostly boys and is passed to them by their mothers. Females are typically carriers who don't develop the disease themselves. Boys who have DMD usually don't live past the age of 20. It affects the muscles and the ability to make them contract. To learn more, please click on the "DMD Resources" tab found at the top of the blog.

J's death was very sudden and it wasn't caused by DMD. Something went horribly wrong minutes after the doctor at the hospital drained a small amount of fluid from his right lung. His blood pressure skyrocketed, his heart stopped, and they were unable to get it started again.

He outlived all expectations. It's rare for those with DMD to live into their 30s, much less make it to 40 years old. He died two weeks before his 36th birthday, which would have been November 12th. We'll never know how old he would have been before DMD took its toll.

A few days ago, after a night of dark thoughts and a lot of tears, once again wishing for death, something occurred to me. He would be so pissed at me if I died. He would not be happy to see me, to be with me. J fought every day since he was 8 years old to live, to keep going, to embrace life despite what DMD did to his body and the pain it caused him.

Even thinking the thoughts running through my head all of a sudden felt like a betrayal of all J stood for, all his life stood for. Many times we talked about his death, talking when not if it would happen. At one time or another we both expressed how we felt there would be no life without the other. He told me I gave him something to live for. During one conversation a few months ago he asked me to promise him something. He said to me: "promise me something, that you won't quit on life." I said to him, "I promise." He said to me, "I'll love you even after I'm gone, forever."

Any promise I made to him, I followed through. I never broke a promise to anyone, but especially not to him. So, to honor his life, his memory, all that we shared together, I will continue to breathe, to have a heartbeat. It's still too soon to say I'm going to live. Living, to me, is the act of enjoying life, being happy, looking forward to each new day and the sights and sounds that come with it.

Right now, in this moment, I continue to exist. Grief and death my companions as I go through the motions every day. My heart broken, torn to shreads and bleeding over losing my best friend, my life mate. The landscape of my life has changed forever. It'll never be the same without him here by me. One day I'll begin to live again. I will find the strength he gave me to get through my rough days. I can still live for him, live because of him, just not right now with grief, pain and tears so near the surface.


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