7 Months ago. . .

8 months are coming up soon. A friend made me promise I would reach out in some way to the world around me and look for some way to process my grief. So here goes. Rob and I were together for 12 years. I fell in love the first day we met. This was the one, the one I had waited 35 years to find. This was right, this was it. Finally I found the person who completed me, who I helped to complete. Together we grew in the comfort and safety of our love of each other. We were safe.

Rob's family had a history of ALS, and other associated neuro-muscular diseases. I didn't know this was a risk at the beginning, but I can't say I would have done anything different if I did. I just hoped. It didn't work out so well. Two years ago he began to have weakness in his legs. Fell from time to time, but kept it from me for months so I wouldn't worry. We were happy. I was happy. Eventually he couldn't hide it from me anymore and told me the truth. This began a series of doctors appointments and no diagnosis. Still he continued to weaken. Breathing became different. Eventually he had to move to the couch and sleep sitting up. It seemed like some kind of sleep apnea. Eventually after seeing neurologists and geneticists I got him to go for a sleep study. The day of his initial consultation for the sleep study was the day I took him to the ER. We spent a month there. His blood gases showed a 95 % CO2 level. His diaphraghm had quit. So we got a trach a
nd a ventilator. We regained some strength after coming home and could go back upstairs to shower at least twice a week. This lasted a few months. Eventually we stayed downstairs, between his hospital bed in the living room and his office and bathroom.
I refused to see be frightened by the amount of weight he was losing, by how weak he was, by how easy it was for him to fall. I love him and I want him to be alright.

I teach Technical theatre at a local performing arts high school and we were in production for a show. Rob never made me feel guilty about spending time at school. He knew how much I love my kids, how important it is for them and me. How creating something beautiful is the most important thing we can do. So I came home late one night from work and found him dead.
Nothing in life can really prepare you for what death looks like on the face of the one you love. It's so empty. It's so void. I wish that was not my last memory of him. That helplessness of knowing he had died hours before, that I wasn't there. That even if I was there was nothing I could have done. Except hold him and hope that he could feel safe and not afraid. I can never get this back. I can never get him back.
I go for weeks with no response at all. Its like nothing. I can't say I feel numb. I just don't know how to feel. After 3 months I finally got used to the idea that he was not going to walk back in the door. That he wasn't just somewhere else and would be home soon. After 6 months I finally had the sense that I guess I'm probably settling into things. But now? It's so confusing.

People say to me that I may find someone else again some day. But I don't want to. I don't want it to be so easy to slough off and say there are other fish in the sea. There aren't. You don't wait 35 years and then find someone just as amazing. I don't know why people think it's like buying a new car. I am no where near the ability to appreciate what I had and allow myself to find a new love. That to me would be disrespectful of the importance of the bond we had.
But for today, I don't know what I need. I don't know what is going to happen next. I don't exactly know how I am supposed to go on. But ever day the sun comes up, I go to work, I try to keep up with things, and I try not to let my grief affect others around me. Mostly because I don't want to hear them struggling to find words of comfort where no comfort can yet take hold. Words that only sound belittling to the magnitude of loss I feel. Words that can't begin to understand. I know they only want to help, that they care, but they don't know. There are no real words in our language that can express certain levels of pain, of loss, of utter devastation of the soul.
I have read the statistics, 2.5 million people die in this country every year. Each of those deaths impact many more. But I have to say that while I empathize with all of that, I really only care about me right now. I can't imagine how anyone could feel more devastated than me. Sounds selfish I know. But that's the way it is right now.
I feel for everyone here and know that their loss is to them as profound as mine is to me, and I would never take away from that. I know this is the price of love, but it's not always easy to remember the rewards when it's time to pay the check.

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Replies to This Discussion

Permalink Reply by Curtis Magnuson on November 18, 2012 at 8:47am

Jerry sorry for loss. It has been 6 months for me of the loss of my love of 20 years. No one can say they know how you feel for everything is so individulized. I only know how I feel. I also had people ask me if I would find someone else. I am with you can not find someone whom you shared that bond. I concluded since my great-grandmother lived 40 years after the death of her husband. I could do the same. You have to give some time for you, I am told that grieving may take 2 years. I will be attending a grief recovery group. And went to a seminar of how to get through the Holidays after a loss of a loved one. I had left to go bowling and left Darrell, checked on him seemed fine. But I woke up early, turned next to him and he felt cold. I tried to find a pulse could not find one, I thought I had lost him. So I had an Oxymeter with pulse. A low pulse, so I started to use the air bulb to help him breath and then called 911 to get him to the hospital. After a month his children and I had to make the desision to take him off the ventelator. I know that it is important for you to find someone to help in this process called "greif". My heart goes out to you.

Permalink Reply by Karen J Austin on November 18, 2012 at 10:45am

Jerry I am so sorry for your loss, thank you for sharing. 14 months today I lost my wife. I find right now the hardest thing to deal with is other poeple, some think that after 6 months or a year goes by that you should be ok. SO NOT TRUE! A freind of mine went on line to find tips on helping a survivor, the first tip said Listen, say little. I also am attending a grief group, it is helpful to talk with others the are going through the same thing. Take care, Karen

Permalink Reply by Paul Bowers on November 18, 2012 at 3:08pm

Hi Jerry

I want to tell you how sorry I am for the loss of your partner. It is like a knife going deep into the center of your soul, excruciating, and unfortunately we are left to live and feel every bit of it. I lost my life partner of 23 years this past September. He had multiple strokes over several years. I had been his care giver for the last 8 years, until the last one this September, at which time he came home with Hospice for one week. He passed in his own home, with the dogs and I at his bedside.

I do think that the best anyone can ever do for someone who is going through a staggering loss is simply to listen. People do mean well, but until they go down that road, the words they say to us echo off the walls. I am 51 now. Do I want to find another partner?. No one will ever come close to the man I knew and loved for 25 years. It was like any relationship, not perfect at times, but with my partner Mike, we both understood and loved each other unconditionally. After Mike's passing, I made out my Medical Power of Attorney and also paid for my cremation which will include my ashes being buried on Mike's grave site. This makes me happy knowing that in the end, at least our physical remains will be together again. I have begun a spiritual reawakening of sorts and find comfort in reading scripture and daily prayers. I so desperately want to believe that when my time comes to leave this world, Mike will be there to help me across. When Mike was alive, though not able to speak, Mike and I always had a gesture we used with each other. I would touch my hand to my heart, and then to Mike's. Then, I let him know that where one goes, so does the other. I was so fortunate to meet a man who really loved me. I have learned that there is no control in life. Only love. Give it freely to those who mean something to you. Money, "things", mean NOTHING.

If you would ever like to talk with me, I would love to listen. Comfort comes from those who have been there. I hope your pain and loss will lessen in time. Everyone here, I want that for all of you.

Permalink Reply by Michael Reikowsky on February 12, 2013 at 4:02pm

I could not have said it better. Our stories are tragically similar... I was 37 when I met Dan and it too was love a firs sight. We had a different set of challenges. Dan was active duty military when we met so we could not publicly display our relationship. We kept "in the closet" to almost everyone for fear of him losing his job. And he was good a his job... The awards and commendations fill the house. Even aft he retired from active duty (23 years!) and went back into the same job but as civil service, he was civilian of the quarter and year at many different levels for the next 5 years.

My family has been very supportive since Dan passed. Wish I could say the same for Dan's family.... Seems all they are concerned about is money and possessions... They want so much stuff from the house... At first I conceded and gave what the asked for but then thought about it... They were stripping away everything that had meaning to me. So I have stopped and do not look forward to the next conversation with them. Thank God they live 6 hrs away so don't show up at the house every weekend. I am sure I could not handle that.

My current challenge is that I took the last year off from work to care for Danny... Would not change tha for one second... But I am finding it very hard to find a new job. So no job, no husband, no health insurance, no will to enjoy life... I know if I could find a job to have something to focus on, I will be able to breath again. But I keep trying.

It's nice to have a place to vent and share. Thabj you for listening and I hope your pain eases.

Permalink Reply by Jerry Matheny on September 28, 2013 at 10:35pm

17 month update. Most days I don't think anything is getting any better. I finally started breaking down and crying at random times. I guess that's a good thing. At least I'm feeling something. Work sucks. I have no patience for the bull of my co workers. I just look at them and think how they have no idea, how they have never experienced something like this and all the petty day to day is not nearly as traumatic as they would like me to believe.

Dealing with the finances has been the hardest part. This was always Rob's job, and taking responsibility for this just feels wrong. It's not gotten out of control, just very difficult to motivate myself.

I have reached out and started making some new friends, most of our friends were through Rob and I don't hear much from them anymore. I've always been much more of an introvert, so making friends and being social is a challenge. Fortunately one of these new friends has also lost a partner, so they have been very understanding of my reluctance to trust in any new relationship. However they are a couple, and at the end of the day they go home together and I go home alone. Hope this is just another phase of this process and I will move on to something better soon.

Permalink Reply by Jerry Matheny on May 6, 2014 at 6:16pm

Just to update this and the process. It has now been just a few weeks over two years. Finally I have fallen apart. I have held things together as best as I could for all this time. Thinking all along that I was handling things fairly well. Sure I was sad and lonely and missing Rob every day but I was making it and getting through the days. About a month ago that all started to change as I felt myself losing hold on all the responsibilities at work and the pressures of life and job. I was becoming increasingly agitated and irritable and wrote it off as overwork. Eventually this got worse and worse I was breaking down and didn't realize it at the time. I was convinced people were after me, that everyone hated me and that anyone I talked to that told me it was all in my head was just a part of the other side that was trying to make me think I was going crazy. I have a new insight to the mentally ill now that I never had before. Nobody is ever crazy it's everyone else that is insane. After two weeks of near sleepless nights and lack of appetite and losing 15 pounds, being exhausted and withdrawn during the work day and running around doing anything possible to distract myself and keep busy at night it all finally broke.

The trouble was simple when all said and done. People have said to me that I need to "let it go" and move on with my life. I just couldn't accept that. To me saying to let it go was the same as if this whole relationship was an object that had somehow broken and couldn't be fixed. To "let it go", was the same to me as saying "throw it away" and go look for another one. How could I possibly do that? How could I take the amazing love from this amazing man who was the greatest gift I have ever received, who loved me beyond imagination for no other reason than because I was me, and throw it away and move on? When life is shattered we cling to the pieces we have left. Holding on to them because they are all we have. If we lose our grief, then what do we have left? It feels like we will have nothing.

I lost the most precious person in my life, if I stop grieving what will I have? So I had to find a new way to allow myself to release. I have to "allow it to go, if it is right for it to do so". I am giving up the choice of what stays and what goes, and let it decide what I need to keep and what I do not. My grip on this was destroying me. I walled myself in. But it's time. It is finally time. I have cried now for days. I have had a couple times of crying before this, but with this change the tears now flow almost continuously.

I can almost see the pain in me pouring out as the tangled knots of blackness unravel slowly. I am amazed at the depth from which these tears come. It feels endless beyond the core of my soul. I can not imagine how long this will take. But it seems that every drop of love we shared, must be honored and grieved with a tear. So if that is true a part of me hopes I will never stop crying. That there will always be more to remind me of how greatly I loved and was loved.

I have nobody in my life who understands what I am going through. The only thing they can say is to go to a counselor. Yes I'm stubborn but I don't see why we as people can't learn to figure this process out without a counselor. My walls have crumbled, my heart is raw and exposed, I have no idea what is to happen next.

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