Feeling The Need To Shake The Sadness

[MartyT]

Mary, dear, I came across this blog post this morning and I thought of you when I read it. Take from it whatever fits for you, and know that we are very happy to learn that you're feeling so much better:

Are You Your Own Best Friend?

[mfh]

Marty, this is a great article with ideas that I will find very helpful. I am so used to being there for others all my life and especially taking care of Bill around the clock for 4 years that I fear self care has long gone by the wayside. Being as sick as I was these past couple weeks reminded me that I best get on my horse and start taking care of myself so your article is well timed. So I started with vitamins, daily walks, better nutrition and I MUST get back to my meditation long abandoned. I have been on the receiving end of so much since Bill died and even before. For someone who is better at giving, that has been an uncomfortable but necessary switch. The article also has more food for thought so I will read it a few times to see more of me in it. Thanks so much. Mary

[MartyT]

Oh good, Mary ~ I'm so glad you read the article. I thought it was especially well done. You might like this one, too: When the Griever Is a Health Care Professional

[mfh]

Marty, thank you for that link. It led to these thoughts/feelings. Losing Bill and being a therapist are not a good mix. I expect myself to handle this huge loss better than everyone and I know that gets in my way. We had a marriage where we shared feelings easily and openly with each other. As therapists we both worked at a real and deep level with clients. Losing Bill has indeed left me feeling crazy and confused. I am so used to sharing with him every single day and living a life of sharing deep feelings with him...a life most of the people I know do not live or even recognize. I feel like a misfit which I always did until I met Bill...who was so much like me and shared so much of himself that I knew I was not a misfit. Now I feel like one again. I can sense that others who I consider friends (and who are friends and kind caring people)...just have no clue about the depth of my pain. I don't even enjoy most of what they enjoy. Bill and I loved classical music...he would weep often at a concert...so would I. We loved poetry, hiking....I do know now that no one can not fix me. This is not fixable. I don't know what to expect on this road as often as I have walked a similar road with clients. So I journal my pain, post a bit here on this site, share on a rare occasion with a friend when I sense it is safe but responses always fall short because they are not what Bill would say.- I share here a bit more easily but do it with some hesitation because I "should" be able to handle this. I am not handling it...or maybe I am and just hold up all those expectations. Frankly I think my pain is pretty much to be expected and pretty normal considering what I lost. I waited 35 years for Bill (really 46 my age when we married). I think I have done pretty well to keep on going, doing all I do but I sense that others I know would have "moved on" by now and do not have a clue what this is like. I am just now waking up to the hole in my life and how it will always be there and what to do with the years I have left to make them full and meaningful. This is just a jumble of thoughts and I thank you for listening to them.

I have given some thought recently to returning to the grief counselor I was seeing. Not sure how much help that will be. I stopped because it no longer felt helpful. It seemed I reached a point where I knew I just had to walk this path alone. But I keep a lot inside following 36 years of sharing so much and so easily. I have no idea where this message is going so I will stop. Thank you for the links today and the support. I feel it from here. Mary

[Queeniemary]

Marty, thank you for the Link to "Are you your own best friend". Very good article, we forget many times that we have to take care of ourselves. Sometimes we are kinder to others than to ourselves, we expect more from ourselves.

Mary (Queeniemary) in Arkansas

[HAP]

Dear friends,

I have had an interesting couple of days that have led some interesting places.

First, things are proceeding on the website for Walking with Jane. The prototype is done and now it is about coding and content creation. I am stunned by the graphic design and so proud of the people who are doing the design work--both of whom are former students who volunteered their time and talent to the task. I could have designed a site, but it would be nowhere close to what they are creating for us.

Second, the people doing content creation have been hard at work. Two of them interviewed me about Jane and about why I am doing this. The interviews each lasted well over two hours and brought all of us to tears periodically. When they were done we tools some time to catch up on where they have been and what they have been doing. One of the conversations got me talking about all the different things former journalism students are doing with their lives. It is moving to think how big an influence Jane and I both had on our students. It was all very draining--but very good draining. I feel really good about a lot of things--not just the progress we are making on that stuff--but it is largely growing out of WWJ.

Third, There has been a huge surge this week in donations to my Jimmy Fund Marathon Walk. When i started two weeks ago I thought $500 was going to be a stretch. As of tonight we are at $1880 and I wonder what a realistic goal will turn out to have been. The generosity of our former students has not just been the time they are expending on the WWJ project. So many have opened their wallets in ways I did not see coming at all.

Fourth, Dana-Farber asked me last week to participate in their HEAL trial. It is a very highly structured online grief program that they are trying out over the next 12 weeks on caregivers of cancer patients at Dana-Farber who have died. The concern is that these caregivers--often spouses--are apparently more likely to develop "prolonged grief" or grief that begins to get in the way of the person dealing constructively with life--sorry I have not said that very well--I understand the concept but don't quite know how to explain it. I finished session three tonight and feel more relaxed than i have in months. This session was in part on doing relaxation by tightening muscle groups. The first three sessions have focussed on self care issues. My first task is making sure i go to bed at about the same time each night and get up at about the same time each morning--and that there be enough hours of sleep in between to get the amount of rest the individual's body traditionally has needed in the past. My next is to make sure that I get some recreational/relaxation time every day. The tasks are tailored to individual needs based on a survey given in the first session and updated by a similar check-in questionnaire each day. It has only been three sessions since last Friday, but I seem to be feeling a bit better.

Finally, Dwayne is home from the hospital and seems to be on the mend. I have worried about him those past several weeks.

I have been blessed in so many ways this week--and in so many ways these last several months.

Thank you all for being among those blessings.

Peace,

Harry

[Queeniemary]

"The concern is that these caregivers--often spouses--are apparently more likely to develop "prolonged grief" or grief that begins to get in the way of the person dealing constructively with life--sorry I have not said that very well--I understand the concept but don't quite know how to explain it."

Harry, I can understand that caregivers are likely to develop "prolonged grief". A caregivers life is filled with caring for the spouse, and then suddenly when the spouse is gone, the caregiver is adrift. I think "prolonged grief" can hit any of us however, whether a caregiver or not, when we lose a spouse. I was not a caregiver, my husband's death was sudden and totally unexpected. He had not been sick, or had any signs of the massive coronary that was coming. I loved my husband, and miss him terribly, and will for the rest of my life. Some days it seems like only yesterday that he was here, and other days it seems like he has been gone forever. I have tried, and think I am succeeding in dealing with life, and "moving on" (whatever that means). How can you tell when the grief is "prolonged grief"? Any thoughts anyone?

Mary (Queeniemary) in Arkansas

[kayc]

I went through that with my mother-in-law...she was my best friend, the mom I'd always wanted, and we were very close. I took care of her when she was bedridden with cancer for nearly three years. When she passed away I felt such an emptiness, like I didn't know my purpose anymore, and life as I'd known it changed so drastically, even though I was glad she was no longer suffering, I miss her beyond belief as the permanence and reality set it.

[HAP]

Friends,

Sorry I have had to vanish for a few days. I needed to spend some time with friends on the physical plane and take some time to think through some things.

I am back to having trouble sleeping. Not surprising given what July and August were like a year ago. We spent part of this week in NH saying good-bye to it and to each other, knowing what we were coming home to. We spent one week every summer off alone in the Lakes Region where no one could interrupt us--where we could be totally us for a week. Next week was the biopsy. The week after that, the diagnosis, the blood clot and the first hospitalization of her life. The week after that the first oncology visit where we were told the oncologist did not expect to see another case of this in her career--and then had three more within a week. From there it all devolves into endless rips to Boston through awful traffic and endless frustration that ends with a suddenness I still cannot quite believe.

The D-F study is still focussed on self-care and getting me to reconnect with people, places and things that made up the routines of our life together. Some of that has been difficult at times, but I think I am moving in the right direction most of the time. I've gone for a long walk in the woods and have another walk tentatively scheduled with a friend on Thursday--depending on weather. I went out with friends for lunch today--and tried not to make the awkwardness I felt too obvious. This was my first monthly retiree lunch--and Jane should have been there with me. I started looking through things last weekend, trying to figure out where things need to live now--and what in the longterm I need to keep and what I need to give away. I am watching some TV and may find it in me to listen to the Red Sox more frequently--a thing we did nightly all summer for years. I love baseball, but somehow this year I am having trouble working up any real enthusiasm for any sport. We'll see if that changes over time.

I am trying not to pick at the scabs this has left on my life. I walk every morning and try to plan the day ahead as I always did on these walks. Sometimes there is only the loss in my brain when I start out, but the endorphins kick in after a couple of miles. I see a lawyer next week about setting up the foundation and rewriting my will. Things move forward in bits and starts--and i have gotten used to the idea hat sometimes i am going to accomplish nothing on any given day despite my intentions. The grief waves come and I let them wash over me. I survived the night after she died. i survived the days until my brother arrived. I survived the funeral and bearing my end of the casket. I survived the winter and the spring. I will survive this long hot summer, the coming of fall, and the long winter.

The glads are blooming in the garden. I put some on her grave and put others in the house in a vase we bought together. The fragrance of the marigolds fills the house when the fan is running or the breeze comes in through the windows. The zinnias throw their weight into the mix. The empty ache is still there sometimes, especially in the morning when I wake up and she is not there. It reduced me to tears Sunday morning in a way I have not experienced since the days right after her death. But the walks and the flowers and the work bring me back to the land of life. The phoenix within me stirs--the flames have cooled somewhat. I am not yet ready to be reborn, but I feel the quickening in my pulse sometimes that says Yes, you will be whole again--different but whole. But first there is this still burning pain to be worked through. I will get there though. I know that much now.

My mind keeps repeating the word patience. It keeps reminding me to breathe. It keeps reminding me that this love and this pain were not created in a day. And that while the love will endure, unraveling the pain will take its own sweet time. So I practice my breathing and practice patience. Rain and cool weather will come. The sun will return. The cycle will carry me to where I need to be--and to what I will need to do.

I am late getting to bed. But i needed to write this. I needed to remind myself about Boetheus and the Wheel of Fortune--that sometimes the wheel raises you up to great heights--and other times lowers you to the most awful lows. But patience always carries the day

May all of us have restful nights and peaceful days.

Peace,

Harry

[Dwaynecg]

My Dear Friend Harry,

I was riding those waves of grief like you. So many ups and downs. Tears starting from nowhere. It takes a lot of work each day to keep going. I have found that the anti-depressant helps me keep a more, even keel. The hospice groups. I get to talk to people every week, that also helps. The biggest thing yet that has given me my life back full of energy and the hunger to get my classes started, was seeing Pauline's beautiful face as they woke me up in recovery. I saw her face Healthy and Happy. That was a True Gift from God. She was my angel watching over me and she still is now. Her Father, and brother tried to bring me down, and I let them do it for about a day and a half. Then I realized I have the control of my life not them. Now I am full of life again. Just waiting for the DR today to give me the go ahead so I can get my classes started as soon as I can. That is what Pauline wanted for me to do. I will not let anything stop me now.

Harry I enjoy reading the way you write. It is a gift you have with the words you use and the way you can express them.

If you ever need to talk you know where I am.

God Bless you Harry my dear friend,

Dwayne

[just one more hug]

You do have a gift...your writing stirs my emotions...so heartfelt and honest...we can all relate. To remind yourself to "just breathe", the tattoo I had put on my inner wrist, as a reminder that some days that is an accomplishment in itself. Grief held me down on some days so bad that I did forget to breathe...still happens at times...on those days it's ok to just breathe.... I have found that to be true.

At times I have been depressed after reading some posts here..feeling all the pain...your writings and way with words, even through the sadness, are somehow uplifting ....thank you....

[Queeniemary]

Harry,

You do have a wonderful way with words, and your words sometimes help us (me) to really think about where we (I am) are on this journey.

In a previous post, you wrote the following 'The loss is real. the pain is real. The sorrow is real. But what we do with those things matters. Do we learn from them? Or do we get lost in them? Sometimes getting lost in those feelings is a necessary part of the learning process. Sometimes, however, it is not. Sometimes we get caught up in the cycle of pain and can find no way out. The fear, the hurt, the loss overwhelm us and we lose all concept of who we were, who we are, and who we are becoming. When grief defines us entirely we need that divine hand to lift us from our grief and carry us the distance that has to be covered to lessen the pain to the point we can walk on our own again' You said it so well, the loss is real, the pain is real, the sorrow is real, but while they are a necessary part of the process of this journey, we have to be able to find ourselves again, and sometimes we need help doing this. Probably paraphrased you, and hope I did not distort your meaning, but it spoke to me, and just wanted to tell you I appreciated it. Just reinforced to me that we do not have to do this journey alone!

Peace for all of us on this journey no one wanted to make. Thank you Harry.

Mary (Queeniemary) in Arkansas

[Chrissie]

Mary,

Thank you for repeating Harry's post. I needed that reassurance that we are not alone in this journey. It was 18 months on 7/31/11 and that day really hit me hard for some reason. I felt so alone that day and the grief was just overwhelming. Harry, you definately have a way with words!! Thank you

Chris

[mfh]

Dear Harry and all,

I am learning that in addition to the waves of grief and memories...there are layers to it also...layers that we tend to uncover, I believe, when our body/minds can handle them. I am dealing with the layer I will call...pieces of trauma. Care giving has its own sets of traumas as does dealing with a sudden loss. They are different but all trauma....I am not certain that the literature deals much with the traumas that caregivers experience. Literature seems to focus on exhaustion, loss of identity, etc. but not so much on the trauma (traumatic grief). Watching my brilliant and kind Bill be unable to figure out how to put his arm through a sleeve, unable to figure out that the toothbrush goes in his mouth, unable to button a shirt and on and on and on....feel like little traumas, little good-byes that pile up and pile up until life is just one trauma after another. Coupled with the fact that I went into robot mode now and then in order to keep on keeping on....well...tough stuff.

We WILL all survive this assault on our lives and having each other helps a lot.

Peace to all of us and to those we lost,

Mary

[Queeniemary]

Mary,

Thank you for repeating Harry's post. I needed that reassurance that we are not alone in this journey. It was 18 months on 7/31/11 and that day really hit me hard for some reason. I felt so alone that day and the grief was just overwhelming. Harry, you definately have a way with words!! Thank you

Chris

Chris was 18 months for me on July 13th. Life goes on, but it is not often easy.

Mary (Queeniemary) in Arkansas

[kayc]

This thread has evolved and kind of taken a feel of it's own...

Harry, you are a gifted writer and really should assemble your thoughts into a book to share with the world. It is too great a gift to ignore.

[nats]

Hello My friends,

It's been a while since I've posted here and wanted to say it's so good to see and hear all these words of wisdom and facts brought to the front by many of you, we are really healing as a group when you read these posts...I'm so thankful and blessed that I have been able to progress with my life during such a painful time...I am also thankful I found this site about a month after Ruth's passing reading and understanding all the different journey's we are on has been a great help with the healing of my grief...kinda like the story of the boy who had no shoes and was sad until he saw the boy who had no feet...May God Bless and Guide Us All...

NATS

[HAP]

Friends,

My best news is posted elsewhere: Dwayne is getting out of the hospital tomorrow.

But I have been absent to a large extent the last week or two and owe some positives here above and beyond that.

The Dana-Farber grief study is going well. It has forced me into some dark spaces, as i think i said above, but has provided some tools to help me get through the next four months with. Some of it is things i already knew but had neglected. Other of it is things I had not thought of. It has been a positive experience.

The coding is coming along for the website. I bought a domain name this week and signed up for a web hosting service. While the site is not yet online--still copy to write and code to write as well--the prototype we posted on Facebook has received positive responses. The two primary designers are demonstrating truly outstanding gifts at graphic design and seem to be anticipating both my thoughts and those of others. It is going to be gorgeous.

My fundraising for the Marathon Walk is just shy of $3000. We have raised over $10,000 for cancer research in the last eight months, more than half of it since the first of June. This week I am meeting with people from both Dana-Farber and the Caring for Carcinoid Foundation. And next week I had an appointment to see a lawyer about setting up the non-profit foundation.

A year ago, the week ahead was a horrible one. Jane and I were back from our last summer trip together and her biopsy was just ahead. By a week from Monday...

But I am determined to make this week a series of positives that will send a clear message that this cancer chose the wrong person when it picked on Jane. She said she wanted to be the one to beat this. God willing, she will be the one who destroys it for everyone.

Peace,

Harry

[HAP]

Dear Friends,

I am going to start this by going back to Tammy's original post--about the need for all of us to see the positive things in our lives despite the pain we are all going through. By learning to see the positives we take an active role in dealing with our own grief. By giving voice to those positives we give them the same power that we give the negatives by giving voice to them. We are all of us locked in a battle with our pain. But if all we see is that pain, if all we focus on is that pain, then we will not move beyond that pain. We will stay locked in our grief forever--and that is not only not a good thing for us, but not at all what our partners would want for us after their passing.

Tammy's proposal when she started this thread was that each of us would try to post something positive every day or so. It might be the return of the birds in the spring or the first ripe tomato in the garden. It might be getting through the day without crying or going to the grocery without a breakdown. It might simply be going for a walk around the neighborhood. It might be finding that penny on the sidewalk with the loved one's year of birth.

As most of you know, I have been taking part in an experimental online grief program put together by the Dana-Farber Cancer Institute in Boston. Their emphasis is similar. The first part of the program is about self-care and setting positive goals--about doing things to reward yourself for each positive step. And, as most of you know, my wife died from a truly awful form of cancer that I have vowed to destroy.

But I have also come to care very deeply about the other people on this site. And it worries me that this particular strand has been ignored for nearly a week--since the last time I was here. Part of that may be that the regular contributors are off fighting their own dragons--or more likely on vacation. Part of that, in looking at some of the topics that have been added while I have myself been elsewhere are from those so new to their grief that pain is all there is. I know and understand what that is because I have been there. It will take you folks time to begin to see there is any light left in the world. And I also know that the older hands are responsible for greeting those new to this world we would all prefer not to be part of but are and helping those new people get through that first awesome darkness.

But we all need a place that we can focus on the positives. We all need the discipline to look for them. This strand is one of the places we can do that. And it is a highly visible place because it is dedicated not to the positives occurring in the life of one of us--but to the positives that are happening to all of us. I know we all celebrate when one of us finds a job or recovers from an illness. And I adore those individual threads that celebrate those moments. But those topics too quickly slide to the bottom of the page and vanish. What Tammy was trying to do here, I think, was create a thread that would not vanish--that would provide each of us with the hope that there was always something going on out there that was positive for someone--and that would give all of us on those dark days the hope that our positive day would come as well.

Now I will be the first to admit that I have been as guilty as anyone this past week about not adding to the common positives. I have spent the week trying to make some big positives happen in my fight against neuroendocrine cancer and carcinoid syndrome--the disease that killed my wife. I have come home every night this week with the best of intentions, but exhaustion has gotten in the way. Yesterday and tonight I plan on early nights so i can get back to something that looks like a regular sleep schedule--a thing I had been doing well with the past couple of weeks but have lost lately.

So herewith, some good news on the several fronts of my life:

1. On September 18 I am going to participate in the Jimmy Fund Marathon Walk as part of the Caring for Carcinoid Foundation team. Every nickel we raise will go to support research on NEC at the Dana-Farber Cancer Institute. As of this morning, I have raised $2920 for that team.

2. D-F and Brigham and Women's Hospital in Boston have started a national center for treatment and research on NEC and Carcinoid Syndrome at B&W, in part because of my wife's life and their work with her.

3. D-F, CFCF and the American Cancer Society have all agreed to help me figure out a way to come up with a plan to get people to walk in malls for Neuroendocrine Tumor Awareness Day on November 10. We are also going to try to set up booths where people can make donations and pick up information about the disease in malls on that date.

4. Several former students who are now in the newspaper business have volunteered to create and sell their chains on a feature package on NEC and CS to run on or about November 10.

5. We had a celebration at my home on Wednesday for the key people on the Walking with Jane team. We presented seven walking sticks to people whose contributions went above and beyond the call. Within hours of the break up of that party two people had come p with new ideas for fundraisers for WWJ.

6. I have a phone call set up for Monday afternoon with someone from the Jimmy Fund about how to do the mall thing in November.

7. I finished the first for-fun novel I have read since Jane got sick last year last night.

8 (At the risk of offending the Yankee fans in the audience) The Red Sox are in first place in the AL East.

9. Dwayne seems to be on the mend. He called this am and told me he went out for walks twice yesterday.

10. They did the biopsy on my nose this morning. The doctor described the spot as "really small." And despite the fact the novacaine has worn off, it doesn't hurt--merely itches periodically. Just have to remember not to scratch it.

So what good things are happening in your lives? It's time to fill this space up again with some good news on a daily basis.

As my buddy Callahan used to say, "Shared pain is diminished; shared joy is multiplied."

Peace,

Harry

[Queeniemary]

Harry, you are right, need to share the positives.

Our community theater is putting on the production "Annie", 64 people in the cast, and it was a sell out last weekend, and we expect the same this weekend. I am the stage manager, and running my legs off, and loving it.

My friend Tom will have his first grandchild, a little girl, before the weekend is over. They will induce labor on Sunday, if his daughter does not have the baby before then. This is special time for Tom, as his late wife's birthday is tomorrow, and all are hoping new baby comes on her birthday.

My friend Dana who lost her husband in 2009, is off, just moments ago, for Farm Aid in Kansas City with her family. Her husband worked for the USDA, and they went every year, and she has continued the practice. Then after Farm Aid, they are headed to New York for a few days. My two corgi dogs and I are keeping her pug Hercules for the week. My Corgi girls adore him!

Hope all have a good weekend, mine is going to be super busy with the stage production of Annie. Mike would have loved it!

Mary (Queeniemary) in Arkansas

[just one more hug]

My positive for today...Dr. office just called....My mammogram was normal...Dreaded having it done..hardest part..walking into that hospital where we spent so many dark days...took all I had to walk in there...Guess God still wants me around for some reason....

Dear friend dealing with husbands serious health problems...She loves Peanut Butter Pie...found on menu at local eatery..brought her a piece yesterday...she was over the moon...Such a small thing ..yet brought a huge smile to her face...something she does not do often these days...to see an old and dear friend smile...a positive for sure.....

Carol

[mfh]

Carol, congrats on the negative mammo...always a source of fear for women and then to have to go to the hospital for it.

I noticed today at my watercolor workshop (I am a novice in this area) that one year ago when I did a workshop....my colors were intense, heavy, even angry. Today they were light, pastel, peaceful. I do not feel that peaceful but certainly a bit less tormented than one year ago.

Mary

[Queeniemary]

Carol, great news on the mammogram.

My positives

Recently had my annual checkups, and bone density test was so good my doctor says she does not think I will ever need another one. For an old broad (nearly 66) I am in pretty good health!

Last night's production of Annie, our community theater production was sold out, and they moved in folding chairs, we have 365 seats, that was just awesome for this small community. We are already sold out for today (Sunday).

Going to start this Wednesday volunteering one day a week at our arts council office, answering phones, etc. Our arts council is, like many non profit art related organizations, hurting for money, so we cannot afford a lot of paid help. We have one full time paid employee, and everything else must be volunteer. The economy is hurting everyong. Looking forward to doing that.

Started learning my lines yesterday for my part in a September production of the play "Noodles". Going to play the part of a crazy neighbor, Mrs. Doodah-Doodah.

As you can see most of my positives have to do with theater. It was such a big part of my life and Mikes also. So glad I am still able to stay involved.

Mary (Queeniemary) in Arkansas

[HAP]

Dear friends,

I took a blind leap last night. Someone told me a folk group and a jazz group were going to be playing in a local bar. So I went, thinking I might get through one set, then come home.

I didn't leave until 1:30 a.m. They were both that good.

I thought I would know no one and that I would be sitting alone in a crowded room, but several people I knew were there. We listened to the music, watched the Red Sox lose--the sole downer of the night--but even that was a positive because it was the first time all year I got to the end of a game, win or lose. It was a good night that reminded me I am still alive--and a bit more than the organizer I seem to have become.

I slept until 9 a.m. this morning. I haven't done that for along time either.

Peace,

Harry

[kayc]

Carol, congrats on the mammogram! I remember how scared I was the last time I had one done and how relieved I was when it came out okay.

Harry, I'm glad you enjoyed a good evening! I enjoyed yesterday, went to the vortex in Gold Hill (400 miles of driving!), it was a nice day and my neighbor and I enjoyed the day out, polishing it off with a great Chinese dinner...and my dog missed me so much he kissed me many times last night! I told him I should leave him more often! LOL