The Fruits Of Exhaustion

[HAP]

Dear friends,

I'm exhausted.

I'm physically exhausted. I left the house a little after six this morning to present at a journalism conference in Boston. I got home just in time to go out for a dinner meeting with the two people who are putting together a part of our on site fundraising activities for Walking with Jane's Relay for Life effort. Both the conference and the dinner meeting went well and were very productive. And the dinner meeting got me out socially into an environment that was different from many of the meetings I do. But it was a physically tiring day for all that the things that happened in it were positive.

And the physical taxation will continue through the end of next week and beyond as Relay gets closer and closer.

But I'm mentally exhausted as well. For the last several weeks every day has involved a new set of mental puzzles that have needed to be resolved. We have two major Walking with Jane fundraisers between now and Relay. We have designed posters and tickets and worked through some of the logistical details of how to make those work. I've also begun the planning and thinking process for a number of events that will take place after Relay aimed at raising money for--and awareness of--NET. And I've continued to evolve the reorganization of the house that is our home.

And I'm emotionally exhausted. Every fundraiser exacts an emotional toll because I am constantly aware of why I am doing them--and that I would not be doing them were Jane still here. Every move I make in reworking the house brings me into contact with things that remind me of Jane and her absence. Every meal I eat alone, every laundry I fold that includes only my clothes and not hers reinforces that.

I am tired in my body, in my mind, and in my soul.

But that exhaustion only solidifies my determination to find the answers to Jane's cancer and all the other diseases that take people away long before they should be. I don't want others to feel what I feel now. I don't want others to look ahead and see this life that stretches on like the steppes of Russia in winter in the absence of the person they love.

I know we all die. I know I can't change that. I know we all will suffer pain and loss. I know I can't change that. But when death comes I want it to be after a long and fruitful life--and I want the spouse left behind to know the time that remains will not be too long before they, too, find that final rest.

None of us knows the time we have. But I fully expect to live for many years yet. That time needs to be used wisely and well. So I will fight to find the answers to this disease in the only ways I know how. I will study and write and speak. I will put fire in the hearts of men and women and help fuel their quest for answers and cures. I will help to find the money they need to do those things with the gifts that I have.

And one day--perhaps before I die--perhaps not--Jane's quest to defeat this disease will end in victory. And there will one less disease stealing people's lives before they want to give them up.

Peace,

Harry

[mfh]

Harry, your fatigue comes right through your post. I so understand. I have not done what you have done in the past many months but I just said to someone today. "I am exhausted, tired, and I need a time out....a sabbatical for my body, mind, soul"...and I am setting things up for just that. YOU have worked so so hard since Jane died to get the word out, educate and raise money....along with grieving, eating those meals alone (I get that one), folding JUST your laundry, climbing into an empty bed, and on and on with all the myriad of exhausting ways that the loss of Jane (and for me, Bill) reminds us every minute of every day that we have lost the most important person in our lives. It IS totally exhausting and throw in the huge project you have taken on...time to take a break perhaps before YOU break.

I am preparing to leap off a cliff-i.e. taking some risks so I can clear a space and time for me to focus on me. As frightening as it is...it is right. Sounds like you might need a break also...

Take care of yourself..we both know that the person who used to remind us to do that and even do some of it for us...is not able to do that any longer.

Peace to your heart,

Mary

[kayc]

Harry, I pray you have the strength needed to see through this very fruitful effort. I feel your exhaustion and hope you can find the breathers necessary for you.

Mary, I pray you get the rest you so need, I think you're taking a step in the right direction! We can't keep going on fumes or we suffer burnout...and one thing I learned long ago...we can fill ourselves with "busy-ness" which depletes us, or we can heed our soul's calling, which is fulfilling. Sometimes it is a matter of timing...what once was our "calling" may have ceased to be and it is up to us to recognize it and move in the new direction we must go. I have found in my life that people often put pressure on us to fill this position or that, but unless it is a calling from within, that isn't necessarily what we should fill our life doing. They don't always understand our saying "no" but I've learned to listen to that inner voice within me, and not "others' pressure". You are wise to listen to your voice within!

[mfh]

Thanks, Kay

Getting away helped me to let in and give myself permission to acknowledge how totally exhausted I am. Harry's post added to my awareness. My exhaustion is total: body/mind/soul and beyond. As you know it is easier said than done to pull back for soul time, let go of things that had Bill's and my dreams attached to them (my publication and more), and simultaneously grieve. My decisions of late are making it more difficult for me to give myself permission to "still" be grieving (an attempt on the part of my psyche to escape the inevitable) and the tears have increased. I find my anxiety level vacillating as the prospect of leaping off a cliff begins to take shape. I KNOW I need a long "time-out". I tend to be hard on myself in terms of "shoulds"...should not be crying as much as I have for the past 8 days-mostly alone; should be able to push myself to do my publication because it serves the community so well and I get emails and people stopping me regularly to tell me how grateful they are for its presence...now I have to announce (probably in the June issue-deadline May 15)) that it is for sale and hope someone wants to grow it and pay me for it....I tend to think I "should" do it when everything about me is tired, lacks passion for it, does not want to do what it would take to grow it, and just wants a pillow...to rest on and cry into. All of this has taken me (somewhat) by surprise. Thanks for your kind and supportive words. My decision to sell it IS final. Time to leap. Last issue will be October so I can get folks ads in through their peak income time (the artists count on tourists for income)....unless someone comes along sooner. This publication also feels like my tie to people. I KNOW in my head many of my relationships go far deeper than a magazine but that is just head knowledge. Useless right now. October issue goes to press on Sept. 15..day one of my leap. Between now and then I have a ton to do to prepare it for sale because during the last 4 years (2 care giving, 2 grieving) my files are not as organized as they were before. I will also continue to block out stretches of time for my quest. I plan to take money out of my savings to help me survive for one year (Sept. to Sept) and perhaps later in the year attempt to rebuild a very small practice (doing light therapy/counseling) in my home office where I saw clients up until about 4 months before Bill died. I had closed my Madison office to take care of Bill. When I do start again, I will just work with women which is what I have mostly done anyway except for the co-therapy with Bill when we teamed to help couples and families. I might be sorry in ten years that I used the money but right now I know I must make some serious changes...before I collapse..it is survival time and I have pushed myself way too hard for way too long. I have nothing left. I am empty and lost...and sad, of course. You know what that is like. Thanks again for your kind words. This stated as a one sentence thank you. Peace, Mary mfh

[kayc]

Oh Mary, you are such a special person, I wish I lived closer to you so I could just wrap you in a cocoon and let you rest...try to let go of your "shoulds", they come from an OUTWARD source, not the inner source I was talking about...keep listening to that still small inner voice, it knows what you need. No shoulds! You have done amazing with all you have gone through, and have helped all of us along the way, you'd be great as a counselor, just as I'm sure you always were. I hope this final season with the magazine helps you get the financial boost you need to tide you over.

My boss said he may give me a few more hours/week, although when and how much remains to be seen...some of it hinges on whether or not some contracts come to fruition and whether the pick up in business is a steady trend or short lived. He just put two people back on full time but they are "production" not "expense" as my wages are. (What they do increases business whereas I am a paper pusher, so to speak). Good news, we made our final repayment to the IRS, it has been years in the work, I have labored HARD for this, and are making our final repayment to the state this month...this has taken me several years of working with them and plugging away on behalf of the company! Lots of public relations and paperwork! I feel good, having accomplished this.

[mfh]

Dear Kay,

I am glad you may get more hours. I hope it happens yesterday...but the wheels of justice move slowly as we know. Not sure what you mean by repayment to IRS...sounds like the company is lucky to have you. You should feel good. Congratulations.

Attached is tonight's writing. For a while Bill and I worked with the renewal of the labyrinth as a meditation tool...it is a great one. This labyrinth is the Chartres (on the floor of the Cathedral of Chartres). It is my favorite. If you trace the path from entrance at bottom center...you will see how it winds in and out, back and forth, back on itself, out to edge and into center. Time to think, process, whatever one wants. The center is a meditation spot and then you retrace the path out again. We actually painted one on our garage floor in CO. The land was not flat enough to put one outside. Grief A Labryrinth.pdf

Peace, Mary

[MartyT]

Mary, your labyrinth meditation is wonderful! Would you consider letting me post in on our Grief Healing blog, as another in our Voices of Experience series (with your copyright, of course)?

[mfh]

Thanks, Marty. Sure, you can use it. Do you need the poem in Word format instead of pdf?

Mary

[widower]

I'm sorry for the exhaustion any and all of you have felt. It struck a chord with me as I've felt similar. The loss is bad enough but to have "extra" things to deal with I appreciate makes it worse - as if that wasn't enough of a chasm to cross, right? In my case I had to sell the house and move shortly after her passing (long story). This would have been physically, mentally and emotionally exhausting even if it was for other reasons, but so much more so because it was due to losing her. Now I don't even have the comfort of the home we shared together. Also I've received little support from family or friends, frankly and her children from another marriage in particular made things a thousand times harder and are just disgusting people (also long story) who had little respect or consideration for this wonderful woman, and continue to be such towards her even after she has passed. It all has had me barely running on fumes from the start and I wonder why I keep getting dumped on. I would very much love to just stay in bed all day every day, but life won't permit that, as you all know.

Anyway sorry to rant and whine but it's just all been so ridiculous. I regret to hear the trials you all are facing in your situations and wishing you all the best always.

[kayc]

Mary,

Thank you for sharing your labyrinth of grief, I'm glad you're letting Marty share it as I think it'll be helpful for those just starting this path to understand that what they are going through is to be expected and normal.

Widower,

Are you working or retired? I'm sorry you aren't getting supportiveness from her family. I am so thankful that my kids, although grown and living lives of their own, would always be respectful and supportive not only to me, but to my spouse (when I had one). I appreciate that they had a wonderful relationship with George even though he entered our lives when they were teens and nearly grown. A lot of kids wouldn't give a stepparent a chance at that time in their lives. They miss and grieve him even as I do. I am sorry you had to let go of the home you once shared, that's very tough. I know one day I won't be able to stay in this home as it's a lot for a single woman who is underemployed to keep up with by herself! But as long as I can, I'd like to keep it, I love nature and the beautiful trees and the sound of the water rushing in the creek, the animals that come to visit...I just find solace here. Naturally, this is where I scattered his ashes, I knew he'd want this to be his final resting place as he always called this "our home in the clouds". I hope you will make some new friends in your new neighborhood and there will be some good things begin to emerge for you.

[widower]

Thanks kay. I'm working. That's been hard too, to stay on top of my game so to speak, and even just having to get out of bed and know I have to go in, wow have I hated that bad lately, but on the other hand gives me a "break" (generally) from thinking about all this (most of the time), I think I'd really go nuts if I was just around the house with too much time on my hands. And of course keeps the bills paid and all. I am glad you and others have kids/family to lean on. I have met a couple people from the neighborhood and they seem nice, but we'll see. I'm in a kind of "scenic" place as well (though not as much as you from what I can tell) and that helps.

Mary, best with the remaining time on the publication, I can appreciate how hard that must be for you. Bottom line do what you must to continue on...

Hal props as always for all your efforts. I hope to do similar one day, but right now cannot.

[melina]

Harry,

I understand how Jane's death has devastated you, but why are you working yourself to exhaustion over this fundraiser? Would Jane have wanted that for you?

It's admirable that you work toward protecting others from this disease, but at what price? And is it really necessary?

Melina

[kayc]

Widower,

I haven't really had anyone to lean on, my kids are grown and don't live here. When George died, my son was in the Air Force and they let him have one week off, and my daughter was here about two weeks before she resumed her life/activities. She used to come and go a bit and my son lived with me off and on some and although I enjoyed him popping in and out a bit, he really hasn't been here much, and has lived away several years now.

I went back to work about two weeks after George died, even coming in to do payroll during that time, but then had to get back to work. Life does have to go on, whether we feel like it or not, bills need paid, etc. My job was very supportive but then I lost my job a few months after he died as it went out of business. I think you're right, if I had to guess, I think it's hardest on those who don't have a job to go to, even though it's hard going there and we find it hard to focus, at least it serves as a diversion. Some who were retired and alone, I think were tempted to close the blinds and focus on their loss. That is tough.

[HAP]

Dear Melina,

I don't know how to answer your post. On the one hand it is clear you care enough about me to be worried. I need to remember that at the edge of exhaustion there are all kinds of dangers--that sometimes I need to take a break and let the world turn without me--if only for a little while. I can too easily work myself to the point I get sick--and then where am I and the things I have taken on?

But on the other hand, right now, NET has no strong lay advocate--and precious few medical advocates. Last year we spent less than $4 million on research on this disease. And I guess that is OK if the total number of people with it amounts to maybe 10,000 diagnoses a year. But there is recent evidence that indicates the number with NET may be closer to three million in the US alone. If that is true then I can't back away and hope someone else will take up the job.

Jane and I shared an attitude about the things we deemed important: whatever it takes. We were neither of us strangers to working to exhaustion if that were what it took to accomplish something we believed needed to be done.

That said, we both knew that if we went beyond a certain point we would not be able to continue. We kept an eye on each other to make sure when that line approached something got said about the needs of the many sometimes being served by the few or the one taking a break. I hear Jane's voice in your post and will try to slow my pace down so that I can finish the work. I've also decided the week after Relay that I need to arrange some serious R&R where I put cancer, hunger, and the rest of it on the shelf for a bit so I can catch my breath and come back to the fight renewed. One of the things I have begun to realize is I have been fighting this disease for close to two years without anything that looks like even a tiny break. That needs to stop.

I guess what I am saying is that I hear what you are saying--what all of you are saying. I will not stop fighting this thing, but I will try to fight it more intelligently. It won't do much good if I work myself to death trying to kill this thing over night. This is going to be a long fight and I really do have to pace myself better than I have been doing.

So thanks, Melina. I needed someone to slap me in the head and remind me that I really have to avoid exhaustion no matter how tempting it becomes.

Peace,

Harry

[mfh]

Harry, good for you for letting in the truth...that you need a break. It is all about balance....this is the pot calling the kettle black...believe me. But I am glad you will take a break.

Mary mfh

[widower]

Well said all around. I thought you had your kids to lean on even if not living at home/nearby, pardon if I misunderstood. I have no such person who I can even call or calls me. Basically no one who cares about my day to day life, or even week to week for the most part. Guess my point is be glad for family.