I Have Fallen Down The Rabbit Hole

[mfh]

Anne, did you and Jim go to the bottom of the Grand Canyon...? That was on our list...one of those things that did not get done. We hiked up to altitudes a lot but never got down though we did visit the GC.

Mary

[enna]

Oh, my goodness NO, Mary. Hiking down to the bottom would have been too hard for both of us in the early 2000s. We were not in the physical shape that you'd need to take the mule ride! It's over nineteen miles down and I'm not too good with heights!

We made several trips during the first five years we were here in AZ. Stayed over several times at the lodge. It still is one of the most beautiful places I've been to. I've never been out of the country so I really can't compare. I just know that it always takes my breath away and it never, never compares to any photos you may see.

[mfh]

I remember walking along the edge for 3 hours both directions from the lodge and seeing the same view basically and that led me to how grand (large) it truly is. I do wish we had gone down when we were there. Friends have but alas!

[KarenK]

The first thing I want to know, Anne, is what you were doing up posting before 4 AM. None of my business, I know, but my excuse is excruciating pain in my left jaw. I look like a chipmunk. I had a filling replaced last Monday, but I have a tendency to get mouth infections despite all the brushing, etc. that I do. I finally broke down & took some pain meds(those I have nothing against taking) & will call the dentist on Monday.

My fellow hikers. Although I've lived in Arizona since 1956, I've never taken on the task of hiking Grand Canyon. In our younger, fitter days, we did a lot of wilderness hiking where you didn't see another soul. I've done some hiking in Zion and all over northern Az. I also like to go caving. Have been in Mammoth cave in Kentucky a couple of times and various others, including lava tubes. Would love to start again, but here's another case of the ol' body wouldn' make it.

My favorite place of all to visit is the Tetons. No hiking for me there. I was always on horseback. That was MANY years ago. I had been wanting to return for 50 years and so in 2008, we went there and Yellowstone. They say you can never go back. The scenery was still beautiful, but I was crushed at what Jackson had become. It's nothing more than downtown Scottsdale with a much nicer view. Who wants to pay $20 for a burger? Ron was just in awe, especially with Yellowstone, despite the fire damage. Most of the sightseeing was from the truck as Ron did not walk well due to a partial foot removal in 2000. Another STUPID medical mistake which further altered his lifestyle. Anyway, I finally had a chance to get my desire fulfilled.

I've also never been out of the country, but there are many beautiful places here. My daughter lives in south central Kentucky. It is beautiful & so green in the summer, but really humid.

Anne, your face looks so familiar to me. I thought maybe we had met, but you are way on the other side of the valley from me, so chances of that are slim. I noticed Liza & I are in the same place so maybe our paths have crossed.

Well, back to the recliner with the ice pack. No sleep for me!

Karen

[mfh]

Karen, I just came from the farmers market where my dog, Bentley, is always a hit. I discovered it is sidewalk sale day and lots of tourists in town for the local outdoor Shakespearean theatre so Bentley got his share of attention and I got my share of mosquitoes. I bought a home made thing from a friend and she swears by it as do others so we shall see...it is a lotion.

Bill and I hiked the Tetons. He loved the Tetons as did I...the views are spectacular. Lake Jenny, Snake River...but I would dread also to see the town today as it was pretty touristy back then.

Came home to get cool and back out to help at the brat sale for the food pantry. It is so humid you can almost see the air...sun is not out much so that helps but it has been one of those summers. Sounds like you have a lot in common with many of us here. It is a pretty amazing group of people...from everywhere from Norway to England to Alaska to many of the lower 48. All bound by loss and hope.

Back out to the brat sale

Mary

[enna]

To answer your question about why I was up so early - it happens I think more often to those who have lost loved ones. For many years during Jim’s illness I always had an ear tuned in to any stirring that might go on. After his death, I most always awaken around 3:30 am and move about the house - that is when I’ll come to the forum or pin for a while and then go back to bed. I always go back to sleep.

I am so sorry that you are having trouble with your jaw. That has to be so painful.

Yes, I live in the west valley. Out by Luke Air Force base and Litchfield Park. When I retired from teaching in IL I got right back into it in 1999 when we moved to AZ. My job has only been in the Litchfield Park School District until 2007 when I once again retired to care for my Jim. Our paths could have crossed if you were ever at ASU or if you attended workshops in education. I am not on any posters or billboards that I know of – I did have jury duty a few times here in AZ that brought me into Phoenix. As far as I know I am not pictured in any post office or on America’s Most Wanted!

Opps! I just remembered – you might have seen a picture of Jim and I when HOV posted an article I wrote on their web site. Who knows – I think I look like any grandmother who is 70 + seven months!

How are YOU doing? Are you resting? Are you going to any grief support groups or do you see a grief counselor? I did both and I can’t tell you how very helpful I found my HOV angels. Anne

ps - Mary has mosquitoes, gnats, and humidity in WI - we have sunny days and no humidity unless we are in the monsoon days!

[LarrysGirl]

Welcome Karen, I'm so sorry for the loss of your beloved husband. My Larry died resulting from medical errors and was passed from hospital to hospital, doctor to doctor, transplant coordinator and so on. He died the day before his 50th birthday. This was almost 8 yrs. ago. I found this site shortly thereafter and Marty and the group have supported me thru all the anguish, anger, betrayal of family and friends and my own physical health issues since his death. Like the quote, beside losing the person you loved with all your heart, you then have to deal with the financial difficulties, family issues, exhaustion, shock, while you'll hurting so bad you can't think. What faith I had went right out the window.

I'm still struggling so don't use me as an example of grieving well. His death devastated me and I have fought it every step of the way. I say this to you so that maybe it will help you. Let the grief be the grief, it will come with confusion, changes in everything about your daily living, waves of sadness and complete exhaustion. Try to flow with it, rather than against it, as I did. I've paid a terrible price with my health now and there is no one to care for me. There isn't anything easy about this process so please take care of you, sleep when you need to, ignore people when you need to. Don't try so hard, just be.

I know easier said than done. Hope sharing this with you will help a little, Deborah

[KarenK]

Thank you for your welcome, Deborah. I'm so sorry that you have lost Larry and are having health isuues precipitated by his loss. It seems so many of us have experienced the less than stellar perfomance of our medical "experts". In reality, we are no longer living,breathing human beings, only another number to be "crunched". In the first few days following Ron's death, I actually felt hurt that his Cardio of 10 years did not even bother to acknowledge his death. I got a sincere call & card from only the nurse who monitored his Carelink machine all those years. I did get one other card also from the staff @ MD Anderson where he was being treated. At the time, I thought surely more people cared, but they didn't and life is hard. I do remember that HOV called and offered assistance which was kind, but I declined.

I have few health issues but secondary to Ron's loss, is my daughters' health, followed by the never ending financial difficulties which a lot of us face. And of course, in addition to normal living expense and bills, I seem to get new "surprise" medical bills constantly, despite having insurance. Juggling has now become the name of that game.

No ASU for me, Anne, although I live nearby. My son recently graduated Summa Cum Laude from Scottsdale Community College with Associates in Science & Arts. He never got less than an "A" on any test in any subject. We were so very proud. Unfortunately we buried his father two days before graduation. He placed the invitation in his father's casket and said "I made it, Dad". He had only myself and his son to applaud. It was a solemn event for all of us. He planned to continue his education at ASU, but that is on hold now as he searches for a job to help me financially. The job market is very tough right now, so time will tell.

Nope, I don't think I've seen you on the "Wanted" posters, either. Is there something you're not telling us? LOL I think each of us is supposed to have a doppleganger, so maybe I saw yours.

I've not seen a counselor, but chose instead to join this group of peers. I live very near to a senior center with has meetings presented by HOV twice a month. I still plan to check those out.

Well, still trying to find sleep, but it is hiding. Will talk to you later, my friends.

Karen

[kayc]

Karen, I'm so sorry about your jaw! I just went to the dentist Wednesday, no fun! My long time dentist retired so I met a new one in the practice. I hope your pain will be easily taken care of!

Mary...I think Bentley got the better end of the deal (attention vs. mosquitos)!

The Tetons are so beautiful, I've always wanted to see them and never have. I once bought a print for a friend and had it custom matted and framed...it was one of his favorite places.

[mfh]

Yes, Kay....the mosquitoes do not seem to bother him but I do fluff him up before we come in the house in case they have found their way to his skin...his fur is sooooooooooo thick. I also use those awful meds for ticks and heartworm...he is currently chasing a kong around...it is one that is hollow with a weight on the bottom and a hole and i put his dinner in it and he has to work to get it and work he does...he is now searching the room in case he missed a piece of kibble. I also put him out to pee and then while he is gone, I hide food and tell him to find it and he spends about 20 minutes looking everywhere. If he stops, I repeat the command and he moves into another room with my prodding a bit.

[feralfae]

Sasha's fur is so thick I don't think the mosquitoes got to her, but we would tell her to shake off before she came in the house.

I hope you can get your daily busy times down to a couple of hours each day. I am learning that I still need whole days of peace, and I am just going to learn to listen better to the gentle voice telling me to rest, rest, rest.

thank you for your loving concern.

fae

[feralfae]

Dear Karen,

Congratulations, I know you must be so proud of your son. I hope you can negotiate on some of the medical bills. It was more than a year before I paid off the last of Doug's, and it felt so good to get them all paid.

Doug's oncologist and the staff at the clinic sent a lovely card when DOug left, and it meant a lot to me. I am sorry that the "care" ended so abruptly.

I am so sorry for all that you and your family are enduring. I sometimes think we could handle life a little easier if it were spread out more evenly between the pain and joy. This is certainly a sporadic, unpredictable, chaotic roller coaster we are on in this journey. I am so sorry yours is so complicated and many-faceted that it must be difficult to find a direction to turn for some peace and a moment of solace.

I have found Melatonin and St John's wort help me to sleep, and you will find what works best for you. Meditation is also very helpful for sleeping.

I am glad you are here with us. I know you will find a lot of healing through sharing here with others. If I have not said it yet to you, welcome to this wonderful fire Marty keeps going for us.

Blessings, and *<fairy dust>* for fun,

*<twinkles>*

fae

[mfh]

Sasha's fur is so thick I don't think the mosquitoes got to her, but we would tell her to shake off before she came in the house.

I hope you can get your daily busy times down to a couple of hours each day. I am learning that I still need whole days of peace, and I am just going to learn to listen better to the gentle voice telling me to rest, rest, rest.

thank you for your loving concern.

fae

I agree, fae. I was doing really well but screwed up this weekend...well today. Tomorrow is under control. And the week ahead is good. I canceled an all day art workshop. My car will be in the shop for two days...big 100,000 mile deal...local guy...honest. So I am good for the week. Back in charge. I do so need whole days or even two in a row to do what I need to do...which is just "to be".

[mfh]

we call it a roller coaster, a labyrinth, a journey and more. we refer to waves or tsunamis. whatever term we use...grief is not a straight line journey with an ending where we make our exits...it is indeed a roller coaster ride that takes us to forever.

i have ridden a lot of roller coasters in my youth and early adulthood. i know the feeling of riding them in

the dark and being totally unable to anticipate what lies ahead and being taken by surprise when the drops come.

i know about the steep and unexpected drops; the turns that make you feel as if you are going to fall to the earth and die; the changes in the world when the ride flips you upside-down causing all perspective to become lost.

and now i am on the roller coaster ride of my life. not only is it the longest ride but it is the most frightening. not only is it that i cannot see where the ride is taking me in this darkness but i have no clue what to expect moment to moment.

this is loss, death and grief...shocking, overwhelming, lonely, frightening. this is loss, death and grief...

confusing, difficult to comprehend, long lasting, exhausting, and truly endless...it is forever but over time we learn how to be prepared for the falls; negotiate the pain; trust the tears will subside; and accept the gifts it brings with it.

i used to like roller coasters. bill never did. i liked that out of control feeling; the feeling of seeing the world from a new perspective; the frightening drops and swift unexpected turns. it was called fun until i took the roller coaster ride of my life...the ride to and following Bill's death.

now i look at a roller coaster and see pain and fear and i never, ever, want to go on another roller coaster ride. this one, even with the gifts of grief, is quite enough.

mfh 2013

[KarenK]

Mary,

Your description of our "ride" is so accurate. It is so like the "ride" my daughter and all of us who love her are on. The diagnosis of Stage IV, the treatments, the "scanxiety" of waiting for the results of the next scan and the cycle repeats itself over & over until one day that ride becomes "our" ride. I can never forget the moment that Ron was being lowered into the ground. She was by my side & broke down crying, "Mama, mama, soon that will be me." I could only comfort her by telling her that it was not yet near her time, but in my heart, I died twice that day.

Karen

[mfh]

Oh, Karen, I also remember the moment Bill's casket was lowered into the ground but I did not have a daughter standing next to me saying she was next...I am so very sorry. Your post just took my breath away...I can not imagine the pain of that moment...it is beyond my imagination. I do hope your daughter's condition remains stable at the least and that healing can happen...and should that horrific day come when you must also bury your daughter...we will all be here to embrace you. But, like you, we all will hold hope that that day is far into the future. I am so sorry. That moment was hard enough without having those words whispered into your ear.

Mary

[feralfae]

Dear Mary,

Your roller coaster description is excellent!

Karen, right after Doug left, there were many issues, and then my own cauda equina emergency surgery. With all of that, I still cannot imagine the difficulty of the journey you are on right now, dear heart. I am so sorry that you are caught up in this terribly painful time. So much to try to sort and accept. I hope you can meditate a bit each day, and I have found that meditation in the morning is a calming and soothing alternative to, but not a replacement for, our morning prayers and breakfast together every day. But it helps me a lot. I often do a nature meditation, taking 10 minutes or so just to sit out on the patio and listen to the birds, wind, and watch the clouds move, while I focus on my breath. It is calming, and often, I can hear the quiet voice within me, helping me to shift my awareness of the day, to make the day easier for me as I begin to acknowledge and accept this being on my own. The shift, as you know, is beyond any fundamental change I have ever made, including having babies.

I envy you and Mary your time at the Grand Canyon: we seemed to be headed the other way, most all the time. Up. I still want to explore the Grand Canyon sometime, and for me, it is another incentive to get my body back in the best health I can -- at least to walk the rim the way you did, Mary.

All the laundry is folded and put away. The bed is made. The summer tires are (finally!) being put on next week, now that I am off the Alcan. Tomorrow, I am not going to service, but staying home to have a one-day retreat for myself, after a lot of chores and people today, but all good things. I just need to go visit my own center tomorrow. And meditate a few times, too.

Dear Karen, I hope you are asleep, and resting well. If you have not found this, here is a meditation I play on my laptop in my bedroom, but I think it can be played on any suitable device: http://www.healthjourneys.com/kaiser/healthfulSleep_flash.asp

If you are having trouble falling asleep, I have found this helps me most effectively.

Mary, I hope you have a peaceful day tomorrow. I hope to see all of you here tomorrow, somewhere, as we stroll through these strands of sharing, here around Marty's fire.

Good night, dear tribe,

*<twinkles>*

fae

[kayc]

We have indeed all been on a roller coaster ride, one that we can't see the turns and dips, we must just take them as they come. I can't say as I've enjoyed this ride that much, there has been a lot of stress and bad things over the last 8 years 3 months, but I'm still here, so I guess that's something.

[Guest babylady]

hi karen -- welcome to our forum. so sorry for your loss. i lost my husband of almost 42 years on 5/27/12 to a brain tumor. so sorry to hear about your daughter. i'm sending thoughts and prayers.

i can't seem to move on. i did a little better for a month or so -- then went back downhill about 3 months ago. my friend says "two steps forward -- 1 step backward". i feel like i've taken 5 steps backward. i cry constantly. this is the worst thing that's ever happened in my life.

i have anxiety attacks every day -- i wake up shaking -- afraid to face the day. i sleep as late as i can to make the day as short as possible.

some times i feel like i'm going crazy, but they tell me i'm not. everyone grieves differently and for different amounts of time.

i have several health problems -- nothing severe enough to kill me -- just enough to make me feel sick most of the time. i can't see a future for myself. i'm afraid of everything.

i'm sobbing as a write this.

all i can say is try and hang in there and keep visiting this forum. it's a great place and we all understand what each other is going through.

i'm almost 72 -- don't look my age -- or act it. i drive a mazda miata.

arlene

[KarenK]

Thank you, Arlene, for your warm welcome. I'm so sorry for the loss of your husband. I was in no way prepared for Ron's loss, but I suppose, in my heart, I knew it was coming. After reading the treatment info. on H&N cancer, I think we both knew his body could not withstand the treatments, especially after having gone through so many medical nightmares beforehand.

For now, I suppose I remain in the numbness/anger stage of it all. I rarely cry. There is no one to hear and no one to get an encouraging hug from.

I'm also sorry about your health problems. I know that being alone when not feeling well just makes it worse because the person who always comforted you is not nearby.

You mentioned on another post that you had lost your Mom after she had gotten Dementia. I too, "lost " my Mom in 2000 when she had a massive stroke. After the stroke, she was mobile, but fragile and had lost her ability to communicate. She could no longer read, write, or speak without gibberish. On rare occasions, it was as if a tiny light bulb came on and she would put three or four words together. This was a woman who had been the secretary to a U.S. Congressman. It was so very sad and it must have been hell on earth for her. She could never return home from the hospital & I had to place her in a beautiful care home in north Phoenix, where she lived until her death in 2006. It haunts me to remember her as I left each visit with her forlornly standing there saying "I go with you?" and my not being able to explain that I had to go to work. Or the weekends when I would bring her here, and she would sit in the kitchen with tears and say "I tupid". There was no way for me to let her know that she wasn't stupid, but that she had a stroke. I cannot imagine the mental angiush she must have endured all those years.

Although Ron's death is devastating to me, I suppose I must be gratelful that he did not suffer the long, agonizing mental pain I'm sure she had combined with the agonizing physical pain he was suffering. His greatest fear was to die in agony as his father(with cancer) had many years ago or to die insane connected to life support as his mother did after falling and becoming an instant quadruplegic. Ron had seen enough and been through enough in his lifetime and maybe his "God" understood and spared him that.

I try very hard to accept whatever comes my way. I do not expect much from life. I have simply learned that happiness to any extent is not part of my agenda and I take it from there.

Karen

[kayc]

Karen,

I can relate as my mom has Dementia and is in a care facility. She knows her brain isn't right and it's so hard for her. I try to reassure her, but...

It is hard. I know the gov't would like us to take care of our parents, but when you have to work and there's none to watch them, what can you do? It's too much for any one person.

[KarenK]

I have been sitting here trying to formulate these thoughts without writing a book, as I know my posts are sometimes lengthy.

Late last night, as I sat and read some of the posts, I realized how selfish I have been. Each of us have suffered a horrific loss, but ALL of you come to me with love, concern, comfort, advice & warm "cyber" hugs, while I can offer little in return except anger ,sadness, & "woe is me". There are so many less fortunate right now than I am. I think of Shannon, fighting for her life without the love of her life, and so many with health problems, etc., while I have my health, a roof over my head,(for the moment, anyway), food in my fridge, and part of my family nearby, and I am ashamed.

I realized that one of the most important things I am missing is not someone to care for me, but someone or something that needs MY HELP. For so many years, I had a purpose. That purpose was to love, comfort, share with, and care for Ron. Obviously, Ron no longer needs me and when he left, he took my purpose with him.

I have a special friend on CSN named Craig, who, among other things, is a very fine writer. He writes from the heart to try and help cancer patients on their journey through this devastating disease. He recently found out that one of his writings is finally going to be published in a medical magazine and the very next day found out that his nine year batlle with cancer is starting again for the fourth time. Please say a prayer for my friend.

One of his topics is "Repurposing Our Lives". Cancer changes each of us, whether we are a patient or a caregiver, just as a loss like ours has done. We all have to find that new purpose in our lives.

I am going to get out of this house and start looking for my new purpose. Ron would not want me to sit here & "rot away". I noticed on the HOV news from Marty that there is a thrift store not far away that could use some donations. I'm going to start by taking some things there. I don't have money, but perhaps a couple of extra helping hands would be welcome. At least I would feel that I am contributing something to some else's welfare.

Hope everyone has a good day.

Karen

[kayc]

Karen,

Please don't feel ashamed...a new griever cannot handle anything but the grief put in front of them, and that in itself is a tall order. There will come a day you will be able to comfort others with the comfort you have received, but right now it must feel like all you can muster just to survive the day. Yes, there are always those worse off, but that does little to assuage our broken hearts while we're hurting.

It does help to find some sense of purpose...for many of us that has been our hardest task.

[MartyT]

Karen, my dear, I hope you will heed the wise words that our precious Kay has shared with you. After all, you are barely two months into this grief journey of yours, and to expect so much of yourself this early in the process may be asking too much of yourself. My concern is that ~ if you're like most of us ~ when we're hit with a significant loss, the full force of grief usually does not "hit" until all of the initial shock and disbelief fall away, and we are confronted with the full reality of all that we have lost and how much our lives have changed. Of course the time this takes to happen varies with every individual ~ Still, I'm not sure this has happened yet for you (that is, I'm not sure you're completely past that initial period of shock and disbelief), and to commit yourself before you've had a chance to "sit" with your grief and experience all the thoughts and feelings and reactions one would normally expect ~ Well, I'm just concerned for you. In addition, you are faced with so much uncertainty surrounding your daughter's health status, with no way of knowing what lies ahead for both of you. Of course we all hope and pray that everything will be fine ~ but it may well be that the next "purpose" in your life will be assisting in your daughter's care.

I certainly don't mean to discourage you ~ You know yourself far better than we do. I just want to give you permission to slow down and take your time before you commit to more than you're able to manage. This is a journey you've never been on before, and don't underestimate the work and energy you will need to bring to the tasks of mourning. Your being here with us, sharing what you're experiencing and responding to other members is plenty to have on your plate right now. Gathering some items to donate to HOV's thrift shop sounds manageable and probably will help you to feel a sense of accomplishment ~ but it may be too early in your grief journey to be thinking about volunteering there.

As for feeling ashamed of being "selfish," if there is ever a time in your life when you are entitled to be selfish it is now ~ and I hope you will discard your "shame" and ditch that label of "selfish" too. I see it as focusing on yourself and taking care of you, and that, my dear, is your first and most important responsibility right now. Look at it this way: If you don't take good care of you, who will?

Finally, you can rest assured that your special friend will be in our thoughts and prayers ♥

[mfh]

Karen, I was just over telling Anne that from day 1 she was giving to all who are here because she shared her own story and pain and that helps others who are not used to sharing pain and gives them permission to do that. I would think that in the first 6 months at least, I was pretty oblivious to reaching out to anyone. I did hold myself to some high expectations and Marty et al reminded me as she just reminded you that you are most likely not totally aware of all that Ron's death means and to go easy on yourself. Donating is fine. Volunteering...you will need your energy to deal with each day. It is indeed a long and tedious and exhausting journey. You can be as selfish as you want...I don't call it selfish. I call it survival or self care or self compassion and right now that is your task....reaching out here will come in time...we see your heart and love and you reach out just by journeying with us and caring. So time to put the shame aside and just take care of you and allow those of us who have been here for a lot longer to care for you. Please take Marty's message to heart. She knows of what she speaks...trust me on that one.

Mary