all photos on picnicwithants.com created by W. Holcombe, unless otherwise noted.
*all artwork and photos on Picnic with Ants created by W. Holcombe, unless otherwise noted.
When people think of grief they often think of death, they don’t think about grieving over other significant losses. Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.
The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance. Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next. This is no longer thought to be true. It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.
The
Often people think of acceptance as being okay with what happened. That is not the case. Most people never feel completely okay about a great loss. Acceptance is about accepting a new reality. This is the way life is now, it is the new norm, our lives have been forever changed and we must adjust accordingly. At first finding acceptance could be just having more good days than bad. We can never replace what has been lost. However, we must listen to our needs; we change, we evolve, we accept.
Once you have reached a good level of acceptance this doesn’t mean you can’t feel sad again. We are constantly reminded of our losses, when these reminders arise we can find ourselves feeling grief again. It’s at these times that our acceptance is most helpful. We may feel our losses, but we know there is life after.
I accepted my losses long ago, however, feelings of grief do come flooding back from time to time, especially if I lose something else. When one is chronically ill, we often find we lose more things as time goes on, even when those losses have nothing to do with our illness it can bring back all the emotions from our previous losses.
For example, in the last 2 years I’ve had a number of new losses. We had to move because my husband found a job in a new city. This move caused me to lose my home, my neighbors, more friends, and my doctors. Then a new diagnosis that causes more pain and loss of range of motion was another huge loss. The losses just seemed to keep adding up. I have more grief that I have to work through. Simply because we dealt with our previous losses does not mean our new losses hurt less, or that we don’t need to grieve. However, it does mean that we now know that acceptance will help us deal with our losses, and give us the ability to move on.
Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on. I don’t feel like I pity myself, but this hit me hard.
I’ve never said “Why me?”, I’ve always thought, “Why not me?”. However, I have had a lot of losses, and sometimes it gets to me. There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control. I’ve heard the same thing from other people who have chronic illnesses.
I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)
Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again. Something may happen to spark it. It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens…. Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time. Our grief is discounted. People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.
When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.
I recently started having seizures. This means, at least for a while, I am losing even more of my independence. My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me. Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room! This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.
There is really only a couple of things I long for all the time and those are things that cause me to feel guilt. Guilt also has a lot to do about letting go of loss. There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy. We shouldn’t feel guilty, we are sick. We can’t help that we can’t do things…but we still feel guilty. Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families. Personally, I feel a huge amount of guilt because I can’t cook. Hubby does so much, he is spread so thin, and he hates to cook. I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t. It’s too dangerous. It breaks my heart every time he has to cook dinner. I know how much he dreads doing it, and how hard it is for him. (but he really has become a pretty good cook)
Sometimes we are completely irrational for a while when we are grieving. For example, I can get so angry with people, I feel so many people abandoned me. I get so worked up about it and just want to scream. If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated. Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did. It’s my expectations that cause the pain. I don’t know the circumstances, and frankly at this point, it doesn’t matter. But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell. ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.
The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time. It’s okay to grieve what you have lost, over and over again, it’s natural. It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.
Remember, if you lost a loved one, you would always miss them. People do not think this is unusual, they do not think this is something we should completely get over. We lost huge parts of our lives, why are we expected to not miss it?
I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.
Greiving Chronic Illness and Injury – Infinite Losses
Experiences of loss and chronic sorrow in persons with severe chronic illness
Middle Range Theory of Chronic Sorrow
Starting on April 26th, I’ve been participating in a Chronic Pain/Illness Photography Project on Facebook. It is a closed group, but I wanted to share my photos here. By the way, if anyone wants to join the group, you can enter at any time. You can complete the previous projects if you would like, or you can start of where we are now. So far, it’s been a lot of fun, and a lot of support and camaraderie between between people who “get it”.
Many of these photos my long time readers may have seen. Some are photos of my artwork. (I can’t really get out and create many new photos right now since I’m recovering from hip replacement surgery.)
Day 1 – Hope
I made this for one of my doctors. She gives a lot of people hope. Unfortunately her treatment didn’t help me for long, but I always have hope, not necessarily for a cure…..Hope springs eternal.
Day 2 – Loss
This photo represents losing my hearing, and much of my balance due to one of my illnesses, Meniere’s Disease.
Fractured Ear
manipulated photo –
by w. holcombe
Day 3…Today.
Today I got my bandage off from my hip replacement, all looks good there! You can’t tell in the picture, but I have 6 stitches you can see, but mostly I’ve been glued together, it looks pretty cool.
I haven’t felt good today. The nerve in my back is acting up and my leg is in a lot of pain. I didn’t sleep much last night.
My monkey is guarding my hip that was just operated on so my dog or cat can sit on my lap. In this photo, Kiki is keeping me company. We rescued Kiki right when my hip/back started hurting. The doctors thought I’d just strained it when we moved. I had no idea I’d be hip replacement surgery just 7 months later because my femur head was collapsing because it was dying. Avascular Necrosis sucks. and mine was caused because of over use of prednisone. Doctors caused this disease by treating other diseases I have with too many steroids. If I’m lucky it won’t attack my other large joints. I’m 51, in the last 3 years, I’ve gotten 2 artificial ears (Cochlear Implants) and an artificial hip….no metal detectors for me!! haha.
I’m not complaining, honestly….it’s just the way it is.
and when my hip heals I’ll be able to walk!!
Woo Hoo!!
Day 5…Tool Kit.
(sorry I’m a day late, yesterday I had a 12 hour vertigo attack…yuck….happy I wasn’t alone, and the violent spinning didn’t last long, I spent most of the time in slow spins…it’s still miserable, but it could have been much worse!) I have a few tool kits, emergency kits…..I believe in being prepared. smile emoticon This is my medication kit.
Top left – all closed up and ready to go. Top right – top part is open, this is where we store my shots and things that are needed for that, and other little things. Plus my med list, with all meds I take listed, pharmacy, prescribing doctor…ect. I also have this list with me in my wallet too. (this includes supplements and everything) Bottom left – bottom part of container is open and top of pill bottles showing…..the “A”s stand for A.M. or Morning, “P” is P.M. or Evening, AP are pills to be taken in the Morning and Evening. If there is a number on the top then I take more than one. I line all of these up and fill up my pill boxes…you can see those on top of my medicine box Bottom Left. I have two morning boxes because I have to take 2 pills before breakfast and the rest after breakfast.
There’s more to keeping up with my meds, but that’s my medicine box. If I’m going out of town for more than a couple of days, I just grab my box. It really has helped me to stay on track, and know when I need to refill my meds, to buy more supplements….ect. It also helps me keep everything in one place. I love my medication kit.
So this is ONE of my tool kits.
Day 6….Acceptance.
One day after hearing me talk about how hard I had been fighting, a fellow Meniere’s patient told me that perhaps I should learn to walk with old Mr. Meniere’s instead of fighting him so much all the time. I had never even thought of that. I knew this disease had no cure, but it never occurred to me to not fight it tooth and nail. Suddenly it hit me, I had to accept it as part of me. I can’t get rid of it, some days may be better, but it will always be there. I accepted it. Once I did, things got much easier. I have a number of other illnesses, I’ve accepted them all. Meniere’s Disease was the hardest to accept….it comes packed with a lot of stuff….and mine is a very complicated case. (my doctors at Duke now say I have “more than Meniere’s”, they have no idea exactly what I have. I have a several complicated vestibular disorders.)
I drew this little doodle one day to show I think I’m perfect just the way I am.
Day 7 – Grieving:
This was a hard subject for me to figure out a photo for. I kept thinking of things more suited for loss. I wanted to show something that worked more for my grief over all the things I’ve lost…. I came across this entry in my journal, and a photo of a flower I took that I think work fairly well.
Here are the words on the journal page, I’m sure you can’t read them….
The tears have been shed.
The lines have been drawn.
Do we dare to cross.
Do we dare to dream again.
The tears have flowed line rivers down our face.
The mourning continues.
How do we hope again.
How do we believe?
I hope you enjoyed my photo journey so far….you may have learned a little about me along the way.
There are more to come!
Remember, if you would like to join me in this photography journey, come join the Facebook group, there’s a great group of people putting out some great work.
For months now…oh about six…I haven’t had the desire to do much. Blogging always helped me deal with things and I’ve found support here I never thought possible…but I just haven’t felt like it. I’ll think about blog posts, write them in my head, but then in the day I don’t get out my computer and get in touch with the world. I keep thinking I’m snapping out of it, and I am better…and I do think I’m pulling myself out of this depression now, but it was there sitting on my shoulder, whispering in my ear “What’s the point?”
It’s almost 6 months since Sandy died, and I’ve been consumed with grief and guilt. I know I don’t have a reason to feel guilty, but all the “should have, would have, could have” questions kept swimming around in my head. Those kind of questions don’t do any good at a time like this, but they’ve been surrounding me…all the “What if’s…”
I still expect to see her, and occasionally, out of the corner of my eye, I could swear she was there. I will feel her on the bed, and nothing is there. There have been times I could have sworn I heard her. (Now I wonder how many times I heard noises and thought they were her and they were something else?)
A lot of people would not understand this deep grief I feel for the loss of my dog. But she was more than just a dog to me…she was a constant companion for 19 years, my Baby Girl, my Sugar Plum Fairy…or as Stuart would call her, our “Stinky Dog”. No Sandy wasn’t a Stinky dog. It is a term of endearment from my husband, if he makes up a little song about you and it says you are stinky then he must love you dearly.
Because of this lack of understanding, and the feeling within myself that I shouldn’t feel like this still, I’ve been feeling very alone with these emotions. I hid a lot of it from Stuart for a while, but recently I haven’t been able to.
Two nights ago, I had a complete breakdown. Nothing sparked it, nothing. I was just about to doze off, and it started. I ended up crying (read sobbing uncontrollably) for almost two hours. Since then I have felt a release. I’m still crying over her, but something broke during that night of gut wrenching sobbing. I feel freer from the guilt than I have, I feel like I can move on….that doesn’t mean I’m forgetting my dearest Sandy Girl and everything she means to me, but I hope it means I can begin to see the sun again. I’m kicking that little guy off my shoulder, he will no longer be able to whisper those disparaging words to me. I love Sandy, and always will. I know I did the best I could for her, even if i do question that sometimes. More so, I question if the vet did the best she could have done for her, but I need to let that go too. (However, Max has a new vet now.)
I know she was 19 1/2. That’s amazing I’m told. But just days before she died she was chasing the cat, curling up with me, and just such a happy dog. I remember how every time she ate her dinner she wagged her tail the whole time. I need to think more about the good memories, and remove the shroud that has been over me holding in just the memories of her last days. Sandy brought me too much love to dwell on the tragedy of her death.
I won’t make promises that I will be here more often, but I think I will be….I need to get back to my friends, and managing my life, instead of allowing it to manage me.
(there may be many errors in this post, I just can’t read it again right now.)
Nineteen years ago today, my mother died.
I asked some people to share a memory they have of my mother….Here are some responses I received:
(from my best friend in High School) Boy, do I have memories. Let’s begin with that laugh. Especially when she laughed at television shows. And to this day, I remember her sneezes… the sound and the way she would let go of the steering wheel when she sneezed (because she didn’t want to jerk the car). The patience of a saint – especially since we would make such huge messes with Halloween decorations, fake fingernails and heaven knows the bedroom messes. And when I think about the times when we would get “that look.” You know, the one where she didn’t approve of something we did or said. She didn’t have to say a word… you knew exactly what she was thinking when she was perfectly quiet, but looking at you like you had lost your ever-loving mind. I REALLY enjoyed your mother.
(sister of my friend above) She was so funny, she always made me laugh. I can remember riding in the car with her dont remember where we were going or what we were doing but I can still remember seeing her as if we were riding in there right now!
(from a cousin) Oh darling Wendy … your mother was my second mom. When she lived in Greensboro before you were born, I would run away from home and go to her house to “live”. Of course it was just over the hill and little did I know she was standing on the porch watching for me to come over the hill and my mom was on our porch watching me climb the hill. I was never out of sight of them. What a team! I also remember the time when I was about 8 that I cut my own hair. I was so proud of myself. Needless to say we made a special trip to see your mom to get it “evened out”. LOL … guess I wasn’t the hairdresser I thought I was. I have lots of memories, but one more that I’ll share … you may remember living in Navy housing … a brick duplex. I can’t remember the name of the place but it was something park. I remember the “bug” truck coming around spraying for mosquitoes every evening. A lot of the kids would follow the truck to get in the cool mist. Your “mean” mom made us come inside … God bless her every day for having the sense to get us out of that poison.
(another dear friend from High School) I remember her sweet voice…..I sure called you enough and she always asked how I was……she was very patient with us because we would chat for some time…..back then, we didn’t have call waiting, only a busy signal….lol….
(a neighbor when I was growing up….one correction to his memory, my mother never had a rattle snake or any other poisonous snake, but she did have non-poisonous snakes) Wendy, I can remember growing up in Rock Bluff and thinking ” That lady must be crazy…she plays with snakes all the time.” She even had a pet rattlesnake! She wasn’t crazy at all as I got to know her better. She was a very kind and interesting person. I think she taught all the kids in the neighborhood how to handle snakes. Before we knew it we all were riding bikes with a snake in hand that we had caught. I thought of her and her snakes just a few days ago and wondered what ever happened to “Mrs. Calloway” but after reading this message i figured out that she passed while I was off at school.
She was a very kind and caring woman and I’m sure you miss her dearly! I’ll always have great memories of growing up in Rock Bluff and she was a big part of that!
(a sweet friend from High School – note when I asked for these memories I included my poem Memories of Mom and Me, this is what he refers to.) There is nothing more that I could say more elegantly than You. Just I Miss and Love Her to . Love You Wendy.
(a friend, but when my mother was alive I was not close to her, her sister and I were good friends, the three of us did some things together, but now I consider her a dear friend.) I remember she always seemed to be moving so fast like maybe she knew time was short. I remember thinking that when you lost her.Reminds me of a lightning bug in the summer. They have a glow that fades when the weather chills but if you have seen one just at the right moment it is never forgotten. I only met her a few times but she seemed to be so dedicated and devoted to you. A moment with a mother like that is a blessing. I am sure she is already cleaning a spot in heaven for all the people she loved.
(from my father) One of the best memory I have is when I med Flippy (my mother’s nickname), I was on the bus returning to Norfolk after a weekend at home. The bus stopped in Greensboro around midnight and I saw her getting on the bus the seat next to me was empty so I pretended to be asleep so she would sit there. Lucky me she did take that seat so not long after that we started talking, I was out of cigarettes so I ask her for one. Needless to say we didn’t sleep a bit on the bus from then to Norfolk. I got her phone number in Norfolk and called her later Monday, From that time on we fell in love and had a beautiful life together.
I’ve printed this poem before, but for those who missed it, or have forgotten, I’m including it again since I mentioned it above. This poem was written within the first few hours after my mother died, and was read at her funeral.
Memories of Mom and Me
-I look around me and all I see,
brings back memories of mom and me.
-The clouds in the sky; for hours we’d look,
picking out colors and shapes and books.
-Oh, look there’s a snap bug – remember him?
a play thing for me and mom again.
-A sea shell reminds me of a walk on the beach;
my diploma, a goal, she believed I could reach.
-Let’s go to a movie – her favorite E. T.
then go to the park and swing with me.
-An ice cream cone, a frog, a snake,
a Thanksgiving dinner we attempted to make.
-All the things around me I see,
bring back memories of mom and me.
-The people who loved her, I see in their eyes,
the love that she gave them was no surprise.
-She had a heart as big as the world
and the soul of a little girl.
-People who knew her will never forget,
because she affected everyone she met.
-Reminders of my mom are easy to see,
for there are parts of her inside of me.
by Wendy Calloway (Holcombe) June 23, 1993
Bonus Prompt: I keep writing because… Start your post with this sentence and, as the title says, keep writing. Free write for 15 minutes without stopping and see where it takes you.
(today’s original prompt was to post a Health Mascot. My dog Sandy is my mascot, but I couldn’t right about that today. She died April 18th, one day I’ll write about what a brave, and wonderful dog she was, how many health issues she had and over came, how she was as the vet often called her, “a Wonder Dog”. But not today.)
I keep writing because…recently I keep writing because I am determined to finish this challenge.
Actually, I’ve begun to wonder, why I keep writing. I know why I started, I know I have made some good contacts, friends, and my heart has been here. This blog has really helped me through some tough times when I felt no one else was listening. I’d write, just to write, and I found there were others out there, others who felt like I did, others who needed to have that contact too. Now, I’m hurting so much. I’ve had so much loss this past year. I felt I dealt with each one, I was strong, and positive. I was told I was the most positive person someone knew. I was proud of myself and how I was looking at life.
Then another diagnosis came earlier this year, and it has been hard to deal with. I couldn’t be that positive about it. I’m still a bit in shock from it, and simply not sure how to look on things positively. I’m larger than I’ve ever been, and the doctors just seem to be ignoring it, yet they tell me my triglycerides are high, and I’m borderline high blood pressure….ect….but they all say, don’t worry about the weight right now, you have to focus on this. I’m afraid I’m on my way to diabetes. I read all these books on nutrition, cut out soda, all High Fructose Corn Syrup, snack on nuts, cheese, fruit, veggies, eat at home more, cut out gluten….all these will help you lose weight…but I do all of that. so why can’t I lose weight? I need help, I’ve been to a nutritionist, no help. Most don’t even know what fructose intolerance is….I know more than most of the “professionals”. I’m grieving for the loss of what I used to be, what I used to look like. I now have no energy, can’t exercise because it will raise my CSF pressure, I can’t walk for long because of my hips, I can’t even enjoy sex.
I’m grieving because I lost everything that I gained early last year. I can’t drive again…but I have a cute little car. I can’t be a foster parent, even though we went through all the classes had all the references…everything…but no, I can’t because it wouldn’t be fair with my health issues to bring a child into this. And frankly I don’t think I’d pass the physical now.
and worst of all I lost my best friend, my little baby dog. A HUGE part of me died with her. I have to find a way to make that part live again. To put the pieces of my life back together, even if some of the pieces are missing
Why do I write? Because I need to.
But I also need to take a break.
I may write sporadically for a while to let you know what is going on, but I need to take a break from the internet. I won’t be reading other people’s blogs as much or commenting as much. I need to take some time to focus on me. I may write about it, I may not. right now I’m simply trying to figure out how to get past all the grief of things I’ve lost this year, or how to grieve without losing myself. I need to focus more on the spiritual side of me. I need to make some huge decisions. My husband and I need to grieve over our Sandy together, and figure out how we will carry on with our family now that such a huge part of it is gone. We may end up moving. As I said a lot of decisions….and a lot of needs.
But yes I will write again. Because I must.
End 15 minutes…plus a little to put in the photo. : )
Picnic with Ants 