Another friend with metastatic breast cancer has died. Liz and I followed one another on Twitter. I never met her; I never spoke to her. We had several exchanges online. I always read what she posted. Now there will be none of those things.
If you are superstitious, one superstition is bad things happen in groups of 3. Sure enough, this is the third death from the online community in the last couple of months who has died from metastatic cancer. Only one was expected. The other two were shocking. All were deeply saddening. There have been more, but I haven’t had an online relationship with them. Dying is a constant in the metastatic world.
Grief can be a lonely place.
Do I cut myself off from metastatic cancer havers so I don’t have to experience more grief? No, I would not like it one bit if that happened to me. I feel like it happens enough. Plus, I’m just not wired that way. I think very few of us are and these are our sociopaths who have little affect and no ability to feel compassion or empathy.
I’d describe the MBC community as fairly tight. There are a couple of women with MBC I know here at home. I bump into one from time to time and we have a chance to catch up with one another. I have heard of a few online cliques but haven’t experienced these myself. If a time comes when I do, I’m honestly not going to care because I am well beyond the parameters of middle school. I am liked for just being myself. I have found a core group of women who are equally as real.
The online MBC community is nothing short of amazing. Some educate and share their cancer knowledge. Others listen and offer support and empathy. They are role models. We can lean on one another. All are leaders in their own way. I consider these people friends. We can’t just put up walls when someone dies. This is a time to be vulnerable and open ourselves to others who are also grieving.
Please do not make these comments:
• At least she is not in pain. Do not use any “at least” comments. At the moment, there is no bright side.
• Heaven needed one more angel. Honestly, I’ll puke on anyone who says this to me.
• Someday, you’ll move forward. Today isn’t that day so keep your mouth shut.
• Everything happens for a reason. This isn’t comforting.
• Everyone dies. What is the point here?
Supportive comments for someone grieving:
• I’m so sorry for your loss. I’m sorry this has happened. Both of these express sorrow.
• Sharing a memory brings a specific story of a lost loved one that the bereaved may not have heard.
• Offer the person space to talk.
• Ask if there’s anything they need.
• Sometimes actions are better than words. Hugs are their own language.
We are capable of feeling great grief and great love. All of us fall somewhere on the spectrum of grief and love. I feel deeply so I experience both of these intensely. I will experience grief in whatever fashion it presents itself. It’s the trade-off for experiencing moments of joy and love, laughter and smiles, happiness and delight. I have had enough grief for a while. Bring on a little happiness.
“What is a grief journal? It’s a journal where you’re free to write exactly what you’re feeling. You can share memories, feelings, anger, or just daily ramblings. As long as you’re writing, you’re getting those emotions on the page.”
Ultimately, writing is healing. Deep within writing about grief is hope. Grief becomes healing and heling transforms into hope. I’ve found it is a long process.
I think everyone personalizes how they use a grief journal because grief is so personal. It isn’t supposed to be a happy place. I think almost every time I wrote in mine I cried. At some point, the tears lessened. I could read what I wrote and reflect on it without tears.
A working definition isn’t too important to me. My sister and I took a grief class the summer after our mom died the previous spring. I think the grief journal was born there. It appeals to my writing side.
These are snippets from my grief journal. If they don’t fit your definition, you do you.
Many of my entries at the beginning look the same.
Dear Sweet Mom,
I love you and miss you. It’s still too hard for me to put all my feelings down on paper.
Love, Kristie xoxo
Gradually, the notes took on more of a conversational tone. It was like I was writing a letter to Mom. Grief was still present, but it was slowly being replaced by normal life and small doses of hope. If I couldn’t speak to her, this was the next best thing. Somehow I expected the words to lift off the page and swirl the night stars until they reached he in heaven.
Dear Sweet Mom,
I brought in a few of the tomatoes the other day and ate the first one as part of a caprese salad. It tasted good and I so wish you could have had some. Thank you for getting me going on tomatoes and teaching me all about them.
I made rhubarb crunch today too. Very good. I ate a piece for you.
Love, Kristie xoxo
Dear Sweet Mom,
I’m feeling sad and empty tonight. Just keep picturing you at Oak Park this time last year, knowing how hard things were getting for you, and how I was losing you more each day. The next month is going to be rough on both of us. I’m remembering the sad and bad times a lot. I was to replace those images and memories with all the happy ones, but I’m not very successful. Maybe I’ll try to think of some good Door County memories.
Love, Kristie xoxo
Dear Sweet Mom,
It’s been a year. I just can’t believe it and I don’t know what it all means. It doesn’t make me any less sad or you any less gone. All it means is al the firsts for the first year are over.
Last night I dreamed you called me on the phone. After I picked up and said, “Hello,” you said, “Kristie, it’s Mom.” Your voice was clear as a bell. It startled me out of sleep. Unfortunately, that dream was over and I couldn’t get back to sleep. What does it mean? I will keep looking for signs.
The last time I wrote in it was 7/28/16. Entries became father and farther apart. Focusing on the grief wasn’t what I needed. I had hope that life was returning to something more normal.
The intersection of grief and hope is hard to explain. Grief doesn’t have to disappear. We all have those moments where it shows up unexpectedly. Hope still floats around this atmosphere waiting for the grief to settle so you can reclaim a bit of that needed hope.
I believe we are not given grief without a way to work with it. Hope is how we work with some of the grief we feel. Not all of it. Sometimes the only way to get through something is to go through it and experience it, tears and fears and all. Other times those pieces of hope are enough to cling to in tough moments.
Poetry is another way to combine grief and hope. This poem is dedicated to my friend Lori Burwell who transitioned suddenly on October 7, 2021.
I miss both of my parents every day. My dad died 25 years ago; my mom has been gone 8 years. Twenty-five years is a long time. I was able to make 17 more years of memories with my mom. Memories with my dad haven’t faded so much as they are farther back. More effort is required to revisit them.
I have hit the age where more people in my age group have lost a parent. We share our hurt. I also know people who have both parents still living and they don’t see or talk to them very often. I don’t wish them ill will. I’m thrilled they are still alive. It’s wonderful these friends and acquaintances don’t know the searing pain of losing a parent. They don’t live with grief that runs deep and long. But still, I feel it’s unfair that I’ve lost both. My parents were older. They developed health problems. They died. We all know life isn’t fair.
A while back, I was wishing for something from my dad. My mom pops up often in dreams and waking memories. I don’t get a lot of that from my dad. Time passed factors into it. I put it out there that I wanted to hear from him. In dreams, or signs, or messages, or something. Anything. I miss him a great deal. I don’t think it’s said enough how much adults still need parental love.
One of my routines before crawling into bed is to read for a few minutes. I settled one night into an oak rocker in my bedroom that I picked up at an estate sale. It’s solidly made and has a simple patterned upholstered seat and back. Soft lighting provided by a Tiffany like lamp with shades of blues and greens lit the corner of my bedroom. I rocked gently and read.
At one point, I turned my head to the left toward the table where the lamp sat.
And there he was.
Not as a ghost, hallucination, or in any human form. I saw his handwriting poking out from a small stack of treasures that has sat there between five to ten years.
It had been there every night. His handwriting jumped out this night when I needed a sign.
It was a 3 x 5 notecard that had completely browned over time. My father served in WWII. This could have fit in his wallet but I’m not sure it did because it wasn’t bent. If not in his wallet, it was likely in a desk drawer or the top drawer in the chest where a lot of papers and some jewelry were kept. I’m not sure where I discovered it. I felt it was important and I took it. Clearly, I also forgot about it, but here it was to remind me when I needed it. It was one of those moments mixed with smiles and a slow but steady flow of tears. He had copied a quote from Winston Churchill about wartime living on the notecard.
I pulled the notecard out with my thumb and index finger like one would in a magic trick where you picked any card from cards splayed in front of you like a fan. I read it slowly as if it were a riddle, for that was what it felt to me. The word defiance hit me stronger than the others. I don’t want to dwell in the battle imagery that many who live with cancer use and just as many find cringeworthy. But hey, there it was staring at me in the face. These words were about war, not cancer. Exceptions must be made. If anyone has applied them to cancer, it’s me.
Allow me to say I don’t feel I am in defeat. I feel beat up. I feel constantly up against some stupid cancer or noncancer thing. I feel like I can’t get through to the very people working to keep me alive. I feel exhausted and that I never can catch a break. I feel defiant though and unwilling to give an inch more to cancer.
As far as the other words are concerned, I’m always searching for resolution. Mainly, I search at my oncology appointments through time with my oncologist and all the tests and treatments I do. But I look for answers in so many places. I read articles. I follow leads on the internet. I make note of studies others are in that may be of some benefit to me. There are group chats. I talk to and message friends. Virtual conferences are attended such as the SABCS (San Antonio Breast Cancer Symposium) and LBBC (Living Beyond Breast Cancer). Occasionally, I’ll listen to a podcast. To be honest, it all overwhelms me. My days can’t be only about metastatic breast cancer.
Magnanimity and good will are always good guiding words. Generosity and compassion should never be overlooked. We need both in our world now more than ever.
I set the card back on the side table and shuffled through what else was in the small stack. There was a prayer book with a daily reflection I’d given my mom one year for her birthday. I found some of my dad’s business cards and his resumé. There is a grief journal I started after my mom died. The journal deserves a separate post of its own.
I also found the last birthday card I gave my dad along with more of those smiles and loving tears.
The middle section jumped out to me where it read he knew in his heart that I’d find a way. I realize I chose the card, but it was chosen based on who he was. I always knew my dad’s belief in me was present and constant whether whatever I did was big or small. I’m sure it’s why I chose this particular card. He knew I’d do well on tests. He thought it was great I played tennis. He supported all my band activities. He happily shuttled me back and forth from college to home on weekends. My dad knew I’d find a way. As evidenced on this card, even as a young adult the idea of finding a way was developing, perhaps just a seed of the oak tree pictured on the card. I would have to find my way a lot sooner without him.
A few weeks later he came to me again, this time in a dream. I was at my grandma’s farmhouse in the kitchen, milling around where the cookie jar was kept. Ah, that cookie jar. My grandma, mom, and dad were all in the dining room. Dad called for me to come into the living room. As I got closer to the adjoining doorway, everything went bright white and I couldn’t see. I knew my dad was going to hug me. I kept inching forward into the blinding light. Eventually, I shuffled into him and we hugged. I felt warm all over and felt a tight squeeze of his arms around me. I couldn’t see anything. Then I was jolted awake. I always wake up too soon. I am convinced it was a real hug from him. Make of that what you will.
I got my sign, my message, my something. I received several. Thanks, Dad.
Taxol is a chemotherapy drug that causes hair loss. It occurs somewhere 2-4 weeks after an initial dose. After so many drugs, after losing my hair twice previously, and even while I used a cold cap, my naiveté continues to surprise me. I got good results while on Doxil. I hoped, no – I expected it to continue when I switched to Taxol. I had passed the two-week mark on the new drug and was doing okay.
Then the three-week mark hit. More hair came out in with my morning comb out than I had experienced. How odd. Then with the night combing. Hmmm. I started documenting it. The pattern continued and got worse and worse with each day. It was matted in the morning when I woke up and that never had happened. As gently as I combed, out more would come. I commented to a friend that at this pace I wouldn’t have any hair left by the end of January. The writing was on the wall. Hair was on my clothes, on the floor, and in my food. Hundreds of strands in my comb and on the bathroom counter became thousands. I filled waste baskets.
Losing hair is a visual hopelessness. There wasn’t anything I could do to make it better.
This pattern continued steadily for three weeks. I stabilized by February with noticeable damage done to my hairstyle. There were bare patches on my crown, in the back, and on the sides toward the front. Not much was left if I were to pull it back into a ponytail or put it up. It was flat, unhealthy, and unattractive looking. I looked sick. I loved donning a hat for outside winter fun. I was skilled at arranging it just so to pull off a normal looking photograph taken from the front. People said I look great! People lied.
Some people photograph the clumps of hair and growing bald areas. I’ve seen the pictures. My personal moments will haunt me and I don’t need a visual reminder. No one needs to see my hair to make it real for them.
So, what good is the cold cap? Note it worked impressively well while on Doxil, not so well on Taxol. The recommendation is to continue because it can speed regrowth. Other users (and the nurses too) do confirm that regrowth is faster. Of course, that’s the recommendation because the company makes money with continued use. The thing is I’ve paid for my maximum capping sessions and anything over that is now free. I still have to endure the discomfort and extra time involved. Happily, I have seen some hints of regrowth from the top. The sides might be filling in, but this is even slower. I’ll stick with it.
One bright side is the first ten minutes with the cap is more durable. It’s no longer the worse possible feeling I can imagine. It’s no big deal. It almost feels refreshing and I kind of like it. It all goes quickly like clockwork. After 19 capping sessions, this is my norm.
I wonder at times how much more can I take. Apparently, there’s always more. I loved having hair again. I didn’t quite like having it so long, but that isn’t a problem anymore. Others’ comments that I have cute wigs are true. These comments also minimize a loss they’ve never experienced.
I just keep losing and I don’t know how this is my life.
I should be grateful I haven’t reached my breaking point. Should be. I think I’ve been broken repeatedly. My breaking point keeps getting reset to something more devastating. I should be glad it’s “only” hair. Again, should be. I am, but it’s my hair. Without it, sensitive comments absorb more quickly though my scalp and go straight to my emotions. I should remember it will grow back. Another should. I was without it for years the last time. This is now one more uncertainty in my life. Yes, I have bigger worries. I know I don’t need it, and I know others have been where I am, but I still need to hear I am heard. I need that ounce of validation that my tears and grief are validated. I need a little grace in my world where I don’t feel much.
I felt anger with this development of noticeable hair loss. I felt angry that I looked sick. I felt angry that the cold cap hasn’t worked better for me. I felt angry this happened again. And I still feel angry at comments that have come and will come from others. To be blunt, there is understandable ignorance from those who have never experienced chemo induced hair loss. I carry the burden of a teacher in how I choose to respond to well intentioned, yet ignorant, comments such as: It’s just hair. It will grow back. You have a wig. You look good. I know all this. It’s just hair and it’s not. I do look good in my wigs. It doesn’t mean I want to wear them. A part of me would LOVE to request that people forego coloring their hair. This raised such distress early on in the coronavirus lockdown. Maybe everyone I know needs to shave their head and keep shaving it to experience an inkling of what is one of the most emotional side effects from chemotherapy. Would those actions help me? Mmmmm . . . maybe.
Maybe, maybe, maybe.
People would sooner have regular colonoscopies.
There is such attachment to our outward appearance. Even to temporarily let go of that with what would be a selfish suggestion on my part would provoke instant emotional resistance at the possibility of not having hair for a relatively short period of time. No, I don’t expect anyone to embrace gray or baldness to prove anything to me. It still would not be the same. Just my ego acting out.
At this point in May, I’ve lost about 75% of my hair. I’ve opted for a short cut to take off the stringy strands that made me look sick and unhealthy. It’s more of an even cut and will support a better look as hair continues to fill in. I also colored it on my own a few days after the cut. Both are not to be done while cold capping because of the added stress it puts on the follicles. Big shock that I went against recommendations. It just isn’t realistic for me not to ever cut or color it again because treatment isn’t going to end for me.
That’s the update. I am a supporter of using a cold cap if it is an option for you. It digressed and wrote a fair bit about my hair and hair loss. They go hand in hand. The first photo was before Taxol took a toll. The middle photo doesn’t quite do justice to my daily look. Even in this photo, I was finger styling it and moving more of it to the front so it looked like I had more. I feel very comfortable with my short cut and I’m happy enough with this look.
We all need support when we’re down, upset, or frustrated. It can be an offer to talk where one person truly listens. It can be an empathetic comment where there is no attempt to fix anything. Sometimes an emoji is enough to convey what words miss. I find regular texts from a couple friends reassuring that someone cares. What words are supportive? I hear you. You are not alone.
I often read about someone’s cancer experience in terms of before and after cancer. I also often read that there is no after for those living with metastatic breast cancer because we will always be in treatment. Extreme outliers push what is possible. They keep living with cancer year after year. People living with metastatic disease need words that aren’t in terms of before or after.
I prefer during, now, and next.
A Brief Look at Before Cancer
Before cancer was a golden time of no worries. People lived with no physical limitations. They had job security and careers stretching out ahead of them. Dreams were plentiful and ranged from travel, starting families, professional accomplishments, and personal goals. Normal life expectancies were part of the plan. Life was busy with many friends. Five-year plans were achievable and plans were made for the future without doubting the future.
I felt as others did.
Life was good then. I knew it, but I didn’t realize how good I had it.
I didn’t know the meaning of a bad hair day.
I liked October.
Thoughts About After Cancer
For many, after cancer means getting back to normal, returning to work, growing hair, and putting cancer forever in the past. Survivors post side-by-side photos of their cancer days when they were bald next to photos of a year post treatment when they feel they are once and for all done with cancer where it no longer looks like they ever had cancer.
Life after cancer may mean changes in diet and exercise. Maybe there are new considerations for returning to work or career changes. Life may bring changes in income, changes in health insurance, and changes with how bodies look. There are some who reclaim their past and work to make their life after cancer as much like their before cancer life as possible. For some it means continued support groups, giving back to cancer organizations, and participating in other ways to make a difference in the cancer community.
October becomes a month to celebrate the wonderful and misleading world of awareness. A few reminisce about their cancer days almost as if they were remembering summer camp or a crazy story from high school. I figure it’s easy to reminisce when you are on the other side and treatment is done. There are plenty who see cancer far in their past and it doesn’t affect day-to-day life one bit.
Before cancer is only a memory. After cancer is in the present. After cancer is the future.
It’s a strong possibility I would feel the same if I were in their shoes, but I’m not. I don’t know what it’s like to be “cancer free” as they say. I think it’s the same as how someone without cancer doesn’t know what it’s like for someone with cancer. Those of us with cancer don’t even completely understand what it’s like for another person with cancer. We come close. We can identify and empathize with emotional and physical pain. I have been fortunate to connect with many who write exactly what I feel. I think of these people as my friends even though I haven’t met them.
After cancer means returning to normal or the so called new normal. In my opinion there is no normal or new normal. I describe my life as a new abnormal and wrote about it in an earlier post you can read here.
It’s hard for me to remember my before cancer days. It feels like another lifetime. I have grieved those days as I would a person. Grief resurfaces with some memories of the past. My eyes water lately when looking at old photos. Who was that person that used to be me? It was someone with dreams that have been shattered.
Even photos from childhood cause some sadness.
Teaching was a huge part of my adult life. I am so far away from those days now that it’s hard to remember elements that were driving forces. So many faces have changed where I taught.
Even some memories of my mom, dad, and grandma have drifted almost too far away. I hate that and I miss them.
What was it like to have boundless energy? What was it like to see my future?
I can’t remember.
The world of before is out of reach.
During, Now, and Next
Good words I use to mark time are during, now, and next.
During is like an umbrella held over now and next. It’s all the time from diagnosis onward. It includes a lot of enduring cancer related life like scans, labs, other tests, office visits, treatments, and waiting. Too much time is filled with enduring cancer when treatment days, side effects, and large chunks of time filled with anxieties or sadness take hold. Instead of after cancer I have an undefined during.
During cancer isn’t all bad. I still taught for four years during cancer. Many are able to keep working. I still live independently. I am still active. I still take vacations (just not presently). Many do all these things, too. Many retire and tell others they finally get to do whatever they want because there is no schedule to keep or boss in charge. I don’t do whatever I want because my health can get in the way, but I try. Living well while living with cancer is possible.
During cancer is a time where nothing ever lasts. I’ve lived in this time labeled during so long that I feel like my life before cancer was lived by an entirely different person.
At my core I still have the same values and main personality traits. Cancer has exaggerated some of them. I have more anxieties and more sensitivities. I am quick to cry. Heck, I’ve cried writing this post. I am more intense and more driven which I possibly could attribute to aging and becoming more confident. I put more emphasis on hope and kindness. I can still crack a joke in the midst of personal misery.
Now is an excellent word. Living in the now enables me to focus on the present moment. I appreciate my wildflowers. I listen to the rumble of thunder. I walk barefoot in the grass. I drink refreshing pink lemonade. Now is where I find joy, hope, and positivity. I work hard not to let anything crush my sense of now. I try to enjoy each day. There is always something. Waking up to greet a new day and gratefully closing my eyes to dream at night are bookends for every day.
Now is the present. Savoring the moment when moments are good stretch out my enjoyment. I savor my breakfast. I savor walks in nature when I’m surrounded by trees and see the sun shining though the leaves. I savor gentle breezes on my skin. I savor laughing and feeling loved. None of these moments can be bottled. They can be replicated as often as possible. Many moments living in the now make up a day. It’s where I live when days are good. Those days add up. I am very lucky for the now I have carved out and the now where I live. Now is all I really have. It’s all any of us truly have.
Living my life involves multiple treatment plans. The word next comes into play when I switch to the next treatment. It also applies to my next cycle of whatever current drug I’m receiving. My treatment visits number into the hundreds. Life is filled with more worries and anxieties. I worry I’ll never again have hair when I’m without it. I worry I’ll soon lose it when I have it. It’s one of my big current worries.
Next is my future. I think about next week or next month. I think about my next piece of writing. I think about what I want to work on next with my trainer and my next physical goal. I have goals for next year. I cautiously make plans knowing they may change. I make them with the intention they will happen. I even think long term because that is energy I want the universe to have. I envision a positive and healthy future because I’m not willing to give up dreaming of my future. It may not be the future I planned before cancer, but it is mine now.
I apologize if this all sounds a bit disjointed. These markers in time are fluid and won’t hold still. Referring to words as nouns that usually function as other parts of speech may not come across in the way I hope they do. Living during metastatic breast cancer means living in an ongoing state of flux. I need sets of words to help mark different spots in the spaces where I live. During, now, and next are working well for me.
“There was a baby bird in your tree we took down,” explained the tree man, pointing to the ground at the side of my house. “It’s there in its nest.”
Tucked under the downspout and against the bricks was a nest that held a rather large, fluffy, baby bird. Its home had vanished into the tree chipper, its mother wouldn’t know where to find it, and night was falling. Thunder grumbled softly and the sky flashed Morse code that a storm was near. Humidity hung in the air, thick and uncomfortably sticky.
“What should I do with it?” I felt I should know but I didn’t.
It was clear the baby was a robin. It’s grayish-brown feathers filled the nest entirely, but it still looked too young to fly. Its little beak opened and closed expecting food.
“You can just leave it there for the night,” said the man. I sensed the attitude was to leave it in nature as close to its original home as possible.
I knew instantly I was not leaving this motherless, little baby robin alone on the ground where it was completely helpless and unprotected. It wouldn’t survive the night. Should I take it inside with me? Was there someplace else I could leave it outside? Even though I hadn’t held the chainsaw, I still had destroyed its home. Mama robin wouldn’t find it.
Ilene is my neighbor who also very conveniently is a vet. She was outside trying to get her lawn mowed before it stormed. Lightning flickered more regularly in the sky. I couldn’t wait much longer. It was getting dark and the baby bird still had nowhere to spend the night.
“Ilene! Do you have a second?” I shouted above the motor and motioned in my direction. She stopped the mower. “I have a baby bird here.”
We talked over the options. No, she could not take it. They didn’t work with rescue animals at her clinic. There was a vet clinic off the beltline on Rimrock Road that was open twenty-four hours and took wild animals. That was a possibility. Finally, we decided it was best to put the bird and its nest cradled on top of an abandoned nest in a bush to the side of my house. It had a better chance there than on the ground. With flashlight in hand, we safely nestled it in.
My next job was to dig up a couple of worms for it and try to feed it. Sweat rolled down my face and back. I couldn’t see where I was digging. Multiple holes were appearing in my garden and there was not a worm to be seen. Why was it so hard to find a dang worm? This was crazy. I was crazy.
After about ten minutes I abandoned the worm quest. Plan D was now in motion. I would take the bird to the vet clinic.
Flashlight in hand, I retrieved the baby robin, put it in a box, and placed it on the floor on the passenger side of the car. Tired and sweaty, off I went, hoping the thunderstorm wouldn’t hit until I returned home. My mother’s voice spoke quietly in my head, “Don’t go. Stay in for the night. You’ll get wet.” But my mother wasn’t around anymore. It was just shy of a month since she died, but she was still there chattering away at me.
I didn’t mind.
Keep in mind, I also didn’t listen.
I knew my actions were some type of response to feeling alone and a deep need to fix the unfixable.
Baby bird made some sounds. “Tweet, tweet.” What was it saying? I didn’t speak bird but decided to tweet back anyway. “Tweet, tweet, tweet,” I said.
The sky let loose torrents of water which made it tough to see the road. It was one of those downpours where you feel like you’re continuously under a waterfall and the windshield wipers can’t keep up. All this felt so insane on several levels. Tweeting back to the little bird was somehow comforting. We tweeted back and forth for the rest of the trip until I found the clinic.
I covered my little bird with my coat and ran the box into the clinic. I suspiciously eyed an orange cat that was sitting on a bench just inside the door licking its paw. A woman at the front desk smiled and took the bird to the back room. That was it, I was done. I headed back out into the stormy night.
When I got back and buckled up in my car, I realized I hadn’t said good-bye to my bird.
Yep, I heard it.
Somehow that little animal had become mine in a time span of less than an hour. Maybe it was mine the moment I saw it on the ground . . . I don’t know. But I did know I had to dash back through the rain into the clinic so I could say good-bye.
I’ve been this way for a long time. I’ve learned to be okay with it.
“I’m back,” I announced as I dripped in front of the receptionist.
Foolishly I added, “I didn’t get to say good-bye to my bird.”
She stared at me for a long moment before disappearing into the back room and returning with the robin.
“Bye, bye,” I said. “Be a good little bird.”
I felt I needed to add a few tweets in there to make sure it understood. I already felt foolish, so there was no point stopping. “Tweet, tweet . . . tweet, tweet.”
I ran into a friend of a friend a little over a week ago that I haven’t seen in a long time at a local restaurant. One of the things Laurel and I have in common is that we have both lost people we’ve loved due to cancer (my mother and her husband). She was with a group of about six or seven others. There was nothing remarkable about anyone’s appearance. Everyone looked normal. I stopped by her table for a quick hello as I left the restaurant and learned she was eating with her grief group from hospice. Her husband died around three years ago and although they do not meet formally as a group anymore, she explained they still get together every so often to check in on how everyone is doing.
“So, how are you doing?” I asked her.
“I’m vertical,” she told me.
She looked great. I know. Even though I heard it in my head, it was my first reaction. Looking great has nothing to do with how a person is feeling. I even used the word “normal” above to describe her.
I was thankful I hadn’t said it out loud. I know so well that someone can look like they have it all together on the outside when the inside is a hot mess. This is true whether the inside is slammed with treatment side effects, pain from sickness, anxiety, depression, or grief. The inside often is in some state of constant churning. It may be such a present feeling that it is normal for you. Normal always fluctuates for me and has an overpowering element of uncertainty of the future. Normal has to be rooted in the NOW. I’m good at holding it together on the outside. Most of the time.
Grief is messy.
Being vertical shouldn’t be so hard. But it can be.
There is something comforting about being with others who have similar experiences. Support groups are great for this if it fits your comfort level. I went to one after my mom died. It was more of a workshop setting. It gave me a better understanding of my feelings and explained a few things that I wouldn’t otherwise have attributed to grief. Individual counseling is another option to support someone through grief.
Running into Laurel made me pause to revisit what I’ve learned about grief over the years. I reminded myself of many points worth remembering.
Grief is physically and emotionally exhausting. A grieving person needs more restorative sleep.
Grief is hard. It’s tougher to make decisions and trust others, including trusting your own abilities while grieving.
Many question truths in their personal belief systems such as religious beliefs, the meaning of life, and ideas of fairness.
There is a sense of having no control over anything.
Grief is distracting. Functioning in day-to-day activities or at work can be affected. There is a tendency to forget things.
Some people may bump into things, drop stuff, or be prone to accidents. They do not attribute these events to grief and wonder what in the world is wrong with them.
Some people find it easier to be at work and like having a focus away from grief, while others find it difficult to be in their work environment. Some who find an escape from grief at work find that it overwhelms them again as soon as they get home where the memories live.
Dates such as birthdays, anniversaries, holidays, and other important events will be bittersweet. The anniversary of a death will be dreaded and the day after will feel better again because there is a whole year before it happens again.
Grief is real and ongoing. A person doesn’t just get over it. The goal isn’t to get over a loss but to find a way to get through it.
People grieve losses other than death. Loss of jobs, a move, divorce, a friendship or relationship, failed plans, and changes in health are all sources of grief.
It doesn’t mean someone is over their grief if they are having a good day. They may just be getting through the day vertically.
Grief spurts come out of nowhere. They may not last long but can be intense.
There is no timeline. There are as many ways to grieve as there are people. What works for one person may not work for another.
Grief can teach us about life.
I find a lot of strength in affirmations. I’ve read and collected many, blended them together, and written my own when I have a specific need. I have close to one hundred in my affirmation file and I’m always coming up with more. Here is my group of affirmations on grief. Perhaps one or two will jump out as applicable to a situation in your life.
Affirmations That Acknowledge Grief
I allow myself to fully feel my feelings, both happy and sad.
I can still feel love in the world without my loved one.
I seek the help I need and accept help when it’s offered.
I hold on to love and will let go of the grief when I’m ready.
I am surrounded by seen and unseen love and support.
I am kind to myself while I grieve and heal.
I honor my lost loved one by living my own life in positive and beautiful ways.
I move away from memories that bring me pain and focus on memories that bring me happiness and peace.
Grieving is a part of life and I am doing okay.
There are many feelings involved with grief and loss and it’s okay to feel all of them.
I still feel my lost loved one’s presence and it comforts me.
I grieve loss in healthy ways that are right for me.
There is no timeline for when grieving is done.
Grieving ebbs and flows differently for everyone.
I recognize difficult moments and know they will pass.
I choose to grieve my loss and move forward at my own pace.
It is okay to feel happy again.
Moving on with my life does not mean I have forgotten someone I loved.
I am grateful for the time I shared with my loved one.
This experience has allowed me to discover new truths about myself.
I am done being sad for today and I move on to other emotions.
My life has changed and I will meet these changes day by day.
There are many people I can talk to who will listen to how I’m feeling.
I feel supported during this difficult time.
I am learning how life works for me with these new circumstances.
After I’ve given all this unsolicited advice, I think it’s also important to avoid offering easy answers or clichéd expressions to someone who is grieving. As an example, I often hear people say God needed another angel when someone has died. It’s meant to be comforting. I don’t believe this. Heaven has enough angels. Keeping people around longer on Earth that spread goodness seems like a better idea to me. We need those people to stick around. Someone who is grieving needs to feel listened to and feel comfortable enough to cry and express their feelings with the support of their friends. Telling someone how they should be feeling or dismissing their feelings with some tired or cute remark invalidates grief.
I have grieved my parents and other family members, friends, neighbors, and people I have never personally met who have died from cancer. I don’t think I’ll ever be done grieving some deaths, and that’s okay. It’s there. I can still be happy. I’ve grieved a child and an unfulfilled dream when cancer put a screeching halt on plans to become an adoptive parent. I’ve grieved relationships that have changed. I’ve grieved my teaching career when it became clear it was in my best interest to retire. I’ve grieved my past because I can’t reclaim my life and health to what it was before cancer. I’ve grieved my present because of disappointment and anger and changes that still don’t fit my plans. I continue to grieve my future because of fears. Although it isn’t what this post is about, I also have hope for my future and I will not let go of my hope.
There are many parts of myself that I grieve. I choose to keep many of those thoughts private for now. It’s my work to do, difficult to share, and very hard for me to put into words.
Grief is universal but everyone does it differently. There is no one right way to do it, but it needs to happen in its own time and in its own way. I don’t want to forget my loved ones who have died. I do want to quiet memories that haunt me. I do want to remember all the happy times I’ve shared with people who’ve died.
Laurel is incorporating grief into her life as she keeps living and moving forward. Looking fine on the outside doesn’t tell the whole story. It seldom does. I hope I can meet people with compassion and empathy to offer whatever support is needed.
Three affirmations from my list jump out at me as I write today:
I honor my lost loved one by living my own life in positive and beautiful ways.
Moving on with my life does not mean I have forgotten someone I loved.
My life has changed and I will meet these changes day by day.
My mom made the biggest impact on me from anyone I have ever known. She has been gone for six years and I haven’t written anything about her, not even notes.
I couldn’t handle jotting down ideas. It’s still too fresh, but at the same time it feels like it’s been a million years without her.
Today is Mother’s Day.
I am ready to share.
Violets hold strong memories for me. It started with a violet that first belonged to my grandma. The porch off the kitchen of my grandma’s farmhouse was a greenhouse of sorts during the summer months. The light was perfect to grow an assortment of plants, one being violets. One such violet came to my mom when my grandma died from cancer. It was already huge but continued to thrive for another fifteen or so years. My mom had a knack like my grandma. It went uncared for when my mom was so sick and I thought it was past help when I discovered it. I took it to a local gardening store for a second opinion with the hope that I was wrong. Unfortunately, they agreed with me. However, I decided to give it one more try before I gave in to what I thought was inevitable. Do you know what happened? The violet came back! It had more blooms on it than ever. I started many new plants from the grandmother violet. Many of those have been redistributed to family, friends, and former co-workers.
Eventually, the grandmother violet stopped thriving. Its stem arched and twisted like an arthritic finger. It was very old and long past its expected lifespan. Being so twisted, I didn’t notice when the stem broke away from the roots. By the time I did, it was too late. I struggled to throw it out. I rescued it and had kept it going for years. It was a visual reminder of my mom and grandma. I couldn’t lose it on top of all I had already lost. One day, I finally accepted it was gone, and took what was left and buried it, figuring it was better to return it to the earth than chuck it in the garbage. Something that held so much value didn’t belong in the trash, discarded like it meant nothing.
It meant a lot.
I also needed to reframe how I thought about this magnificent violet. It was a life-giving plant. So many new plants came from one plant, much like the offspring from my grandma in my family tree. Friends and family still send me photos when the violets I’ve given them bloom. In this way, I feel like small parts of my family live on. Maybe the memories are just mine, but good memories deserve to keep blooming. Violets in bloom do this for me with fond memories of two of my favorite people.
Now that I’ve chosen to write about my sweet mom, allow me to share a couple more memories.
I remember one summer day when she was mowing the back lawn. My father was still alive and not yet retired. I was also out in back reading and not being helpful. Yes, I know I should have helped more. The mower had stopped. She restarted it and the mower lurched forward with remarkable speed and headed across the lawn. It was a self-propelled model. My mom grabbed it and held on as her little short legs hurried to keep up with it. She regained control so it didn’t careen into a tree. I know I probably shouldn’t be smiling right now, but smiles are better than tears.
Another time she was outside gardening in a flowerbed I had encouraged her to start. I was older and home visiting for the weekend. This memory finds me once again out in back not being helpful. She stood up a little too fast from weeding and lost her balance. With surprising agility, she jumped over the flowerbed and just kept running across the yard until she slowed to a stop. I didn’t know she had that athletic ability in her! The flowerbed was a source of enjoyment for many years. Black-eyed Susans thrived and prospered.
When I moved back to my hometown and got a teaching job at my former elementary school, my mom was there to help. I would bring her to school to help set up my classroom at the end of summer. She was my number one helper. Truthfully, she was my only helper. My mom did a good job cutting out laminated materials, putting up bulletin boards, and other small odds and ends that were huge time savers. She was great company. I’d stop by and visit a bit after the first day of school and let her know how the day went. I have countless memories of her being in my corner.
Another frequent memory I have of my mother is how she’d expect me to know answers to her questions without providing me much (any) information. She called me up so many times to ask, “Who’s that person that we saw at that place doing that thing?” I knew her so well. Most times I could figure it out. We talked every day. I miss that a lot. Whereas I can still talk to her, the conversations are not quite the same. I wrote to her in a grief journal for a few years after she died. It provided a much-needed connection that was part of my grieving and healing work.
We took many trips to Door County in summers when it was just the two of us. It was so easy to travel with her. We walked on trails not knowing where they would lead. Thankfully, they were always circular and we ended back where we started. We indulged in cherry desserts at dinner. We savored ice cream at two particular ice cream establishments. Our pace was never hurried. Sometimes we just sat by the water and visited. We watched a couple of beautiful sunsets. One year she got three consecutive holes-in-one at miniature golfing. She didn’t mind the attention it drew. I am glad there are memories of her around every corner when I visit today.
My mom died from metastatic breast cancer. It was painful to watch her worsen for her last final months. Slowly. Irreversibly. All the while, I was recovering from treatments from the very thing that was killing her. Pain for her. Pain for me. The various benchmarks of death inching closer are not things I care to remember. It’s excruciatingly hard to forget images that haunt me. Trauma mixes in with grief. I look far too much like her. Most of the time I consider this a very good thing. I can even see how she looked like my grandma. It’s when I relive memories of my mom during her last days that I’m not so fond of the resemblance.
These gut-wrenching memories don’t help me. They serve me in no positive way. There is no beauty in them. I am never going to be glad for those moments. It’s really hard work, but I am trying to shift to happier memories when the bad ones get triggered. Happy times are the beautiful moments filled with joy that I’m glad to remember. I finally started my list of happy memories I don’t want to forget. They are nothing more than bullet styled ideas that I can add details to later.
Grief is a lot like paper in a paper shredder . . . the original piece of paper still exists but has changed to an unrecognizable form. It will never be the same again. It never can be put back together. Maybe the paper gets recycled and becomes whole once more, but it’s a different wholeness with different print and perhaps a different texture.
Another shredding is always possible.
I still have moments where I feel completely shredded.
March and April are months that are filled with more grief for me than other months. May historically is a happy month for me. I am always glad when May arrives. Mother’s Day isn’t meant to be sad. It is for many though who have a sick mother, have recently lost their mother, yearn to become a mother, or may even be a mom herself who isn’t well.
Grief shows up on unexpected days as easily as on expected days like birthdays, anniversaries, or holidays. It comes and goes in waves. I can be okay at a funeral or visitation and then almost lose it in a grocery store. Whenever grief washes over me, I need to acknowledge it and let it pass. It washes back out to an imagined sea soon enough. Grief is ongoing. I swim in it, towel off, and am okay until the next wave. I work through grief and try not to get stuck there. No one should stay stuck in grief.
On Mother’s Day, I need to focus on good memories. The disturbing memories I have need to be banished, or at least minimized, so I don’t have a visceral reaction. So I don’t stay stuck. There is no point in remembering my mom immobile and unresponsive in a hospital bed, still breathing but unable to eat, speak, or open her eyes, and already gone in so many ways. When I look at photos of my mom in better days, she is happy. These remind me of pleasant memories. Even if I’m not in the picture, I go back and am happy in that moment again with her. Happy memories are the places I need to linger every day and not just on Mother’s Day.
I close my eyes and let the good memories fill my heart.
I see her stand in the front window where she’d always wave goodbye to me.
I hear her voice and uncontrollable laughter.
I smell the angel food cake she always baked for my birthday.
I taste her special cran-raspberry and lemon jello dessert salad.
If I try hard, I feel my mother’s hug.
I know how much I was loved.
That’s the best memory of all and never leaves me.