Category Archives: Health and Healing

Lemonade, silver linings, and the long road home

The last two weeks have marked some watershed moments for me. Some involved making lemonade out of lemons, some required spotting the silver lining in an exhausting week, and one of them – quite literally – meant finding my way home. 

What should’ve been a straightforward procedure to treat Andrew’s common prostate issue turned into a seven day hospital stay. Because his discharge kept getting pushed back, a day at a time, I stayed with him the entire week. Thankfully I’m retired and self-employed, so that part was easy. 

Andrew is intelligent, personable, funny, easy-going. He can talk to anyone and his humor lights up the room. What he isn’t is an especially good advocate for himself. To be fair, most people aren’t. So for seven days, I was hypervigilant, making sure nothing fell through the cracks. I built relationships with nurses who helped us navigate doctors who were not necessarily responsive. I stayed on top of his pain management schedule and monitored all his stats. I asked for what he needed assertively, respectfully, and relentlessly. 

But my biggest challenge wasn’t supporting Andrew. My biggest challenge was driving us the 40 minutes home after he was released.

A little context: 

Over the last couple years, following multiple medical procedures, I’ve developed some common, but unfamiliar anxiety issues. White coat syndrome –  strong flight and, more recently, fight responses when I’m preparing for or attending a doctor’s appointment, and most unexpectedly, anxiety about driving.

After my retina partially detached in November 2022 requiring two repair surgeries, I wasn’t comfortable driving. I tried to start driving again several times, but the glare of the sun and shifting lights and shadows, my distorted vision, and aggressive, unpredictable Las Vegas drivers were too much. Then, came my breast cancer diagnosis and treatment – more surgeries and recovery. First, I couldn’t drive and by the time I could, I just didn’t feel like it. I’d found other ways to get where I wanted to go. I continued to put it off. I’d drive when I was ready, or when I had to – I didn’t really expect to have to. 

Driving us home from the hospital was my first real “have to” moment. To my surprise, I had no anxiety. No distress. No fear. I took the highway part of the way and busy city streets the rest. When we pulled into our garage, I exhaled and let pride wash over me. I’d done it!

That night I realized that this was one of those moments when life hands me lemons and, without even thinking about it, I make lemonade. It wasn’t a moment I sought out or prepared for — it just arrived, unexpected, and I showed up. I came through. I did what needed to be done. I decided I didn’t have to drive again anytime soon, but I knew I could if I needed to. 

The universe had other plans. 

Over the next several days, I needed to drive, a lot. The day after Andrew‘s release from the hospital, I had to drive him back to the emergency room 40 minutes from our home. This time, I drove highways all the way through sometimes easy, sometimes heavy, almost stop-and-go traffic. Again, I was comfortable, calm, and secure the whole way. The next night, a late night ER run had me driving through dark city streets and road construction. I stayed calm. The following day I drove myself to my annual physical exam appointment. Then today I drove Andrew to and from another doctor’s appointment. 

I guess I’m driving again.

More context: 

For most of my adult life, driving has meant freedom. I love to explore. I love to be spontaneous and just get in the car and go somewhere. I also love to plan trips and visit new and exciting destinations. I love the freedom to go anywhere I want to go at any time. I didn’t realize losing that freedom was one of the quiet losses of the last few years. 

Apparently the universe has decided I don’t need that fear any more. I’ve been surprised by my confidence and lack of anxiety while driving. I feel like this is a strong step toward regaining independence lost due to physical issue, after physical issue, after physical issue over the last three years. To be honest, i still feel some reluctance to drive, but every day it’s getting easier.

So where am I now?

I guess we’ll know when I cut loose on my first solo road trip. Until then, I’m happy with interstates, city streets, and trips to accomplish tasks and run errands. 

In a very powerful way, I’m reclaiming myself, my independence, my freedom – one glass of lemonade, one silver lining, and one mile at a time. 

My love!!! 🩷🩷🩷
Roadtrip ready!!!

My Breast Cancer Journey: The Gift of 2 Days Feeling Like Myself

The last 2 days have felt magical. I have felt 100% like myself. I have felt present in my body, comfortable in my emotions, full of energy and love. I have felt like me. That is a big statement as I haven’t felt like me since I was diagnosed with breast cancer had a double mastectomy in May and went on cancer treatment meds in June.

I wrote about some of this before, but to manage the side effects from my breast cancer treatment, the first medical oncologist I saw last June, put me on anastrozole to suppress my hormone production and 75 mg of venlafaxine a day to manage hot flashes and other side effects of the anastrozole. 

I should’ve asked more questions. I should’ve been more vigilant. I was a great advocate for myself in terms of not wanting some of the side effects that the anastrozole was likely to create. However, I was not vigilant enough about the remedy that he chose. 75 mg of venlafaxine, an antidepressant, changed my brain chemistry. In the words of my second medical oncologist, I might have thought I was treating hot flashes but my brain thought something else. 

With her agreement, I decided to go off my cancer medications a month prior to our honeymoon cruise to the West Indies over Christmas and New Year’s. I wanted to see what it felt like to feel “normal”. 

I know it’s dangerous to go off antidepressants cold turkey but I didn’t realize I was on one. What followed was a 12-day ugly-crying spree. I don’t think I’ve ever cried that much in my entire life, over anything. Those of you who know me well know both that I have gone through some pretty cry worthy experiences in my life (haven’t we all), and that I cry easily and with no shame. In the words of Jude Law’s character in Holiday, “I’m a major weeper”. I cry at poignant movies. I cry when I’m happy. I cry when I’m sad. You get it. I cry. But this was different. I felt so low emotionally and I cried uncontrollably, almost constantly. It wasn’t until two weeks later that I had an appointment with my medical oncologist and she informed me of my error, that I could not go off venlafaxine cold turkey. So I went back on it. Not what I wanted to do, but I also didn’t want to spend our honeymoon cruise crying.

On January 8, after returning from our cruise, my doctor and I came up with a plan to safely wean me off the venlafaxine. She shifted my dosage from 75 mg a day to 37.5. She wanted me to take this dosage daily for 21 days, then reduce it further to every other day. I completely weaned myself off the medication five days ago. The first couple days I had moments where I felt hyper emotional, but they were short-lived. I felt optimistic. I felt that I could do this.

And yesterday was the gift I had been waiting for. I woke refreshed, ready to start the day, and happy. No distress. This is how I typically wake up, at least I did until last April. 

I don’t know what decision my medical oncologist and I will make when I see her this week about resuming my cancer medication. That will be largely determined by my tumor markers and my decisions about quality of life and the risk of cancer recurrence. Initially, my odds were very low. I hope that is still the case. I do know that feeling like myself is a godsend.

On our cruise

I want to be clear, this is not a tale of advocacy. I would never tell anyone what to do on their cancer journey. Everyone’s cancer journey is unique. Everyone’s experience with medication as unique. 

This is a cautionary tale, a tale about asking the right questions at the right times and not making assumptions. Today, March 3, I feel normal. It took just shy of two months. I embrace this gift today. Today, I’m not worrying about the future. I’m just reveling in feeling like me. 

Reflections on the slog that is cancer recovery on a beautiful autumn day

When I started my breast cancer journey, I promised to be open and transparent about all of my experiences. The last few months I have been uncharacteristically quiet. The reason is that this is a truly difficult experience.

But let me set the context first, I literally could not have had better outcomes. After my double mastectomy, test results indicated that they got all the cancers with clean margins and no lymph node involvement. My oncotype score, which indicates the likelihood of cancer recurrence, is very low. I didn’t need chemo or radiation and I only have to take aromatase inhibitors for five years. If I don’t take them, there’s a 5% chance that the cancer may come back in the next nine years. If I take them for the full five years, there’s a 3% chance. I could not ask for better odds. 

That said, this is a slog. I am very aware that other people’s experiences and outcomes are  harder and more difficult than my own. I feel for them, and I wish them success in their journeys. 

I’ve come to realize that no matter whether you are on the worst end of the spectrum or the best end of the spectrum, this journey should not be about comparison and it’s difficult regardless. The fight for life from cancer is always a big deal. It’s clearly a big deal at the worst of times. In my case, it’s also a big deal at the best of times. After my first surgery, I had a lot of pain and recovery was difficult and complicated. I was in the hospital for three days for what was supposed to be an overnight visit because they could not get my pain under control. This was largely a matter of nursing staff not being concerned about being timely in the administration of pain meds. Unfortunately, when you break the cycle of pain medication, you have to start over.  My worst pain was searing pain across my back from my right side around to the center of my chest on the left. I wrote about this pain in an earlier post. I defined this pain as a red fire dragon. It stayed with me for months. In addition to that, my whole body ached. Everything hurt. 

Over the next 6 weeks, I slept a lot both to manage pain and to deal with the reality of what I had gone through, what felt like a betrayal by parts of my body I had valued. I also wrote about this in an earlier post about saying goodbye to my breasts.

I couldn’t lift my arms for weeks. I also wasn’t allowed to shower for a month. That meant that my husband had to wash me, dress me, brush my hair, brush my teeth, anything that needed to be done with my body, I needed his assistance. The only way I could leave the hotel was in a wheelchair and the only walking I was permitted to do was from my bed to the door of the room and to the bathroom. And I wasn’t allowed to do laps. 😊 My doctor figured me out pretty quickly. He knew that I would push to recover as quickly as I could. As it turned out, there was no quickly. I couldn’t push. I had to give my body the time it needed to recover and heal.

I’m lucky. My husband is so loving, compassionate, and caring, he could not have made me make feel more comfortable and loved throughout this adventure. 

Following my reconstruction surgery, the pain has been less, but the side effects from the aromatase inhibitors, the meds I have to take for five years, are intense.

I’m tired all the time. I have a pretty constant headache. My body is fatigued. I’m nauseous a lot. I have joint and muscle pain. And while I am in less pain, it’s somewhat more frustrating because I feel that I should be able to do more. My biggest lesson on this journey has been patience. I need to give myself grace as I go through this process. 

No. I’m not my usual self. I’m more focused inward than usual, but that’s necessary. I reach out when I can, but that’s much less than usual and that’s one of the most difficult things for me to accept. I know that I will be myself again. It hasn’t even been six weeks since my second surgery and I’m still healing and on modified house arrest. I am allowed to go out and walk a bit, but I’m still wrapped and wearing binders, until next Tuesday.

I’m an optimist. Yesterday my husband took me to my favorite Rose Park. I walked a bit, but mostly, I just sat and breathed in the sunshine and the beautiful Vegas, autumn weather with my favorite seasonal Starbucks beverage. As usual, I came home and took a nap. I will get through this. 

To anyone else who is on this journey, the most important thing I have learned is that there is no roadmap for cancer recovery. I have looked for one almost nonstop. I find myself wondering if what I’m going through is “normal”. There is no normal. Listen to your body. Stay patient. Give yourself grace. Notice the beauty around you. Breathe. 

Playing with the portrait function on my new phone

A beautiful sunny day, a gentle breeze, and being content in the moment

I sit outside at a table with an umbrella on this cool, lovely, sunny morning. i’m wearing long yoga pants and an Oceanside sweatshirt that my daughter got me. Around my neck is a hummingbird necklace gifted to me by my son as I started this adventure. A breeze gently blows through my hair and caresses my skin. It’s good to be alive.

I’ve always believed that every day was a gift and on this journey, I am more convinced than ever that this is true. It’s also true that some moments are incredibly rough.

With all the accidents and injuries I’ve had in my life I thought I had a pretty good pain tolerance. That said, I was not ready for the pain involved in a breast cancer diagnosis, a double mastectomy, starting reconstruction, and just managing healing. There’s pain on so many levels, physical, emotional, spiritual (so many different types of physical pain). My identity feels squishy and somewhat nebulous, but I recognize that’s due to the moment I’m navigating. I am who I am. That will not change. I am strong. I am optimistic. I am independent. I am a warrior. To paraphrase the immortal words of Commander Taggart in Galaxy Quest, “(I) never give up and (I) never surrender.”

Some things happened this week that were frustrating and disappointing. My plastic surgeon decided that my expanders were still sitting too high in my chest, so he didn’t want to do my last full expansion this week. He only did half. And rather than planning for my reconstruction for two months from now, he wants to wait. Apparently if my expanders relax on their own, it’s a much simpler surgery. If they don’t, he has to deal with readjusting scar tissue, and the outcome, I guess, will be less positive. So I’m digging down and finding my patience to wait, to realize that I am just at the beginning stages of this whole process.

I have the most incredible support system. I am so blessed with family and friends who love me, who reach out to me, who provide expertise and information, who provide shoulders when I’m sad or overwhelmed. On this journey, whenever I have needed something the person who had the ability to provide, it has appeared. Breezy, one of my new daughters (by marriage) gifted me with a wonderful cushion vest that I can wear in the car to protect my chest from the seatbelt. Fortunately, for me now, she works at a bra spa and is helping me navigate the kind of support I need now that I don’t have to just use ace wraps any more. That whole concept has been overwhelming to me and having someone in my corner who is an expert is such a gift.

I’m just sitting here, pondering the idea that we can be underwhelmed and overwhelmed, but we can’t just be whelmed. I think I’d like to be whelmed for a while.

So on this beautiful Friday morning, I sit out by this lovely pool surrounded by palm trees and flowers, and I breathe, content in the knowledge that I am, content in the knowledge that I will be, content in the knowledge that I have all the resources I need to get through this. Thanks for listening!

Gratitude and 10 lessons learned since my double mastectomy 3+ weeks ago

Today’s post is one of gratitude. I finally got my second set of drains out, and I feel so much freer. I’m still on house arrest for another week, which means walking back-and-forth to the bathroom and to the second room in our little suite, but that’s it. If Andrew takes me to a restaurant, he has to drop me off at the door and pick me up at the door. If we decide to go for a walk or to the mall next door, I have to sit in the wheelchair. I still can’t lift anything over 5 pounds, but I can shower whenever I want!!! 💃💃💃

The last 3+ weeks since my double mastectomy have certainly been an adventure, and I have learned some things.

1. Trust: Having a medical team you trust is pure gold. My breast cancer surgeon is both renowned in her field and an ex-student. She was the top graduate in her class as an undergrad, and I was her mentor. She responded quickly when my mammogram showed areas of concern. She facilitated mammograms, ultrasounds, biopsies, and an MRI. She encouraged me to get genetic testing. Most importantly, she put together an amazing team for me and has supported my every step. She made the stages of grief so much easier as I undertook this cancer journey. I could just relax into my trust. I have felt all the things – denial, anger, bargaining, depression, and acceptance (still working on this one), but mostly I’ve felt cared for and supported.

2. Pain management: Pain is no joke and managing it can be a complex process requiring clarity, advocacy, and assertiveness. (I’ll write more about this in a later post.) Just know that it’s hard to do for yourself when you’re the one feeling the pain. Sometimes it takes so much energy. Have a good advocate and coach your advocate on what you need.

3. Cry: Crying is cathartic and it feels good sometimes and frustrating others. That’s ok. I’ve learned that I cry out of pain, out of frustration, and out of joy. That’s all important!

4. Take a longer view: A good friend reminded me not to get mired down in the day-to-day – especially if the day is disappointing – but to take a longer view of progress. Over the last weeks: My arms have gotten more flexible; I can do more for myself including washing my face, brushing my teeth and hair, and putting on makeup. I can now go out to eat. I can toss snacks to Kloi (our cat). I have a bit more stamina. So many little things that add up to real progress. And now my drains are out!!!

5. Be vulnerable: Vulnerability leads to care and grace. My counselor told me that if I ask others for what I need rather than pretending I have it all together I allow them to provide service and to grow as they help me. That might have been my hardest lesson yet. I’m always open to helping others, but when I need help I always fear I’ll be a burden. Weird contradiction, I know.

6. Get counseling: Cancer sucks! And seeing someone who’s paid to listen and offer insights is invaluable. I’m seeing a counselor and I highly recommend it. As part of the breast cancer program here at Providence, St. Jude in Fullerton, Ca, I get a certain number of visits. While talking to friends and family is important, venting to someone who I’m not afraid to hurt with my sadness or despair, or frustration is very helpful. I also share my joys and small successes. And he offers me unique perspectives.

7. Grace, patience, and self kindness: Giving myself, grace, and approaching this situation with patience is probably the best thing I do for my mental health. I’m not perfect at it, but I don’t get down on myself; I don’t judge myself; I try to stay calm and accept whatever the moment is presenting me. And I cry. A lot! But I already said that.

8. Love your people; love your pet(s): Opening myself up to my people (and Kloi), allowing them to share my journey, accepting their care and companionship makes me feel less alone. Plus they each have a unique view or approach that I find uplifting.

My rocks: Andrew, Alyssa, and Stefan
Kloi

9. Be careful not to isolate yourself: I know that since my surgery, I’ve isolated myself a bit. I’m kind with myself about this because I recognize it’s not my typical way of being in the world. That said, this is not a typical situation. Another friend told me to trust myself and what I need, that this time is about me and accepting what I’m feeling without judgment. I get to be in charge and focus on my needs. There’s no right way to do this, but it’s important to put myself first – not necessarily a comfortable position for me.

10. Follow whatever spiritual practice works for you: It helps to recognize that I am part of something bigger than myself, that God, source, the universe, my higher self have me. I will get through this – whatever that looks like. For me, seeking out the beauty around me is the clearest indication that I am not alone.

I’m sure there will be many more lessons as I proceed on this cancer journey, but today, I’m just grateful my drains are finally out. And now, I’m going to take a shower! 💃💃💃

On the Importance of Gratitude and Living in the Present on this Cancer Journey

For the last few days, I have focused on living in the moment and gratitude. My wonderful husband helps with that so much.

Several days ago he took me ring shopping because we used a placeholder ring for me when we got married. He found a gorgeous, ruby and diamond ring as well as several other lovely rings. He showed me pictures of them and told me when I was feeling up to it, we could go look at them. When I felt well enough to troll the mall in a wheelchair, he took me to see them and try them on. I fell in love with a ruby and diamond ring, as he knew I would.

That day, I was feeling pretty pessimistic. A gorgeous ring like that seemed to be a portent for the future, and I wasn’t confident in what the future held. I asked him to roll me to a sitting area where we could talk face-to-face and I could tell him my fears. My fears of not living, my fears of debilitation, my fears of treatment, my fears of not being , my fears of losing myself. At that moment, I seemed to have lost my optimistic self. I was embracing a scarcity model and pessimism, two things that do not typically characterize me. Andrew‘s response was “My love, this ring is a symbol of how much I love you, how happy I am that you are my wife, and how happy I am that we are sharing our lives together”. The interesting thing is that as soon as I said the words and heard Andrew‘s reply, the weight of those fears lifted.

Yes! There was no reason for me to be this pessimistic, this fearful. Everything so far had gone my way. Yes I had had a double mastectomy, but they got all the cancer with clean margins, and there was no indication of cancer in my lymph nodes. You can’t really get much better than that following a breast cancer diagnosis. I had decided on breast reconstruction surgery, so that was going to happen as well. I needed to focus on how fortunate I was and try to be as positive as I could.

That does not mean that I’m positive all the time. I’m not. I have cried more in the last month and a half, since the diagnosis, than I’ve cried in my entire life. And as my children will tell you, I’m a crier. When they were little and we saw sad or poignant commercials, TV shows, or movies, they always looked at me to see if I was crying yet. Often I was – or at least I had tears in my eyes.

I think it’s critically important to allow myself to sit in the fear and the sadness that are part of this cancer journey. Normally, I approach those emotions as Chevy Chase did at the Grand Canyon in National Lampoon’s Vacation. I bob my head three times and I’m done. This time, with this journey, it’s not so simple.

That said, gratitude, and focusing on the present really help, at least sometimes.

The other day my sweetie took me to make candles. I love candles and it was a warm, sweet, fun moment and I was fully present.

This morning we went to see the medical oncologist for the first time. I was extremely apprehensive about that visit. I teared up a couple times this morning in anticipation. None of the treatments to prevent cancer from coming back are very much fun and I was afraid. My oncotype analysis is not back yet, so this was really just a preliminary meeting. After meeting with him and with my plastic surgeon, Andrew was pushing me back to the car in the wheelchair when I decided I wanted to grab salads and just sit outside and enjoy the beautiful day. So, that’s what we did. We also did one of our favorite things and played games on Andrew’s phone.

These three examples of being in the present moment have really helped ground me. I know I won’t always be there. I know there is still a lot of fear, uncertainty, and angst ahead of me. I also know how very much I have to be grateful for.

Making peace with pain and a fire dragon

Before my double mastectomy, my doctors told me I wouldn’t feel much except for numbness in my chest. I’m happy to say that they were wrong. I’m also in a great deal of pain because they were wrong. Nerve pain is real, and apparently both the biopsy on my left breast and the mastectomy of my right breast did some nerve damage. Almost from the beginning, this pain had a form, the form of a red, burning fire dragon.

After I fell asleep at 1:30am, I don’t think I moved all night and when I woke up this morning, the entire fire dragon was flaming. Because the pain was excruciating, I felt motivated to try to figure out what my dragon – yes, I already think of it as “my” fire dragon – looks like.

Its head has gold/red lava eyes glancing out from my back languidly, slightly hooded, confident in its power. I don’t yet know if it’s female or male, or what it may wish to be called. These are details for later.

I just know that it’s taken up residence from my right scapula across my back, around my side and over my chest to my sternum from the left. Its body and tail stretch horizontally across my back. It is sleek and aerodynamic. Its wings tucked back along its sides and its legs drawn up against its body as if it has just dived from a high point, and is now smoothly gliding across a horizontal plane.

I do know that nothing seems to touch the red hot searing pain it causes when awakened. I try to let it sleep.

Images of many fire dragons show them breathing fire. Mine IS fire with golden and blue black tendrils of flame throughout its body.

In dragon lore, red fire dragons are proud, fierce, and vengeful. I have direct experience with those qualities. In Chinese culture, a red fire dragon symbolizes good fortune, happiness, and good luck. I hope that all these symbols are equally true.

I grew up reading the Dragonriders of Pern books by Anne McCaffrey. My little girl self yearned to impress on a dragon, making us partners for life. I may want to be more careful what I wish.

I’ve now taken pain meds and a muscle relaxer, and I’m more comfortable and a little more relaxed. Hoping to sleep. Rest fire dragon. Rest.

Friends, Fremont Street, and My Healing Journey Continued

This photo probably looks like three friends having a good time on Fremont Street in Las Vegas. It is! But it is also so much more! Two months ago, I would not have been able to be here, let alone walk around and enjoy myself. The bright, colorful, moving light shows, the hustle and bustle of the crowds of people moving in all directions punctuated by laughter and silliness would have been too much for me. It would have taken me down. Within minutes, I would have had a blazing headache, been dizzy and nauseous, and had poor balance. I would’ve had to hold on to Andrew and Glyn‘s arms for stability. This time I did it with no such stress and very little physical support. 

Those symptoms, dizziness, nausea, lack of balance, and headaches, are my body’s way of telling me that I’m out of my comfort zone and I need to rein it back. (Other people have different reactions.) The thing is I don’t need to rein it back. I need to push through until it’s too much and then stop. That’s how I’m progressing on my healing journey. 

For those of you, who haven’t followed along, a year ago in a freak moment, part of my left retina detached. The night after I had surgery, I stumbled twice in the bathroom and trashed my knee, spraining my ACL, MCL, PCL, and shredding my meniscus. That required an additional surgery that could not happen until my eye had healed adequately, eight weeks after my retina reattachment surgery. Then I had a second eye surgery to remove scar tissue that had built up on my retina. 

I’m not completely back to normal yet, but I’m on the road and I see so much progress. There’s still distortion in my left eye, although with red light therapy (to remove inflammation in my eye and knee) and vestibular therapy to help my visual, physical, and auditory systems work together to control my balance and coordination, I see so much improvement. I am getting better! I still have a ways to go, but I’m on the road. As my eye doctor said, I’m not going to know how my vision will level out until at least a year from surgery, which was last March. That aside, I’m becoming more functional and self-sufficient all the time. My independence is something that I have always prized and have at various times in my life, lost. I continue to move forward in my recovery journey, still learning patience and the ability to rely on others when I need them.

Andrew has been an absolute rockstar through all of this. To be honest, I have not been easy. At times, my self-concept and self-esteem have suffered. I have felt bad about myself. My internal narrative can get pretty dark and negative sometimes. Through it all Andrew has reaffirmed and reinforced that caring for me is where he chooses to be, and that he would not choose to be anywhere else. He also consistently reminds me of how far I’ve come, a journey that it’s difficult for me to see step-by-step. He has literally been my lifesaver. I cannot express my gratitude enough.

And now, my friend Glyn. He showed me nurturing, care, and understanding over a decade ago when I broke both of my wrists. You learn a lot about people by how comfortable they are being with you when you’re damaged. Glyn was always comfortable and easy to be around where other friends were sometimes awkward, or simply avoided me. 

This situation was different. I had had a couple friends visit a day or two as I recovered, but with no expectations that I would be able to do anything. Paaige and Miche were wonderful. They had no expectations that I would do anything or go anywhere and were just comfortable to be with me and follow my lead. Glyn was making his first trip to Las Vegas and to be honest, I was a little fearful. With my friends, I am normally vibrant, engaged, high energy, and high activity. I have not been able to be those things since these accidents. I didn’t want to become frustrated that I couldn’t be the me that I wanted to be. I didn’t want my friend to have a disappointing experience in Las Vegas. I wanted to make sure that I set appropriate boundaries and called events and activities when I needed to. Glyn was awesome! As we explored Resorts World, where my daughter works, and Fontainebleau, where the new Cocoa Dolce is located, Glyn recommended that we stop for a cup of tea – ostensibly because he was thirsty – likely he also recognized that I was getting tired. It was wonderful to have someone ask for something they wanted that benefited me rather than having someone show pity or concern for my capacity. Well done, my friend! 

We had a big exploration day that day. We walked over 12,000 steps, found the Ghost Donkey Bar where I tried my first sips of mezcal. We explored the Bellagio, rode the bus up and down the strip, and I felt gloriously free and capable. When we needed breaks, we stopped. When I needed support, I held Glyn’s arm. It was such a strong powerful day for me. 

The next two days I was much more low energy and I needed to rein it back in a bit. We still had fun visiting some of my favorite places and enjoying lunch and dinner. Andrew picked up the slack one night and took Glyn to explore some sites while I rested. Then we had another wonderful “get out there and do things” day, giving Glyn his first experience with Korean barbecue at Master Kim’s, spending time on Fremont Street, and going to the ice bar 5° Below Zero in Mandalay Bay, where we wore fur coats and hats and sipped colorful, sugary sweet cocktails from glasses made of ice. The last day of his visit Glyn and I went to lunch at a new Japanese restaurant in Town Square, Mall. 

This trip was about both of us doing things we had never done before. It was about me being kind to myself (although I did have a couple moments, when my gremlin voice – what I call my critical self talk – tried to take me down), asking for what I needed, enjoying myself to the fullest, recognizing that it’s OK to be low energy sometimes and almost normal others. Realizing the freedom to be with a friend that I could trust to understand, and not to push. The steps toward normalcy are important and powerful, as is the recognition that I still have some limitations, and that these may continue indefinitely. Having loved ones and friends for support and nurturing during these times are more precious than gold.

On loss, grief and sticks and stones

When I was in first grade, my best friend died. I wasn’t old enough to understand what caused her death, only to feel the loss and the gap that her absence created. She wasn’t at her desk at school. She wasn’t on the playground. We didn’t walk home together. She wasn’t riding her bike in the church parking lot after we finished our homework. She was just … gone. This was my first introduction to grief. I learned quickly that people grieve very differently.

Grief can make people sad, angry, mean, depressed, dejected, isolated, frustrated. Grief can make people withdraw from others, or reach out to others for support. Grief can lead to kindness and compassion. Grief you can lead to rejection and hurt.

I had never had much to do with my best friend’s older sister. She was seven years older than we were. For the most part, she just ignored us. That is until after her sister died. Then she noticed me. And that noticing, I understand now, created great pain for her that, unfortunately, for me, led her to be mean.

She wasn’t physically abusive, but she was physically, intimidating and aggressive. She was verbally abusive. Almost every day after school, she would wait for me as I walked to my grandmother’s house. She would taunt me and yell at me. I tried leaving school quickly. I tried dawdling after school and walking home slowly hoping she’d get tired of waiting for me and just go home. I tried walking different routes to my grandmother’s house, but grandma’s house was literally one block from school, and there weren’t that many options. I simply could not avoid her.

Often I would reach my grandmother’s house, red faced, and crying. Finally, I shared with my grandmother what was happening. She talked with me about sadness and loss. She talked with me about the pain my friend’s sister was feeling. She told me that my friend’s sister didn’t really mean that she wished I was dead instead of her sister. She just truly missed her sister. I missed her too. At the end of our talk, my grandmother said that the next time she confronted me, I should say “Sticks and stones may break my bones, but your words can never hurt me.” I knew that was not true. Her words did hurt. But it felt strong and powerful to say. I just hoped she didn’t want to hurt me enough that she would physically hurt me, I also hoped that maybe we could support each other through our shared loss.

As expected, the next day, she and two of her friends intercepted me as I took my most circuitous route to grandma’s after school. The three of them blocked my path. She taunted me with wishing I was dead. I stood up, strong and straight, my lip, quivering, my eyes filling with tears, and I used the phrase my grandma had given me, “sticks and stones may break my bones, but your words can never hurt me.” She was surprised. I’d never talked back to her before. She and her friends turned and walked away, leaving me there with tears streaming down my face. For the first time I wasn’t afraid of her. Although I was still crying, I was proud of myself for standing up and speaking.

I ran the rest of the way to grandma’s house and told her what happened. She hugged me and told me she was proud of me. She gave me a Kleenex to blow my nose.

That was the last day my friend’s sister confronted me on my way home from school. It took several weeks before I trusted that it was over, but she went back to ignoring me, and pretending I didn’t exist. I much preferred that reaction.

I would like to say that we became friends over the common loss, we shared, but our age difference, our experience differences, and the nature of our grief kept that from happening.

I mourned the loss of my friend for the rest of the school year, acutely feeling her absence every day. Then the activities of summer drew my attention and my grief became less acute. When school started the next year, I was in a different classroom, and there wasn’t an empty desk. My friend’s sister had moved up to high school. There were no obvious reminders of her, but I did still think of her.

My six year old self learned about the pain of loss and the grief of absence. She learned that grief brings out different things in different people. She learned to stand up for herself a little. She learned that words hurt, even if we claim they don’t.

On self-isolation, asking for support, kitty snuggles, and mental health in the rough moments

Sometimes I get in my own way. I don’t ask for what I need. I feel that I need to tough out situations on my own. I don’t want to bother anyone. All are my mistakes. Writing my last post about sadness as I heal from injury was really difficult for me and some thing I needed to do for several weeks. I don’t like to inconvenience people. I don’t like to make waves. I’m more comfortable with people offering help than asking for it.

What I realized was that my strategy was one of self isolation which exacerbated the feelings of helplessness, loneliness, sadness, frustration, boredom, and depression I was already feeling.

Kitty snuggles always help!

My thinking went something like. “This is a rough time of year for many people. So much loss. So much pain. Do I really need to add to that for anyone?” Or “This is such a special, happy, joyous time for many people. Do I really need to bring them down with my concerns?” Or “Other people are so much worse off than I am. Do I really have a right to complain?” There are fallacies in all 3 of these views that responses from family and friends after reading my last blog helped my articulate.

The first fallacy is about not wanting to make someone else’s situation harder. The reality is that when we share our sorrows we feel understood and seen. We reaffirm important connections; we allow people to share their moments as well – reciprocal disclosure and all that. When we share the load, it’s much lighter for everyone.

The second fallacy – bringing people down when they’re up is equally misguided. People like to show care. Compassion and helping someone in a time of need helps us feel good about ourselves. Side note: Crying is cathartic. Crying with someone else, even moreso. And after someone has heard our pain, our loss, our sadness, the joy in their lives will be there for them to return to.

In many ways, the third message is the most insidious. It leads both to guilt and to undervaluing our own experiences. Repeat after me: “My troubles are not in competition with anyone else’s. Comparison separates rather then unites us. My feelings, my emotions, and experiences are valid. I am worthy of compassion.”

Perhaps, most importantly, no matter how much they love you, no one can read your mind. If you can’t express your needs, they are less likely to be met. So, reach out. Phone a friend or family member. Ask for the support you need. Ask! You may be surprised who responds, and how much better you feel.

If you don’t feel comfortable reaching out to someone you know, call a crisis center near you or call 988. It’s a free call to help you get support with mental health issues. Similar to 911, 988 is dedicated to anyone in need of mental health assistance.

If someone hasn’t told you lately, you are important. You matter. The world is a better place because of the gifts you bring to it. You are precious. You are unique. You are loved. Happy holidays!