Welcome to my Monthly Series

Each month I will be sharing personal reflections on my own experience of loss in the hope it may offer some solace and support to others but also so you can get to know me a little better. I look forward to hearing your own stories and hope this can be a respectful area for sharing our pain and progress.

September 2024 - When someone you love receives a terminal diagnosis...

I recently watched a video where a young man described the moment someone he loved received a terminal diagnosis. He used the word monochrome to depict how his life changed when he received the news. It wasn’t just the word itself, but the way he conveyed it that moved me deeply. Suddenly, I felt like someone had managed to articulate the emotions that had left me speechless twelve years ago.

For many years, people around me have suggested that I share my thoughts and personal stories, but I’ve always found it incredibly difficult to match my words to the emotions I feel. As a result, I keep much to myself. I’m very reluctant to share my traumas, grief, and struggles and as a response, I’ve heard things like, “If you share your story, someone might recognise themselves in it, and you could change their life,” or, “If you’re vulnerable and open, your clients will hold you in higher regard.” My favourite response was, “Create and share only with yourself in mind. If it helps others, then great, but don’t make that your goal because it will inevitably change the way you express yourself.” The person who shared this nugget with me passed away just last year, and I mourned her death by writing and drawing about her and her thoughts on life. I hope she is watching over me now as I write because it’s her words that I hold dear.

There seems to be a compulsion to share every little detail of our lives online, and I’m not a big fan. However, last month, my cat suddenly and inexplicably died within the space of an hour, and I finally felt the urge to join the masses. I hope I can stay true to my core and not be swayed by what I think others would like to hear from me. My work has always centred around loss—a seemingly sombre topic—but it’s the life part involving loss that intrigues me more, and even those closest to me sometimes don’t understand what I do. I wanted to share my stories of loss not just as a cathartic exercise, but also so others can better understand what my work is about and why I believe it’s important not only to move through loss but to learn how to hold it with us and build a life around it, full of purpose and love. Writing about Ziggy was easy compared to other areas of my life, but I’ve committed myself now, so here we go.

Let me tell you about the day my whole world turned monochrome.

It was a day in late September 2012, and I had spent it with my husband of four months at the Erasmus Medical Centre in Rotterdam. We were there for a total of six hours, going from one test to another in different areas of the hospital, before being invited into a small office. There was a little table with three chairs, one of those bookcases filled with brochures and leaflets on neuromuscular diseases, and a wall clock that reminded me I was hungry, its ticking feeling like a nail being hammered into my head. My husband and I sat there for a few moments alone, in silence, listening to the clock. It wasn’t a doctor’s office but belonged to a specialist nurse. I remember thinking this was either really positive or really bad. Either my husband didn’t need a doctor because a nurse was sufficient, or it was so bad that the doctor wasn’t needed because there was nothing to fix.

In the months leading up to this appointment, we had already been told that he had a neuromuscular disease, and the internet told us there were hundreds of those. There was one, though, that stood out, but the internet also told us that his chances of having that one were really quite low. So, in that little room, there was a definite sense of hope, but also one of dread.

The woman who entered was calm and composed, and she smiled kindly at us both. She introduced herself and, as my foggy memory recalls, went on to tell him—well, us—that he had Amyotrophic Lateral Sclerosis (ALS), and she was very sorry about that. I don’t remember much of the conversation that followed, and if there was a box of tissues on the table in front of us, I would have only noticed it then, as all I could hear was my husband sobbing. The room, the woman in front of me, my husband, myself, and our whole world had, in my eyes, lost all its colour.

A black-and-white existence is what ensued.

In the months following the diagnosis, my emotions came in waves, and my brain and body, for the most part, shut down. I either couldn’t access the right emotions and felt numb, or I was overwhelmed by them. My employer mentioned that they thought I might throw myself into work as a distraction, but I gradually just tuned out. I shortened my work hours, got lost in thought during workdays, and essentially switched off. I felt like I was betraying him and the remaining time we had together by being away from him at work. Every moment had to count. We cried alone, and we cried together. We spoke about what we wanted and the dreams we would have to forfeit because of this diagnosis, and he gradually curated a bucket list, which included things as mundane as certain foods he loved, as well as massive life changes like having a child. It goes to show what we take for granted in life. An ALS diagnosis is a death sentence, but it is also potentially a long sentence on “death row.” Something like 2-5 years was mentioned, but we were told to “do as much as you can now because he probably won’t be able to do a lot of things after the first year.”

I can’t speak for him, but even though we made some lovely memories in that first year post-diagnosis, all the wrong shades of grey surrounded my thoughts. I never thought it possible to feel sadness physically rip your insides out for days on end, but there it was. Even worse were the feelings of guilt for the sadness I was experiencing while he was still standing next to me. When I feel overwhelmed now, I think back to those days and remind myself how much worse life can feel.

In early 2013, I discovered I was pregnant. The first person I told when I suspected was my therapist because, no matter how overjoyed I would be if that test came out positive, I knew I would need help to figure out how to cope with the brutal knowledge that I was actually bringing a child into the world potentially as a single parent. That my child might not grow up to know who his father is, and even worse, might inherit a gene that could kill him. I knew I could voice these issues with my therapist without receiving judgement or influence. During that appointment, I was able to adjust my perspective on the prospect of becoming a mother and find only positives in what seemed like a tragic situation.

While I took the pregnancy test, my husband was on a telephone call to the hospital to receive the results of a genetic test to determine if it was the “sporadic” form of ALS or what they consider “familial ALS.” I didn’t leave the bathroom until I heard him hang up, and by that time, I could see the result. “You first,” I said. He told me it was considered sporadic and that our children were unlikely to ever have it. I told him I was pregnant, and silence fell between us. Another of those twisted moments where fear and elation are intertwined. What on earth do you do with that?

With the hope of new life growing inside me, strands of colour started to seep back into my world. I enjoyed being pregnant and began to focus more on myself, moving more and watching what I ate. I was kinder to myself because I now felt I had a duty—to take care of this most precious gift, a piece of my husband I knew would live on.

I spent more time with myself. I saved my tears for the train ride to work every day. It turns out strangers are scared of crying pregnant women, and this suited me just fine. I found my own ways to cope with what I was going through. Nobody ever told me I was grieving—just that the way I was feeling was a result of my situation and that I should deal with it. I saw my therapist once a week for as long as possible, and I thought that was enough. My journey since then has taught me I needed much more in the form of support.

That was twelve years ago. My boy just turned eleven, a perfect image of myself and his father. My husband, now my ex-partner, is still living with ALS. What a crazy f-ing achievement that is! In my eyes, he turned that diagnosis around. His strong faith and will to live with a disease that is destined only to destroy astound me daily. He is an example of a strong mind and a strong man, and I’m proud that our son has had the privilege of getting to know him so well.

There are many forms of loss, and with those come many variations of grief.

The anticipatory grief I started to experience on that day in September 2012, that monochrome moment—was the moment I unconsciously began my farewell to my husband, to the life we had, the life we had hoped for and planned, and to the person I thought I would be.

His journey is still not over, and even though romantically we have gone our separate ways, my grief is carried with me still.

I cannot predict how my grief will change when he finally passes, but I know that it will. It will change form and manifest in my mind and body, and I will be there, ready to embrace it and carry it with me in its new form.

My turn to coaching has its roots in this part of my story. Coaching others has become my purpose, emerging from my own grief. However, this is not the only way my life has changed and progressed through loss.

Grieving is something we all experience, and each of us navigates it in our own way. For the most part, we rise and continue with life once we’ve made space for grief, because we are resilient and remarkably skilled at shutting out the most difficult, heart-wrenching moments. But when the world turns monochrome, and we’re fortunate enough to have someone by our side to witness our loss, acknowledge our story, and help us forge our own path while caring deeply for our needs, beautiful things can happen. This is what I now offer others.

My journey of self-care over the past twelve years has been jagged, full of trials and errors, but here are some of the practices that have worked for me and that I continue to maintain. I’m sharing these not as advice, but as a resource:

- I found an English-speaking therapist (I live in the Netherlands).
- I journal regularly.
- I take time out in nature.
- I’ve found a powerful support group of women.
- I move more—yoga, gym sessions, walking—basically anything that helps me reconnect with my body.
- I cherish my friendships. For a while, I cut myself off from them as it was too painful to watch them move on with their careers, marriages, and second children... it just became too much.
- I’ve explored new hobbies, from growing vegetables on an allotment to drawing weird squiggles.
- I’ve formed new bonds and relationships. I started dating again a few years ago and have had an amazing new partner for almost a year now.
- I changed my career and started a business.
- I’ve participated in fundraisers for ALS and done a lot of volunteer work in my community.
- I maintain ongoing contact with my child’s father.

I would be so appreciative if, after reading this, you would share your own experience or even just one thing that has helped you on your grief journey.

Much love, 

Alexis

August 2024 - The Loss of a Pet

This month, I am starting with a topic very close to my heart.

At midnight on July 17th, we tragically lost our beloved cat, Ziggy. Born with a heart condition, Ziggy became tired quickly but had a great love for food. Yes, he was a big, chunky cat, which no doubt contributed to his heart failure at the tender age of seven. He was lovable and my son's very best friend.

As I drove to the animal hospital in the middle of the night, my autistic ten-year-old son sat in the back seat with his bestie, calmly documenting his symptoms and reminding Ziggy that he was loved and that we were there with him. While he documented, I realised that our lovely cat wasn’t going to make it out of the car, but I didn’t want to say anything until I could check on him myself. We drove into the hospital parking lot, and upon opening the back door, I saw a limp paw sticking out through the carrier. I carefully pulled him out into a blanket, which my son helped wrap around him. A last sigh of air escaped his body as I stood up to take him inside. At that moment, I became totally winded and breathless too, but I was still standing. I broke. My poor baby cat. My poor son. Why has this happened to us?

I was so absorbed in my own feelings of loss that I forgot my son was there, quietly sobbing, frozen standing next to the car. “I’m so sorry,” I kept saying to him. “I’m so sorry.”

The vet took Ziggy from us and came back within a few minutes to confirm he was dead. They told us he died from heart failure. After taking some time to say goodbye to Ziggy, we headed back to the car with the blanket in hand. We cried all the way home. My son howled through the night, inconsolable.

The next day, we were due to go to the UK on holiday, hoping the distraction would help. It seemed to help my boy, but I was haunted. I felt, and still feel, incredibly guilty that I did not keep Ziggy on a stricter diet, even though the vet said it wasn’t my fault. This will forever haunt me. My son has also communicated he has a feeling of guilt but he can't figure out why.

A couple of days ago we returned from the UK, and of course, Ziggy wasn’t at the door to greet us with his leg rubs and sweet meows. The house felt different, even though it still holds another cat, who, upon our return, was also looking for his friend. Guilt again. Now our other cat, Obi, must feel so lonely.

I’ve been having bouts of tears since we arrived home. My son says he “doesn’t like big feelings” and tries hard not to cry, requesting I leave the room if I tear up in his presence. He is keeping himself busy with other activities but together we have made a little shrine for Ziggy with his paw print, a picture, and his favourite toys. My son did this with thoughtfulness and care and I am astounded at how he is moving with his grief.

I’m in my forties and have lost many pets over the years, usually due to illness or old age, with the vet ultimately intervening. This was my first experience of losing a pet without intervention or finding them already passed, and it was my son’s first big loss. Losing a pet is often a first experience of loss for children. How we support them in this process can help them with future losses and their understanding of death.

Take a moment to think about your first loss and how the people around you dealt with it and their actions toward you. It might not have been a pet but perhaps a grandparent, an aunt or uncle, or even a parent.

As an adult now, would you behave similarly, or would you act differently? How would you have liked to have been treated back then?

What we often hear is that adults seem to forget about children or believe that death is too sad or “grown-up” for little ears. They strive to go on about life as normal and avoid talking about the loss until so much time has passed that it would be a strange subject to bring up. What then becomes of those withheld emotions and feelings? What thoughts did we have as children when our questions were unanswered or we didn't feel like we could ask them at all?

The big question is: Is it really about the “little ears”?, or has the child within our adult selves never been taught to deal with such big emotions around death and bereavement?

I’ll leave each of us to reflect on that question. If you’d like to chat about it, I’d love to hear your thoughts.

I don’t work with children in my practice, but you learn a few things along the way. Here are some ways I’ve handled our current loss, these are of course personal choices according to our own journey of grief and unique family situation:

• While I respect my son’s dislike of big emotions, which can be extremely overwhelming for him, I deny his request for me to leave the room when I am shedding a tear. I communicate my feelings to him, letting him know that I need to cry right now, and in a few minutes, I’ll continue with my day. Taking time to experience our emotions and demonstrating that they are not fixed but pass through us is an invaluable life lesson for our children.
• I have actively engaged my son in the process of remembering his cat and deciding what he would like to create to do this. My son collected Ziggy's favourite toys, and we are choosing a picture together to get printed. Creating rituals together allows conversation to happen and helps the grieving process.
• When my son wants to talk about Ziggy, I stop what I am doing, sit with him, and actively listen to his stories and memories. We often end up laughing and reminiscing about the silly things Ziggy did. Telling and retelling stories are an important part of integrating a loss.

A good friend of mine, who lost her dog recently, said, “With a pet, you only have good memories. They never let you down and just love you unconditionally and purely.” I couldn’t agree more.

To some of us, pets are valued family members and hold space within our lives. Our brains are hardwired to see them every morning, to care for them, and to receive love from them just like any other family member. When a pet dies, it can take time for our bodies to realise they are gone, even though we know they are no longer with us. 

If someone you know has lost their beloved buddy, it’s important not to dismiss their feelings of grief and to give them the space to talk about it just as you would if they had lost another family member.

I’d like to dedicate this reflection to Ziggy, as well as Charlie, Sweet T, and Clyde, who have all crossed the rainbow bridge around the same time.

If you need support during your time of loss or want to share your story, please feel free to reach out. I am here to help you navigate this difficult journey.

Alexis

Next month I will share my story about a loved-one receiving a terminal diagnosis. Until then x