I'm My Valentine

 

A story just for me...

I once lived inside a life that made sense.

I had worked for years — through training, supervision, self‑doubt, and grit — to become a therapist. Not just in title, but in identity. I had finally reached the place where my skill matched my purpose. I was building a career I had earned with my whole self. I was helping people. I was steady. I was proud. I was beginning.

And then, without warning, the ground underneath that life gave way.

Brain surgery.

Mitochondrial myopathy.

A body that no longer behaved like the one I had trained in, lived in, trusted.

The loss wasn’t just physical. It was existential.

It was the loss of a rhythm, a role, a future I had already stepped into.

It was the loss of the version of me who could work full time, who could hold space for others without worrying whether my own body would collapse.

For a while, it felt like the old me had died and the new me had been left behind to make sense of the wreckage.

But that isn’t the whole story.

Because the part of me that became a therapist — the part that listens deeply, understands nuance, sees people clearly, and holds complexity with grace — didn’t disappear. It didn’t get cut out in surgery. It didn’t dissolve with the diagnosis.

It’s still here.

It lives in how I think, how I relate, how I make meaning.

It lives in the way I navigate my own suffering with honesty and insight.

It lives in the way I care for others, even now, even with limits.

My life didn’t end.

It changed shape.

The old life was linear — training, mastery, career, momentum.

The new life is cyclical — energy, rest, adaptation, creativity, resilience.

The old life was built on strength and capacity.

The new life is built on wisdom and precision.

The old life moved outward, toward clients and systems and goals.

The new life moves inward, toward truth, embodiment, and gentleness.

Both lives are mine.

The therapist I was is not gone; she is integrated.

She is the foundation I stand on, even if I stand differently now.

She is the one who carried me through the hardest years, who built the skills I still use, who earned the identity I still hold.

And the person I am now is not a lesser version — she is a transformed one.

She lives with a body that demands honesty.

She lives with limits that require creativity.

She lives with a clarity that only comes from surviving what should have broken her.

I am not living a replacement life.

I am living a true life. One that honors the before, survives the rupture, and grows in the after.

My story didn’t end when my body changed.

It shifted into a new chapter, one that is still unfolding, still meaningful, still mine.

Tides of Life

Nature teaches us so many important lessons, but most people don't pay any attention. The biggest lesson of all is not to become attached. Nothing is permanent. Nothing. We are a speck of algae afloat in an ocean so big we can't even see the edges. 

People chase youth like they haven't earned every laugh line and smile crease on their aging faces. We bleach and dye our hair and tattoo our faces to look ever younger. Slice and dice our beautiful, time marked skin to falsify ourselves.

I've never been a youth chaser. I like to do what makes me feel good. FOR ME. But not for anyone else. Our youth is not permanent. Even how our face looks today, this very moment. It will never look that way again. We are ever-changing creatures.

This was me in my 30's

Here I am at 52.

There are many times in history where I would be dead, or considered a super-elder. A wise woman in my tribe who outsmarted death. In today's society I'm just "middle aged." Or as my precious husband likes to put it "A Woman of a Certain Age."

I feel I laugh more, smile much much more (I used to be super conscious of my teeth. Now I'm just happy to still have them.) Forgive quickly. Help without question. Love harder. Hug longer. I truly appreciate each day and have nothing but gratitude for my life.

I should have died a handful of times over. Without modern science I would have. Each day is precious to me. I know that nothing lasts for ever. Especially not my fragile existence. Definitely not my outer beauty. And I'm ok with that.

My Hindsight Is 20/20

When I first started this blog six years ago I was terrified. I felt like my whole body was failing on many levels all of a sudden and I didn't know why. Feeling like I had no control over what my body was doing was very scary. 

Looking back I can see little threads of struggles all through my life.

I was a very tired kid. I had serious sleeping disorders. Nocturnal panic attacks, sleep walking and talking. I fell asleep at school frequently only to be woken up by an annoyed teacher. I always had "growing pains" in my legs where my legs would just ache for no reason. My mom even took me to the pediatrician for pain in my legs. I remember it being dismissed as "growing pains" (which are not a "thing" anymore thank God.)

My back hurt almost all the time. When I would be roller-skating with my best friend (a favorite activity of mine) I would need to take breaks and she would rub my back for me. It was one of those things you don't know is abnormal because it's all you've ever known. Looking back now I see red flag after red flag that I had some kind of health issues happening.

As I grew so did my strange health symptoms. I had endometriosis so severe that I had five laparoscopic procedures to remove abnormal tissue by knife and laser. It grew on my bowels, bladder, intestines, uterus, ovaries, pretty much everywhere it wasn't supposed to be, causing me incredible amounts of pain. Now we know so much more about it and what a serious disease it is for women. But back then the male ER doctor just smirked at me insisting I had an abortion when I wasn't even sexually active. 

My thyroid failed, then my gallbladder. I had mysterious Fatty Liver Disease and just felt tired and drained all the time. I struggled to live a normal life and work 9-5. My physical stamina was never the best.

My one child was diagnosed with Autism very young. Researchers now know that women with autoimmune diseases are much more likely to have Autistic children. 

I had many moments before any official diagnosis or my brain tumor where I just felt like "I can't do this anymore. I can't go to this (class, job, meeting, coffee...) I'm just too exhausted." I'm not sure that's actually normal.

This was all before the TB. Before the craniotomy. Before I needed any mobility device. So was this just a sneaky genetic malfunction that has always been with me? Or did my propensity to health challenges hurtle me down a spiral of worsening issues? It's interesting to look back and follow the threads. Regardless of the causes, to me it looks like one massive web.

Giving Myself Pleasure

The big goal for myself this year is to spend more time in my own company. To explore myself and my personal interests now that I can't hold a traditional job. A job that used to fill 90% of my life, mind and time. 

I have started journaling again. Something I find very helpful for sorting out my thoughts and feelings. Writing with a pen also stimulates my mind in a very different way then blogging. To me my blogs are more of a guidebook that I can easily look back on for reference. My journal however is completely personal and private.

I'm once again growing out into and finding out what gives me pleasure. Here's just a sampling...

I used to look at taking care of myself as something I must do and that I had no choice in. This year I have changed that thinking to be something I'm fortunate to be able to do. I'm lucky to have the time and resources to take very good care of myself. So when I actively choose not to (by not doing my stretches or eating something that's not a good choice for my body) it's an insult to myself. It's my privilege to care for myself, not my obligation. I find that mindset much more helpful.

It helps me mentally to have my home reflect our families playful side. We have a lot of interesting collections and it's fun to create little curio displays around the house. I love having a playful home.

It's not just the visual side of my home that's important to me, but the scent as well. Fresh coffee, flowers, scented candles, a fresh fire log burning. All combine to make my home inviting, warm and cozy. And since this is where we all spend the great majority of our time since last year, that matters to me.

I could fill volumes with what I have learned from sharing my life with dogs. My sweet puppy is a "super senior" now in the twilight years of her life. I treat each moment I still get to spend with her as a great gift. Just watching her gives me endless pleasure. I'm thankful to be able to have had the opportunity to give her (and her sister's who went before her) such a good life.

I love to try new things, especially when it comes to decorating our teeny tiny home. Right now my work in progress is turning one side of our hallway into a giant wall of mirrors. I was gifted two unique, beautiful mirrors by my mother and three more from my sister-in-law. It has been a very fun project that's not over yet.

I love jewelry. It is one of the greatest passions in my life. I used to wish Elizabeth Taylor was my mother just so I could have her jewelry collection. Her daughter probably didn't like jewelry because that's how those things usually work. Just like my mother is not into jewelry at all. Go figure.

It's more than jewelry to me though. It's a story. So vintage jewelry holds a special place in my heart. It's like a sliver of time with an unknown history that gets to belong to you. I imagine the people who owned it before me. Their lives and their stories.

Stories have always given me pleasure. Even the hard ones, which is one of the reasons I loved my profession so much. But now I'm focusing on my own story and my own meaning in life.

My mobility history

My electric wheelchair "Dory" just had her latest round of updates. She got a new battery, new battery cables, new smaller seat pan and a new cushion. During the update before that they installed the equipment needed to make her tilt on command, installed leg abductors (to help keep my knees together) and a taller headrest. As my needs change, so she changes with me. 

These changes got me thinking about my history of mobility aides and all that I've been through in just two short years. 

"Meg" was around $120

I remember the day that I knew I needed mobility help. I was with my family in IKEA and I just couldn't keep up with all the walking. Instead I went from chair to chair resting as much as I could. I felt horrible and I knew there was something seriously wrong with me. I was right! Not only did I have Metabolic Myopathy at the time, but I also had a brain tumor. 

I shared with my husband that I needed a walker with a seat and we bought "Meg" that weekend. I still use her, but mostly for watering my plants or brining things inside my house from my car on my own.

"Shirley" was around $100

I bought this wheelchair on my own for bigger outings like going to an art gallery or being out all day. I still remember it getting stuck in an antique store and my husband accidentally almost dumping me out of it. Hahah! "Shirley" sucked going over anything other than smooth cement.

She was light enough for me to push myself and almost use her light a second rollator. She also collapsed and fit in our car nicely. She wasn't comfortable to sit in for very long though and really was made to "transport" people inside their homes or a hospital.

I still have her, but I will happily give her to someone who needs a transport chair.

"Dory" was $16K (but insurance covered it)

Getting my insurance company to pay for my electric wheelchair wasn't easy. UNTIL I was diagnosed with a brain tumor, then it went pretty quick. I got my chair "Dory" one month after my brain surgery. You can see that by the time I got her I was happy to have a new tool of independence. I still remember the feeling of climbing in and taking right off. The feeling of freedom and independence!

"Arial" was $3k

"Ariel" is my travel wheelchair. At the time my company was planning a trip to Hawaii in January and I needed an electric wheelchair. I also thought my husband and I might be able to travel more in the future. She is an incredible chair for travel.

Ariel was essential for the years that we didn't have a wheelchair van. At just 55lbs both my husband and son could get it in and out of our regular car trunk. Now that we have our van "Pablo" I keep her at my Mom's house as a backup.

"Pablo" was $61K

And here is our biggest tool yet. Our wheelchair van "Pablo". Having him enables me to always use Dory. It also gives me independence where I don't need my son or husband with me all the time to get my chair in and out of the car for me. 

Dory is the only thing our insurance has covered. Being disabled is insanely expensive. I'm very grateful to have a good primary care doctor who fights for me and a husband with a good job who knows how important it is that I have the right tools. 

How Dory looks today.

Current modifications around another $30K

(covered by insurance)