No Stress, Just Play

My husband and I attended our first Indian wedding this weekend. The best thing about it was that it was a bubble in time. Everyone was so colorful. The music was fun and forced you to dance (as much as I could.) Getting all dressed up in brand new... everything made me feel like a little kid again playing "dress up." It was a joyful celebration and we were honored to be included.

 

It is so easy to let fear and rage take over my life these days. Between sickness, my mitochondrial dysfunction and the obvious... politics, it felt like my brain just slipped into a warm bath. I felt rejuvenated and hopeful. Nothing is better than the celebration of love.

 

My mom commented that she's never seen my husband look so happy as he did in the photos from the wedding. I have to agree. Its been a long time since I saw him smile that big and let loose. There wasn't even alcohol. He was just really that happy. I love it.

I danced too much and paid the price, but it was worth it. It felt so good to get out there and move to the music. I miss that. And I can't remember the last time my husband and I danced with each other. Moments like that are sacred.

As the world surrounds us with hatred and chaos it was good to remember that there's still love. People still falling in love. Having parties. Dancing. Eating cake. Coming home from the hospital (* YAY MOM!) Kissing, hugging, making art, taking trips, watching puffy clouds that look like animals. Life is still magical. I just have to pay attention and celebrate being alive.

learn from the animals

To say that life has been stressful lately is an understatement. We're in a war against Iran. We're lead by an insane, murdering nazi, prices for everything have gone beyond sky high. Now we're in the stratosphere. From food to gas, most people are struggling. Women and LGBT people are actively being targeted, assassinated and having their rights taken.  

I feel angry, fearful, panicked and heart sick. 

But I can't feel that way all the time. Like the bombed Lebanese smoking a hookah amongst the ruins of what used to be their home. Or the teacher playing music inside the remains of a destroyed school. Art, music, laughter and love will always drown out the hatred of evil.

So I have been...

Making art. Making time for friends. Taking care of my body. Keeping up with my medical appointments. Loving on my puppies and trying to help people I love not feel overwhelmed.

My son is constantly stressed to the max. I think COVID really broke him. Now he shuts everything down with a "no." He struggled emotionally before all of this happened, but it has really become worse. His anxiety and depression don't seem to be at all touched by his medication anymore. 

After a recent breakup (where she broke his heart.) I took him to a town close to us for a break. I found this beautiful park with a massive pond and we just sat there and watched.

 
As I soaked in the beauty of the spot I could feel my shoulders soften from up around my ears. The tightness in my chest relax like a rope being untied. My breathing become deeper and more fulfilling. Changes that I wasn't even aware I needed.

Nature is a tonic for these times. And I need to remember that. Hug a tree. Swim in a lake. Look at birds. Go slow with my dogs. Nature is the best teacher of all. She can be vicious. But there is also a lot of love. She is slow moving. Slow growing. She takes her time when she's healing. 

The animals teach us as well. They too go slow. Enjoy the little things (like eating the same food for breakfast AND dinner.) Make time for play. Show each other new things. The old teaching the young.

Spending time in my garden has also been helpful. I think of it as an "earth detox." Where I just pour out all my stress and worries into the soil where it is composted like dead leaves. 

I realize I'm very privileged. I can afford the things I need. I don't live in a country that's being constantly bombed. The people I love are still alive and well. I'm not rotting in an ICE detention center. I'm in a healthy, loving relationship. I have a lot of resources and options. I'm a rare minority in the world.

I can hold both things. Both can be true. I can be sensitive and aware of the horrors of our time. While also healing myself in art, nature and love. I can take care of myself with food and movement and also be aware of my tremendous privilege. I can morn the lost rights of women, the disabled and people of color, while also laughing with my friends. 

It's not easy and it comes with practice. I think my background as a therapist is hugely helpful. But every day I try. Luckily I have my two beautiful puppies to lead the way. 

 

slowly learning

I'm 53 and still slowly learning what my body needs. Especially since becoming severely disabled. That was (of course) a game changer. I've always been the person in a group to take care of everyone else. The person who thought of everything and planned it all. The first to arrive and the last to leave. Well no longer. Now you can bring your own Excedrin because I travel light. 

Out with good friends.

I feel very proud of myself. We had company last weekend and I really listened to my body and what I needed. I let my husband plan everything start to finish. Some examples of changes I made are:

• I did Karaoke the first night. It was an energy stretch, but I rested before and ate healthy right before.
• I rested the next day at my usual time. I also had coconut water, a V8 and lots of regular water. Again, I chose healthy whole foods to eat.
• The third day I went to the gym and swam with my mom. Just went about my business while my husband hung out with our friends.

For me the gym has become non-negotiable. Just like a doctor's appointment. I feel so much stronger and healthier in general. My mom does too.

Day two. Out for veggie sushi with friends post-nap.

I'm also learning I have a lot less pain when I avoid sugar. Easier said than done.

If I stick with whole foods I feel my best.

Using my tools and researching new ones has also been vital. For example. I've been having killer heel and achilles pain for a while now. All the exercises to stretch it out were just making it worse. That's because it's not just achilles tendonitis. It's Insertional Achilles Tendinopathy. What a shocker. One of the causes is "muscle weakness" in the foot. Stretching will just make it worse and more irritated. I learned instead what I need is shoes that elevate my heel and point my toes down.

My first time at Karaoke. It was such fun.

I only have one pair of shoes like that. Flip flops that I nicked off my mom. But I ordered some inserts that I can put in any shoe I like. That should be really helpful. I'll also keep off it in the pool. No more stretching that foot or kicking off the side when I swim.

This is all literally the opposite of what my muscular neurologist told me to do. Sometimes the doctor doesn't know best. Right away I was feeling relief when I put on those flip flops. Now I need to break my habit of walking barefoot around the house. Dang.

Point is, I'm learning to trust my intuition. My inner voice. Myself. Learning from my mistakes and caring for me. Putting myself first over the discomfort or inconvenience of others. And that's no minor thing. 

Making an Effort

I'm realizing there's a very good reason why most disabled and chronically ill people complain of loneliness. It's because friends don't like to be the one to make plans. I'm not sure how that works if EVERYONE is like that. Actually I am sure. It doesn't. Friends fall by the wayside until they vanish completely.

My husband is my best friend.

Of course there are the rare exceptions, but those tend to be family members. It's the very rare friend who will be the one to make the effort to keep in touch and suggest plans.

My mom is my best friend

I have also come to terms with being that person with my friends. If I want to see them EVER than I have to be the one to text, call, suggest SPECIFIC plans... (that's the key, they have to be specific.) And there are a lot of people in my life whose company I enjoy enough to make that effort. And those who I don't.

The person I call my best friend is one of those people who would make an effort even if I was ill and couldn't do it myself. That's one of the reasons I say she's my "best friend." She's reliable, funny, fun to be with, smart, a feminist, doesn't hound or smother me, makes plans and asks me to join her. All qualities I admire. 

My best friend and my mom helped throw me the best birthday party ever.

She's also anxious as hell. Complicated. A contradiction. Traumatized and stubborn. Not all bad qualities. I think of it like a dessert. If it was too sweet I couldn't have much of it. People need balance. 

I also admire how important her heritage is to her. She's half Samoan and half Italian. Funnily enough her Samoan half seems more important to her. But I get it. I value my Italian heritage even if it is much less than my English or Irish genes.

I find now that I have my sisters in my life and their very large families it leaves less time to spend with my friends. But I will always make time for those who enrich my life.

What Matters Most

Time is a finite resource. It's vital to make the most of it. And I don't mean I should be rushing to get as much done as possible. But I can use some help prioritizing what is most important in my life and spending my time there.

I'm feeling medical burnout. Even though I have an EEG scheduled for tomorrow to check into the whole "You're having silent seizures" news. This year I really don't want to prioritize medical care. Endless appointments where everyone says the same thing and it doesn't help much. 

I'm also feeling done with spending time with certain people. Like my in-laws. As much as I love them, I just don't want to spend time with them. I don't particularly enjoy their company and they don't have much to add to my life. In fact, they feel like work.

The only person who is work who gets to stay in my life is my son. That's it. I have no time or energy for anyone extra.

I spent a lot of time with friends this year. More than I can remember for ages. It was helpful to weed out who adds to my life and who doesn't. Everyone has hard times and good. I don't expect rainbows and sunshine constantly. But I want an overall positive reciprocal relationship with my friends.

So with all of this in mind. Here are my priorities for how to spend my time this year.

2026

1. Taking care of myself. Mentally and physically. Yoga, swimming, dancing, moving, sleeping. Doing what I need to do to feel good and be happy with myself.
   
   
2. Spending time with my mom, my dogs and my husband. Enjoying them and just living life together.
   
   
3. ART. Being committed to spending time on my art, whatever that looks like. Clay, doodles, painting, henna, crafting, drawing...
   
   
4. Live my values and drop people who don't share them. Animal welfare, feminist issues, slow fashion, commitment to people I love. All of these things matter a lot to me. I don't have time for people who live their lives blindly.
   
   

My mother just threw me the absolute best 53rd birthday party. It was women only and filled with such positive energy. I could tell we were all very thirsty for such an occasion. It was also an excellent way to start off a fresh new year. Showing me the potential of all of the women in my life and how powerful we all are together.

More of that this year please!

TWO CAKES!!!

What 53 looks like

How Lucky Am I?

It can be hard to remember how lucky I am right now, given the political world. But in many many ways my life has never been better. And since nothing lasts forever I really want to remember that.

I have my huge family around me. 

I didn't always have a very good relationship with my mother. In fact we didn't talk for 15 years (my choice.) We have since reconciled and she lives right around the corner from me. I love it. I get to see her many times a week. We always have such fun together. Laughing, talking, just being together. I love her and am so grateful for all of the time we get to spend together.

My half sisters and I have found each other five months ago, and we now have a relationship. I have always wanted to be one of three sisters and now I am. Something I thought was previously completely impossible. I love them and I love their children. I am the "Auntie Nette" to four stunning boys and one fiery girl (who will take no shit from anyone. Especially not boys.) 

The brood

Me and my little sister

Me and the middle sister

I have a best friend who is kind and lovely. She adores animals, is a fierce feminist and warrior woman. She is also chronically ill, so she can relate to me on a different level than healthy people. We've only been friends for a few years but we are incredibly close. I know I could count on her for anything. That is rare.

She got married this past Monday

My husband and I are very best friends. He cracks me up and makes me feel so special. So seen and heard. We have a very rare bond. I'm thankful we met so young so that we've been able to spend so much time together we're going on year 32 right now. My soul mate.

My son just called me his "confidant." That melted my heart. He also lives right around the corner. Something I'm incredibly grateful for. I appreciate our closeness and that he's as close to me as he can be to someone whose not his partner. I get to see him almost ever week. I love him very much.

He just turned 31 this week

My two dogs fill my world with sunshine and howls of laughter. Peels of laughter daily. They also fill my heart and my bed. Hahaha. I can't imagine my days or nights without them by my side. Often sandwiching me like the little pack that we are. 

My life is bursting with love everywhere I look. Every nook and cranny full to the rafters with people and animals who love me and who I love back. This is the first time in my life I can remember feeling this way. I want to savor every moment of it and keep them all safe and with me as long as I can.

Camping? Not in a tent!

Tent camping was on my "mobility bucket list" since I regained my mobility. I had never been and I was excited to try it. I had visions of star filled skies, s'mores and peaceful sleep in the fresh air. What I hadn't factored in was the frigid c-o-l-d we would endure.

I have a dear friend who knew I was excited to try this. She and her partner camp in their "too adorable for words" van. Where I might add they remain snug and toasty as two bugs under a rug. They secured us an "impossible to get" camping place on a coveted beach. I was thrilled. Being part mermaid I adore the ocean and go any time I get the chance. I agreed we would join them. 

My husband, two dogs and myself in a two person tent borrowed from my in-laws would join them... On the beach... In April... See where I'm headed?

I think whoever came up with the term "The good, the bad and the ugly" was talking about tent camping. 

It had...

THE GOOD:

The location was stunning.

The beach stretched on for miles.

The S'mores lived up to my expectation.

All the food that day was delicious.

The company could not have been better.

It was fun bundling up during the day and dusk.

The dogs loved it.

We got a lot of exercise.

The air was indeed crisp and fresh.

The stars were the prettiest I'd seen in years and years.

Our campsite was perfect.

The other campers were pretty quiet and respectful.

The tent went up quick and easy.

We didn't forget anything. (Ok... now I'm grasping for good things.)

THE BAD:

Public bathroom. Need I say more?

That was a TON of packing and unpacking.

Where am I supposed to change?

THE UGLY:

Asthma attack from the cold and fire.

We froze all night (the dogs were cozy and fine.)

Prison shower. No thanks.

The cold triggered my muscles to cramp and spasm all night.

It took me days to recover.

Margo hates other dogs and goes NUTS when she sees them. Do you know how many dogs are at a beach and go camping? She could be heard for miles. (Max was a dream.)

A dog walked by our car.

HOW DARE THEY!

All that fuss left a mark in the sand.

Technically I think I still haven't "tent camped" because I slept in the car. It was the only position I could be in where I could breathe. 

I think next time we'll say "goodnight" and book it to a hotel to sleep in. But it was great to have a brand new experience.

Social Diva

One of the things I hugely missed during the years of my illness was having a social life. I was able to have just enough, little tastes here and there, to make me wistful for my old days full of get-togethers. Mostly women friends, laughing, sharing our thoughts. I think friendships make us better. All relationships, but friendships especially. Friends broaden our ways of thinking and build our confidence.

Lately I have had a whirlwind of new and wonderful friendships. I met a woman through my husband's work who is delightful. We are very close to the same age and although we don't have a lot in common on the surface, we do underneath. I knew from the moment I met her that we are soul sisters. I enjoy her company tremendously and am grateful each time we are together that I have the energy for her friendship.

Recently we met her partner and to my great joy my husband got along swimmingly with him. This is our second couple friendship in less than a month. Where we love both people. Wow! That's incredibly rare. I feel very lucky.

Max got to come too!

This past weekend I was busy three days in a row. Something that would have been un-thinkable when I was ill. It felt rich. Like a bath in warm buttermilk, I felt enveloped and fully alive basking in the conversation and friendship of others. We are social creatures and I'm just beginning to realize how devastatingly isolating illness is.

Our California sunset. So beautiful.

 

My Colorful Life

Every day since mid-August (two short months ago) I pinch myself. I can't help but think "Is this how 'normal' people feel? Like allllll the time?" It baffles me. I can't remember a time when I had this... much... energy. Seriously. Not when I was a kid. Not as a teen. Not as an adult. I wonder how long I've actually had symptoms of this disease?

Here's what I've been doing with this new energy source.

• Friends old and new. Relationships outside of my family have been incredibly hard to manage with my crippling fatigue. It feels fantastic to be able to devote some time to my friends. And I've made a few new ones recently. Nothing I could have even considered before.
  
  
  
  
  
• Gardening. My husband said the other day that I've "taken over the entire garden." He said it in a good way. He's been incredibly busy. 
  
  
  
  
  
• Home decorating. My house was in need of a facelift. I'm in the process of painting our fireplace wall and getting my home ready for some company.
  
  
  
  
  
• Entertaining. Having friends and family in our home before was exhausting. My husband had to do most of the work. It wasn't unusual for me to have to leave mid-party to go and sleep. I'm looking forward to winter holiday entertaining while conscious.
  
  
  
  
  
• Working out. I'm enjoying the gym very much. I took a yoga class for the first time yesterday. I loved it, but not as much as Zumba. I'm a high energy person now and have fun dancing with a room full of other people.
  
  
  
  
  
• Max. Poor Max. Before he would be stuck sleeping with me all day. Now I walk him twice a day (weather permitting) and he's with me as much as possible. Just this morning I walked him around the block. Now he's about to come with me to the store. Later today we're meeting a friend for tea. He's my little "adventure buddy" and he loves it.
  
  
  
  
  
  
  
  
• My hobbies. My husband and I recently did a Raku workshop that was long and intense. It was also located on a farm. Not wheelchair friendly at all. Nothing I could have done before, even if I had the energy for it. 
  
  
  
  
  
  
  
  

I can't explain what it means to feel fully alive again. I didn't get my "life" back. Instead I gained new experiences, new relationships and a more engaging future. My life is richer. Fuller. It feels like the movie The Wizard of Oz when it goes from black and white to color. My life as a sick person was black and white. Now it is so full of color that it's blinding.

Surviving or Thriving

My husband and I have been checking in with each other asking if we are "surviving or thriving" on any given day. Recently I have learned that I answer "thriving" on days where I have been exceptionally social. This is shocking news to me.

I've always consider myself an introvert and that being with others drains me instead of charges my batteries (gives me spoons, fills my tank, gives me energy...) But what if I'm wrong? What if I actually thrive being with other people more often than I know?

Honestly I think like most things it depends on the people. If I'm with high energy people I thrive. If I'm with low energy people I might drain more quickly. Being empathetic I'm pretty sure this is the case. I mirror the energy of the people I'm with.

Recently I was able to spend time with some very high energy friends and I felt overwhelmed with joy. I savored every second of it.

I also got my nose re-pierced! So that's big news.