Thriving

What is the difference between surviving and thriving? 

I asked myself today "Am I going day to day surviving? Or am I thriving?" The answer is complicated.

First I turned to the all knowing oracle of our times. Google. I think it's fun to ask deep questions and see what pops up. Much like a Magic 8 Ball. "Oooooooh all knowing Google. What lies at the depths of this question..." (((SHAKE SHAKE)))

Surprisingly Google had a good answer. Or make that Empowerwomen.org had a good answer. Although one I don't 100% agree with. "Surviving is doing what is necessary to live." I agree with that part. "A thriving mindset is defined by continually challenging oneself." I'm not sure about that.

To me personally the big difference isn't in challenging myself, but in growth. Surviving is making it from one day to the next intact. I for sure have my survival days. I know I'm not alone. I think of all the people across the world who are simply surviving right now.

However, Like Viktor Frankl I believe it is possible to thrive in any condition, no matter how hard, oppressive and awful. Most days I feel like I am thriving. I'm continually attempting to better myself. Better my health, my mind, my attitude, my relationships with loved ones, my body, my home... Thriving to me personally is a continual growing process into a better and better Antoinette. 

A kinder me who is as healthy as I can be, softer with my words, respectful of others, spending my time on important things, giving people (and pooches) my love, actively listening to others... all of these are things that make me feel like I thrive.

It doesn't have to be travel or a paycheck. I don't have to save lives or run a marathon. I just have to do my best and be my best. I am growing, flourishing, expanding into my own human potential. And I feel like most days I am thriving.

Independence

 

Independence has always been a very big deal to me. My family is quick to tell stories of a little me politely declining help with a loud "I CAN DO IT MYSELF!" Some things don't change.

My independence is why I have an electric chair rather than others pushing me. Well... that and my penchant for motion sickness if I'm not in control. It's often why I push myself much harder than I should physically. There's just such reward for me to do things independently. There's nothing like it. That feeling of accomplishment that never comes when I ask for help.

This is the reason I'm working hard to make my home as user-friendly as I can. It's vital that I keep that feeling of independence for as long as I can. Here are a few projects going on in my house right now. 

My husband built this beautiful space for raised pots, then we'll build out the walkway up to our door with cement stones to make more wheelchair space. There's room for me now, but it's tight. This will be a huge improvement (and it still looks good).

We used to have a towering bookshelf here, but it got moved this weekend because it was a little bit in the way of me getting out the front door. AND my husband was worried I'd hit it and kill myself (with shit falling on my head.) It was a valid concern. Seeing as I refuse to die such a stupid death it seemed wiser just to move the damn thing. So now it's a very improved landing site for my purse and all my Sweetie's needs. Plus now I can reach all of this from my chair. Before I couldn't. Win-win for everyone!

Due to the itty bittiness of our galley kitchen we've always had our beautiful dishes out on a shelf. But now it's great because I can easily reach what I need without getting up. Same goes for our printer that until recently was hard to access. Accessibility = independence.

Can you spot the "black tower of death" in the corner? That was the shelf that got moved in the previous picture. 

This is the best change yet. I'm working on moving all of my clothing out of our closet and onto the walls. My husband says "You have a real thing for hooks." It's true. Because they are WAY easier and take less spoons than anything else. They also come in a huge variety of cute colors, shapes and sizes. This is still a work in progress, but I think it will look great and be super useful when we're done creating it. 

Making my house work for me is a big goal right now. Thank goodness I have family on board who supports me with their energy and money to help make my vision come to life. That's the kind of help that's always welcome and appreciated. 

Brain Fog

There are many symptoms that go along with my mitochondrial myopathy, but one that I find to be rarely discussed is brain fog and short term memory issues. It's one of the many reasons I can't work anymore at the job I used to do.

"The highest concentration of mitochondria are in the nervous system, brain system, and the spinal cord. For this reason, the most commonly experienced symptoms are of a low functioning brain or nervous system. This might present as brain fog, memory issues, poor concentration, mood swings, and sleep challenges."

Or even more cheerful news...

"The symptoms of mitochondrial myopathies include muscle weakness or exercise intolerance, heart failure or rhythm disturbances, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures." (from NIH)

My migraines can also cause some memory issues, so I unfortunately get a double whammy. My memory becomes much worse as my body symptoms increase. This means if I'm battling an illness or even just having an asthma flair because of the weather, my brain becomes very "foggy." This is the perfect word because I do feel like I'm behind a fog. Like I'm a few drinks in (which is one of the reasons I don't drink alcohol).

My auditory memory is especially affected. Recall of recent things (working memory) is very challenging for me when I'm feeling this way (like right now. Thanks crappy air quality!) My family are all aware of this challenge for me and are sweet and patient. My grandmother suffers from severe dementia, so this is a very scary symptom for me.

Like all of my symptoms there seems to be very little that I can do about it. I take my supplements and push through regardless. Since it is an invisible symptom though it can be hard for me and the people who love me to remember and address. I can get quizzical looks of disbelief when I can't remember something very simple, even from my family. It's understandable. I'm young(ish) and "shouldn't be having challenges like this." But it is a part of my muscle disease and I have to remember to be kind to myself when it happens. That's something I still find challenging. 

Thank you to this girl on Instagram who talked openly about her memory problems with her Mitochondrial Disease today. It's always helpful for me to find others who have similar challenges. 

Processing Grief

I lost a lot when I became disabled. 

A big part of my identity was wrapped up in my job. No... my career. It felt like I had just barely scratched the surface of a huge part of my life when everything was turned upside down. First by my muscle disease that cause my energy and mobility issues, then again by my brain tumor that left me with potentially life long side effects.

I am very resilient and landed quickly on my feet. I also have fantastic family support. However I don't think I entirely processed what had happened. I feel like I was just taking it one day at a time in survival mode going from one medical appointment to the next. My identity as a helper of others had been turned around completely and now I was the one in need of help. 

I realize now that the dust has settled a bit (and even though that we're still in a global pandemic) I'm finally processing what happened to me. It was very shocking, completely life changing and horrible. Now I'm having to grow my other identities (and dust off old ones, like being an artist) to rebuild myself. 

A Sharpie drawing I did for my Mama

One thing that hit me hard this weekend was that I had been feeling entirely unattractive. My sexuality had been smashed along with my confidence. Not very long ago I was a full time wage earner, busy but invigorated. Now I feel like a "fat, old crippled lady." (My words)

Of course one fix is slow. Weight loss (which I REALLY need to take more seriously!) The other is my sexual confidence. When I look good, I feel good. But let me back up.

For the last 7 years (since I turned 40) I have flirted with my "natural" hair color. I had been a life long dye addict and was curious what my real hair color looked like. So began a very long repetitive process of growing my hair out, coloring it, then whacking it short to go back to my natural color. After my brain tumor I tried out Henna and shunned the drug store box because of the chemicals. But that was a long process that was also very messy.

Well, this weekend I decided to color my hair again. Not henna, but not the drugstore box either. I went with a natural botanical brand of permanent dye and I picked "Licorice." I wanted a black vixen look like Elizabeth Taylor. 

My Mama took me to our local co-op and they had just what I was looking for. Then she colored it for me at her casa. I actually really love it and do feel much sexier and confident in my looks. It's silly how such a little thing can help me mentally, but it did. 

For me this was less about dying my hair and more about regaining some much needed body autonomy. I often feel like my body runs the show and I'm just along for the ride. This time I took the (black) reigns and got some control back. I also happen to think it looks great, which helps my self esteem. All that for just $18. 

I know I'll continue to process and grieve for what I lost, while being aware the whole time of how very lucky I am. My feelings aren't exclusive and I give myself full permission to feel both.

Facing Down Fear

I have signed up to take my license exam. It's the final step to becoming a fully fledged Marriage and Family Therapist. This is what I've worked so hard for over the last 10+ years. It's a very big deal and what was supposed to be the climax of my academic career. But it doesn't feel like that now.

It has been 11 months since I left my job because of my many chronic conditions. In the end it was the unrelenting migraines that were just too much for me to work through. This was my dream. To get my license and to help people and I'm still convinced I can do that in some capacity in the future. It won't look how I expected, but when does life ever work out how we plan?

Millions of people around the world have had their future plans completely derailed by Covid. Just because my cause is different doesn't make my situation any more special. Life is nothing if not unpredictable.

It has been very hard for me to study. Every question reminds me of my past work with clients and what I had to give up. I know that will fade the more that I study. I have five months before my test to work through my feelings and learn the questions. I've accomplished much harder tasks in the past.

I can almost hear the Helen Reddy song that my Mother would sing when I was little. It's very fitting to my situation. I don't always feel this way, but the strength of such mantras are helpful.

..."Oh yes, I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong
(Strong)
I am invincible
(Invincible)
I am woman"

Pretending to Be Normal

There are times where I just get so sick of my body and my illness that I have what I call a "normal burst." That's where I just pretend that I'm a normal, healthy person who can do anything they want. I resent my medications. I resent using mobility tools. And I hate that my body fatigues. So I just push and push and push till I completely gas out.

Today was a day like that. 

I had a lovely morning with my Mom and when I kissed her goodbye for the afternoon she said "Now go and rest." We had swam that morning (Well, I more stretched and floated) and that was good advice she gave me... But something in me said "NOPE! I'm going to GARDEN because I AM NORMAL!!!" It's like my inner brat breaks loose or something?!

So I did. 

I watered my garden and did some pruning and cleaning. I felt my body want to quit, but I pushed it. I pushed it when I knew I should just stop. 

Why? 

Because it felt so good to be out there doing exactly what I wanted to do for a change instead of what my body wanted me to do (which was what my Mama told me to do... go and rest.)

I often fantasize about the things my body used to be able to do. Snorkel, bike ride, hike, etc. I think that's super normal and I'm sure many disabled people do the same. Especially considering I haven't been disabled that long. It was just 19 months ago that I was snorkeling in Hawaii with my husband and work friends. No way could I do this today.

Sometimes pushing myself is worth it. 

I try not to push so hard that my muscles go into rhabdomyolysis. It has happened a few times in the past and I like to think I learned. Pushing myself helps me know my limits. If I don't go to that breaking point I won't know where it is. It also gives me a little taste of what it was a like to be my "normal" old self again.

Nesting

August has been an interesting month. It started off fantastic with my husband finally taking some time off of work and us diving into our fun bedroom decorating project. But then the fires came to California and it looked and felt like the world was ending. 

The family had already been investing time into making our home even more special. We'd been tending our garden, caring for the ever growing collection of house plants and investing our "vacation/travel fund" into a bedroom spruce up instead. Not just any re-do though. Not your Better Homes and Gardens bedroom. We're turning our bedroom into a Disney Jungle Cruise (loosely) themed room. It's going to be amazing!

We've been doing a lot of art and fun craft projects to make it uniquely ours. Not only does it personalize the space, but it saves money too. 

So while it does indeed feel like the world might be ending, we can be sipping cocktails (and mocktails) in our tiki room, or snoozing under a canopy of "man eating jungle vines." A worthy investment to lift our spirits.

All of this may sound superficial, but mental health is just as important as physical health. Keeping busy with "nesting" is an instinct almost every living thing has.

I've also learned that I can have gratitude for what I have knowing how lucky I am while also having empathy for those who aren't as fortunate. Feelings are not exclusionary.