Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

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.

All In One Year

 

My mother and I went spring garden shopping at our favorite nursery yesterday. It wasn't till my cart was full to bursting that I realized "Hey! This is my first time walking here!" Later on that day she sent me pictures of the last five years we were there. 

The picture above is 2023 and just below that yesterday, 2024. What an incredible difference a year makes.

I wish I could go back in time and tell myself to "Just hold on. Help is coming. You'll be here walking next year." What a miracle this still is.

I have a lot of pain and get tired. I need to remember to eat BEFORE I do something strenuous or exercise, not only after. Alcohol doesn't really agree with me anymore. When I was a wheelchair user I had far fewer after effects of drinking. Isn't that odd? Now my body's like "Heyyyy, we have enough going on without also metabolizing this poison you just drank." Fair enough body. I hear you.

Eight months ago that chair was still my only way to interact in the world. I call 2PM to 6PM "Magic hour" because that was the time I would miss out on every day. Every thought was about my disability and how I could best live my life. What tools I would need to get me through. How to explain my needs to people and anticipate them myself. Being disabled is exhausting.

Today was so wonderful planting all of my beautiful flowers. I'm not growing food this year in my raised bed. Just flowers and some herbs. I brought my back brace outside but didn't need to use it. Which is a testament to how much stronger my back and torso are becoming.

My weight is up, but I'm trying not to focus so hard on that. I'll be back at the gym tomorrow morning. Driving past my beautiful garden. 

Still Healing

I've been doing Yoga at home and a little bit of meditation lately. As in the last two weeks or so. My special room came along wonderful and is almost complete. It's a great space to do those things in, with my dogs staring at me of course. But that's much better than leaving them for the gym. Although I digress...

My point is that while I was meditating this morning I was trying to open myself up with my mind. Explore my body and see where the tension and pain is and what's causing it. I noticed that I felt very raw inside. Like an M&M but instead of chocolate I am a big, open, void of pain. That really shocked me. I leaned in even more to that feeling and saw it stemmed from the last five years of my disability being so serious. 

My loves, Margo (left) and Max (in the orange shirt)

I tend to gloss over things and move on to the next, on to the next. I tell myself that I sat with feelings and experiences but I think that's often a lie. I'm great at helping others sit with their feelings, but garbage at doing it myself. No shocker there. "Do as I say, not as I do."

I realized when really listening to that void that I am still healing from that experience. Of course I am. It has only been five months! That's what I would tell a client. "Of course you are! Hardly any time has passed at all!"

I've gone from not being able to walk around our neighborhood block to doing it while walking one dog and carrying another (poor sick Max) in a sling. All in five months. That's nothing short of miraculous.

Margo with her favorite toy

But what of all the other things that I can't see. That I'm "glossing over." All the time spent asleep. Those lost hours. Time spent not engaging with the world in the way that I'm used to. Energy spent on mobility challenges. The pain all of that caused both mental and physical. The impact it had on my relationships. On my husband, mother and son. I'm still feeling that.

I like meditation because it's a time to pause and really open myself up. I'm a person who needs time and space for that. 

Yoga makes me stronger and more flexible. But it also puts me in touch with my body. With my pain. And lets me know my limits right then and there.

Together both help me explore this new body of mine with love and intention. It's something I desperately need.

Sleeping Beauty

I'm a pretty big deal

My strength is gaining and I'm feeling good about gently pushing myself. I feel a bit stronger every day. Today was the biggest push yet. I used a shopping cart when we went to Trader Joe's.

I picked this store because it's very small, the parking is very close to the door, I know it well and if I couldn't do it they have electric carts right outside the door, so I wouldn't even have to bring my chair. 

As you can see I did do it! My entire shopping list. I felt like such a freaking bad ass!

I felt like my organs were shifting down as I walked. It occurred to be that sitting in a chair does squash everything down, so I'm sure that they are needing to re-adjust. What a weird thought. 

Towards the end I was starting to sweat a little bit and feel fatigued. My muscles still felt strong, but I felt tired.

We guessed that I shopped for at least 30minutes. I'm so impressed and proud. It felt like a good stretch of my physical abilities. 

Unlocking the World

On August 17th, 2018 I had my first ever assessment for a wheelchair. That chair would turn out to be my Quantum Edge in Ocean Blue (of course). I love her very much.

How can you love a wheelchair?

Much the same way people love their cars.

For me she's so much more than a chair that moves. She's everything about freedom that's so important. She literally unlocks the world for me. Without her my life would be smaller than small. 

She also means independence.

I'd be relying on others to push me everywhere if I didn't have her. Not only is that tedious for them, but it feels awful for me (literally, I get motion sick this way.) As my mother once put it when she had to push me before we purchased our wheelchair van. "Awwww, it feels the same as when you were little and I would push you in your stroller." For me too mom! It feels the same for me too. Like I'm an infant. Ick!

My biggest fear is that she will break and I'll have to wait months and months (if not a full year) to get a new one. Repairs and delivery of medical devices is shocking. A few companies have a monopoly so they can take their sweet time, lose your order or screw it up as much as they like. You're at their mercy. It's such a racket.

I have many fantasy businesses, but one of them is running my own wheelchair supply and repair business. 

Anyway... I digress. 

If something happens to my chair (and it already has in the past) I'm very limited. I do have my travel chair as a backup, but she's not nearly as comfortable or maneuverable. She's good for an emergency, or rugged travel. Not really for every day use.

I'm also curious if I could get a new wheelchair that raises and lowers up and down. Not just tilts front and back. And, as much as I love this chair, I didn't get the full assessment of an occupational therapist (OT) when I was fitted for her. Just a sales man for the company who ordered her for me.

I contacted my insurance company to see when I could qualify for a new chair and was told "Anytime you need one." WOW! That's great news. So then I reached out to my muscular neurologist and asked how it would work. She said she would need to see me, but that we could do a video visit. Then she would send me to my fabulous muscular disease OT for an assessment. Bingo!

This all means I'm hoping to get an order in for a new chair soon. That will give me some new options and a solid backup should anything happen. And IF I ever travel again on a plane, I can bring my big chair and not be in a panic if something should happen to it during the flight.

My world just keeps getting bigger.

My Time

Most people think that being disabled means I sit around, sleep and watch TV all day. They're confused about what I do. When I'm not scheduling, attending or following up on medical appointments and procedures (which really is a full time job in itself), here's where you'll find me. 

At my mom's pool. We work out together HARD three days a week for an hour. We swim and then have extensive routines that we do with our water weights. No way could I have done this last summer. It feels amazing to have so much energy to be able to push myself and build muscle strength in this way.

On days where I don't swim I try to walk as much as I can. I'm up to walking a quarter mile on my own with just my cane now. That's an enormous accomplishment and something I haven't been able to do since before I became ill.

When I'm not pushing myself to walk you'll see me out in my community in my wheelchair. I go to the Farmer's Market, alone to the store and for haircuts when I can, to museums, gardens and plays. My mother took this picture of me when we attended an outdoor play recently. We had a great time. 

I love to spend time in nature and take our dog out for "adventures." Here I am in my favorite oak grove with my favorite tree. The path is compact dirt, so my chair can maneuver quite well. We've been enjoying the weather before the super hot days come.

I also spend a lot of time and energy in my garden. We are currently growing tomatoes, peppers, basil and squash. However we also have trees, flowers and plants that need caring for. And don't forget the passion fruit vine! We were very excited about our first flower ever.

I have an incredibly full and satisfying life that has nothing to do with my disability. I feel very fortunate indeed to have so many outlets and such a big life. 

What do I want from 2022

I love January. It feels fresh and new. Like pajamas smelling sweet and clean from the dryer. The year is ripe with potential and anything feels possible. 

I was reflecting and asking myself this morning, "What do I want out of 2022?" Sometimes I think I know what my goals are, but are they really MY goals? Or just goals that society inflicts upon me?

This year marks the third year that I've been unable to work. That feels like a long time. A big deal. Then I remind myself that working on myself IS VERY HARD WORK! It takes all of my time every day just to live. What my doctor calls "tasks of daily living." They are a challenge for me.

So here's WHAT I WANT out of 2022:

• Continue asking questions and pushing my medical team for the best care there is.
  
  
• Keep on keepin on with the weight loss and healthy eating. 
  
  
• Be there as much as I can be mentally for my family and friends.
  
  
• Carve out time for social connectedness in real life (as much as is safe to do and as much as I can do.)
  
  
• Help Max meet his great puppy potential for a full and happy life (free of anxiety).
  
  
• Develop the remains of our front yard garden and completely finish that project.

Dreams and Reality

I often lay in bed and question what I can and cannot do. I picture myself going for a run. Or even just walking around my block. I ask myself if I'm sure I really can't do these things. When was the last time I tried? How do I know that I can't do it unless I give it a go?

In my head I strap on my tennis shoes (that now belong to my husband because we have the same size feet and he's... well... able bodied.) Then I go for a light jog around my neighborhood just like I used to.

Suddenly I'm no longer running, I'm surfing (something just as realistic). I'm up on a long board alone zipping over clear teal water. I wave hello to the fish and turtles under me. 

Next it's stairs. How many stairs can I climb? By myself? While holding the rail? Not at all? I picture myself in a stadium zipping up endless steps. I'm wearing short bike shorts and looking like a trainer from Biggest Loser (and not the contestant body I currently have).

When I wake up I decide to try something out.
I don't strap on my tennis shoes, or scrounge up a surfboard.
But I eye our kitchen step stool. The one with the big handle.
I figure I can go up and down that and it can count as a "step."
How many can I do?

Well... Without holding onto the handle I can go up and down 4 times. Four steps on my own. Holding onto the handle I can manage 7 (which impressed me!) Seven steps, but I feel my arm and leg muscles burn for about two hours after. Like I was surfing. Not on a kitchen stool.

I like knowing my physical limits. It helps me mentally cope with being a chronically ill woman. It can also help me when communicating with my doctors. In the past when I was asked how many steps can I walk up my answer was always "I don't know, I avoid them."

I'm sure the answers will change, but for now I know where I stand. What my body is capable of. I shudder to think of underestimating myself in any way. Avoiding things just because I think I can't do them.

Maybe tonight I'll dream of scuba diving?

Finding My Way

 

At 48 years old I feel like I'm finally finding my way. The way to really care for myself. With the same deep passion that I care for my family that I love so much.

CARE is such a lovely word. I sign off all my correspondence with "Take Care." I say that because it's important to me that everyone takes care of themselves. It is true what they say that you can't take care of anyone else if you don't take care of yourself first. Although I believe that you CAN take care of others, it's just not as healthy for you or the people you love. Putting yourself first is actually an act of love for others. This is something I'm just coming to realize.

Showing I care about myself through food choices.

I have always been a giver to others. Not materialistically, but emotionally and with my time and energy. As I aged I learned that it's important to say "no" to some people and some obligations. I thought that was all I needed to be mentally and physically healthy. Well, that and a Starbucks with a pedicure once in a while.

The older I get (and wiser I hope) the more I realize there's much much more to caring for yourself than sweet coffee and paying people to rub your feet. There's...

• Thoughts about myself, my body and my actions.
• Self talk. Am I being kind to myself?
• What I am choosing to put in and on my body.
• Am I committing self harm with my eating and lifestyle choices?
• How I spend my time.
• Am I connecting with people who make me more?
• My goals and dreams for myself.

Each of these can be a gateway to either self care or self harm. In the past, I don't think I was always choosing the CARE way. 

Some things I am committed to working on and changing are...

• Going down to a healthier weight for my body.
• Moving my body more through stretching, swimming and using my stationary bike pedals.
• Eating "good for me" foods that I would have skipped over in the past for tastier options.
• Ditching the chemicals on my body (hair dye, makeup, deodorant.)
• Setting new goals for myself.
• Exploring my new identity as a disabled person unable to work.
• Playing with my creative side.
• Relishing time in nature.

Caring for myself more may mean caring about other things less. Things like youth culture, other people's opinion, things I cannot control, other people's choices... Because caring to me is also really all about choices. Picking and choosing what I do, what I say, who I spend time with, how I feed myself. It's all one small choice at a time. 

How I imaging me and my friends in 20 more years.

Life is very short and I want to make sure I enjoy my ride as much as I can. That means being in the best health possible, as strong as possible (both mentally and physically) and not wasting time on things that don't matter. It's up to me what kind of life I create for myself. And I find it worth the work.

Important Anniversary

Today marks one full year since I left my job. No... left my career. A career I loved and worked hard to achieve for 10 years. 

When I left I thought it would just be for three months. I thought I could "recover" enough to come back "stronger than ever." Our ableist culture told me this was something I could "fight and win!" I mean... it's not like I had Cancer. Right?

No... not Cancer. What I did have was a serious muscle disease that robs my body of processing energy correctly. What I also had/have is crippling migraines that left me unable to work. They cause pain, blur my vision, make time jump, can make people look like flat 2-D cartoons, give me severe dizziness, make me feel like I'm falling (you know that jump scare feeling when you're almost asleep? It's like that). They cause exhaustion (on top of my energy issues that I already have), make my muscles even worse and cause short term memory problems (on top of the memory problems I already have from my mitochondrial myopathy). Try working with that going on. Even for an hour.

The Botox shots have been hugely helpful. My migraines aren't the kind that come and go. There's bad and worse. So to get any kind of symptom relief is an enormous improvement to my quality of life. But I digress... this was why I had to leave work.

What leaving work did to me? I'm honestly still processing that loss. 2020 has been so shocking and I had so much change so quickly to my entire life that only now is the dust settling in my slow moving (but still brilliant) brain.

I feel the loss of my identity as a therapist profoundly. BUT (there's always a but/and in life if you look closely). But I am also building up new identities as I talked about a little bit before. I am still thriving. I can do both. Re-invent myself and mourn a profound loss all at the same time.

I'm learning the language of my body. What different symptoms mean and how to minimize the big ones (when possible). I'm learning to love myself and all my flaws, not to be "at war" with my disease. My disability is a big identity and it's not one that's healthy to "fight." 

I am the orchestrater of our home. The organizer. The planner. The artist and creative. A daughter, wife and mother. A puppy lover and gardener. I take pleasure in watching the people and things I love grow and flourish. I'm a disability advocate and a friend to some. 

These identities are why today doesn't feel like a loss. Today feels like a day to remember and recognize when my world changed, but I am still myself. Still passionate, wise and full of love and life to contribute to my community... It will just be in a different way than I originally thought and planned. 

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"