What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

My Simple Life

I had some lovely time to myself this morning. I was reflecting on my life and how much it has changed. I was thinking about how much of my life used to be consumed by work. Just like my husband. How I didn't even have time to think about eating or how to take care of myself. I was too busy taking care of others. My clients, my dogs, my husband and my son. I absolutely came last.

Now here I am stripped bare. My son is living with my mother. No career. One adorable little dog. I have all the time in the world,

I realized that like this wild and crazy collage of my family my "core" is a jumble of many things. Where there used to be one massive boulder in my day "WORK" there now are many smaller things. My garden, my pooch, my family, meals, movement, ceramics/artwork, socializing... I still have an incredibly rich, full life. It just looks completely different now.

Here's a story...
My mother bought me chives this winter and they didn't do well at all. When I was planting my spring garden I dug them up and planted them all together in a small clay pot. I kept them out back and still took care of them. Recently they all died after living their life cycle. I had let them flower rather than eat them. I was going to re-use the pot they were in, so I started digging them out. And look what I found!

From these tiny little chives came a giant bowl of onions. I don't even know how they all fit in that small pot. I just kept digging out more and more beautiful onions. I thought the plant was dead and useless but where I couldn't see it was making magic. 

I constantly learn from nature. She is a fantastic teacher if you just pay attention. There's a lot you can take away from that onion story. Growth happens where other's can't see it. When you think you're dying you're really transforming. Thrive where life puts you... I could go on and on.

My life is as full as that pot. I just have to dig a little to notice and see it.

Reflecting on 2021

 

This year has come with many gains and loses for me. I lost my beloved Nana in mid-November. She was a second mother to me. Even though someone slips from the evil grasps of pain, it's still a loss. I know she's no longer suffering. But I also know I will never see her or hear her sing-song voice again. I kept some voicemails she left for me over the last few years and I'm grateful to have them. She had such an infectious laugh. One of my favorite things about my family as a whole is that we have all maintained our inner child. I can't say that for most people.

I also lost my sweet puppy girl of 16 years, Sweetie. Which I wrote about here. My son moved out of our home in an explosive way. That felt like a loss. And I felt like I finally had time to mourn my lack of ability to work. 

But my life is never just about loss. In fact every time I have a tremendous loss (like no longer being able to work), I also tend to have a huge gain (like my mother moving around the corner from me after being in England). 

So let's talk about my gains this year. 

Right up there with getting my clinicians license is my new fella Max. I worked very hard for that license. It was the climax of my education and training. Two thousand hours of working with clients, suffering through TB treatment, a total hysterectomy, a brain tumor and the start of my Mitochondrial Disease...WOW! For Max to be just as great speaks how important he is to me.

Another bright spot of my year was how much I was able to reconnect with my friends and family. My husband and I had a blast at "Friendsgiving" in November. We saw a lot of family that we missed last year. I had a life-changing heart-to-heart talk with my best friend since first grade. In short, I basked in the company of other people.

I like to think of myself as some kind of "Uber Introvert" who doesn't need the company of other people. But that's a lie I tell to protect myself from feeling rejected. Honestly I love to be around other people. And I'm doing much better at letting my limits be known.

Here are just a few things I want to remember that happened this year that were positive:

• I spent time with my Grandmother-in-law. One of my favorite people in the world.
• I had a lot of laughs with my Mama (just like last year, but it's important to savor those moments.)
• I produced some truly horrible art, but had fun doing it.
• I took some fantastic photos.
• I found new ways to do the things I love (asked for help, waited till later, worked around my disability.)
• I stopped fighting the need for rest.
• I went to the Monterey Bay Aquarium when they were practically empty. A dream come true!
• I saw the Mendocino Botanical Gardens for two days with the love of my life.
• I was finally approved for Whole Genome Sequencing along with my son and mother.
• We built our dream patio, complete with waterfall!
• I got my little room back (once my son left).
• I learned I can drink red wine again with some magical little drops that remove the sulfates. 
• I was kissed and hugged about a million times.
• I got back down to a weight that I feel ok with. Not perfect, but better.

Just looking at this list makes me feel both happy and proud. I love my life, even with its limitations. I am safe, warm, fed and very loved. I wish everyone in the world could say the same. That's my wish for 2022.

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. 

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"

You Look So Pretty!

Second only to "you look so healthy" those four words also can be a bit loaded. I mean when was the last time you told a woman "You're so smart! You're so organized! I really admire you!" Not to say that we don't also compliment others outside of beauty, but come on. We all know "You look so great!" Commenting on someone's superficial appearance is the cultural go to. Even for children "You're so cute". Which is really terrible.

I had a conversation with my mother the other day about beauty standards and ableism. I feel like every way in which a person deviates from the cultural standard of "normal" you will encounter push back. This push back can come in the way of prejudice, discrimination and the world just not being made for you.

No makeup, kid clips, not fighting aging.
I think I'm still pretty.

Typical "deviations" from our current culture that will cause pushback are:

• Skin Color
• Body Size
• Signs of normal aging (wrinkles, sagging, silver hair...)
• Obvious signs of disability (wheelchair, walker, synthetic limb, deformation, oxy tank...)
• Height
• Socioeconomic status (how wealthy you are... or aren't)
• Body hair (on women)
• Body odor (on women)
• Dressing "outside the norm"
• Body modifications (face piercings, ear gaging, etc...)

And as if this exclusionary, impulsive reaction wasn't bad enough another thing I've noticed is that the more of this box's you tick, the more violent and immediate someone's reaction can be. One need look no further than the violence perpetrated against trans women of color to see that's a fact. Being tall, a person of color and transgender can easily get you killed.

So what does that mean to me, a queen size disabled person over 20? I shared with my family that I've noticed a huge difference in how people react to me and treat me depending on what mobility device I'm using, the color of my hair (natural vs colored), the clothes I'm wearing, the purse I use and if I've chosen to wear makeup that day.

Growing my hair color out.

AGAIN...

The most poorly I'm treated is with natural hair, casual clothes, no Coach bag and using a store electric cart. I honestly like to keep my cane in a store electric cart with me as an obvious signal to my disability. Being a big person there are way too many "people of Wall Mart" memes out there for my comfort. I noticed that people will not get out of my way (block me in on purpose), ignore me, not offer to help me with anything and in general tend to just look away.

Helooooo. Get the hell out of my wayyyy!!!

The best I'm treated is in full makeup, hair colored, dressed up, expensive purse and either walking on my own (something I only do in my own house these days) or using Dory, my "mega wheelchair." I believe that is because it screams "I have a legit disability!!!" Dory for sure gets me treated even better than my travel wheelchair Ariel. I'm guessing because of the size and gadgets it just "looks more disabled".

Vroooom!
Me and Dory taking off from my Mom's house.

So what would happen if I have blue hair, piercings all over, riding in a scooter, wearing rainbow yoga pants and an obscure 80's band t-shirt carrying a unicorn backpack on my back? If you add to that it is a person of color and a very large person I'm sure she'd end up a meme on someone's Instagram account, or be filmed against her will and uploaded to YouTube with some horrible comments being made. That's my guess. Because this person is too far outside of what our culture deems "normal" and they deserve to be punished for it.

Even with knowing all this to be true I still choose to push the boundaries on normalized culture. I feel it's the only way to create change for the good. For there to be love instead of hatred and prejudice. Because I am a social justice warrior and a feminist and that will never change no matter how severe my disability becomes. 

With not being able to work right now. Not being able to help people the way that I used to. Living with this core value of loving people and fighting against stigma in even the smallest way still gives me a strong sense of purpose. Something everyone needs in life.

Transitions

My new transportation cards

I don't feel like I'm "transitioning" into my life of being on disability and not working. Not at all. Instead I feel like I've been distracted from really coming to terms with anything. Part of that has been from being so busy with my mother moving to town from overseas and the other part has been caused by having such a complicated illness.

When you are healthy one day and paralyzed the next, or have a clear diagnosis or are undergoing serious treatment for a condition complete with walks and ribbons, you know what to expect. Your prognosis is clear. But even though I have something serious, it's rare enough that it's not clear at all.

I have accepted that I likely won't find a magical treatment that will put me "back to normal" (at least my normal). I've also accepted that I will probably continue to have degenerative, progressive muscle weakness. But what I'm not sure about is if that will always keep me from working?

Right now what's keeping me from working isn't my body at all, but the dizziness, fatigue and foggy headedness. Both my ENT and the neurologist think at least some of this is from migraine. The pink glasses helped and I ordered a pair of blue light blocking prescription glasses yesterday hoping that helps even more. 

My new specs - Yes, I'm a hipster

The Topamax DID NOT HELP! It made my dizziness so much worse that I had to just go to bed. It also made my headache much worse. Ugh. After three days of that BS I just stopped taking it and messaged my neurologist.

I think what will help me transition is:

• Some time to myself
• Applying for SSDI
• Talking to the new neurologist who knows more about myopathy
• Time

Never a dull moment!

A few days ago an acquaintance said to me "You must get so bored sitting around all day. What DO you DO?" Once I got over my shock and the urge to smack her I took a breath and explained. "I am disabled. I have a chronic illness. This means I am always sick. I spend a lot of my time resting and I feel too ill to get bored". Although that is true, my days are also quite busy!

Here's what I had going on just this week:

My genetic testing kit came and my mother and I did it together. It took a few hours to register, answer questions and spit in a tube (surprisingly hard!)

It's rare that a week goes by that I don't have some kind of medical appointment. I saw the ENT the other day who confirmed I'm suffering from migraines and they believe that's the cause of my dizziness and foggy headedness. Good to know! Now on to treatment.

My mother drove us a little over an hour away to meet a friend for a delicious seafood feast. I had a headache the entire day, but I didn't let it stop me from having fun! The ocean air was rejuvenating and the view of San Fransisco was breathtaking. 

I get easily impatient with my hair and hate what I call the "Soccer Mom" phase of growing out a pixie. So I gave myself some baby bangs just for fun.

After both the neurologist and the ENT said I'm suffering from migraines (vestibular and intractable) I decided to try these "anti migraine glasses". They are a rose tint and are supposed to block out particular light that can cause migraines. I didn't think that they were working, but then I took them off to shower. When I got out I could tell my headache was MUCH worse. Back on they went and I can feel my headache easing. So weird! 

I think I have a very high pain threshold and so much other physical stuff going on that it never would have occurred to me that I had migraines. 

I'm also trying to gently get back into doing a little gardening. I find it very therapeutic and it keeps me eating healthy. My mom just bought me this beautiful cedar raised bed so I can easily garden while sitting, It's the perfect amount that I can manage. I'm hoping to get some herbs and lettuces for winter going soon. 

So no. I'm not "bored". I still sleep in, rest, take naps and try to go slow. But I keep both mentally and physically as active as I can and I'm always seeking out new tools to improve my quality of life.

(I received no incentive, kickback, discount or payment for ANY of my links.) 

Chronic Illness & Relationships

Life gives us many opportunities for relationships. Acquaintances, co-workers, friends, family, pets... All touch us in some way. Chronic illness and relationships are rough.

Can't you just bring a coffee by my place every once in a while?

Once I didn't "get well soon" most of my friendships went by the wayside. If I'm really honest I would say ALL of my friendships went by the wayside. You can only cancel plans for being ill so many times before people just stop asking. And I think my friends specifically just stopped knowing what to say or do when I wasn't "cured" by whatever treatment I was trying that week.




I have a specific friend who was pretty shocked when I showed up to our coffee date in a wheelchair. And if I had the energy to sit and listen to people talk about themselves for hours then I'd still be at work. I don't blame them for dropping off. It's very hard to understand and to know what to do to help. And "let me know if I can help" isn't really help at all. It's words to make the person NOT feel helpless, useless and powerless in a situation where everyone is powerless.

My in-laws have been really fantastic. My mother and father in-law took my husband and myself to Yosemite National Park not too long ago and bent over backward to do things that would be accommodating for me. They check in on me regularly and are good listeners.

Us on an accessible trail at Yosemite in July 2019

My two sisters-in-law are also very helpful. They always understand if we need to cancel an outing or family gathering because of my health. No one takes anything personally, which is a HUGE gift.

One of my sisters-in-law visiting me right after my brain surgery. They were both there and both spent the whole day with my husband waiting. Now THAT'S LOVE!

My family is also great. My mother is looking at a house close by to me to be helpful. She now drives me anywhere I need to go, anytime. She even takes my precious dog out for walks and adventures! She feeds me, henna's my hair for me and slips my son money any time she can.

Me and my Mom. I feel very loved and supported with her.

My husband is the center of my support system and where I get the most love, understanding and help. He gets to see me at my worst and has never even blinked when I lose my cool and have a "snot" moment of hysterical crying. He rubs my feet anytime I need it, rubs my back nightly and reads me stories out loud. He works more than full time to support us and is calm, cool and patient with our 25yo son (who is temporarily back home again). My husband cooks, shops and cleans... he's an amazing man. I may have bad luck when it comes to health, but I won the karma jackpot with my marriage. 

He always has my back

My chronic illness has tried to take out my marriage many times, but it hasn't even made a dent. "Can't work, no orgasm, need to rest daily, foggy mind, can't drive..." a world of "cant's" doesn't stop our love for each other and how we always find a work around.

I know people who have had chronic illness decimate every relationship in their lives. I have much to be thankful/grateful for when it comes to the people who are really there for me every day and I feel fortunate to have them. 

One Month Later

I am exactly one month into a three month "temporary break" from work (SSI). One month ago I had my last day in my beautiful office. One month later this "break" does NOT feel temporary.

I'm slowly coming to terms that my condition (currently just called "Myopathy") is progressive and degenerative. New symptoms still crop up from time to time and none of them leave once they arrive. They may get stronger or weaker, but once here they don't just set up camp, they build a condo and invite friends.

Not very long ago I could push myself to walk around our block with my dog. If I were to do that today not only would it take every spoon I have, but I think I'd fall over. The dizziness is a bit better, but I'm still very foggy headed, especially once I get tired. And that happens all the time. 

In short, I'm unable to work.

All the moods of me.

This Sunday I have another brain MRI. And on the 22nd I have a follow up with my primary care doctor who I trust completely. At that appointment I'm going to talk with him about extending my disability leave. There's no way I can go back to work as I am.

My hope for something or someone to "fix me" is waning and I feel a pull to just do what I can every day. What I have is obviously still a mystery to all medical professionals, though they've been able to rule out quite a bit. To me it just feels like everything my body went through during the TB and brain tumor left me with something "turned on" that never should have been. Or not. Who knows? All I know is I can do less this week than I could the week before and so on and so on.

I also think I need to make some small modifications to my house while I'm still able to be so mobile. Planning ahead is never a bad thing.