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.

Escape

Ever since I can remember I fantasized about running away. When I was little it was the classic "put all my shit into a knapsack and take off with a sandwich" type daydream. As an adult it become "don't show up to work, but keep on driving till I hit Disneyland." Now days it has turned into "keep driving till you hit Canada or Mexico."

I hate what the United States has become. We are an oppressed nation ruled by a nazi who is stripping away women's rights as fast as I can blink. Although we started wheeling that way long before the human cheeto was sworn in. Roe vs Wade was overturned right under a Democratic president's nose. And a female VP I might add. 

Women are second class citizens here. Of course I want to run away. I'm guessing most women with a half a brain are currently daydreaming about it if not actively planning it. 

I used to think about having a precious little beach house in Monterey, CA. One of my favorite places. I love the unique wildlife there and the weather. Then later it turned to thoughts of Hawaii. Having a cottage tucked in the rainforest with wild geckos climbing my walls. Steps from the beach of course where I could snorkel every day.

Now I just think about anywhere but here.

My husband doesn't get it. Never did. He's incredibly sensible, rooted, grounded, determined, practical and let's face it. An upper class white man who works a corporate job. The US is made for him and men like him. Men who just keep their nose to the grindstone for the sake of their family. Who have a beefy 401K because they planned ahead for retirement. And lucky for me, because I am not and have never been that type of person. I think of myself as a kite and he's the little boy holding my string. Without him I would have been sucked up by a storm or eaten by a tree for sure. 

But man do I like to soar. And from up here I can see the whole world, not just our little patch of sky.

First Time

Monday was the first time in about eight years that I drove a fair distance. I took my son to the beach town of Sausalito, about a 90 minute drive from our home.

Growing up my son and I would take trips together frequently during the summer. My husband was always working hard to support us and so I could stay home and be a full time parent. That meant it was usually just the two of us during school brakes. We even drove to Los Angeles together, about 7 hours from our house. 

I always enjoyed these day trips with my son. We were adventure buddies and built great memories. 

Now he is 31, but he also lives very close, doesn't have a partner and doesn't drive. He doesn't leave town unless we take him somewhere. We try and do that a few times a year and he always enjoys it. But it isn't the same as it just being the two of us.

That's why Monday was so special. I was giddy to be able to be so physical. We hiked the blustery beach, walked to an old military bunker, and climbed some steep, old, cement stairs. Things I could never even imagine doing a few months ago. Bodies are so amazing. Our ability to heal and recover. 

I feel so alive right now. Like each moment is a juicy peach and I'm just savoring all I can. Each second I'm able to walk, bike, run, swim, climb is an enormous gift. One I never thought I would be able to enjoy again. I have gratitude and love in my heart to the universe for its magical, unpredictable ways.

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 Brain Is Back!

It's not just my muscle strength, stamina and energy that have returned to me. I can also feel my mind becoming sharper each day. This is very exciting to me because it means I can go back to work at some point. I gave up a career that I loved when I could no longer focus or retain what was being said to me. My short term memory and recall were both terribly impacted by my mitochondrial disease. Both are vital to my work.

I also had physical coordination issues that made working on the computer for any prolonged period a serious challenge. Then there was the fatigue. Sorry, that makes it not sound so bad. I mean FATIGUE! The worst of the lot. Actually they all suck. There is no winner here, just me losing all my faculties.

I could tell when I was recently able to play games again that I was starting to recover. Then when I was able to win a few... well... I can't even express how thrilling that was. And not just because I'm competitive. It meant that my brain was getting back online.

Now that I reflect I'm astonished at how well my body ran during that time when I was so terribly ill. How my brain and body worked at all? I think it was just sheer stubbornness and will on my part. Of course I wouldn't feel up to playing games. I could barely function.

The longer I'm at the gym the kinder I feel towards my body and the miracle that is me. I've been through so much physically and mentally. No wonder COVID had a minimal impact on me mentally. I was already in my own hellish war. Now I'm working my way back to health. Trying to shake damaging eating patterns. Attempting to nurture myself inside and out. I feel so incredibly lucky that my brain didn't check out completely and I can feel everything coming back online.

My New Hobby

 For the last four months my husband and I have been enjoying a new hobby. Pottery. At first I thought we could both learn how to turn clay on a pottery wheel. But after the second time trying I learned it just takes way too many muscles. So my husband has been on the wheel improving each and every time. Meanwhile, I have been working at the table doing "slab build." That pretty much means just working with my hands without any clay moving. 

It has been tremendous fun! Shockingly so. Even more fun is the fact that I'm not very good at it. I'm learning each and every time. I'm a very creative person and I'm used to being pretty good at every art that I try. But clay? That's a new one for me. My muscle weakness also makes it harder for me, but not so hard that I can't do it (unlike the wheel). 

It's incredibly rewarding to actually make things that are usable in a different way than just hanging on a wall. We're making all our Christmas gifts this year, 

A finished product takes two pottery sessions. I make it at the first one, then they fire it while we're away. At the second session I glaze it. They have about eight different colors to pick from. 

Next up? A new dish set and plant pots. 

Little Pleasures

Little pleasures pack a big punch and mean a lot to me.

I used to find pleasure in good grades, a helpful session with a client, a big vacation... big moments. Sure little moments were nice too, but they were often overshadowed by bigger expectations.

One of the gifts I now have is that ability to find pure bliss in the smallest thing. A perfect dandelion on a walk. Free plants found to nurture back to health. A morning cuddle with my man. Petting my soft dog. All of these make me feel as happy as I felt eating seafood in Dublin Ireland. 

But it's more than that. These series of small moments weave together to form the tapestry of my happy life. They feel like little shooting stars in the night sky bringing a surprise of pleasure to my day. I feel fortunate not just to have them, but to see them. They were always there, but often I was too focused on the bigger joys to really soak them in. Staring so hard at the planets if you will that I missed the magic of the stars.

When I learned to relax my tight grip on expectations, my future and even the day, I started to enjoy my treasures even more. Sinking into my soft bed to rest. Snuggling with my stuffed shark. The warm water as I take a long shower. I'm incredibly lucky to have too many of these moments to count. 

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.

I can't tell!!!

One of the hardest things for me about having a chronic, progressive condition is the lack of stability and predictability. I honestly can't tell what I'll be able to do from one day to the next. I know I'm far from alone with that feeling of instability. But that's no consolation.

Sometimes I feel like I honestly can't walk at all. Sometimes I feel ok to garden for an hour (though I always pay for it later). Sometimes I think it's only a matter of time before I'm hooked up to a ventilator. Other times I feel my body has really stabilized. The constant uncertainty is stressful and hard on not just me. 

My family can only go by what they see and what I tell them. Of course I don't give them a constant play by play of my body. "Now I have a cramp in my left calf, now my lower back is spasming, now my right eye is twitching..." They aren't me so they can't possibly know. Or as much as they try, understand. It's terrifying. I feel a constant undercurrent of panic no matter how mindful I try to be. "Is this the last day I can walk? Is this the last time I'll be able to do this?" These are things I think about daily. 

If even I can't tell what's going on in my body from one day to the next how could my family? If I don't know what I need or what's helpful, how could they? I do know that it helps me to talk and share the important things going on with me. Including my fears.

I'm very lucky in that when I share with my family, they take it seriously. I still remember talking to my husband about needing a rollator. It was a very hard conversation, but needed. I ALWAYS feel heard, respected and helped by my entire family. Which when I can't tell what's going on with my body is just what I need. 

I've learned what doesn't work for me is pushing myself too hard just in case I won't be able to do something in the future. It's what I have a tendency to do and my body doesn't thank me for it. I need to take it slow and cross each bridge as I come to them.

Why it's easier to just stay home

My husband and I went out to see friends last night. They're good friends, but friends we have a hobby in common with and see about once a month if we can. I had tried to save up my spoons and had a good nap. I dressed up nice and we took Pablo out with Dory so I felt all spooned and tooled up. 

Then a friend said something really stupid that just knocked the wind right out of me. My husband/ally was behind me talking so he didn't hear and couldn't step in. Drat! I was left hanging in the wind. The conversation went like this.

Friend: "Are you working now?"

Me: "No. I'm on disability".

Friend: "Oh, so you're home?"

Me: "Yup!"

Friend: "Can't you even work from home?"

Me: ... (wind knocked out)

Me: "Noooo... I'm disabled. I'm on disability. I'm home not working because I can't work."

... "silence"

Me: "So how are YOU doing?"

That's my technique. Whenever someone puts their foot in their mouth I just turn the conversation away from me completely and onto them.

During that same evening I also had a very drunk friend hang ALL over my chair and myself, smudge my glasses, gave many many hugs in which I was careful to turn my chair off so as to not run over anyone... in short it was nice to see my friends but it was a LOT of spoons.

I seriously understand why people just stay home. 

My sweet friends want to bring a lunch over soon and come over to my house. I promise myself not to clean or feel bad about my house not being "up to snuff" comparing it to how it used to be. I also will not let my husband run around cleaning and buying food to entertain them. We'll see if that's better. 

I know people don't mean to say hurtful things. And it does come from strangers too. All the time really. But that's what I mean when I say often times it's just easier to stay home. 

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. 

You look so healthy!!!

Prepping for the week

Meal shopping and prepping is something my husband and I (mostly) do together. Our town has a magnificent farmer's market that we try to go to on Saturday mornings. We stock up on eggs, fresh fruits and veg and occasionally cheese and meat there. 

I try to be careful where my dairy and meat is sourced from and there's a fantastic Scottish family farmer that we love. His eggs are beyond compare, each one tasting like golden love. (I received no kick back for this endorsement, but wouldn't say no to some free eggs.)

My husband has taken to doing almost all the meal prep for the week. He'll fill up all our water jugs then sauté up a giant batch of peppers and onions. We use them on almost anything, but have especially been enjoying veggie fajitas. 



I try and boil eggs for the week (for a work snack) and prepare my lunches ahead of time. This week is a delicious veggie, gluten free pasta salad with fresh herbs and veg from our trip to the farmers market. Delicious! (please read this in the voice of Gordon Ramsay.)

Hummus, bananas and yogurt are also a must have for the week. 

Aside from all this delicious grab-and-go food I like to make sure I'm also mentally prepared for the week. My job is very intense, emotionally charged and can be draining, so every little thing I can do to relax and re-set is very helpful. This means having clean clothes, taking a big nap, not taking on any big activities and feeling physically ready. 

Sometimes that looks like giving myself a facial or taking a bath (if my muscles are doing well enough to get in and out of the tub like that.) This week I got my nails done in a fun "out there" style that I've never done before.

Dragon Eye Nails

My husband and I also come up with a meal plan so we know what to make when we're tired and groggy after a long day. We try and cook together, but some nights all I can manage is keeping him company while he cooks. Just like with grocery shopping. We occasionally go together, but other days (like today) he runs off with a list we made to do the leg work.

I'm adjusting slowly to doing what I can when I can and saving energy for the really important things. It still isn't easy. But having bitchen nails does help.

Swimming in the deep end of life

I love the Ocean. I always have. When I was a little girl I used to spend all day every day every summer swimming and pretending I was either a mermaid or a shark. I love them both equally. The more my arms and legs stopped working the more my love for mermaids grew. I liked to think that I was just a land-locked mermaid and not a disabled woman. Isn't that thought more fun?

Last weekend my husband took me to the "Bubble Ball" at a mermaid convention in our town. Who even knew there was such a thing? You had to come dressed as either a mermaid or a pirate. I was thinking "What's there to do at a 'ball' in a wheelchair?" Turns out tons of stuff!

Me being me I had to dress as a "Princess, mermaid, fairy, shark" and not just a mermaid. "Where's the shark?" You might be thinking? I have 5 gills on my neck. Hehehe.

My husband was "Mr. Smee" from Peter Pan. Smart guy that he is he picked a comfy outfit in the sweltering heat. 

There was a magician who was amazing and looked a lot like "Captain Jack Sparrow" from the Pirates of the Caribbean movies. 

There were games, photo booths, tarot card readings, magic, stage shows and all kinds of fun to be had. I did get a little bit of chair dancing on at the end too. We had a fantastic time. I'm glad I didn't let my hesitation of "going to a dance in a wheelchair" get in the way of me letting my inner mermaid (princess, fairy, shark) shine!