Diary of a Crippled Chick – fell on black days…

I have several people in my life that give me so much support. Quite frankly without them I’d be lost, alone and defeated. The things we need to remember about life are: 1- It’s a team sport, and 2- not one single person gets out alive. That being said, it’s the journey that counts. Sometimes after being dealt a shit hand at the life poker table, it’s hard to see where the jackpot is.

I get it. The tendency is to ask the why me questions. It’s a valid question because we’re raised (hopefully) to believe in consequences for our actions. The natural course is to examine every single little thing and wonder… was this my fault?

The next tendency is the comparison. Well, (fill in the name) was a smoker, drinker, druggie…. why me and not them? Even if it’s a true assessment, it’s not a fair assessment. To yourself. There are so many factors that make us all so individual, so much that you can’t even compare my MS to yours.

All in all, it doesn’t really matter who’s fault, what gene was triggered, what genetics or unfortunate circumstances caused it. Here we are. Now we have to deal with it. Accepting your situation without losing hope is a teetering balance on a tightrope. Error to either side dumps you into that big dark black pit of desparate loneliness, sadness and depression.

So how does one accomplish this utter serenity and acceptance of a heap of steaming medical bullshit that was dumped in your lap? The truth is, some days I have it all figured out and other days I’m dangling from a ledge by a toenail. I don’t have “the answer” I only have MY answer.

I do things that make me feel happy and fulfilled. They aren’t the same things I used to do. I suppose some of them are, I just have more time to focus on because I have less distractions. Like cooking and cleaning, for the most part, they’ve been out the window for awhile. It shocks me how much i miss them. My kids will no longer let me play with knives. Apparently it makes them very nervous. What a role reversal! I have more time to focus on other things that you’d never consider work. For example, walking.

Other than that I do draw, with an iPad and electronic pencil. I love the undo function when my hand jerks or I just don’t like it. A friend told me I should be including these here, so I suppose I shall. I read a lot, watch movies, or plot ways to torture my PTs. After all, its only fair, I know they plot ways to torture me, and get paid for it. Mostly I had to simplify my expectations on what my life will be. I was never big into partying or clubs to begin with so that definitely works in my favor. I was always a homebody but now i have better excuses.

I guess the best advice I could give would be this, accept the changes, the longer you fight the things you can’t control, the more energy you waste. Get up. Every time. It’s ok to fall, but get back up. Don’t quit. And lastly, just laugh. Whenever you can. Laugh at yourself when your body does something weird and hopefully not painful. Laugh at every stinking thing you can find a smile in. You can be dealt some bad things in life. There’s always dark in the light and light in the dark. You just have to find it.

So here’s to the new year, I don’t really do resolutions very well. I usually just hope that this year is better than the last. I hope my kids are healthy and happy. I hope for a home, and peace of mind. Mostly I hope that this is the year they find the cure. Hope endures.

Hope endures.

Diary of a crippled chick- A second chance

… Don’t hold it back

While you’re trying to figure it out

Don’t be timid

Don’t be afraid to hurt

Run toward the flame

Run toward the fire

And hold on for all your worth

‘Cause the only real pain a heart can ever know

Is the sorrow of regret …

~Jewel Kilcher/ Richard W Nowels

So she traveled, oh how she traveled. She went back to all the places she left part of her soul in childhood, retraced her steps and refreshed her soul again. After that, she traveled some more; Leaving bits of herself in her footprints across stunning new places.

After spending 20 years captive to a selfish scum sucking jailor, now, finally freed from her MonSter, she was free to fly again. You never appreciate sweetness of freedom unless you’ve been mostly tasting the bitterness of a stolen life.

At this moment, nothing else matters but the fresh air, the prickly damp grass she sits on, the millions of wildflowers in every color swaying on the breeze around her, the chill of the thin spring air in the high mountains. An occasional bee buzzes lazily from flower spreading lusty dust from flower to flower before returning home to make its honey. Chipmunks are sounding alarms and chickadees calling out their own names, singing along with the babbling creek. She sits in a massive bowl made of majestic mountains, carved out by glaciers millions of years ago. Laughing like a lunatic, spreading her arms wide then lying back in her own magical place, warm sun caressing her cheeks, looking up into a clear blue sky, free of pollution and any trace of the MonSter, her soul is finally home.

This is just the first stop of so many. You see, she’s just finding her soul sparks. The little bits of herself she shed here, decades ago. Tramping through meadows, climbing up mountains, watching spectacular sunsets, finding where God lives for her.

She watches a butterfly flitting by, riding the rise and fall of the breath of the breeze. Since escaping her prison, that’s what’s she’s done. Gone where the wind blows her; followed the pull of her heart to places she found true love inside herself. Places that felt whole, just by being present. She raises her hand as it flutters by, not wishing to catch and contain it, she knows what that’s like after all. Maybe it will come to sit on her finger. It doesn’t, and that’s ok; it’s just as free as she is now.

Art by Kaitlyn Baca

Here she stays for hours. Drinking in every sensation of the missed years. Reacquainting herself with her freedom. There are no walking devices anywhere in sight. For the first time in recent memory, that reality doesn’t cause panic or fear, but overwhelming joy. A tear of triumph slips down her cheek. She stands up slowly, and tests her legs. They’re as sure as they were before her nightmare. She giggles to herself and is soon crying as she laughs as she dances in the meadow. To a passer by she’d appear truly insane. She doesn’t care who, if anyone, is watching this intimate victory dance.

No one is watching…

There’s a sound, an insistent… skwak skwak skwak

Maybe a big bird?

It’s incessant skwak skwak skwak is both annoying and unfitting in this peaceful meadow.

She stands still, looking around as the mountains fade away, the sunshine and flowers subside into darkness. Skwak skwak skwak… Her bliss is shattered. It was all just a dream.

She sighs. Fights back a tear. Shuts the alarm off and sits up to take the daily morning meds. So begins another MonStrous day. In the corner of her mind, her soul cries out, “five more years, please let it be true.”

Diary of a crippled chick- Me, Christine and WOLF!

I spend most of my time alone. Mostly due to MS, but even before that, I was more introvert than out. I enjoy my solitude… most days. It’s not that I don’t have friends or family, but the MonSter is a jealous lover. It likes to be the only one. It’s when the solitude turns to loneliness, that things get difficult. It clings to you like a staticky sock.

Most days I’m fine with this, as I do still see and talk to people, my kids and friends mostly. I spend a lot of time lost in books; which is actually an awesome way to spend your time. Depending on what you read, however, it can make life interesting.

For example: A few nights ago, after I finally stopped reading at 3 am; I dreamt I was headed cross country to Derry, Maine, for an unknown purpose. I was driving a cherry red Chevy named Christine, had a wolf as a copilot, (Woohoo! I was driving!) and we were trying to avoid Desperation, NV. Now, avoiding Desperation should be no issue because it’s north and not east of here, and because technically Desperation doesn’t exist, and for that matter, neither does Derry. Except, in the imagination of the mastermind of horror, of course. Ruth does though… somehow a town with the name of my school nurse (the sweetest woman ever) is not so menacing. Still, not going there. Ever.

I could beat Tak!

On a side note, I wonder how Tak would faire against the werewolves of the territories, a possessed and angry vehicle, and healthy dream me. I’d like to think we could kick Taks’ ass, but I’m slightly worried about Christines commitment. Food for thought, for sure.

Anyone missing my point needs to read more Stephen King. No judgment, just saying…

The most interesting things about my dreams lately, is that I can walk normally. Sometimes, I am walking around looking for my walker, or chair, and at some point, realize I don’t really need them anymore. I almost never dream myself using assistive devices. It’s such a hard place to leave sometimes. Ironically, these are the nights that my muscle spasms are out of control in my legs; I wake up feeling like a just ran miles. Then, I start to wonder… is this my brain telling me, it’s still in me… somewhere? Or is it just a MonSter tease?

I’m actually happy that my dreaming world has returned. For awhile, probably due to medication, it was dulled into nothingness. Then there was a time of horrible nightmares. They were so bad that I tried not to sleep until nothingness was almost guaranteed. I asked my neurologist about it, but he said there was nothing in my MRIS to suggest it, and I had quit any medication that would incite nightmares.

I know many of you are thinking the answer is in my reading material. Honestly, the nightmares were more real day issues, making them more terrifying than fantastic tales spun in an imaginary multiverse. At the time they were happening, I wasn’t reading much of anything. Besides, I’ve been reading King books since I was about 12; to me, it’s like going home. A safe comfortable space where something out of this world will happen. Where the words spin out of this world pictures of the good, bad, ugly and the holy crap! How did he think that up? There’s usually a hero though, or a band of heroes that fight and persevere over evil and mostly win in the end. If all else fails, I can close the book. Nightmares are harder to escape. Maybe reading someone else’s nightmare concoctions satisfies my brains need to make up its own? Who knows?

Maybe that all seems crazy, but it makes sense in my brain. I’m the only one living in here; it works for me.

Some days, I hate my solitude more than anything. I want to go somewhere… anywhere… and interact with actual people. To see a different set of faces, hear different voices; sometimes I crave that. I don’t often get that because I honestly don’t have much of a social life. It usually means someone coming to me, willing to hang out in my bubble for awhile.

Either Stephen King or Peter Straub, (I’m not sure which, came up with this particular line, as they co-wrote the book Black House) said, “What we have here, is a spectacularly lonely man. Loneliness has been Jack Sawyers familiar for so long, that he takes it for granted. But what you can’t fix turns into wallpaper. Right? Plenty of things like cerebral palsy and Lou Gehrig’s disease, to name but two, are worse than loneliness. Loneliness is just part of the program. That’s all.”

That really sums up how I see my solitude. My loneliness is my familiar, the wallpaper, part of the program. That’s all.

Diary of a crippled chick- Feels like a million years ago…

I only wanted to have fun, Learning to fly, learning to run,I let my heart decide the way, When I was young. Deep down I must have always known, That this would be inevitable,To earn my stripes I’d have to pay, And bear my soul

I found an old planner from when I was healthy. A list of appointments and such, and started to compare it to my life now. So much of my old healthy life seems so distant; Like it was someone else’s life. I know I did a lot of things, saw a lot of places, but it feels distant and detached. For example, I know I was in cross country in high school, but running, especially running miles seems like a foreign concept now that I struggle with walking. Even knowing I could walk with ease and no assistance seems far fetched now.

… I wish I could live a little more. Look up to the sky, not just the floor, I feel like my life is flashing by, And all I can do is watch and cry. I miss the air, I miss my friends I miss my mother, I miss it when Life was a party to be thrown, But that was a million years ago

When I was diagnosed, like everyone that gets a serious life changing diagnosis, I was in shock. I was still in the, “this happens to other people, not me,” frame of mind. But, it did happen to me. It is MY MS. MY disease. That is a huge scary concept to wrap your brain around.

I remember wondering when or if I would ever feel my feet again; or would I get used to not feeling them. How long would it take to forget what normal feels like. I don’t remember when this new normal overtook the old normal. It was a gradual process; now I can’t remember old normal sensations. Everything I saw and imagined for my life is either gone or modified in some way.

I’m not saying this because I want anyone’s pity, I hate that more than anything. I want people to understand, so that when you, or maybe a loved one gets a life changing diagnosis, you can better understand and maybe help. It breaks my heart to see someone suffering and to be surrounded by people that won’t believe them.

When I walk around all of the streets, Where I grew up and found my feet, They can’t look me in the eye. It’s like they’re scared of me. I try to think of things to say, Like a joke or a memory, But they don’t recognize me now, In the light of day

Quite honestly, I’ve avoided my home town, mostly. I can’t altogether pinpoint why. I still have contact with quite a few people from there, but don’t actually go out there. I don’t think that it’s as much about other people, as it is myself. I basically left at 18, walking and healthy and ready for something more. I went back for a couple homecoming games but the last one was about 20 years ago. I don’t know why I can’t seem to gather the courage to go back now. Possibly the ghost of my healthy self roams there, and I just want it to stay there, in tact.

The reality is, that all seems like a different persons past now. In my head I know I did those things, in my heart it’s so distant and diminishing every day.

This raises an interesting question. What happens when the next chapter starts?

You see, there’s been some big developments in the last few weeks in MS research, the cure is closer than ever. In the simplest terms they identified the T cell that attacks myelin, and that T cell has a marker, that they can target. This is huge news.

Now, before I get ahead of myself and break out my cure bucket list, there’s still more to be done. Now more than ever, I feel the need to heal. I attempted this at the beginning of this year, but was derailed and also fell off the track myself in a fit of hopelessness. Now I need to get back up. Again.

In the back of my mind 5 years. Five little years to the start of a better life. I need to prepare. If something happens and it doesn’t come through, well, I’ll be stronger than I am now. While the researchers are researching, I will be working; my arms, my legs, my brain; this time I can’t let the stress derail me. I know that’s easier said than done.

Outwardly I am a very positive person. I’m that strong one, and I keep getting back up. Inwardly I’m the same. To a point. I have those days. The doubting days. The why am I struggling to get up days. Why does everything have to be so difficult days? The fuck my life days. The days I just don’t have the strength to fight, and that’s ok. As long as it’s just a day. When it turns into weeks or months, it’s a problem.

You see, what I call MS math is tricky. It takes five times more energy for a person with MS to do anything than it does for a healthy person. My PT would say don’t do anything you can’t recover from in two hours. The issue is, the amount of energy your starting with isn’t consistent from day to day. Then figure in lack of sleep, fatigue just because the MonSter ordered it, the temperature either too hot or too cold, the stress of ‘real’ life … the list goes on. I get so confused about how hard to push; evidently my push through the pain mentality is not great for the MonSter. The other frustrating part is you improve minimally for all the work you do, then lose it exponentially if you have a bad few days.

Everyday is a balancing act. It’s confusing and a ongoing test of strength, mentally, physically and emotionally. Some days I lose badly and some I struggle through. I’m hoping and praying for that relief in the next few years. Sometimes, remembering there’s light on the other side of the dark is all that keeps me going.

Diary of a crippled chick- I love f words; fall, family, friends…

There are so many things I love about fall. The change in the angle of the sun, the cool breeze, the actual smell of the air, the leaves changing to beautiful oranges and reds. Cozy sweaters and comfy socks; the fact that all my chunkiness is hidden under clothing. Hockey season, Halloween and yes, pumpkin spice lattes and apple cinnamon candles. I’m that girl.

In recent years, the season lost some of its splendor. Both issues with my ex and the fact that my MS diagnosis came in October tainted it for awhile. In the last few years I’ve decided to take it back. Really put my heart into reclaiming what I love regardless of what anyone thinks or does.

This is becoming a theme of life in general for me. I saw my neurologist the other day and he’s optimistic that by the time I’m 50, there will be remyelinators out. This plus the treatment I’m on, or the one that’s a step above it, won’t be a cure, but I could get function back. He told me I’d have to do blood tests every few weeks; my exact words were, “if I can walk again, I will gladly walk my happy ass in here to get whatever blood test you need!” He laughed at me and shook my hand and said, “it’s a deal.”

I don’t know if it will happen in the time frame he predicts, but his optimism and excitement to see people like me heal is inspiring. Notice I did not say cured. There’s a big difference between cured and healed.

The cure, if it came tomorrow, would be great! Amazing in fact. It would stop and hopefully reverse my disease. Forever. So I’d never get any worse, but I wouldn’t be healed.

Healing is a daily fight. It’s attempting to get as strong as possible. Physically, mentally and emotionally. I hadn’t really realized how much the emotional part plays into the rest until recently. I always denied myself the reality of my own depression. This slapped me in the face. HARD. A few months ago.

This past year has been really hard for me for many reasons. While at the beginning my PT was going really well, and I was getting stabilized in my disease; everything else was a mess. My living situation, being the biggest hurdle. To a degree, it still is a mess, but not what it was for sure.

I’m in a much better place than I was for sure, but I know this isn’t the final destination. That being said, I am so thankful for those that love and care about me. These are the people that give me the support I need so I can heal.

Yes, I get by with a little help from my friends
With a little help from my friends
~John Lennon & Paul McCartney

Here’s the thing. Most, if not all of us want a hero; even if we don’t want to admit it. We want someone to step in and love and care for us, to fight for us, to give to us, and in return, we get to be their hero. I think the feeling of wanting and needing to be loved is the definition humanity in its simplest form.

Unfortunately, or maybe fortunately, serious illness is something that weeds out the weak. The partners, friends and family that can only handle the good; runaway at the first sign of struggle. In a lot of cases you (the sick person) stops being useful. You can’t drive anymore, work, clean house or cook and your fatigue is so severe you can’t stay awake if your life depends on it. In shallow relationships, once you’re no longer ‘useful’ you are no longer loveable. The question is, was it really love to begin with? Probably not, at least not the kind you wanted or needed.

I feel fortunate that I do have family and friends to support me, even though romantic love eludes me, that’s ok. If it’s meant to be, it will happen. At least that’s what I tell myself. It makes me sad to see that some in the MS community don’t have what I do. I really wish I could give each one of them a kitten, or a puppy… something with a heartbeat; something they can be the hero for.

Diary of a crippled chick- feeling small

Sometimes I need to feel small. I don’t mean I need to be degraded or insulted and made to feel emotionally small. More, that I need to remember how big the world is; putting my life and problems into perspective, as just the speck in the universe that I am.

This started when I was a little girl. My parents would take us camping every summer. The first stop was always the Yosemite high country. Tuolumne Meadows was my home away from home. The meadows held my thoughts and dreams of the future. My every emotion flowed in the rivers there, bloomed in the flowers and soared on the sounds of the bird songs. I knew the name of every peak visible, and even climbed to the top of one of the biggest. I could identify the birds, the animals and the flowers. I knew what was safe to eat in the meadows; learned the stories of the natives that walked there way before my time. It is truly in my blood. I even named my horse after Chief Tenaya.

Ansel Adams – Tenaya Lake Tuolumne

I remember the moment I realized how big the world is, that my place in it is as tiny and insignificant as the little carpenter ant crawling next to me on the glacier slicked granite. Tiny and insignificant, yet, important. Everything, everyone, has a meaning and a place. I was sitting on the apron of Lambert Dome, the sun sinking behind the mountains turning everything a stunning vibrant orange. I was above tree line and could see and smell the campfire smoke from the camp grounds below. The granite was cool and slick underneath me. You had to be really careful on these glacier carved rocks, or you’d slide right down.

Everything was peace and quiet except for the last of the bird songs as they tucked in for the night. The air was getting colder by the second as the sun sank below the mountain. It would be dark soon and after dinner I’d be tucking into my sleeping bag waiting for it to warm up around me. My mom would read stories that the natives wrote about the trickster known as the coyote. I loved those stories. I’d fall asleep quickly from the fresh air and all the activity that I had participated in that day.

Even though I was resentful at times because I wanted to hang out with friends at home or do other things that’d be soon forgotten; I loved this place. I loved walking out to Parsons lodge and the soda spring and I loved the fact that I knew exactly where the dead tree was that a marmot lived in and would poke his head out and people watch; his little head looking like it was mounted there, but was instead alive and curious.

Ok, so I digress, back to my point about feeling small. I remember one day in particular, sitting on the apron of that dome. This was a common place to spend the evening, eat dinner before heading back to camp. But this day, I felt it. The largeness of the world around me. The realization that thousands of years ago a glacier so huge that I can’t even comprehend, covered these rocks and carved them out; honestly the one I’m sitting on isn’t even close to being the biggest one, and compared to even that one, I’m tiny. That feeling of smallness made me feel humble. Not unimportant because for whatever reason I was here, I was born, I was given eyes to see the stunning sunset, the legs to wander this sacred place. Surely there’s a reason for that.

I think if we can all achieve that humble humanness and stop inflating ourselves into something bigger than we are; we can realize that we are tiny, insignificant yet important. We are like ants in the universe. Little organisms in the big scheme of things, only we were given bigger brains; that is our downfall in many ways.

I have a lot of time to think now that my body has betrayed me. I think a lot about where I belong in the world, what purpose do I have left? My legs can no longer take me to the apron of that dome, I cannot wander the meadows anymore and that breaks my heart. I know I hold a place in the hearts of my kids, my family and the friends that have chosen to come and stay with me on my journey. I often wonder what the point of all of it is. The big why am I here question, that I don’t think anyone really knows the answer to; not deep down inside.

When my MonSter gets big and scary, this is one of the places I go. Sitting on slick granite, watching the sun sink behind the most beautiful place that’s ever been like a home to me. If I concentrate I can feel the cool breeze on my cheeks and smell the campfires from the distance. This is peace.

Diary of a crippled chick- Please don’t ass-u-me.

It’s one of those days that just kind of slip by, the usual ones, where it’s just me and my MonSter battling it out. While I was sitting here, I started to think about what people expect a sick person to look like.

MS people, and the other invisible illness people,get that all the time:

You don’t look sick!

I’m sorry, could you explain what sick looks like. Should I have a runny nose? Should I wear a cast I don’t need on some limb to convince you of my sickness? I’ve thought about dragging an IV pole around with coffee in the bag. Just sipping out of the tube, like a straw. I think they’d think I was crazy, but not sick. Maybe, I’ll just tattoo I’m sick on my forehead and call it a day.

I know people don’t always know what to say when you tell them you’re sick. Perhaps there are no right words. I know for me I don’t like being pitied; I like being understood.

My responses to the you don’t look sick comment, varies based on several factors: 1- How was it said? 2- How well do I know you? 3- How much pain am I in? 4- How bad do I have to pee? 5-Am I overheated, tired or just plain bugged? I really try not to be mean, but if you’re nasty to me, and say, “You don’t need the cart because you don’t look sick, you seem fine.” I will look you dead in the face and say, “Well, you don’t look stupid, but looks can be deceiving.”

I also understand that because I look ‘normal’, people assume that I’m lazy, or faking for all those free benefits. Don’t even get me started on that. You can have my $16 food benefit and my little blue parking pass if you take my MonSter too. I actually miss working, interacting like I used to, being self sufficient and independent.

Another one that drives me absolutely insane; “it must be nice to sit home all day.” No. No, it’s not nice. I hate it. Hate the monotony, hate the pain, the isolation, the constant search for connections that are deeper than a screen. On the plus side, my library card gets a vigorous workout.

I seem to provoke a strong reaction from other sick and/or elderly people. Usually, when I dared to use a smart cart at the store. For whatever reason, elderly men are particularly upset by my audacity to roll along. Maybe they’re just more vocal about it. One told me, as he walked along seemingly normal, that he’d give a million dollars to have a cart to use. I told him I’d give a million dollars for legs that worked as well as his. I really try not to judge people, and I will never be the first one to say something horrible to someone based on their appearance. In this case he started it; that’s my story, and I’m sticking to it.

I’m telling you, the battle for the smart carts is real! The best ever is when I had a care giver with a prosthetic leg. She’d go to war for a cart, then people would look at me like I’m an asshole for not letting her use it. The truth is I couldn’t use a prosthetic leg any better than my real ones. I get it though, it’s a funny picture, even using my manual chair and her pushing me. We definitely got some stares.

I’m so thankful I have bumblebee. When you show up with your own assistive devices people usually take you a little more seriously. There’s still those special few that assume they know more about you, than you ever will. I feel bad their parents never taught them what assuming does.

I guess the moral of the story is: don’t judge a book by its cover, don’t assume and be kind; walk a mile in someone else’s shoes, before passing judgment.

Ok, that’s like four morals. But, they’re good ones.