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Tag: creative writing

Too disabled to be hired, too intelligent to ask for help.

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It’s no secret that I have Cerebral Palsy. It’s also no secret that I’m well-spoken, and can function well, as far as in terms of cognitive processes. Basically, I’m self-sufficient and I can think pretty darn straight and logically.

It is rough living in the in-between of anything, especially in terms of abilities. I just got off the phone with a resource provider in town that basically told me, in so many words, I speak well so therefore I dont seem to need assistance and that I should make sacrifices in order to be independent.

After every sentence I spoke, after she collected my info, she kept saying I could “tap into resources”, (as if, as a disabled person with an extremely small support system, I haven’t exhausted all of them already), or that we could “do a Google search” online for odd jobs or other ways to bring in income.

I had already told her we had to trade in our car, we had to move, sell everything we owned, I put down cash for a deposit as well as first months rent on my own FROM SELLING EVERYTHING I OWN, and you mean to tell me, even though you haven’t seen me or my wheelchair (that I have to make payments on), that I need to sacrifice more? Yeah, no.

There’s nothing left to sacrifice, and I’m proud of that. I’ve done more than people on two legs would dream of doing, including risking everything to pave a path for myself.

In the South, there was no assistance for me. I lived without it for years. I’m not going to pretend I’m not disabled so that I can keep up with the Jones’s. I’ve been there and done that.

The simple truth is, we are all subject to aging, ailments, disability, and death. We will all have to experience being in need of care, and we should face that with humility. Otherwise, we’re in for a rude awakening and a huge blow to our pride.

I wouldn’t have sat on the phone with this person for over two hours if I had other options to consider at the moment, and she should know that. Where are the people that mind their own business?

It wasn’t like she would give me the space to say that yes, I was rejected from over 200 job positions BECAUSE IM DISABLED AND THEREFORE HAVE GAPS IN WORK EXPERIENCE. She wouldn’t let me speak but offered ‘advice’.

Please, if you can make someone hire me for a steady job, let me hear about it; because I can for sure say I dont want to be on the phone with someone who talks down to someone just for calling them.

Power imbalance much?

Go work in robotics or some shit, or better yet, go be a social worker and help someone less fortunate than you with all that knowledge you seek to possess, lady. Please let me live.

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Tomorrow

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Tomorrow I’ll be back in the swing of things, and I’ll once again be posting regularly. I’ve moved and was without steady internet connection for a while. I have not abandoned this home I’ve made. I hope you, little reader, forgive me for my absence. There is still a place for you in my heart and in my words.

I have still kept my word that I’d put everything into this blog as well as into my artwork. Currently, I have an amazing air mattress (I’m not kidding, it’s amazing)! and a projector that serves as my TV. Honestly, it was a pretty cool idea.

My apartment is empty but my heart is full. When we rid ourselves of the “stuff” that was weighing us down, doors opened, literally and figuratively.

I don’t feel broke, or broken. I feel accomplished and confident knowing that when we need to, we can make our lives work. Making decisions that are scary can be liberating.

We had to sell our vehicle for a cheaper one. We don’t regret this decision, although it really stung to trade in a car that had just recently been paid off. Upon leaving the dealership we got pulled over and were warned that we had a brake light out. Needless to say, we were both pretty irked, as it was sold to us this way.

Freedom is indeed chaotic at times! All we have is each other now. We do have a good friend near. The three of us do our best to look out for each other.

Once settled, I’ll do my best to build again, one day at a time.

I’m excited to get back to volunteering with CrisisTextLine. It’s the one thing I’ve missed most while being “unplugged” for the good old internet. I missed putting my time into something that saves the world, I guess.

I know my latest posts have been conversational, and perhaps even a bit off the beaten path, but if you’re still with me, thank you so much for being here during this tumultuous and beautiful time. We’ll figure it out as we go. Tomorrow somewhere between 1-5, I’ll do my best to liven our humble corner of the internet up again.

I will always remember you, fellow bloggers, artists, wayfarers and dream chasers throughout the day, and hopefully keep you good company as I continue telling you stories of healing through written word.

I love you.

Welcome Home.

You’re safe here.

I am pretty peaceful these days.

Paying Homage To Caregiving, And Being Taken Care Of – Part 2/2

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Hello again, and welcome home. It’s so good to see you!
This post is going to be almost entirely subjective and deeply personal; I hope you are still able to relate in some ways. Let’s begin.

After thoughtful deliberation on part two, I concluded that I would let you in on my experiences and how I cope, often rather clumsily, with being confined by the limitations of my vessel.

The truth of the matter is simple. Sometimes I can cope. Other times, I’m angry that a chair is a reason I’m not yet gainfully employed. I feel guilty that I need so much help, even though for the most part my life is pretty normal: I can cook, manage my household, take good care of my spouse, I can speak, write, and flip people off when I need to. 😛

I don’t even mind being disabled. I’ve been this way since birth. What I do mind, however, is the warped perceptions of other people. People are understandably curious. Some situations are nothing short of ‘cringeworthy’.

As an example, when I got married, it was so strange to onlookers. I am blessed to have my wife; she bathes me, cooks, cleans, and I never need to ask her to pick up the slack or help me out with anything, really. She knows what I need before I do at times. We work.

Some folks never get to experience that kind of love and care, like this dude we ran into in the Wal-Mart parking lot.

There we are, loading our groceries in the car before going home, and he approaches my wife and taps her on the shoulder. He says, “Who is this? Is this your sister?” (Referring to me as I’m standing by the door). She says, “No sir, this is my wife.” The look on that guy’s face was worth a thousand words.

After a few long seconds of awkward silence, he looks over at my wife and replies, “Wow, you’re an awesome person – not a lot of people would do that.”

Look, don’t get me wrong. I get the sentiment. It was wonderful. In my opinion, he is absolutely right. My wife should win the Nobel Peace Prize for all the devotion she’s demonstrated to me. It’s my job to tell her that.

If she wanted people randomly stopping her while we’re just going home, she wouldn’t be in a monogamous marriage. I don’t need to be treated as a charity case or be viewed as an extra sack of potatoes.

Let me tell you, friend, my wife, the one on two perfectly good legs, ain’t all that easy to be with either. None of us are! If my extra needs are a little bit too extra, she would’ve been gone by now. I know I sound bitter, but I’m not, for the most part. Forgive me if I’m just astounded by how conditional commitment has become.

The guy didn’t have any bad intentions, but some shit should just remain admired rather than pointed out. Even better, how about saying you admire us as a unit, a team, a healthy marriage?

It’s not like I just sit and look pretty. I look a little bit scary and pissed off most of the time to be honest, especially if I’m low on caffeine.

Maybe I take care of my wife’s heart. Perhaps, and this is just my take on things, maybe she likes taking care of me because she gets a lot out of it – like love, strength, purpose and reciprocal appreciation?

Maybe the fact that I hold her at night is more than enough according to her individual needs, even though my needs are vastly different. Although independence is of great value in this world, perhaps me being in need of care isn’t an issue because there are always people in the world who find great joy in serving others?

Maybe she knows that I’m the type of person who would do the exact same thing for her if she were also in a wheelchair. Maybe I’m just badass and she recognized that instead of just looking at the hunk of metal on wheels I use to get around.

I struggle to remember this more often than not. I struggle with feeling like I have nothing to offer because of my physical limitations. I’ll probably always struggle with it.

If you’re in the same boat, it might be a challenge for you too. We just have to remember that everyone’s looking to be loved. We know a lot about love if nothing else.

Maybe we’re not right for the world, but we’re right for the ones who love us, and that’s always more than enough. Love is always the best thing to offer someone.



Paying Homage to Caregiving, and Being Taken Care Of – Part 1 of 2

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On one hand, living with a disability or chronic illness creates so many barriers; nearly all of these vary or are contingent on a plethora of routes and lives lived up to this moment/up to the onset of disability.

On the other hand, supporting someone with a wide variety of needs, such as someone in a wheelchair, or a loved one who is meeting the passage of time – that’s no walk in the park either.

It is difficult to be the helper. It is also challenging to be the one who needs help. At some point, we all will be fortunate enough to understand both perspectives and their respective realities.

If we are in this dynamic, we might find ourselves feeling guilty for what we can or cannot offer the other, both may feel inadequate or undeserving of the other at times, and because it feels as though we are on opposite sides of the fence more often than not, this can also mean we are prone to forgetting what a sacred relationship we’ve been given.

In my life, out of all of the other relationships I have witnessed or been part of, there is no greater relationship in which two people are more able to give and receive love than that of the caregiver and the loved one to whom care is given.

I have been fortunate enough to see both sides of the “helper/helpee” coin. I’ve needed help, and I’ve been there to help others as well.

One thing that I see most often from people who have Cerebral Palsy, a Traumatic brain injury, or another illness is their struggle with allowing themselves to receive the assistance they deserve.

For some, it may be a matter of pride, modesty, or sheer self-reliance; for others, and I suspect for all of us who have had to look to others for support, and in harsher circumstances, survival, the issue is a matter of much more than surface-level traits. With this in mind, I’d like to express my perspectives on what it felt like to be in each place drawing from my own, perhaps limited, but no less truthful experiences.

To the beloved well-meaning caregivers:

You’re doing the best you can with the tools you’ve been given. These resources are often limited and scarce, and it is you, the advocate, nurturer, and lover who often bears the brunt of your family member’s/patient’s/client’s frustration. I see you. I personally thank you. You are doing God’s work.

If I may, I’d like to remind you that the resistance to your help isn’t out of stubbornness or a desire to be contrary: Resistance is often just a big word for fear. Fear of being of too much, fear of being seen as more of a taker than a giver, fear of facing the prison we sometimes find when seeing our atrophied legs or degenerating muscles, or our declining mental health.

We know we’re difficult to be around. We know you’re tired. We feel that. We know we’ve been in eleventy-seven different moods by the time night falls. We know, no matter how much your good heart denies it, that sometimes we ARE the reason you’re burnt out.

We want you, our caregiver, to know its okay to be tired, and yes, we know you’ll never admit to this because you dont want to hurt our feelings or cause us to feel as though we’re a chore to be dealt with.

Sometimes that makes us, the loved one you’re taking care of, sad. Not because you’re doing something wrong or because we are ungrateful, but because we want your life to mean more.

We don’t want to be the reason you’re held back. We love the quality of your care and of the neverending reach of your love; so much so, that we would also love to share the gift of you in your entirety with some other well-deserving people too!

We often feel as though you’re chained to us by unfortunate circumstances, and we forget that you’ve chosen to care for us because you love us. Sometimes we need to be reminded that you’re here by choice, not because you got stuck with us. Remind us that we didn’t get any less cooler just because we need you more than before.

I’m willing to bet we both forget why God placed you with us: because you have more than just the capacity to love us best. You’re also really good at it, even when you think you’re falling short.

You know just how we like our coffee, pancakes, and sometimes you have to put us to bed or remind us to eat, take our medicine, or tie our shoelaces. You manage to do these things without making us feel worse about the fact that you’re probably the only one who cares enough to do these things.

Let’s not forget your remarkable and convincing arguments on why we’re not the burden we see ourselves as: It is a core belief system you’re working with when helping someone who is disabled in some way.

Speaking from the perspective of someone who is disabled but also works as a volunteer crisis counselor: There’s so much pain involved in asking for help than one might realize. In a sense, it is similar to a collapse of self.

Asking for help is more than just succumbing to percieved weaknesses or afflictions. Oftentimes, grabbing the hand of someone who reaches out to assist you says a great deal not only about one’s level of trust in the person, but of their trust in the world as well.

If I grabbed onto someone else’s lifeboat before I found yours, and the last person tried to drown me under the guise of saving me, I’m going to think twice about accepting your help, even if you’re trying desperately to drag me to shore. Re-establishing trust/building rapport/showing me your intentions is important.

Asking for help is revealing to you that I am a vulnerable human being. It is giving someone access to a wound we would really not like to be shamed for.

There’s a reason no one likes unsolicited advice and hovering, though the intent is to help. Sometimes it communicates that a person may not have enough faith in the bond that is shared, or in the abilities of the person you’re advising. After all, if you’ve told me I can come to you, will you keep giving me advice, or would it be better to let me explain to you what my needs are, and then you help? How can you help if you don’t know what my needs are? Jumping in to help can tell the person that you doubt their abilities; ultimately, you don’t trust them. They will respond in kind, even if you’re intent was the opposite.

Asking for help is an art, just as much as giving it is. Trust that the person you are caring for will come to you after you’ve built a bond, and they will come to you; otherwise, it can come across as nagging, harassment, a sales-pitch or manipulation.

See? All of that is required before someone can comfortably depend on you, especially if they’re disabled and need to keep boundaries in place more so than another.

TLDR, if we bite back, we’re scared. It’s not that we don’t love you, it’s probably just that we’ve forgotten that you love us.

Validation

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In someone else’s story, we are a villain. Despite this, we must know our own truth. Knowing is not enough, however.

In addition to knowing our experience, we must also give ourselves back to ourselves.
We must reclaim our lives back from the people, places, and even the very things that bring out the victimhood in us, even if our biggest obstacle is our inner critic.

Learning how to talk back lovingly but assertively to the voice inside that tells us we are undeserving, too lazy, too noisy, too loud, too much – is, therefore, an indispensable key to living life wholly again.

Validation of self is far more effective than validation from another. We won’t always have someone there in the flesh to make us feel good. We won’t (or don’t) always have a lover to tell us how beautiful, priceless and intelligent we are.

Self-love begins the moment we realize we don’t need someone to tell us we poop gold because we already know we do.

On ‘Eating Shit Sandwiches’

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Dust settles…

We packed what we could and left.

Our first venture with an air mattress didn’t go so well. In our first go-round with balloon beds, we slept comfortably enough but would wake up two or three times a night. The air had vacated its dwelling place inside the mattress and decided the floor could hold us up.

We got a new one and saved our backs. For the most part, it’s holding up nicely; I didn’t wake up on the floor as I did with the other one. These past few nights have been kind to us. Both of us are grateful and humbled by the scenery, a good night’s rest, and the gift of the weather’s unpredictability.

I’ve neglected everything in moderation. I now fall asleep at normal hours, and I wake up before noon. Before, I was completely nocturnal. I’d be wired at 4. A.M. – watching the sunrise should never get that old.

We still hold hands, even when we’re asleep. (July 2014)


The water here is different. Showers feel as if you’ve gotten cleaner. Soft water has a tendency to keep your body slick. In contrast, hard water slaps the residue from my outermost organ (if the skin is still considered an organ, anyway). Yes, hard water and soft water is a thing. I didn’t know that until a few years ago.

An address is the furthest thing from my mind, even though the fact that I’m writing about it says otherwise. I’d be lying if I said I was in a rush to get one. I’m not in a hurry, and this town isn’t either.

What a change.

As for me and my family, we were only able to leave with one of our animals. Letting go was hard, but we made the right choice as far as those kinds of painful choices go. It’s funny when we first moved into those duplexes, we were asked to choose which dog we would keep.

In the past, I was unable to make such a decision. It’s like picking a child, and though we all have those we gravitate toward, letting go of the one you don’t think could get their shit together always seems wrong. At the time, we could afford to pay to keep both, and it was the right choice for that timeframe.

This time we were faced with that choice again.

Banjo (left) Annie (right)

(It’s too cold here for him, too noisy, and we decided it wouldn’t be in his best interest to live with us). If there’s such a thing as a good parent, or parents, I believe it would look like the parent who puts the interests of the child before their own wants and anxieties. We wished we could take him with us, and we were going to, but our judgment stepped in, and everything worked out.

We opted to have an older couple adopt him, and they were more than happy to oblige; they said they needed his energy around.

We couldn’t prevent our pain and we couldn’t hold our back our tears. Before that day, I hadn’t touched a cigarette in years, let alone smoke one. Yet, when we brought him to his new parents, I took the one I was offered without so much as a second thought. I said goodnight to him, though nothing would quell the sharp pain we both felt.

My heart kept pulling me to his new home. I could say nothing; it was in the middle of the night. I gently tapped the part of the house where his room was and tried to ignore the fact that I probably looked as if I’d gone mad standing outside of the duplex. I told him goodbye and reminded him (and myself) that I wouldn’t bring him somewhere I thought he would come to harm, and that this decision, though devastating was the best I could do at this time.

My wife still misses him fiercely, but now that we’ve arrived we both agree that this would not be a sufficient place to house him, he’s nervous enough already. I hope he’s well. He never liked the rain, and so far, it has rained more often than not.

Me and Banjo at Bedtime – 2018

As I write this, I realize that this blog has become more about the conscious art of letting go than anything else I had intended. I’m okay with this. I hope you are too. I’m not the type of person that can write a niche blog, though it is wiser and perhaps more lucrative to do so. (I don’t care if you do, do your thing)!

It is true, isn’t it? We teach what we need to learn. I have never been great at goodbyes or letting go. I have trouble processing them, but the more I realize they are often inevitable, the less I suffer.

Pain can’t be avoided. Choices have consequences. Thinking through our fears and shielding our eyes from the terrors of a life lived well only works for a short while.

Letting go of my dog, Banjo, taught me everything about the pain of goodbye and marching forward after a decision has been made. Sometimes, there is no choice less shitty than the other.

Sometimes choice demands you to shed skin, to lose everything to gain something better. Sometimes you need to decide what part of the shit sandwich you’d rather eat, knowing that whatever side you choose will undoubtedly rip your heart out.

We do the best with what we have in the shed, and the tools we are given are all we have, so we might as well learn to build a home when the first house gets burned to the ground.

I love you.
Welcome Home.
You’re Safe Here
.

Step 1: We Admitted That Our Lives Had Become Unmanagable

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I did it. Tonight, I joined a Codependents Anonymous Support Group, otherwise known as Coda. I am codependent to a larger degree than I had thought. I also don’t know where all of this shame is coming from, but I’m happy that I’ve taken the initiative.

I’ve known that I was codependent on an intellectual level; tonight I dug a little deeper. This happened by accident. Someone who is struggling was referred to me yesterday evening. My friends know me as someone who is kind, compassionate and a person enjoys lifting people up. I really do love being a helper.

The issue, here, is that I often suffer from burnout. I will toil, and toil, and will not rest. And boundaries? Pfft! Hardest thing ever!

Not to worry though, I’ve taken baby steps. I can acknowledge when things are getting a bit hazy, and when I need to step back. As an example, I formed a bond with my friend and we clicked instantly. Consciously, I put in the effort to ask her if she’s had enough time to “recharge her batteries”. If she has, then we talk. If not, We miss each other healthily until our next conversation.

___________________________________________________

Growing up without a mom for most of my life was really shitty. It still is. My mom deserves to rest in peace. Therefore, I won’t go into too much detail about the why and how of her passing. I only know that losing her was brutal. I was a self-absorbed little shit, as all children are, (and I try to constantly remind myself of this so that I don’t punish myself for her death). I digress.

I didn’t have the chance to appreciate my mom.

I was busy trying to sort out these weird feelings in my head, like “Why are these teachers so mean to me?” and “Why can’t I go to my grandma’s house? Nobody screams, fights, or flips their lid every two seconds there.”

And: “Why are you screaming at me because I can’t count quarters correctly?”

Look, I love my mom. I know moms are stressed, tired, and way undervalued; I’m just stating my truth.

My mom could not cope. My mother loved me and I loved her, but it is simply time to let this shit go; I will never be able to move forward if I do not. My mother could not cope and I got the brunt of all the irritation, jealousy, and insecurity.

I catch myself behaving in these negative ways. It’s time for them to stop.
______________________________________________________

So, yeah: step 1: My life is a mess at this point, though I do have to say I’ve still made awesome progress. Now, it’s time to change my stinkin’ thinkin’ and realize that even though things are a mess, I’m still worthy.

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