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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.

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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.

10:43 P.M.

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My house looks emptier as the days roll on. No kidding, I’ve gotten rid of almost everything except my tapestries, and my desk (which I plan on trading in for a smaller one). Of course, I still use my laptop to write to you on here.

If you’ve been following me since I vowed to you that I would put my all into my art, and into pursuing my passions while encouraging you to do the same, you’ll be happy to know I’ve kept my word.

I’m sitting in an almost empty apartment. I still can’t work a 9-5 job. I still promote my coaching sessions when appropriate. Happily, success found me by the word, ‘no’.

A friend of mine always puts herself before others; with my guidance and her own inner strength, she finally put herself and her needs first by saying no… to me! 🙂

Ah, when you’re own teachings backfire on you, you know you’ve done a great job.

I was not angry or upset, I was so very proud to know that she had come so far after just talking with me a few times.

Having mentioned this to you, don’t ever underestimate what you can offer someone. I have been in a wheelchair all of my life. Sometimes just your existence is enough to turn someone’s outlook on life around.


The first smile

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the first time she smiled at me/it felt like her smile was forbidden/She buried her face in my pillow and she laughed as she bared her fangs/she never used them as a weapon with me/and I felt like I was one with the pack/Age wasn’t a factor and we/ fell in love starting from my first glimpse of her copper hair/Lines I traced in her hands/Often, I’d wonder why she’d chosen me/evidently fate had chosen us

Indigo

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There’s always been someone there when I felt like I wanted to end my life. Giving up is harder than pushing forward when there are these indigo children just like you, begging you to listen. So I do. I do not mean indigo children as in ancient aliens or the oval-shaped dudes on spaceships. I mean indigo, the color a child chooses to smear on her oil-painting as she tells me, someone who is three times older than her that I cant control my life, and that when I’m sad there’s nothing I can do but feel something.

There’s always someone there when I want to end my life.

She welcomes me home and does not know I have been trying to be a safe place for others to lick their wounds in, but still I am the altar left to collect dust from their mouths.

She says we’ll get out of here. She welcomes me home, and I forgot that I wanted to die.

There’s always someone there to remind me of what it means to be alive.

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