The Kindred song

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My spirituality is something very important and the word Kindred implies those that sings to my soul. I don’t care what your other passions are, I will hear about almost anything open-minded but when it comes to music……that’s a different song. I think I have a best friend for every type of music I listen to, it was something that hanging out with me was natural. If you come into my home the smell of incense, most likely sandalwood or patchouli relaxes you, the lighting is to make you feel at home. and the decor leaves room for conversation but mostly your music is playing. Amy comes and Pink Floyd is playing, Jamie, Dave Matthews all the way, Kris eclectic excentric. With Jay anything goes and that matches me most we span the decades.

My mom and I it was most often Bourque, some classical, a bit og Jazz and show tunes, quite a few other friends fit that mold as well, show tunes that is.  My Radiohead friends can’t forget them they tend to also be MCR friends as well. A friend posted that she was listening to a song and wasn’t sure why…..she had no idea that it would inspire me to write this.  As I write this I am listening to Pink Floyd’s the wall and Amy is totally on my mind write now. Something as simple as a hook can be a catalyst for prayer, she’s going through a lot, and I know this weekend will bring her a lot of fond memories as she revisits the wall live. OH yes I could be so jealous but I can’t go see stuff like that, I know that she will tell me all about it in such detail as we either watch the movie or listen to the soundtrack.

Almost all my friends are tied to a certain song, not always the one they would think it all depends on when and where naturally. It’s weekend with Jay coming the music is like a festival where you go around and listen to all types of music lately we have been listen to viking music really beautiful..not to long ago it was A tribe called red. With my step son it has been Imagine dragons and Twenty one pilots, he has excellent taste if you as me. I wish I could tell everyone their song or soundtracks but I hear songs and I think of so many of you. Sometimes I bellow out tunes as prayers or light out into the world, sometimes its the only way I can focus. there is a metaphysical explanation for this, frequency and I just happen to be a tuning for kinda person. I have a huge receptor for music.

It can be so intense that I can’t hear certain songs without going back to a really strong moment.  Other times it’s the opposite, I see someone who I haven’t for a while and music will start playing in my head….I think even the thought of the visit triggers what I should play. I love hearing that my space is chill, it means I have archived zen. I have no excuses and that makes my life so much easier. I have a lot of stuff in my room, but I can almost live in a little house something Jay and I have been thinking about. At least now I know what I can really live with out and the ornaments I have mean something becoming art instead of collections. Sadly I was raised to be that way fortunately it isn’t inherent so I move past and let more things go. It really shows how I am, I am the simple homemade kind I just used different mediums. Music brings out the best of me, maybe even as much as my light.

Many Blessings and Thanks for spending some time with me.

Love ~Aida Neufeld

 

 

Pushing boundries

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I went hiking 20161117_162854.jpgI took my walker off-road and hit the trail something I haven’t done or thought of in ages.  I love being in nature and I know it’s not something I can’t do but walking through those trees was rejuvenating.

Right now I am20161117_163222.jpg
extremely exhausted and sore but I don’t care. Kris has always had a lot of faith in me, she isn’t the only one but this idea was all hers. She knows how I feel about being outdoors and I  mentioned before some of the things I miss doing.  I was transformed to a younger me the woods as my home, I was lucky enough to have my own enchanted forest and I was right back there.

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The colo20161118_155513.jpgrs and sounds remind me of who I was and really am, just as I need the shore I needed the woods as badly if not more.  I don’t need much for contentment with this case I didn’t even think this until the drive. Kris took me driving so I took take some photos and I feel the calling. Nature and camera were one making my day, but with the color palate this fall it’s easy. I felt love and light all around me and something calling me deeper in the woods. Kris already had a goal in mind; really taking inconsideration of what I can handle held no pressure over me.

20161117_163215.jpgWhen I was taken pictures along the way as she urged me on, I was getting there and she knew before I did I was gonna make it. It took her saying “bridge” and I was off I pushed my way up this incline that was sorta steep and a little rocky I wasn’t bothered. She guided me weaving the walker from one side of the path easing my way. It worked but I was dragging my leg behind a bit I didn’t know how long there was.  We just kept chatting and I rested a bit I didn’t mind the tension I wasn’t winded so I went with it and followed along.

There finally the bridge and I could hear the creek I started well doing the wiggle run of sorts. I can move it takes effort but it’s often worth it.

All the fondest memories complete with lights colors smells, I found a sort of peace. We sat there a while (I did have to walk back.) naturally the camera was out again I just kept looking and clicking, a nature paparazzi. 20161118_162459.jpg

I drank it all in letting Mother Nature restore me with her blessings I love this time of year so much. Thank you Kris for coming up with this wonderful idea and having faith in me. Someone thought of it and someone believed and now my dream came true, another thing I can do.

Many thanks, blessings, and love20161118_163032.jpg                                                                                                Love Aida

 

You can’t always get what you need.

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No, you can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometime you find
You get what you need

The Rolling Stones

Written by Keith Richards, Mick Jagger • Copyright © Abkco Music, Inc.

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There’s something that happens at certain times of life, some of us are made to be one thing and others something else. There still is a point where you have it in front of you and you have to take it on faith and see what will come of it.  I was at the phase a few years ago and I had no idea what was missing from my life, I just knew that there was something more and I just had to look. God had something for me and I didn’t see it, but I also had to be patient because I had to wait there was a certain time and I knew I only had one chance at this kind of connection. Time progressed and finally…….

I met my kiddo

It was an instant connection just like when I met his dad. It didn’t take long for us to really bond now my stepson lights up my world. I love him so much, more than I ever thought I could. I remember when his dad and I  started out and he told me right from the start that he has a son and it is a package deal. I am so glad I went with it this child…….excuse me, young man has changed my life so much. I think about all the things I would want in a step mom. I would want her to love my mom and respect the love that I have for her. That is how I treat him, I love his mom dearly she is just as important in my life as his. We are pulling together as a full support group for this youngster a mom and dad, with a step dad and step mom. That is a lot of love for a child.

All child deserve this, what they give in return can never be bought; you can’t find it anywhere you have to earn it. I haven’t yet spoiled him but in a way I think so, the right ways. I love when he wants to cuddle between us, I know those times won’t last forever and I will take all I can get. I love his passion for learning something we share; I want to make a positive force in his life. We’d have long chats and hang out the times are great. Then he did something out of the blue. I messaged J like I normally do and it was Kiddo that responded. It was just a small little chat but it made my day, he makes me feel needed and loved and that gives me a lot of strength. I am not just living because I am alive; I am living because life needs me.

I may not fit into the mom’s club, not traditionally but I am proud of my kid. He is studying German on his own time and is doing very well. He was able to read old German text and pronounced it beautifully. He has a gift and I am so glad to see it blossom. He means the world to me and I love him more than anything. He is my world, he makes J and me whole, this is the path God had intended I want to make God proud too. He didn’t have to give me this much and he did. I vowed to him that I am in full commitment with him our bond is as solid as with his dad. My mom adopted me and we still had a great relationship so I know that blood doesn’t mean everything. He also digs his Opa and I know my mom would be awesome with him.

This still brings up a sore subject; I want to have more children to give him a sibling. I don’t always get what I want I surely got what I needed though. We have the same birthday for goodness sake, there is so much behavioral and mentally in common it seems like this is what my child would be like. It makes me confident with having more children because J and I obviously agree on parenting. I don’t want to let my kiddo ever feel left out,  I don’t think I could. I want to give him the world, to show him all the things that I loved as a child. I always did want a small family I am content. Still open for blessings though.

It was just a few texts that’s all but he made my day, my week rather. I feel so loved and from such a little gift, so incredibly thoughtful something I wish to continue. I am not saying that I don’t feel the love from others (me checking to make sure I didn’t offend once again.) This is just different, I belong with them we are this perfect little family and I understand the blessing now not just knowing it is. My life means something more now, I have family that I want to do everything for. A family that lets me do what I have to so I can be healthy and active. I have a different reason to accomplish things it means more because of him.

20161106_222213.png I love you my sweet kiddo

Many Blessings and Thanks

Love Aida

 

 

Being Introverted and disabled

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This is totally dedicated to all those people I shared my art throughout my life with you mean the world to me. My kindred, I am no longer afraid of letting you down.When I say I don’t have friends I mean I stay home for very long periods of times, I don’t have a circle like I once did, it’s meant generally. I know who my friends are and I love them they are my kindred and they know.

I am feeling better, but hanging out with my best friend will do that. She is very kindred to me. I don’t have many friends and I spoke to her about it tonight. There are a lot of people that outgrew me and I am okay with that, as long as I made a difference I guess.  Maybe glad that they knew me once upon a time. I have a great support system and I let my fears hide me. I made her a deal that I would message her every day, I didn’t do so well. I am so glad she told me, I asked her to see just because I like my solitude doesn’t mean I can’t be social. I have learned that it matters little what I do but that I am doing.  I do feel better when we hang out even when we message I feel the friendship.

I know I often speak about what this is like for people like me but it isn’t all bad.  I don’t have to explain to her that taking me out requires time and preparations. There are things I can’t do without my routine requires me to. She has no issues with pushing my wheel chair, and I know that others are the same. The frustration is if you want to hang out you have to come to me, have room for my chair and at least understand my condition.  I am sure you can see why it’s just easier to stay home. I may be missing out from this year’s events but I do know what it feels like, my memory blessing.

I am not afraid of people I know, I just don’t explain things well and I get ahead of myself rambling in a circle until I am totally lost.  I have nothing to be ashamed of there is no blame here, even if it seems I am. My nerves over react and I can’t keep up with the bursts of images of what to talk about, or where to start.  I actually don’t mind learning to get over this fear, it only stems from me being unprepared. I love to talk, and that is what I am good at. It doesn’t matter what you want to chat about I am game for learning or teaching.  I have done both and I am totally fine with that.

There is a point though when you want to change and just be and I feel I know my way there.  Yea it does take some time I have to speak up and it has more to do what I am saying then the volume. I have learned that people care about me and when they tell me not to worry it has more to do with my health. I do have a tendency to over work myself just to justify my living, instead of doing what I am good at and working on my skills.  There is nothing for me to justify, but truthfully, there are some old souls that I want to cook for, sing or play violin with. Talk books and philosophy, pondering life, takes picture with, create, the list goes on. But I work at a difference set of rules; time is so flexible with me I can bend very far before I break.

I am not asking.

I have to do more, I have to show that I am still living and doing what I can for happiness sake. Some of us are meant to live sick, it sucks ask any one of us near 4 million in this country alone (Sjogren’s patients) they will tell you the same things. There are some though that make the best out of things and find other ways to be of use, I learned that I don’t have to be the housewife to be of use. I need to be happy and the rest falls into place. I asked I received this life is a gift the good and the bad and I can make this the point I am finally there. Without guilt that is the challenge.

Many Blessings and Thanks to all.

Love Aida

 

Acceptance is okay….I’m trying.

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I barely slept, I just kept going until the weekends. No matter what I do I can’t stop, and I see why there is an issue with this. Sleep is so important for anyone but when your already sick it is vital, but difficult. It’s not like I haven’t been productive I just lack some balance I think. I know I need to focus on research again, once I get started I can settle on a routine. I got the permission I thought I needed now I just have to act.

Oh, but where do I start? I thought okay I can’t replace my professional bow, I looked for a while and found what I thought was a good online deal. Nope it was similar to the beginner I had but things were glued where I never saw glue before. That’s not defeat just a bad deal, these things happen. I didn’t try it just made judgement, and you know what it sounds okay. I never had this defeatist attitude before, not this bad anyway. I passed my tests I just have to stop this lack luster performance and really be me.

I have to realize that I am not letting people down, those really close to me I mean. I don’t know what more I can do to make them happy. It took a long time to realize I don’t work that hard on making myself as happy. I understand now when I am told I do too much, they really mean it. What I can’t explain is that I never stop…..I mean never. I get so wrapped up in getting things done and productivity that maybe that is doing more harm than good.

I just don’t want to be called lazy, I know that the idea of disability can be seen as getting something for nothing.  Well I am retired if I would have been able to work longer my retirement wouldn’t be so difficult. I wasn’t prepared, I’m still not we are told that there is a magic age for this. There was no class offered on how that all works, if so I don’t think I would have taken it. I would now though, how to adapt and keep up with the illness.

Everyone has difficulties I know that I’m not the only one, which means I am not the only one that feels this separation for the “normal” world. People treat you differently, proud of the simplest things. I need to realize that what is simple to others actually took me a bit of time. I should be proud when I have a really good day and get out. But in all honesty getting out isn’t that easy, it throws my routine off and the effects last longer than I’d like.

That is what I am too hard on myself for, pushing to hard for good days. I can’t do it all, I never could even if I thought I was. I try to I should be proud of that and forgive myself when I have to stay in bed. I’m sick that is what you do I can’t just wear my body down, recovery takes to long. I have to be okay with something that really sucks. Being sick and knowing that if I don’t follow a certain pattern this could take my life.

But who says illness is all bad, this is happening to my body and mind not my soul. It may hurts my soul at times but that is what keeps me strong. So I say screw it I am just gonna go with the flow. I am happy, I have the opportunity of my lifetime, I can’t be a fool with this. My path is far too worth it, I have all the things I ever worked for. I actually am happy, okay I dig.

My friend Cris inspired me tonight, I heard what I needed too and I am ready to make a difference. For myself and there is nothing wrong with just being me. I finally understand that I am allowed to be happy. I don’t owe anyone for my life but myself. I wonder how many times I am going to have to tell myself this? As long as it takes I guess fear or faith, it is up to me. I have more to have faith in than fear the choice is easier than I am making it for myself. I’ll get there.

Thank you all so much, many blessings and love..

~Aida Neufeld

 

 

Personal growth takes personal work.

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This is the oddest time of year for me, I get so stupidly sad. I shouldn’t say it like that but that’s honestly how I feel.  That’s the hardest part of this mental thing going on. Once I realize I my mind was messing with me again. I often wonder if this is directly related to my illness.  I really don’t like how I feel a lot of the time, I hide from the real world even though I”m well informed. I know well enough that I can only repeat myself so many times before I get it.

I have to go and see someone, I am letting go I realize it and I am doing little to stop it. I am letting the wrong thing go.I am just trying to make the best out of life and find a way to continue growth. I am happy with what I am doing, I don’t have to work so hard to follow through I have self motivation. There is just other stuff that I suck at and I need to work my way out of it. I have absolutely no idea how to be retired.

There is no way I am at that part of my life, I am okay with that being the end of a chapter or even a whole book (saying our lives are a series) I just can’t stop here. But having the choice to create a new life with really everything I want available to me how can I just sit and do nothing. There are things I have to do things to keep my  brain sharp. I take self-taught classes and that is all well and good. I need something to be really show me again. There again I am to hard on myself.

I am not giving myself credit for what I am doing for me and my family. I just don’t want to come of like I have all the answers. I just tell it how my life is because I am not the only one. Even though my life is all about me, it’s all about all of us. There is a fine line that I struggle with all the time. I just don’t want people to worry about me, I want people in my life. Introverted doesn’t mean no friends, or communication. I have no idea how I became so comfortable with my isolation, besides needing a certain amount of “me” around.

Another things I believe I got from my mother, I collect a little of this and that somethings get past on and some I just use in my everyday life. My quiet life doesn’t mean I am really all that shy, it really depends on the person. A large group, it doesn’t phase me I still have reminders of home around me. When I am blessed to play at weddings I have my own stand and stool my dad made for me, another bit of home. That makes it easier, also there is this amount of love that comes out that helps calm me.

Now that I am on my meds I really calm and can handle so much more. All this really lies on me, I must have someone teach me this new map. You know the one were I realize I can live my own life without remorse. I always have God, Karma, positive vibes in mind. I am allowed to be open and that doesn’t bother me, it’s the feelings of guilt. Then again that’s silly we all don’t want to do the same things. So how am I upsetting anyone, if they feel I have a life they want that is their deal not mine.

I don’t know if that makes me very egotistical or over empathetic, I am more often known of the later. I guess it is finally sinking in, nobody else wants to be me and that is totally okay. I don’t want to be anyone else and that is a blessing, it means I am happy. It isn’t that easy I had to let the bridges burnt by others burn out, that’s life though. I have what it takes to have a great next part of life. I am free to live and I know my mom is happy,  I still play the violin and a lot of her old favorites.

This seems too simple but it wasn’t, how many times have I spoken about needed this? I asked all the people I needed to and I got the green light so there is no reason for reservation. I know it’s time for action and I have been doing that, everyday another part of the shell breaks of and I feel more like me. More like the person J doesn’t have to tend to as often.  I have a family worth fighting for living for. I don’t want anything to get in the way, including myself.

Many Thanks and Blessings

~Love Aida

Partners with colds, and muses.

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I often write about something I was thinking about, less often it’s a thought that slammed into me. Fewest of all is when I just want to talk. It has been a long time since I felt that kind of dialogue. There isn’t anything I want to hide I am very happy. God has blessed me in ways that may not be so easily evident. I know there are people who can’t imagine their life changing so abruptly but that is really the only way my life has ever changed. I am so sure of the choices I make and I stay faithful until things change again.

I often wonder how everyone else is doing, I imagine quite well and I send love and blessings. I know when someone crosses my path somehow even if it’s virtually, and I respond with love. Let that be one reason why I love to write. Funny in school I had the biggest issues getting my papers done. Well I have  a lot more help now, I do apologize know at least I was paying attention. Now being the weekend I am with J and I love it, we are always happy and things always smooth.

He is very active in my illness he does a lot to help me think about things I get twisted in my head. One blessing is we’re listening to music together I am here talking to you guys while he is studying norwegian on Duo.  Some disabled people spend their time learning new things, linguistics is one, it’s just an app, but we have learned that you can learn several at once is there are from the same region so to speak. It’s really cool, I can sort of understand what he is saying, all I know is he keeps passing.

It reminds me of colleges and conversations in relation to what we studied. We just pick the subject and learn what we want about it. I don’t know if I could find a degree that makes me feel this complete. I feel bad like I love what I do so much but I am still doing what I did as a child…….

(He switched to swedish and he made the swedish chef joke, as he makes a face and says something a little flirts and I said “don’t make me blog that” he had the cheesy smily and the replied ” you’re gonna tell people you love your dog”  We laughed and back to work)

I was always surrounded by all of this, somethings are dreams that manifested. Some I just can’t do without, I have to listen to music it like sweets for the ears. I have a good life, there are just demons like everyone else. I used to always have control but this I have been changing for a while, I am not used to controlling the change. Yes people can because I want to. I want to be proud of myself everyday, I want to keep making my parents and J proud. I don’t see anything wrong with that. It is my work ethics by using the gifts God gave me.

It matters to me, he went through the trouble of making me this way, so I will be the best me. I have been letting myself down a lot and that is my number one change. So not everything in life is going to be easy, something my childhood seemed to be. I enjoy the efforts and that is because I love to learn. I don’t know if my teachers knew this but I do, I would just rather be on my terms.  I used to be able to justify what I do know with a job, so it was all just extra. Now this is my life and the illness the job, full-time dedication but little is needed. That’s the sad part.

Just a little deviation can make me so very sick, I am there once again. The sleep sickness, the barely eating, nightmares. I don’t want to list all my demons now, I am aware of them and that’s more important. I had enough of the grumpy getting on my case and its shooing time. I am okay with being happy with my life, illness included, without it I wouldn’t be here anyway. Here is a place I dreamt about being for so long that I still am having issues adjusting to the change.

So what would positive me say, I have a lot of lessons to complete this change. Sound and noises make for a better work environment for me. It reminds me of study hall where talking was allowed, or sitting in the quad doing my thing. I don’t know why I prefer isolation but that doesn’t mean I don’t like to see people, I would just rather little chaos as possible. With that said there is always at least tv or music and some times both playing when I write the best.

I also feel my muse, it has been a long time since I let one close enough to have this kind of comfort. I can just feel and be, I don’t want to feel guilty for not living a normal life, or the standard. I am trying to do what I can to contribute and that is more important, I have reason to get up and work more often, not just doing what I felt others was most important. I was just thinking about myself not doing anything about it. I don’t have to exhaust myself everyday to have a spotless house.

I have roommates they don’t care if there is a dust or cobwebs, they both really just want me to be happy. Everyone just wants that and I know why I have been known to be quiet a bright light that way. I feel it the goofiness and child like passion for learning again, I have asked for some outside motivation. Just like school except I do get things in on time, I need this for me.  I figured out that I’m doing nothing wrong, grieving a loss this long. How many times am I gonna say it till it sinks in, I am sick thus far I will always be sick. They haven’t found a way to make my  life any different. There is nothing for me to wait for.

I have to see the doctors like I used to, I once was a model patient. My illness is a job, and I have meetings to get ready for. It is a far trade for having the time to do what I love. J and my step son are a blessing and making them proud is enough to push me on the right path again. I want to be what they love most about me. They give me such a reason to live I love them so much. Thank you

Many Thanks and Blessings

~Love Aida