savoring life

Chronic Disability Chaos

Posted on by kkwrites8739

There’s one thing living with this disease guarantees; chaos will happen.

I have this plaque hanging above my living room door to remind me that one must have the chaos to get to the results of living.

Amazon.com: Chaos Chinese Framed Calligraphy Print, Oriental Calligraphy: Art Prints: Posters & Prints

One moment. One day. One item of chaos and the next little while in my life is FUBAR.

I’ve always tried to be an independent woman who doesn’t need anyone to be happy or whole. This unfortunately led me to also dislike asking for help. Being a single mom made it all harder. Having a child with special needs added more chaos.

Right now I have an awful lot of people telling me how to live my life. I KNOW they are coming from a loving place wishing only a happy life for me. However, that is one thing people who live with disabilities hate the most. The thought that they might know what’s best for my life even though they’re not living it makes me livid.

One friend, speaking to me like I was a child, kept repeating to me “You CAN’T fall again. You can’t. You have to live in a way so you don’t fall.”

I was living my life. I was doing what anyone else who lives in MN does. I was snowblowing my driveway. Like I’d done many many times before and because I AM capable of doing so. Think it’s OK to tell someone to not do what they can because something “might happen?” Do you tell your kids to not grow up because something “might happen?” For heaven’s sake no one lives in a bubble. Anything can happen to anyone at any time. No one wants to live in fear.

This same person told me he was very angry with me for not asking him to do things for me. I do and have asked him to things for me that I CAN’T do. Why should I ask people to do things for me that I CAN still do for myself? Because I “might” get hurt? Because it will cause me some pain to do it? Do ya’ll have any idea how much pain I live with? LOL! Plowing the driveway only causes me as much pain as mopping my floors. Should I not clean my home either?

This image has an empty alt attribute; its file name is see-me-despite-disability.jpg

There was this other guy who I thought about dating, but he told me I posted “so many things on my facebook page that were about chronic illness and pain,” so he figured that was all I was about or perhaps I was making up how much pain I was in. I post about pain so my friends can learn what my life is like and know when things are good or bad. I post because I’m not often out in the world to see anyone in person and talking on the phone is difficult with hearing aids sometimes.

I have a plethora of friends telling me to make sure I always have my phone with me. I was outside in my own yard snowblowing. I didn’t put on my hearing aids because the plow is so loud. Why would I bring my phone that I wouldn’t hear either? Do YOU always have your phone on you every moment of every day? Do I remind you all of the “I’ve fallen and I can’t get up commercial?” The commercial for elderly people. It’s a commercial about wanting and needing to be able to live on your own despite illness or disability. People are only seeing that they fall and need help. They aren’t seeing the happy person living their best life.

So I was living my life and something happened to me that can happen to anyone, but I get messages to take better care of myself. I get messages that it’s my fault I got hurt because I should know better than to do things for myself. I get messages that I’m a lesser person and must rely on others at all times and if I don’t then I deserve the consequences. The message is that I should do nothing, not even the things I am capable of doing.

Even my son, also with the same bone disease and living with chronic pain and disability, wanted to punch the friend talking to me like I was a child. I realize it’s the “way” he was talking to me, the words he was using that my son and I took offense to. I realize he had no intention of making me feel like that. I realize he needed to make himself feel better. But, I simply don’t NEED him to do things for me that I don’t want him to do! I don’t need “taken care of.”

I complain when I DO ask for help with something and then no one is there for me. THAT’S frustrating. But then when I do for myself I sure get a lot of people angry at me for doing something on my own. I’ve been snowplowing my own driveway for years, despite the pain. I’ve asked for help when my snowplow was broken and not received it when I needed it. So, no, I will not stop doing it myself when I can.

When I can. Now, I can’t. So, ya it’s still winter so I WILL need help to do the driveway now. I even need help to put on pants, socks, shoes right now. I have to depend on my disabled son for this. I have caused him an increase in his chronic pain since I got injured. I can’t stand up to cook, I need to figure out IF I can drive, I can’t clean the house. Those things I will need help for, for now. And I’ll ask. I am seriously doubting that I’ll get anyone to help except my son and the guy who talks to me like I’m a child. I have friends that I don’t doubt would help me, but they don’t live here, they are elderly, or they are disabled themselves.

Chaos. I like the way life is constantly changing. I can go with the flow. I’m trying not to be angry at how these people think it’s OK to tell me how I should live. It’s happened before, it will happen again. We must push against difficulty to make our dreams. I have a dream of a world where people with disabilities are treated like other people. A dream where simply living isn’t more difficult for us. A dream where whenever ANYONE needs help they don’t feel bad or guilty for asking for help or have others tell them how they should live instead.

I’m just going to add some stuff from the internet:

If you see a person with a disability struggling with something, your first instinct may be to jump in and help. However, without knowing that person’s specific needs or intentions you may be doing more harm than good. Always ask before offering your assistance.

  • Sometimes, a person with a disability may seem to be struggling when they are actually fine. It may simply take them longer to do certain tasks, but that does not necessarily mean they need a helping hand. If you think they might need help, just ask.[6]
  • If you see someone with a disability struggling, simply say “Would you like any help?” or “Do you need assistance?” You do not have to say any more than this.
  • If someone declines your offer of assistance, do not be offended or insist on helping. Simply go on with your day.[7] They know their needs better than you do, and pushing them would come off as rude.
  • Do not offer medical advice, especially if you are not a doctor. While suggesting yoga for someone with chronic pain may seem helpful, remember that person already has a doctor who knows his specific medical history and giving out advice without solicitation comes off as condescending.

Ask before helping out. One of the first responses of many people when they see or meet a disabled person is to try to give them help. While this gesture may seem kind, you could actually be irritating them or getting in their way. Ask if they need you to perform a certain task.

  • “Would you like me to push your wheelchair?”
  • “Do you need help walking?”
  • “Would you like me to guide you?” (to a blind person)
  • “Should I move this chair out of your way?”
  • Let the person tell you what they need instead of automatically assuming what they need in the moment.[1]

Know that disabilities can be more severe on some days than on others. They can waver based on the person’s energy level, the weather, what they did today, their general health, and many other things. Just because someone can or can’t do something today doesn’t mean it’ll be the same tomorrow.

  • Wheelchair users may be able to walk short distances, or may even be able to go without wheelchairs some days.
  • Autistic people may be able to enjoy hugging one day, and be unable to handle it the next day.
  • When in doubt, ask.

DON’T MAKE ASSUMPTIONS
People with disabilities are the best judge of what they can or cannot do.
Don’t make decisions for them about participating in any activity.
Depending on the situation, it could be a violation of the ADA to exclude
people because of a presumption about their limitations

People who use canes or crutches need their arms to balance themselves,
so never grab them. People who have limited mobility may lean on a
door for support as they open it. Pushing the door open from behind
or unexpectedly opening the door may cause them to fall. Even
pulling out or pushing in a chair may present a problem. Always ask
before offering help

Posted on by kkwrites8739

We are all tired right now. Pandemic fatigue. Election fatigue. 2020 fatigue.

Too many things have happened this year to bring the collective human spirit either together or apart. Over 250,000 of us have died. Every one of those people had family and friends. How those people left behind manage on now is questionable.

Some have chosen to be angry and be selfish. Something that is simply meant to save lives has been made political. Especially here in the USA I think humans have lost track of what it means to be part of family and friends because we are too close together.

Some of us may live in a rural area, but it is too easy to reach out on technology at the touch of a finger; so we are still figuratively close. There are still areas in our world where humans don’t have technology. It isn’t just a quit pop of thought to grab the device in our pocket or purse.

Less than 100 years ago the idea of going over to see the neighbor took planning. A person’s day was full of doing things necessary for staying close to home and going away from home took time and miles. The use of horses, taking food with you, and maybe not even calling ahead to let them know you were coming. Yet you were welcomed upon arrival.

We honestly take it for granted now that we can reach out in a split second and talk to anyone anywhere. Even the most remote of places can, at times, be reached via 5G or satellite. We want it all and we want it now.

Humans, especially Americans, have grown accustomed to instant gratification and entitlement.

Enter a global pandemic.

Demands for an entire world to not just slow down, but . . .stop. Stay in one place. Don’t see family and friends for days, weeks, months. Figure out out to work a job from home. How to BE with each other, stuck, and falling over each other in a confined space instead of constantly being in motion away from the home.

It may feel like going backwards. We used to not leave our home base for long periods. We grew, cooked, and ate our food at home at a table. We did our schooling at home, often with anything in our surroundings being the stuff of teachable moments. Maybe one day a week a special trip was made into the nearest town for shopping, visiting, or religious escape. This was the life of our grandparents.

Life leading up to 2020 was full of not growing our food, but shopping, sometimes daily for whatever to make for supper or for fast food. Education was supplied, most often, away from home at schools. Our children spent time at daycare while we worked. Families complained of not having enough time to be together.

Suddenly 2020 says now you must all stay together constantly in one building for long periods. Children are in the way. Our jobs either figured out how to work from home or we now don’t have a job. Shopping was done by buying in bulk on one trip. Families now want time away from each other.

We have forgotten how to be. Be still. Be together. Breathe. Relax.

We are angry, sad, frustrated.

That doesn’t mean we should forget about keeping each other safe. Yes, was want to go out. Get away. See people we haven’t seen in months.

Too bad.

Because so many refused to care for how our actions affect others in the first place is why we are having to close down even more now. It’s the holiday season and as American we expect, we demand, we need to celebrate with family and friends. Yet it is that feeling of entitlement that has lead so many to not social distance.

And why so many of us have lost loved ones.

We want to get together with family this holiday season, too. We need to be close. We need to grieve. The virus doesn’t care.

I KNOW we’re used to getting what we want, but right now we MUST think of everyone and not be selfish. I want to see my family, too, but I also don’t want to possibly make them sick. I don’t want to get this.

All I can say is: I miss my brother. A holiday is only a day on the calendar and it only has as much meaning as we give it. Family CAN get together later. We can live video visit. We can use cell phones any time of any day.

Stay home. Mask up.

Please.

Don’t judge family members that fear the virus and don’t want to get together. It’s because we love you that we are staying home.

Stay safe out there.

Now

Posted on by kkwrites8739

The thing to do these days is to try to “be in the moment.”

Is this difficult for others? Maybe it’s just a single mom thing, but I seem to constantly be thinking in terms of the future. What’s for breakfast, lunch, or supper? If I don’t do laundry today, will there be enough “?” for tomorrow? What needs to go on the shopping list? Do I have enough cat food and cat litter to get through the week? The PLANNING of life doesn’t seem to coincide with being in “the moment.”

How do others LIVE their life and stay in the moment at the same time?

I guess the Mindfulness Movement isn’t so much about not thinking ahead, but being thoughtful about WHAT you are thinking. I can think and do things at the same time. I think.

It really is difficult to think about what you’re thinking. Our world is full of distractions (did I mention the cats?) I know I am bombarded with self-consciousness about almost everything I do. That may stem from being raised by a narcissist who always made me feel like crap, but I want to give this a good try. I believe I CAN push out the buzzing thoughts that keep me awake at night, but how?

That “monkey mind” seems to be creeping into the background more often than not. I’ve been told to “just stop, and breathe.” Listen to what I’m thinking. Do I really need to think about that or allow it to control my emotions? So I’ve been trying to greet my onslaught of thoughts with “hello, I hear you, but I don’t need you.”

Wanna know who my best teacher for this is? My cat, Ninja. No matter what I am doing, when he needs his Ninja Time he needs it right in THAT moment. I used to push him aside and think he was being obnoxious. Currently, when he jumps up on my lap and I’m mid-search on the computer, reading a book, or whatever I may be doing he continues to head-butt me or the object until I empty my lap and focus only on him. Ninja Time can take anywhere from 1 minute to 10, but during that time I MUST pet and scratch him and do nothing else. He jumps away when he’s done.

So during that time I decided it was also a good time for me to do this be in the moment stuff. I think of how freaking soft his fur is, how loud can I get his purr to go, and wonder what he’s thinking? If thoughts about not finishing what I’d been doing prior sneak into consciousness, I recognize that thought, then try to get back to how calming it is to simply pet my cat. Sometimes he will let me give him an actual cat massage, but he’s not as big on that as my cat, Blizzard, is.

Resting on stillness, simply noticing my breathing is easy when I’m petting the cats. What about at other times, though. Meditating doesn’t come easy when I’m in pain. I like to do walking meditation when walking doesn’t hurt. Enjoy the singing birds. Try to discern the different bird sounds. Hear how the wind makes different sounds depending on where I am on the walk. Breathe in sync with every other step. I wish I could do this stuff without sensory input. I need to visualize, listen, touch, etc, or that monkey mind takes over.

I’ve been told “Mindfulness involves being with your thoughts as they are, neither grasping at them nor pushing them away.” Awaken to experience. Sure, except when I have insomnia. Having a nonjudgmental presence in my awareness just doesn’t work then. My mind is screaming “why can’t I sleep?!” Same thing when I want to snack, but know I don’t need to eat. “Mindful people can hear negative thoughts and feedback without feeling threatened.” I hope to get to that place.

It’s in our culture to shame over eaters, people who are tired at work, nag about things not getting done, and multi-task. It’s near impossible to focus on what’s going on in the room around you when you’re thinking of what you think everyone else’s expectations are for you.

Personally, I think I also have a hand-up to not “hear” all that droning and mumbling in my head. I can shut off my hearing aides! It’s a great pro about being mostly deaf. You really CAN hear yourself think better. I LOVE taking off the aides when I do art or read. The distractions of the room around me just don’t exist, because I can’t hear them. It’s easier for me to get lost in what I’m doing. Suddenly it’s been hours and, wow, look how much I got done!

Maaaaybe that’s not quite what being in the moment means, but I like it. It’s a sudden awareness of how cold or hot the room is, how thirsty I feel because I let my coffee go cold, how sore my hand suddenly feels from doing the art for so long. Instead of thinking ahead of time that my body will get sore, I’ll forget to stay hydrated, and oh ya – the sun goes down when you’re not thinking. Just doing.

Not to say I don’t fear the pain that I know will come, but maybe I don’t notice it as much? I’m not focusing on belittling myself for fearing the coming pain. I’m not avoiding things I “should be” doing. I’m actually enjoying the process. I didn’t think about the drama feelings of what others will think of my art. I’m not stuck on how long it’s taking to get done and will others feel it was worth the time. It really works for me to not hear all those evaluations and/or rejections when I turn off my hearing aides.

I have to admit, too, that I really savor my eating. I think THAT is another area where I am in the moment. I love food. I’m about forty pounds overweight. I KNOW I should eat more healthy. However, I love the taste of good food! I enjoy swishing something really nummy around my tongue and use all the tongue’s different tasting spots to really think about what I’m eating tastes like.

I also savor music. Ironic I know, since I can’t hear all the nuances that someone else might hear due to me hearing loss. I absolutely love good live music. I can close my eyes and see it. Feel it. I can’t go a day without listening to music. It’s often on in the background while I’m doing other things, but when a great song comes on I have to just stop what I’m doing, turn it up, and REALLY listen and enjoy.

I guess it’s all about how you interpret and react to what’s in your mind. It’s self-control.

Oops, had to do a 5 minute Ninja Time there. I’m back. Damn his little face is so beautiful.

I’ve noticed that the more I try doing this Mindfulness the less often I get upset about things that used to get to me. Hmmm, maybe I AM doing it right? I guess I am feeling less bad about having emotions. I’ve been told throughout my life that I was “too sensitive.” Now, I’m getting to be OK with the knowledge that feelings are normal and natural. It’s OK to feel, just not get into all that “wishing” about not feeling an emotion.

No, I’m not resigned to feelings. For example, my pain, I used to get angry at the pain. Angry at my body. I wish…blah blah blah. I can now think it’s OK to be angry, but know that the anger isn’t going to help.

Right now I started to think about what if what I’m writing is rambling nonsense and no one cares?

Guess it’s time to take some Ninja Time.