A Holiday Gift For You…Things My Mother Taught Me

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My mother has been gone for over twelve year. I have a lot of special memories of her and I am often flooded by them around the holidays. She loved holidays because it brought family together and she was the glue that held us close. She taught me a lot about life, that it’s good and that it’s difficult. In my mother’s case, a lot of what I learned from her was through example. She carried herself with a quiet dignity, a humility and beauty that evades most people. I think I miss that about her most of all. I have known no greater person than my mother. Her advice and example have served me well through my life and while I know I will never match her grace, it’s something to keep striving for. As my gift to you this holiday season, I will share some of the best advice she ever gave me:

The day doesn’t start until your bed is made 

You can be happy or you can right but most of the time you can’t be both 

Eat a salad 

Aliens exist 

Find something to laugh about every day 

Strength is not boastful

Learn new things all the time 

Vote…in every election no matter how big or small

Looking good is important because it makes you feel good about yourself

Never kick a dead cat (Translation: Don’t go back to something once it’s over) 

Stay current with news…and with the latest styles

Revenge is a dish best tasted cold 

Follow the rules

If you don’t take care of your own health…No one else will do it for you

Be independent and self sufficient (Translation: Don’t ever “need” a man) 

If you marry…don’t just love him…like him too

Don’t dwell, learn from your mistakes and, move on

Arrogance is ugly

Don’t use fear as an excuse to stay stuck

Daily gratitude is the key to a peaceful life

Find ways to express your creativity 

Opinions are cheap…everyone’s got one

If you can read…you can cook

Take a look around and don’t take what you have for granted

You can re-invent your life if you don’t like where it is headed

Try to always be truthful and if you can’t be truthful…don’t talk

Pop music is awful

Explanations are one thing and excuses are quite another

Have hobbies…lots and lots of hobbies

Don’t talk outside of the family (Translation: Don’t gossip about your family with outsiders) 

You don’t have to express every thought in your head

It’s called work for a reason…It’s not supposed to be fun

Just keep putting one foot in front of the other

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Cutting To The Core

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There are times having sarcoidosis doesn’t phase me much. I am able to function with relative ease on every level but, there also times, more than not actually, when having sarcoidosis is difficult on every level. My body doesn’t work the way I want it to. I gasp for air. My nerves burn. I crack and ache and find myself feverish for no apparent reason. My body is slow and sluggish. My brain is cob webbed and dusty. I sometimes feel like every step I take is like trying to walk through thigh high mud. I take a lot of medication and I can’t eat what I want. I don’t work anymore because my body can’t handle the stress and my brain can’t handle the demand to think.

All of that is bad enough, right? Unpleasant to be sure but, the thing that sometimes makes having sarcoidosis the absolute worst is something far harder to talk about than a broken body and a mixed up mind. It’s humbling to admit but the hardest part about having sarcoidosis has nothing to do with the physical or mental challenges. It’s dealing with the emotional ones and, for me more specifically, it is learning to deal with the loneliness that comes with having a chronic condition. There is something about being perpetually unwell in unpredictable ways that is beyond explanation. It’s a private kind of hell that no one else understands. As hard as I try to fight for my life and I do fight for it, there is a part of me that knows I am not nor will I ever be truly me again. I lack confidence in ways I never thought possible because I just don’t know when my body will cooperate and when it won’t. Before my disease, I was not a person who lacked confidence.

The bottomline for me is that now that I have this stupid disease, I am alone a lot, partly because I no longer work but, also because there is a strange comfort it in now. If I’m not around other people, then I don’t have to explain what’s wrong with me when I can’t find the right words and forget my train of thought. I don’t have be embarrassed when my lungs decide not to work correctly and I begin to gag and wheeze and gasp for air. I’m always offered a well meaning but unhelpful glass of water by helpless on lookers when this happens. If I am just alone then I don’t have to think of a good excuse to leave the gathering early much to the dismay of the host. There is an ease in just being on my own and generally, I do like my own company.

There is also a price to pay for being alone a lot and that price cuts to the core of me. It is the danger of crossing over from alone time into the loneliness. There is a feeling of complete inadequacy in feeling lonely for me. There is a feeling of utter failure and there is a deep and quietly all consuming feeling of fear in feeling lonely for me. These are the challenges I find the hardest to face for having sarcoidosis. I try to balance my need to be alone against getting lonely but I admit, I am not always successful. In fact, I fail more than I succeed when it comes to this internal battle. Loneliness has a way of creeping up on me and then blind siding me with profound sadness that sometimes I can’t even explain. This is when I realize that I have once again crossed the line from much needed, often healing time on my own, into the pitiful place of self inflicted isolation.

I feel a sense of shame for feeling lonely sometimes. I feel deeply deficient in some way for being lonely. Successful people should not feel this way and I have generally believed myself to be a successful and fortunate person. I am usually able to overcome life’s obstacles. I am not entirely able to tackle this one though because time and time again, it sneaks up and, deep unhappy solitude takes hold of me. I’ve been in that uncomfortable place of darkness for awhile now again. This time I am shedding light on it. I am writing about it, putting it out there and laying myself bare. I am handling this bout of oppressive isolation differently. I am not going to feel shame about it. I am going to accept it for what it is. It’s just another symptom of life with a chronic health condition. Nothing more. I am going to publicly acknowledge my loneliness this time and as with all other symptoms and hardships of this disease, I am going to do what I always do. I am going to fight. I am going to overcome it. I am going to find balance again. It’s time to move away from this dark place and back into the light.

The Fog Of…Umm…Uhhh…What Was I Saying…

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In the grand scheme of sarcoidosis symptoms, there is one that on occasion, can be quite humorous. That symptom is brain fog and it really doesn’t matter where sarcoidosis effects you, your eyes, your skin, your brain, your heart, your lungs, your nose, etc…brain fog is familiar to all of us with this disease.

Sarcoidosis brain fog isn’t just the occasional misplacement of your keys or forgetting the name of an old friend you haven’t seen since elementary school. Sarcoidosis brain fog is spectacular. It’s everything from standing in a dazed stupor in the room you walked into over an hour ago and having no idea how you go there or why you went in there in the first place, to taking your dog’s medication instead of your own and not realizing it until hours later (and I managed to do this one more than once…thank you ver much), to opening a can while cooking only to throw out the contents and put the empty can in the food you are making. Yup, these are all things I have done since getting sarcoidosis and so much more…sigh! Forgetting what I am trying to say mid sentence happens several times a day. Complete thoughts vanish from my brain, as do the words I need to use to convey them.

My most fabulous star studded moment of outstanding brain fog happened one day when I hit a car in a parking lot, had no idea what I had done and drove away. Thats right…you read that correctly…I hit and ran! The problem being…I had no idea that I was “running.” It wasn’t until a few hours later when the police called to inquire if I had been in that particular parking lot earlier that day that I learned what I had done. Imagine my surprise when the officer informed me that I left the scene of an accident and that I caused it!

It turns out that it wasn’t anything serious. No real damage was done. I apparently tapped a car in the parking lot when I was parking my car. Someone witnessed it and instead of approaching me when I obliviously walked in the store, purchased my goods and left, they called the police. When I was willing to take full responsibility and apologized profusely, the police officer didn’t even ticket me. I felt like such a total moron and I beat myself for days for my foolishness. I can laugh about it now…even tell all of you about it without utter embarrassment but it took me awhile to find this particular incident humorous.

The kind of lost, empty headed, misty minded feeling those of us with sarcoidosis experience as a result of brain fog, is maddening. It’s incredibly irritating and often embarrassing. It’s a burden to be muddled and murky in the head all the time and I’m not sure what causes this with sarcoidosis. Is it the constant low level of relentless pain we are in or the fact that some of us don’t get enough air, while others actually have brain lesions….probably all of the above…but the treatment for our disease does not help either….high doses of steroids, long term use of low levels of chemo drugs have to be contributing factors for this ridiculous reality we live in.

It’s important to use more care and be more cautious in everything you do when you have sarcoidosis brain fog and the incident with my car, while funny now, was a good lesson for me that I must be particularly vigilant when getting behind the wheel. Everything takes me just a little longer now because I have to think things through with more diligence. The only real way I know how to survive this singularly annoying symptom is to laugh. Humor is sometimes the only thing that gets me through the day. The dumb stuff I do is generally harmless and I have to try to remember this (yes, it’s funny that I said “try to remember”…hahah) so I don’t get too down on myself. Brain fog is a real symptom of this disease. It doesn’t mean I have suddenly become an idiot. I might do stupid stuff sometimes but I am not stupid…I have sarcoidosis.

Love And Problem Of Pride

 

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When I think about pride, I often remember something my mother once asked me…“Would you rather be right or would you rather be happy?” She went on to explain that often, you cannot be both.

The need to be right has an under handed appeal. The need to be right gives us a false sense of our own importance but it often makes us lose sight of the needs of others. We become selfish when we are too prideful. All things become about us and our world begins to shrink because others grow tired of our ego centric point of view. Our inability to bend alienates us from the people we care about most.

Pride makes us deaf and blind but rarely mute as we spout our truth as if it is gospel. Reality dictates that our truth is only a point of view. It is not written in stone and it is not necessarily even accurate but pride keeps us from being willing to see another’s point of view. This is often when others grow weary of us.

Over the years, I have learned that sharing my opinion is one thing but digging in is another. When I dig in, I cannot hear the needs and concerns of the people I love and this creates distance and distance makes me unhappy. Pride becomes lonely.

Not only do I not need to be right all the time, I am often just plain wrong when I have been the most righteous in my single minded pontification. This is usually when I fall the hardest and I have been known to fall pretty hard from time to time. I think we all do. It’s part of being human.

My disease has humbled me. It has made me realize in an entirely new way, that I know not the journey of another person and therefore I have no right to judge it. In an unexpected way this humility has been a gift. It has freed me to be forgiving. It has made me realize that being right is simply not as important as being happy and most of all it has made me better understand that my mother was right.

Sure it still feels good, in a self centered sort of way, to be right but now…it’s just not that important and I would rather be happy!

Self Occupation…A Disease Of Its Own

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Egotistic…

Self Seeking…

Boring…

Oblivious…

To be preoccupied by one’s own life can be a disease of its own.

We all suffer from it to varying degrees at certain times in our lives.

Some people have a more “chronic” version.

You’ve met one of these people when they never ask how you are.

When I get like this, I stop listening.

I start feeling uncomfortable in my own skin.

I become an absolute dullard.

Blah,blah,blah…enough about me now let’s talk about me and so on and so on…

I’ve been self occupied lately.

I can feel it. I don’t like myself for it.

Not everything is about me. In fact, most things aren’t.

What’s the treatment for self occupation?

It’s pretty simple really.

Be self aware…

Recognize the signs of forgetting that there is a bigger world all around you…

Be honest that you’ve found yourself in this uncomfortable place and…

Start practicing humility.

So, enough about me…let’s talk about YOU!

How are you today?

Humility

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To act in selfless ways wanting nothing in return…

Allowing yourself to be small so others can be big…

Admitting fault and knowing the importance of saying you’re sorry…

A soulful intelligence…

Learning from mistakes…

To be meek by choice…

The act of putting others before yourself…

Knowing your limits without shame…

Accepting failure as part of life without excuse…

A place of true strength…

The ultimate act of self respect and the best way to respect others…

What Mrs. Jones Taught Me

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Frail and weak, her white hair and small bones lost in the blankets of a hospital bed in her daughter’s living room, Mrs. Jones, lay there with a smile on her face. She is alert. She knows her own mind. She is aware of what is happening.

I am a college student. I’m also a home health aide, earning some extra money to help pay my way through school. It’s my job to come into this environment three days a week, for four hours, to give Mrs. Jone’s daughter a break. Whenever I come, she goes out for coffee with friends in a feeble attempt to maintain some sort of normalcy. I’m glad my presence gives her enough comfort to go and seek it. Watching your mother die is no easy task.

I help Mrs. Jones out of bed, bring her to the dining table in her wheelchair and make her breakfast. She picks up the fork and puts it down again. Mrs. Jones rarely bothers to nourish herself anymore. She asks to sit on the back deck. I wheel her out the door. Mrs. Jones holds her face to the sun and breaths deeply enjoying the warmth of a summer morning’s heat. She smiles again, knowing there probably won’t be too many more of these.

Soon, Mrs. Jones is tired. We go back inside and after I give her a bath and change her sheets, she is ready for a mid morning nap. I help her back into her hospital bed in the middle of the living room, there on display for all to see. She closes her eyes and begins to dream. I tidy the kitchen and put some laundry in the wash.

On this day, Mrs. Jones calls out for me. She tells me to sit on the edge of the bed. I do as she asks. She takes my hand and thanks me for helping her daughter take care of her. I’ve been coming here for 3 months now. I’ve grown very fond of the entire Jones family.

She tells me that I work too hard. I tell her not to worry about me. She says she wants to do something for me. I tell her she doesn’t need to. She begs to differ. She tells me to turn around. I do. She takes her 90 year old knotted and wrinkled hands and begins to rub my back. She wants to be of value. It is important to her. It is important to her to be connected to another human being. I let her rub my back. Soon she falls asleep. I quietly move to the chair by the bed and as I do, I look at Mrs. Jones. She is asleep but she is smiling again.

An hour later Mrs. Jones is gone. Smiling now from heaven. Her daughter has come home. The hospice nurse is here. Mrs. Jone’s died peacefully.

I’ve never forgotten that day over twenty five years ago and it’s not because someone died while I was taking care of them. It is because of the things Mrs. Jone’s taught me that day.

Mrs. Jones was dying. Mrs. Jones needed a lot of help. She couldn’t do much of anything on her own anymore. She was old and she was frail. But even in her weakened condition, Mrs. Jones wanted to be of value and use. She wanted to give back to those who helped her and loved her.

That day Mrs. Jones taught me that no matter our circumstances, we have something to offer. Even more importantly, she taught me something about kindness I have come to cherish. She taught me the importance of sometimes accepting the gifts of those we believe to be poorer or weaker than ourselves. She taught me how to be humble. She taught me the meaning of grace.