How to be Sick and/or Disabled

Josh Appel, Unsplash

It’s daunting if you are new to poor health. We healthy ones vastly take advantage of our health. We never give it a thought that we wake up, ease ourselves out of bed and can use any fingers and hands to brush our hair and teeth. What a wonderful gift that arms are!

Being sick usually comes on abruptly and without warning. Typically, we react with denial. We can’t be sick, “I’m not sick, that is just allergies.” Or, just as often “that stomach-ache will go away (and when it doesn’t) I must have eaten something bad.”

Denial is a big part of getting sick. There are so many over the counter cold remedies because people don’t want to have what they have, which is: illness. We take the cough medicine, the nasal decongestant, literally anything to keep us going. There is something un-American about being sick. For some reason, we do not want to be seen as weak or vulnerable in any way, and that includes illness. So, we deny and get angry.

“It’s not fair that I am sick, look at Tom, he is never sick!” or “this is bullshit, I shouldn’t be sick, I take good care of myself.” Or “I am never sick; how did this happen?” In all of these various ways, we keep reminding ourselves and others that the situation is temporary and will shortly be over, because we are good people that take care of ourselves.

If the illness is over quickly, then all is well, and we can move on with our theories of illness and weakness and vulnerability intact. We change nothing about how we think, as we recovered quickly and easily.

What if the illness lingers on? The illness does not leave us and thus our lives must necessarily change to accommodate the illness. We believed that we were healthy because

a) I am a good person

b) I take good care of myself.

While these two statements might be true, it doesn’t necessarily follow that we can have good health. Poor health has etiology in so many places. There are so many ways and reasons that we can become sick. It is never through our own fault, or because we are a bad person.

“Am I ever going to be well?” She sighs sadly as she gazes out the window at the green trees and blue sky.

“No, you’re not!” says the angry child in her head.

And so chronic illness goes. There is so much chronic illness in the world today. Medical consultations abound on the internet. “Drink probiotics to cure everything!” “Use the Keto diet to get rid of pounds!” “Leaky gut is your enemy!” The trustworthy and the shysters share space on the internet trying to convince anyone and everyone that the answer is just a click and a $50.00 dollar bill away from you.

The truth is that chronic illness is here to stay. You won’t find the cure on the internet; you won’t find a cure from your doctor’s office. There is no cure. So, what changes and what do you do?

The answer is different for different conditions. For me, it’s fibromyalgia. My pain requires a lot of doctor visits = money and time. I am fatigued and there is a definite limit to my ability to do. Doingness just stops, hard stop.

Accommodations: First you don’t want accommodations because it casts you as a weak person, one who cannot accomplish. Ugh. Now you must admit to the understanding of your condition, which is never.going.away. Ever.

You resist accommodations because you don’t want to be “that person”, the needy one who has to have “extras” just to get the job done.

You are clearly in anger at this point, you have done your fair share of denial and now you have moved into anger. “Other people” don’t need accommodations, “other people” don’t need anything special to do their work. And so, your thinking goes. It’s not fair that you are suffering from your illness and you are angry that you need help.

It’s un-American to need help. We are all rugged individuals, tough and ready to take on anything.

If you have a chronic illness, if you are disabled, “other people” are likely to dislike you or ignore you, and this can be disappointing and discouraging. At least part of our denial and anger is because of this concept. It is hard to accept the loss of the “rugged individual” in illness and disability.

It’s important to recognize that it is just a concept and a bad one at that. There is nothing wrong with being disabled or with having a chronic illness. Yes, you do need accommodations; this fact does not mean that you are bad, or less of a person than before you became ill or disabled.

You are still the wonderful person that you have always been. Possibly you have new insights and perceptions that make you an even better person than before your illness.”

You may be bargaining “God, please take away my sickness and I will be a good Christian, Jew or Muslim.” “If you give my back my health, I’ll never complain again.” But, guess what? Illness knows no reason and attacks everyone and anyone indiscriminately, all the bargaining in the world will get you nothing. Bargaining is part of the process and leads us to depression.

Depression is the first sign of acceptance. You begin to realize that you are sick, and also realize that you are helpless against your illness. These realizations can make you very sad. Depression can take over, but it cannot be a place to stay.

The final stage of consideration for your loss is acceptance and with it, a kind of peacefulness. You make peace with your body and you let go of any blame attached to your thinking.

The five stages of grief that Kubler-Ross wrote about were never meant to be linear. One day you can feel acceptance and the very next day go back to being angry.

Make no mistake, losing your healthy body is cause for grief. After that, you are then free to choose. Am I incredibly sorry for myself and hateful to everyone? Or, do I love life in a very new way? Choose wisely, it is the rest of your life…

Audi Nissen, Unsplash

Incest

Vlad Kutepov with Unsplash

If I didn’t understand trauma informed care, I wouldn’t understand her story.  She told me that she couldn’t exercise because the harsh breathing evoked by her exercise brought her back to the harsh breathing she experienced when she struggled against her rapist.  When she heard the breathing coming from herself, she would have a mini blackout and it always scared her.  She could not exercise.  She took long walks because, she could always run away if she felt scared and she could always control her breathing when walking.  Her rapist was her brother, as a child, she was often raped.

She noticed that she was not comfortable naked, she wanted to be covered and wouldn’t go to bed without underwear.  She felt vulnerable and oftentimes when in the presence of others, she thought that she was in danger.

When she was breastfeeding, she had to stop as soon as the babies were old enough to pull on her shirt.  It made her think she was being raped, oh hell, she couldn’t believe how vulnerable she felt.

When she finally put it together and figured out why she didn’t like exercising she was fully adult and couldn’t put it in reverse, the damage was done.

She wondered if others suffered the same type of mental agony from their own childhood molestation and abuse.  She read research once that said women often gain weight after being raped.  As if the extra skin and fat will protect them from being raped again.  Or perhaps it was because an overweight woman did not fit in with the sexy ideal of a woman, thus making her feel safer.

Woman Being Comforted, Unsplash

From All Mothers, Everywhere

To my son the drug addict…

Jeremy Paige on Unsplash

What did I miss?  What difference would it make to this adulthood, this one, the one that you have right now?  Did I miss a crucial step that would have kept you from using drugs?  Did I miss some mysterious childhood mantra that would have given you more self love than this?

Why would you ruin this, our lives, with the makings of a mad man?  Drugs, drugs and more drugs.  You know, smarter than others, a brain that absorbs…why do you want this more than anything else?

I can’t stop the questions, because I can’t believe you!

This all feels familiar, not quite a de ja vu’, more like a fuck da you.  Who do you think you are?  There is not another chance for you to fill your world with lies, because we call you, liar!

Orkham Farmanli on Unsplash

So much hurt.  So much pain.  You left no stone unturned in your rampage through the lives of your loved ones.  I see the glass in your eye.  You will not see me again (as if you ever could).  If you saw me truly, this discussion would be void, it would not occur.  But, you must see me first.  This you have not done.  Will you leave my life without ever having known me?  Will you remain a stranger to the love of your mother?  Will you keep your journey lonely, without companionship?

We won’t let drugs into our lives again.  If that means you don’t get to be in our lives, so be it.

Becoming Codependent

Baynard 9/2017

Codependence is usually portrayed as an extremely negative characteristic.  Most writing includes a lot of judgment and blame for the codependent.  It is as if codependents chose codependence.  They do not choose codependence any more than the addict chooses addiction.

Codependents come by their malady honestly.  It is a survival mechanism that doesn’t turn off when it is appropriate to do so.  Codependence is the lion protecting her young, the bear protecting his home. The beginning of codependence is somewhat subtle, while the end may scream dysfunction.  

Codependence often begins with the parent of a child who is either struggling or disabled in some way.  Think of the learning – disabled child in third grade who is being bullied because of her special needs.  Think of the child who is autistic and lacks an ability to make friends at school.  Think of a child with dyslexia who is being teased by peers because of his perceived inadequacy.  Think of a young teacher who does not know how to handle behavior problems and seems to send your child to the principal’s office every single day.  Think of the woman who is in an abusive relationship and often must protect her children from abuse from her partner.  Think of a blind child, who not only struggles because of sight, but is also unhappy and angry.

If the child or partner has suffered in life and the suffering has been repeated (think violence, or sexual abuse, or even PTSD from battle conditions) the codependent person develops a type of hypervigilance which is a defensive stance. 

These are all situations which breed a codependent personality style.  The parent becomes an uber protector who is hyper-vigilant about any perceived threat to the child’s happiness or health.  The hyper-vigilance often creates misinterpretation, as Jeb Kinnison states, regarding anxious attachment style: Hair-trigger misjudgments and mistakes are more likely with this group and can get them into trouble.  This is a facet of the codependent personality style; they often assume the worst about the world.  Again, they come by the fear honestly.  Bad things have happened to their family; they know that the world can be awful.  Protection is the number one goal of the codependent personality.  The codependent is usually protecting their child, their home, or their perception of being loved.

As life progresses, more and more time is swallowed by the child’s high level needs, or more and more time is swallowed by the partner’s high level needs.  The child or partner becomes the ‘focus in life’ for the codependent person. 

When I read articles about codependence, often the word control becomes synonymous with evil.  This is a mistake.  Our codependent person is trying to protect loved ones, albeit in an ultimately unhealthy manner.  Initially, the control is a good thing: necessary to protect one who is not skilled in self-protection.  It is only as time progresses that we see codependence deteriorate into an unhealthy habit.

Many years ago, I worked with parents of blind children.  They told me that during middle school, they (the parents) were instructed by teachers to stop accommodating the blind child.  The teachers urged parents to allow the child to navigate their home on their own.  “Let them get their own glass of milk” they said.  This is guidance away from codependence.  Not everyone gets an educated guide that will help them through the pitfalls of caring for others.

Admittedly codependence can run on too long.  By caring for others, an unwitting codependent may be communicating that the object person is unable to care for self.  For children, this can be damaging.  There are plenty of downsides to codependence, including the inability to maintain relationship boundaries.  On this issue, both parties will suffer.  No relationship boundaries result in the deprivation of personal space.  This can be harmful to healing.

As we learned in the treatment of addiction.  We do not heal when we blame, denigrate or otherwise put down people who are suffering.  It is no help to characterize codependence as evil.

Remember that codependence comes naturally, even though it is a malady and also because it is a malady, it should not be damned.

Child of Mine, I Have Words for You

Words, words, words.

I have so many words for you, child of mine

I have words for your child too

I want to let you know what I know of the world

I want to give you comfort when you are reaching for the cure

I want you to know what my version of the truth is

I have words for you and I yearn to speak with you

______________________________________________________________________________

You murder me with your disinterest

You stab my heart with the shuttering of your eyes

There was a time when you vehemently wished for the sound of my voice

That time has passed and where did you go?

You are present, but judgmental, you have no use for history

Even when it is your own

______________________________________________________________________________

I’ve learned so much \ and wish to give it on

Wisdom hard won, needs no more from me

Can you use the wisdom, the knowledge, the experience

Have you dismissed the use of any that came before you?

I care nothing for information that any schoolchild can gain

I want to tell you life’s great mysteries and the price of love

______________________________________________________________________________

You murder me with your disinterest

You stab my heart with the shuttering of your eyes

You have traveled close by for the entirety of your life

Your body stays your mind doesn’t engage

           At least not with me

Child of mine, I have words for you

Pillars of Creation

Repeating, Wondering, Turning, Getting & Desiring

I am constantly repeating myself to doctors. I’m explaining my medication and my health goals. Doctors don’t listen very well.

I am wondering why doctors can’t understand a wholistic view of my health. Why must I go to so many doctors to get an understanding of what is happening with my body? Pain management, Rheumatologist, Endocrinologist, gastroenterologist, general practitioner, orthopaedic surgeon. Theoretically my GP should be managing all of the pieces of my health care and coordinating that care. I have never met a GP who was interested or prepared to do that.

I am turning to alternative medicine. These practitioners are kinder and more welcoming. They don’t have answers either, but at least they are interested. CBD oil anyone?

I am getting tired, indeed, I am exhausted by the pursuit of wellness. Sometimes the news is good, sometimes it is bad. Mental health is a problem. I have been diagnosed with dysthymia recently. Ugh.

I am desiring that my disability claim is approved. I have worked very hard all of my life. For over a decade I had two jobs. I went to school at night to increase my earnings. I have been working since 1972. Why would they deny my disability benefits? What work can I do with exhaustion and brain fog taking over my life. We manage my pain in a painful way: surgeries, cortisone shots, trigger point injections and Neurontin. I cannot function in a professional environment. Why is my claim for disability being denied. I desire fairness in this world.

Love not Hate

To the Haters in this World

Look, I get it.  There is nothing fair or correct about the world we live in today.  Every deck is stacked against us, from taxes to home prices, to minimum wage and to how our mother-in-law treats us.  It’s all wrong.

The worst part is looking at our own body.  We are not beautiful enough, we are not handsome enough and if we just had enough money to get the best plastic surgery, we would be fine.  Why is that woman so beautiful and I can barely stand looking in the mirror?  Why is that guy so cool and I can’t flex my muscles like that ever?

Why do I get rejected?  Passed over for promotion? Make less money than (fill in the blank)?

IMG_0440

Please stop blaming successful / good-looking / beautiful people for the unfairness of the world and for the unfairness of your beauty, or lack of…  Understand that the world produced what it did and your hate won’t change it, improve it, make it better.  Your place in life may be where you landed, but it doesn’t have to be where you end your life.

Give into the idea that love and inclusiveness is the only way to make this world better.  Hurling hate on the internet and at traffic lights will not give you a better outcome.  It will harm you, it will make you a worst person.  It is up to you to bring a message of love and admiration.  Aren’t you happy when someone is wildly successful?  Or does it just bring thoughts of your own lack?  If so, if you can only realize your own lack, then you must fix your way of thinking.

Begin thinking in a way that makes you the winner.  There are thousands of books and websites that can show you how to do this.

In the meantime, quit hating.  Successful people should not be blamed for their success.  You can’t blame a man for being handsome, or a woman for being beautiful.  Get the hate thoughts out of your head.  If you can’t switch it up to love, then switch it up to neutral, indifference.  You don’t care.  Let it go.

In the meantime, start loving.  Start with yourself first, be yourself’s best friend and admirer.  Tell yourself dazzling stories about you!  Find your fault line and push it, so that you can authenticate the you that you are.  Of all the universe’s that you exist in, the you that you are is the best you.

If you give some love away, you will be surprised how fast it will come back to you.  Hate does the same thing.  Don’t you want love coming back at you rather than hate?

Quit blaming the more fortunate for the unfortunate hand that you were dealt.  Yes, you have reason to be disappointed, angry and hurt.  This didn’t happen because of others’ success, it happened for whatever reason that it happened.  It’s a moment in time and it will pass.

In the meantime, you have what you have, find the philosophical shrug and deal with it.  And, for “cryin’ out loud” give love and watch it multiply back at you.

 

Duck Lips

Parenting 200

We Begin in Earnest

We begin parenting in earnest…

As I get older and embrace being a grandparent, I see myself moving farther and farther away from parenting.  What I have found is that the person I am, to be a mother, changes with the age of my child.  Additionally, it is not the same person that I am, to be a grandmother.

When I am mothering, I am enmeshed with my child.  I am in their faces, I want to know what they are eating, whether sleeping, and are they having bowel movements?  I am in their business completely because for this time, I am responsible for all consequences of my actions and my child’s actions.  No matter how things fall out, I am the one that pays the bill.

As time moves through childhood, boundaries begin forming and I can gradually back away from the heightened alertness of caring for the infant.  As the child ages, I will allow the child to make small decisions and also to face consequences for those decisions.

We know that kids will sneak candy and overeat.  They may suffer from a stomach ache as a result of the decision.  During this phase it’s important that I draw a line between the decision and the consequence of those decisions so that my child can recognize that a relationship exists.

The teenage years demand heightened sensitivity and heightened awareness of my child.  The enmeshment continues as we discuss, on a daily basis, activities and futures to consider.  While the physical requirements of child rearing diminish (I am no longer feeding and bathing my child), the emotional requirements ramp up.  The intensity engulfs parents and children.  Safety becomes an overwhelming concern as we contemplate safe places, safe people and safe situations to allow our children to engage with.

As my child ages, I am going to back off more.  There comes a time when my child will tell me if I am making parenting mistakes.  While there is feedback that is ridiculous and you would never listen to it, most of the time, we should be listening if our child is willing to let us know that we have made a parenting mistake.  If you are interested in a healthy relationship with your child, you will listen very carefully to feedback.  The point is, you are communicating and as long as that is true, you can stay close to your child.

We C Each Other

Nineteen years ago (it has now been 30 years), Jill and I had our very worst argument and it was because I refused to accept her adult decisions.  I wanted her to go to college and “become” something, she rejected a scholarship to Penn State and instead, decided to get married to her high school sweetheart.  The argument was bitter and it cost me dearly – as I did not attend the wedding, I was not invited.  Almost two years passed before her father died and during that time I had no contact with Jill and my heart hurt the entire time.  It was a lesson in how to love your adult kids, nothing is worth losing them.

Acceptance is one of the most powerful gifts you can give to your adult kids.  Youth (15 to 29) is a time of fear and anxiety and our current culture is much less forgiving than any culture that preceded it.  Our adult kids need to know that there is at least one safe place to land, and that place is home.  If it’s not you, your kids will find a place to land and that place may not be safe.  Acceptance is a key principal for success with your adult child.  But, only if, you are interested in continuing a relationship with your adult child.

All humans have an inalienable right to self determination.  America has worked hard to preserve this right.  Adult kids have these rights and even more-so as they struggle with the clumsiness of their own independence.

I recently read an article in the AARP Magazine [April/May 2019 aarp.org/magazine], it was funny, yet serious.  The title is “How to Get Your Kids to Hate You”.  The author did a great job of illustrating these issues with the following checklist:

  1. Track their (adult kids) movements
  2. Make gifts to your kids conditional
  3. Offer outdated and outmoded ‘help’
  4. Provide ‘constructive’ criticism (I don’t even know what this is)

It is hard to change from enmeshed parent to fascinated friend, yet you do not have the right to tell your son who to date.  You don’t have the right to tell your children what vocation they will practice.

We Adult Kids

Approving or not, your children have the ability to do exactly as they please and if your disapproval is too painful for them, they may just shut you out.

Chronic illness: Things I learned and things I know

via Chronic illness: Things I learned and things I know

I haven’t been any good at acceptance.  I haven’t even been able to say that I can see my limitations.  My self-identification has gone from “I’m strong.” to “I’m weak.”  What’s wrong with me?  Why can’t I realize that my life has changed and I don’t have a vote in how it has changed?

I can still be strong.  I just need to find new ways.  As for acceptance, I don’t know how I will get there.  I’m still screaming and kicking and it’s been two years since diagnosis, the illness has been present much longer.

I do know this, in America, it sucks to be sick.  Not only am I not healthy, but I am broke and overwhelmed with how financially disabling my illness is.  I can’t wear make-up on most days and I certainly can’t function enough to work full time.   No one wants to hear about my illness (not even my doctors).  It’s always frustrating to be sick.  America loves beauty and health and abhors the drag of chronic illness.

Every holiday extracts a huge price.  I need a few days just to recover from all of the family festivities.  It’s worth it, holidays are one of the things I can look forward to and enjoy completely.

Still figuring it out …

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