Category Archives: Disability

Quack!!!

So here we are…it is Holy Week again, and this year I am not quite ready.

The last two months have been really hard on me. I lost a very close friend to cancer after spending months doing everything I could to take care of her and her family. And then on 1/29/18, my father fell and broke all the bones in his face, advancing his dementia in ways I never imagined. He will not be allowed to live at home with my mother in his home ever again, and he will never be the man he was on January 28th, 2018.

I am grieving in more ways than you can imagine.

But this season, while grief-filled and painful, has been truly good for me.

I needed to remember that God resurrects everything to a new and different life, to a life that couldn’t be imagined before death, to a life that only Heaven owns.

My grief is so overwhelming that I cannot seem to see beyond the grief and the pain. I look at my friend’s family and at my own family and wonder how we will ever go on. I don’t quite understand how we are supposed to smile again, to laugh again, to feel like life is good again.

And then, out of the blue, someone reminds me of what it is that God lends us to deal with all our pain.

I went to see my massage therapist this morning because my last appointment, only a week ago, revealed that my body is telling the tale of all the stress I’ve endured since Christmas. She asked me to book another appointment with her as soon as possible, even though I normally book an appointment with her only once every three weeks. After her recommendation, I booked another appointment only 7 days after I’d last seen her, knowing that it would be 14 days after that before I could see her again.

She and I talked this morning about all of my stress and everything that was weighing on her heart, since she has children and children always weigh on our hearts.  Her sons are becoming teenagers, and I found myself sharing all I learned when my daughters became teenagers and so much went wrong. I shared about the group of people that saved my daughter, my relationship with my husband, and my entire family.

My massage therapist fixes my body and improves my life, and I do what I can to give her tools to heal her own body and fix her life. Our gifts differ just enough that we are able to help each other at the same time.

During my massage, as I related all the things that have happened with my mother and father since I last saw my massage therapist I realized something really crucial.

I have lost my sense of humor when it comes to my dad.

My family deals with almost everything with humor, even when we have to use black humor that other people would frown on, just so that we can get through difficult times.

My mother and I have watched my father lose his wits, his mind, his sense of self, and his self-control. He has threatened my mother and assaulted his caregivers (medical and otherwise) until we had to resort to extreme measures to help him. After 3 weeks in a psych ward and much medication, we thought we might have finally recovered my father…the man we all miss, the person we wish were with us instead of the violent, unruly, mentally unwell man who woke up after breaking all his facial bones.

Nope.

Not. Even. Close.

The situation has broken my heart and strained my relationship with my father. There is only so much hatred and threat that I can listen to before the child in me wants to run away. I cannot hear my father threaten my mother…not for long. I was so excited, anticipating the man that we would receive when he came home from the psych unit medicated and peaceful; for a hot minute it seemed that we had found the man we knew and loved and then…disaster!

It was during my massage, talking with the woman who restores my body, that I realized that I had abandoned the coping mechanism that restores my mind.

Humor.  I have lost my humor when it comes to my father’s behavior.

I could argue that there isn’t anything funny about physically assaulting my family or the nursing staff. I could swear that there is nothing to laugh at when you are facing horrific levels of liability for the damage done to some tiny woman who chose to provide care to those who are aged and losing their memory.  And there is nothing funny about a man who thinks his family has abandoned him, that we have left him to die when he needs us most, despite the fact that we are making the best possible choices for his care that we can, even when the care we choose comes at considerable cost and sacrifice for the family.

The situation isn’t funny at all.

And yet…

Why aren’t I allowed to laugh? Why aren’t I allowed to be silly, unreasonable, unaccepting of the tragedy that I cannot escape?  My mother laughs at the tragedy of her chronic illness. I laugh at the tragedy that I inherited from that illness and the fact that I get sicker every day. I laugh with my daughters when they report that they also inherited these illnesses, since we have only once choice: laugh, or cry. We laugh about what we cannot change, or instead we choose to weep daily, soaking in our tragedy.

I. Choose. Laughter.

No matter how much it all hurts, I choose laughter. No matter how much the whole situation sucks, I choose laughter. Laughter has gotten me through so much loss in the past that I know it will not fail me now.

God invented laughter, and I truly believe that just before he committed his spirit to God, that Christ looked down on all the Centurions gathered at his feet and laughed.  Those foolish children believed that they could kill the one and only son of God; they believed that they would win and that Jesus had no chance of succeeding. What a disappointment…and what a blessing!

When I look at the history of my Savior, I choose laughter.

When I visit my father and he is fixated on his anger at my mother, I have decided to start quacking like a duck to distract him.  When I quack like a duck I am going to remind him that I cannot change my mother’s choices and that I really want to know about him, about his new life, about his new friends and his new domicile. I want to tell him about my own life, about my own children (that he doesn’t recognize anymore) and my ministry.

I may have to quack like a duck every 10 seconds to keep him focused on something other than the life he has lost; the life that makes him angry and violent. I’m good with that. I’ll quack as often as I need to in order to unsettle him, to distract my dad from his fixation on my mom and his beliefs about her unfaithfulness and bad behavior. In the end, all I want is a father that I can relate to, separate from his beliefs about my mother. I cannot hear his hatred, anger, and judgment about my mom anymore. It is toxic to my soul, since his thoughts are all based in fear and delusion.

I am going to quack like a duck because it makes me laugh, and it just might work.

Please pray for ducks to assist me, and for God to make mercy for my father out of ducks and humor.

By the way, I found an awesome shirt that refers to raccoons as “Trash Pandas”, bears as “Death Floofs” and bunnies as “Boople Snoots”. I need that kind of humor, and so I am choosing to quack like a duck and smile when I think of “Boople Snoots”. I’ll let you know how it works.

Thank you for your prayers for my family. I know that you are praying because there is no such thing as Christians who read about pain and don’t pray. I appreciate you more than you know, even when I don’t know your name.  Blessings!

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The Full Catastrophe

It’s family disaster week.

Actually, there is nothing “family disaster” in what I’m about to say; in fact, what I’m about to say probably reflects the same family life most people have in their fifties. Some days are good, some days are bad, some days are both good and bad, and some days feel like Murphy moved into your house, took over your bank account, and decided that he personally has a vendetta against you.

I hate that Murphy guy.

This will serve as your one and only trigger warning: if you are already overloaded with family drama, I’ll see you next week. Otherwise feel free to read on.

So…the mom brag moment!

My oldest daughter called me and told me that wonderful things are happening at her job. Since she hasn’t told the world yet I won’t give you details, but let’s just say that the money is getting significantly better, she’s about to become very happy with her job and her commute, and she hasn’t felt this valuable to a company in a really long time.

It was so surprising that she was a little stunned and overwhelmed, but I’m here to tell you that she totally and absolutely deserves all of it.  Yes I’m her mom but dang that girl is bright and capable!

To put the icing on that cupcake, she told me that her partner (who is a professional photographer who does mostly BMX races) has been marketing himself a great deal in San Francisco because she travels there twice a month for work…so why not fly there together, you know? Well, after showing his work around town he got hired for a 3 day commercial shoot for a major fashion designer!!  Seriously, when I heard this I squealed out loud and he’s not even my kid.  Again…they haven’t told everyone yet and so I am keeping some details under my hat, but OMG a major (MAJOR) fashion designer!

After our phone call was over I was so excited that I danced all around my house as I got ready for my Zumba class, where I danced rather exuberantly and with great joy.  I had to let the energy out somewhere!

It has been a good couple of weeks for my girls. My youngest passed her certification exam and now is a certified Pharmacy Tech (hello, big raise!) and my son-in-law got a great job at an airport with benefits and everything.  Considering that he is thinking of going into aircraft maintenance, this is a good job to have.

Some days are good. Some weeks are good.

And then…

I have written previous posts about the challenges of aging and how important it is admit and accept that you are going to require someone else to take care of you. I have written about the importance of working through the emotions of becoming more and more disabled before you come to that point, and understanding that aging doesn’t have to be about loss.

Yeah, my parents don’t read this blog.

My dad is 76 years old and has dementia; my mom is 70 years old and chronically ill.  Both of them are slowly losing their ability to be independent, although neither of them wants to admit it.

My dad is unwilling to admit that his dementia has reduced him to the point where he cannot live independently and needs a caregiver. My mom has been filling the caregiver role for eight years, with increasingly less and less physical ability to do so, and more and more emotional and mental stress related to my dad’s decline.

I feel like we are at the breaking point.

I talk to my dad and he unloads about his frustration and overwhelming confusion in combination with his anger with my mom.  You see, he still believes that he is capable of independence, and he keeps trying to live his life the way that he used to. He thinks that it’s my mom’s anxiety that causes her to stop him from doing maintenance around the house or driving. Sadly, my dad’s dementia has made it impossible for him to evaluate his own functioning, or lack of it. And he does keep trying to function, despite the fact that the results are consistently bad.  Over and over he’ll try to “be of use” and do the things he used to do around the house, but since he no longer remembers details or how things function he ends up breaking or destroying clothes, appliances, fixtures, you name it. He has lost or destroyed so many things that my mom is at her wits end, so she tries to stop him or she ends up criticizing him because he is doing it wrong and refusing to receive instructions on how to do it right. This causes him to become belligerent and angry and then he becomes aggressive and things just keep escalating until there is a huge confrontation.

That’s when I get frantic, emotional phone calls from my mom telling me just how bad it is, how agitated and aggressive my father is becoming, how exhausted and overwhelmed she is…and I gather resources and try to offer help to her…which she refuses most of the time.  Recently she revealed to me just how aggressive my father becomes when he gets agitated, and the last time I was at their home she had me take pictures of the bruises. It broke my heart to think that my father has become that guy and that my mother feels trapped in the situation.

Disaster.

Believe me, I have tried all sorts of things, and I have gathered all sorts of resources including an elder law attorney. Nothing is getting either of them to realize how explosive this situation is becoming.

I was up until almost 2am last night running it over and over in my mind, furious with both of them for the choices they have made and are making. I have a huge list of fears, with each one more terrifying than the other until the final one involves such a horrible occurrence that I would lose both my parents at once: one to death, and the other to the criminal justice system.

All morning I have been trying to interject more logic and less fear and anger into the discourse in my head, and I have realized that no matter how much I want to, I cannot make their choices for them. As much as I love and want to protect them, every attempt to help them make a decision that would admit that they need help because of their increasing debility seems to create a backlash of resistance and petulance out of my dad, which only serves to increase my mother’s anger with him.  I don’t want my desire to “fix things” to become the reason they end up in the next screaming, violent confrontation.

I fear that the best course of action is to sit back and let their choices drive what comes next and hope that none of my fears comes true. But I’m telling you, I’m going to get a hold of that elder law attorney and get papers that would allow me to file for conservatorship and get them filled out in advance. I’m also going to ask her for a referral to an attorney that deals with criminal charges against compromised adults. I can’t save them from themselves, but I can arm myself with information, prepared paperwork, and referrals.

And then I am going to sit back, close my eyes and meditate on raises, promotions, new jobs, photo shoots, and the incredible joy I feel when I think of what amazing women my daughters have become and what amazing men they have chosen as their partners.

In the movie Zorba the Greek, one of the characters gets asked if he is married and he says “I have a wife, children, house, everything…the full catastrophe.”

Life is a catastrophe, indeed. A wonderful, excruciatingly painful and beautiful catastrophe. I would complain, but then I think of Jesus’ life and all that He went through and I realize that even my Savior lived the full catastrophe, even if he never had a house and may not have had a wife and children.  It turns out that this is the nature of incarnate life, and I don’t know that I would honestly want it to be any other way.

 

Our Privilege Is Showing

I have a client who has been dealing with chronic pain and spinal issues ever since I started working with her over two years ago. Approximately 7 months ago, she went in for an injection to reduce inflammation and pain in her cervical spine (the medical description of what they did is beyond most of us, so I’m going to skip that.)

To make a long story short, things didn’t go well. Somehow, they injured a nerve during the injection, and my client noticed immediately that she was unable to use her left hand; by that evening my client was in the ICU receiving huge amounts of medications to elevate her blood pressure so that they could maintain blood flow in her spinal column.  She lived through the ordeal, but was left with excruciating pain in her left arm and very little function in her left hand.  The muscles in her hand are wasting, she can’t move her fingers very much and cannot use the hand for anything more than a paperweight. She can’t tie her own shoes, pull up and button her own pants, or pick up anything that requires two hands. She struggles with simple things like showering and getting dressed, and it’s almost impossible to do the things that would allow her to take care of her family.  Worst of all is the constant searing pain in her left arm that increases any time she puts any pressure on her left hand. Physical therapy is so agonizingly painful that she cannot eat before she goes to therapy or she vomits.

Sounds awful doesn’t it? Aren’t you glad it isn’t you? Me too.  Sadly instead of giving her a place to share her emotions and honestly talk about her agony and suffering, friends, family, and even her doctors all say the same thing to her:

“Aren’t you glad it isn’t your right arm?”

Well…yes, she is grateful that she is still able to sign a check, or write a note to another person. She is grateful that her dominant arm wasn’t impacted.

But how is that statement supposed to be comforting to her?  Imagine what it would be like if I lit your left arm on fire and it had to stay on fire for the remainder of today, just today…not 7 months of agony, like my client.  Would you welcome people saying “Aren’t you glad it isn’t your right arm?”

I’ll bet not. I’ll bet you’d want to scream “Make it stop! Make the pain stop!  I can’t take anymore!”

But no one is going to make it stop for my client. Barrows Neurological can’t make it stop. The malpractice suit isn’t going to make it stop. Pain medication barely touches it because it’s nerve pain. Nothing…nothing…NOTHING is going to make it stop.

Aren’t you glad it isn’t your right arm?

People say things like that for a number of reasons. First, they cannot feel just how much pain she’s in. Second, they don’t understand that this may be permanent and even progressive. Third, they don’t realize how much they use both hands when they need to get things done.

But the biggest reason that people say this is because they don’t want to have to acknowledge my client’s immense suffering. The idea that life can randomly, arbitrarily deal out such horrific suffering is more than most people can bear, and so they push the idea away with bland platitudes and stupid statements that demand the suffering person “see the bright side of things”. You know, because, happy and all that!

You see it in the wake of Hurricane Harvey in some of the statements on social media.

People asking why Joel Osteen didn’t open up his church to provide refuge. “If he had just opened his church…”

People stating that the people in Houston should have evacuated. “If they had just gotten out of Houston…”

People criticizing the unwise actions of those who tried to drive out of Houston after the flooding was severe. “If they had just listened to the news they would have known…”

Isn’t it easy to armchair quarterback someone else’s tragedy?  Isn’t it so clear what they should have done, how they failed to respond correctly?  Don’t you feel righteous and correct and so much more…informed and wise…than those people who should have just ….

Yeah. Once again, we’d rather turn a blind eye to the random, arbitrary suffering of others than to face the truth: no matter how hard you try to do life correctly, horrible things will happen that will almost destroy you and there will be no good reason for the destruction.

And that’s what I mean when I say Our Privilege Is Showing.

When we sit in our dry, climate controlled homes, relaxing in our comfy chair, criticizing the failures of those who are suffering because of natural disasters, we are exercising the privilege of safety to erase the suffering of the endangered and the refugees.

When we demand that sick, suffering individuals look at the bright side of their illness (Aren’t you glad it isn’t your right arm?) we are exercising the privilege of wellness to erase the suffering of the sick and disabled.

When we refuse to acknowledge the hidden disabilities of those whose chronic illnesses are not immediately visible we are exercising the privilege of wellness to punish those who refuse to be openly and visibly disabled and refusing to believe their claims of disability because they don’t meet our ‘criteria’…even though even though the government and the medical field has established clear criteria for disability.

Anytime you ease your own discomfort with someone else’s situation by dismissing their suffering or their struggle you use your privilege to make that person invisible.

Well…I’ve got news for you.

God’s children are never invisible to God. God sees all of His children: the well, the sick, the wealthy, the poor, the adequately housed, the homeless…all of them. And He sees you when you decide not to see suffering, sorrow, loss, disaster, disability, homelessness, poverty, discrimination, and inequality.

Never forget, God is watching. What will He see you doing?

Our privilege is showing.  Aren’t you glad it’s not your right arm??