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Worthless

Published March 27, 2022 by zuzusays
Posted by Allen Rucker in Life After Paralysis on March 22, 2022

as posted in Christopher and Dana Reeve Foundation

open road
I woke up the other morning hating myself. The best word to describe this state is worthless. Don’t ask why. I have absolutely nothing, long or short-term, to hate myself for or to condemn myself as worthless. I’m not the Hillside Strangler. This is simply a diffuse, underlying mental impulse that is always there, I think, but only pops up from time to time. For decades I thought the source was the loss and self-blame attendant to the accidental death of my father when I was only two. Maybe a therapist told me this. “Childhood trauma.” When I became paralyzed, I thought I had replaced that trauma with a new trauma, which of course, invites its own form of self-denigration. After all, you are permanently crippled and seen as lesser-than, in the eyes of many, and since there is no one else to blame, you blame yourself.

I had, at least initially, the exact opposite reaction. I felt a rush of confidence in how I dealt with the paralysis and consequently renewed confidence in other abilities, from personal resilience to home finances. This self-affirming phenomenon has a name and theory behind it, first noted by two professors at the University of North Carolina. They called it “post-traumatic growth syndrome.” You don’t just spring back, you spring forward. The idea has plenty of naysayers, but from personal experience and that of thousands of other trauma survivors, it’s real.

Which, of course, doesn’t preclude other consequences of trauma to coexist with whatever possible benefit is occurring. My own neurologist summed it up this way: “If you were a drunk before you became paralyzed, you’d still be a drunk afterward.” You may announce you are now getting sober, but you will no doubt be fighting the urge forever. Otherwise, paralysis is a miracle cure, which it isn’t.

I think my sense of worthlessness is set off by a specifically debilitating thought or image and being paralyzed only amplifies it. Every morning I wake up and say, “Oh, f**k, I’m still paralyzed!” Sensing your profound limitations only reinforces that no-good feeling. It’s irrational, but that doesn’t make it less real.

I don’t really care about the origin of this menacing impulse. I just want to cage it, deball it, and send it on its way. After all, it’s only a thought or thought-feeling, so if I bombard it with other thoughts or actions, I can at least nip away at its potency.

The first thing to do is do something. “Get up, get out,” as the disabled actor, Chill Mitchell, likes to say. Or as my good friend, John Lynn, a longtime veteran of AA, wrote me: “Get the hell out of yourself.” Don’t wallow in the state, like mental quicksand, trying to find more ways to chastise yourself. Find a focus. My best focus is writing. I’m not the first dufus to hit upon writing as therapeutic. Go online, and you’ll find plenty of writing-to-heal endorsements. I figured this out early on in my paralysis. It’s not so much what you write but the act of writing, literally, that can dislodge you from recurring mental traps. Maybe bowling has the same effect, I don’t know, but, hey, give it a try.

As far as counter-thinking, it’s always good to remember the famous three P’s immortalized by psychologist Martin Seligman. Don’t personalize – see it as “a” problem, not the problem you brought on yourself. Don’t think of it as pervasive. It is not a mental spell that affects every aspect of your life. That’s a hole we create ourselves. And finally, it’s not permanent. Don’t feel worthless for feeling worthless. A, you aren’t worthless and B, you will not always feel that way.

While you’re at it, try to cure yourself of the useless habit of saying “I’m sorry” when anything bad happens to you or someone close. I’m still working on this one. I continue to apologize for my paralysis ten times a day. “I’m sorry for being in this wheelchair and needing your help…” Don’t apologize for who you are. Let yourself off the hook. After all, the hardest person to forgive is you.

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.

Letting go

Published January 1, 2016 by zuzusays

Slide1One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning.

I am not talking about physical functioning, as I was and am very used to that happening. Needing reading glasses was the first major step towards that, and possibly giving up playing squash the second!

I’m okay about my hair going grey, I’m okay with my wrinkles that mean I have lived and loved, I’m even reasonably okay living with the ongoing chronic pain of severe arthritis and other chronic conditions.

Accepting that I can no longer manage medication, nor sometimes work out how to get dressed or make a cup of coffee is emotionally debilitating. My maths ability has been impaired for some…

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Warrior Transition Battalion

Published October 26, 2015 by zuzusays

I have no doubt that meeting you will have been an encouragement and inspiration to many of these soldiers. I’m so glad you are the person they were able to talk with, a man of understanding, innovation and utmost kindness.

Handihelp Blog

On October 9, 2015 I had the special privilege to be able to address the 3rd Battalion, 85th Mountain Infantry, Warriors Transition Battalion on Fort Drum. Fort Drum is the home of the 10th Mountain Division, which is the most deployed division in the Army. The invitation was extended to me by the Battalion Chaplain Peter Bahng, who had stopped at the Handihelp display in August during the Outdoor Adventure Day on post.

Friday began with the luncheon at which time I had the opportunity to speak to many of the wounded Soldiers personally in an informal setting. A display board was set up containing pictures of some of the different activities I have engaged in and a digital picture frame showing adaptions from Handihelp.net was also running. My wife Marge and I had an opportunity during the luncheon to sit and chat with a Lieutenant Colonel Johnson the Battalion…

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Looking Back

Published October 2, 2015 by zuzusays

Handihelp Blog

How does one begin to deal with the devastating changes in lifestyle brought on by a catastrophic event? One of the techniques which can help is to look back over your life and find skills you already have that can be helpful. This is why, I believe, adapting is so very difficult for young people who have fewer life experiences to draw from. At 68 years old my life certainly seems to have gone quickly. I wonder how much longer I’ll live. Not only have I looked forward, but lately I’ve spent more time looking back. The pivotal point looking back was my accident in 1999 which left me a quadriplegic at the age of 55. In the past 12 and half years I have forgotten what it was like to walk, run, and bike or make love. Hard for me to believe, but true. What I do see when…

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VISUALIZATION : Worth Looking Into

Published October 2, 2015 by zuzusays

Handihelp Blog

Visualization also known as imaging or meditation is a technique which has been used by amateur and professional athletes for a long time. It takes place prior to a game or an event in which they wish to perform at their highest level. Normally it’s done in a quiet area where there are no external stimuli, the individual mentally imagines their performance in the upcoming activity. While this has been used for years by athletes, it’s a wonderful technique for anyone who wants to improve their ability to function in everyday situations. While concentrating with your eyes closed you should visualize yourself interacting with the environment you’ll be in and performing at your best.

Last weekend professional golfer Jason Day could be seen, imagining a difficult chip shot he had to make out of the bunker onto the green. Once he was ready not only did he get out of…

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 You Are Not Your Illness 

Published August 15, 2015 by zuzusays

wehaveapples

You are not Depressed Debbie. You are not “a bipolar woman” or “a schizophrenic man.” You are a wonderful, talented, unique person with gifts and talents to bless the world with. You may have red hair, blue eyes, be allergic to bananas and have bipolar disorder. You may be a person who loves to paint and who suffers from depression. Who are you?
Your mental illness is one aspect of your life. It does not DEFINE you. Do not let it. It also does not make you defective, less than, damaged, or inadequate. You deserve love, just like anyone else. You deserve success and happiness. You might be different, but different does not mean broken.
You may feel like you are cursed, but often times in life our curses are also our gifts. Do you ever think if you didn’t have your illness you might not also have the capacity…

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Ten Years and Nothing Changes

Published August 8, 2015 by zuzusays

In 2005 my mother in law, who had dementia, Alzheimer’s, needed more care than we could give her ourselves.  For more than three years her oldest daughter had been staying with her every night after work and on weekends.  The youngest daughter stopped by mid morning to help tend the vegetable garden, do yard work, have lunch, fix her hair, before going back on her school bus route.  My husband mowed the lawn, did repairs, fix tomato or ham sandwiches, have dinner, or just to talk to her endlessly.  I humored her on the phone for hours, went by in the afternoons to keep her from “getting on the bus to go home” with her packed plastic grocery bags, listened to her stories as she rifled through the top dresser drawer or took her outside to mess in the yard.

There had been some indications that things were getting too difficult for us to continue leaving her on her own during the day in her own home.  Our family needed help so we started looking for services.  We needed someone to come to her home a few hours during the day to just be with her.  But we didn’t have money to pay someone $10-$15/hour 8 hours a day five days a week.  She had Social Security and a VA pension that amounted to less than $900/month.  She owned her home, but the cost of electricity, fuel oil, groceries, insurance, property taxes, supplemental medical insurance, phone service, medications all took up the majority of those funds.  She had lived frugally since her husband passed in 1969 and had been able to save up about $16,000 as well as pay off her home worth about $100,000.  She owned a 1970s model car.  My husband and I had been buying her medications for several years to make sure she didn’t stop taking any, and I’d been able to get her on Patient Assistance Programs for her Aricept and Namenda, saving several hundred dollars a month for many years.  But neither she, nor any of our families had enough money to pay for in home sitters to be with her.

I started looking for community or government services to help.  She didn’t qualify for anything.  She either had too much money in savings accounts (a problem because we couldn’t get her to understand that she needed to use the money to pay for care, and having dementia she didn’t think anything was wrong – an issue I’ll talk about in another post); or she couldn’t have the services in-home, but could go to an adult daycare, which wasn’t right for her at the time; or she would have to be put on a waiting list that was over two years long, and once she did get to the top, the amount of help was minimal.

Shortly after Mawmaw had a blood clot in her leg that resulted in an amputation just below her knee.  The doctor sent her to a skilled nursing facility for rehab, telling her and the family that she’d be able to go home after a few weeks.  I knew that wouldn’t happen and that he didn’t understand dementia.  The deal was that she couldn’t remember she didn’t have a leg, so unless you were there to remind her, or unless she looked down at her leg, she would start to stand up and, well, BAM!

So she was going to be in a SNF for the rest of her life.  We were given names of a few places a few days before her release from the hospital.  We went to start looking at the choices that would take her, and picked the best option.  The biggest problem is that I knew her Medicare coverage would only last a short time and then I’d need to figure out how to get her qualified for Medicaid.  I started the process.

We went to an elder care lawyer to ask for help.  He wanted $8,000 to take all the information I’d gathered together, “which was well organized and everything they needed”, to fill out an application for Medicaid and take the application to Social Services for us.  We’d have to take the rest of her money and prepay a funeral plan.  Later when we’d sell her house there’d be another cost for his services.  I told my husband that for less than $8,000 I could go to Social Services and fill out the paperwork.  That’s what I did.

Meanwhile Mawmaw was in the SNF and we were struggling daily trying to get info and updates on her progress.  A nurse would tell us one thing, a therapist another, the care planner something else.  One Friday afternoon the director told one sister that she would “be discharged on Monday”.  We were caught totally unprepared.  She didn’t seem ready to leave, and we had no where to take her, but we knew she couldn’t go home to be by herself again.  We split up that weekend and began looking for assisted living and Alzheimer units for her to move to, going from one place to another learning as we went that there were ways to ask questions.

First and always ask – “Do you take Medicaid assignment and do you have Medicaid beds?”  If the answer is “No,” walk away.  The big fancy places that look so good you want to move in, walk away.  You can’t afford them (well, not if you were us).  If they have a pet in the lobby to greet guests, walk away, it’s too fancy and expensive for you.  If it smells, if people are smoking outside, if people are sitting lined up and down the hallways, if people come after you asking for help getting out, walk away.  That leaves you with about three choices, and only one will have openings.  Take it.  Pray a lot and often.

We got to the care planning meeting on Monday ready to share where we were planning to move her when they started talking about Mawmaw’s progress in therapy and how they were ready to “discharge her from therapy and move her to maintenance therapy” where she would only get help if she started losing skills.  My sister in law’s mouth dropped open and she asked if they were discharging her from their facility.  The director chuckled and said, “Oh no, she won’t ever leave here, she’s not capable of living on her own.”  My sister in law started crying.  She never cries.  Ever.

I was furious.

You know that scene in Fried Green Tomatoes where Kathy Bates is in her car waiting for a parking space at the Piggly Wiggly?  A man pulls out and as she starts to pull in a sports car with two teenage girls zips into the space she was waiting for and they get out and walk toward the store.  She tells them she was waiting on that space, and they reply, “Face it lady, we’re younger and faster.”  She sits a second and then becomes enraged, and then she remembers Towanda, the wild and righteous woman she’s been told about by the woman at the nursing home she visits.  Towanda, the righter of wrongs, the woman of justice. She puts her car in gear and as she says, “Towanda” she begins slamming her car into the girl’s sports car, pushing it out of the parking space.  When they come out and ask what she’s doing she answers, “Face it girls, I’m older and I have more insurance.”

I was Towanda.

I told that director to look at my sister in law.  I told her that she never, ever cried.  I told her what we had done all weekend because of what she had said, and about the distress and upset she had caused us.  I told her we were tired of trying to figure out the “code words” of the nursing home, the insurance stuff, the medical stuff, the qualifying stuff, all of it.  I told her that they dealt with families every day like us and they knew that it caused problems for them, it was difficult, confusing, stressful, scary and that they could make it so much less so by making things clear and helpful in their language.

Ten years later.  A lady in our dementia caregiver support group calls to say she can’t care for her dad anymore, it’s gotten too difficult, it’s not safe for him, for her, for her daughter.  A good friend has called to get help for her parents, her mom has dementia and her dad can’t care for her well because he’s more frail.  In both cases at the same time I’m trying to help them get assistance, make decisions, find resources from community agencies, at nursing facilities, from mental health agencies, from faith based groups and volunteer organizations.  Nothing.  There is no help available.

Now that’s not what the information on the internet will tell you.  If you Google stuff in our community it seems there’s plenty of free help available from Senior Resources, Adult Center for Enrichment, the Alzheimer’s Association, the Shepherd’s Center, adult day care programs, respite programs, meal programs, nursing facilities, Medicaid….

Nope.  They will take your name, put you on a list, nothing is free, tell you to call your neighbors, ask people in your church, use family members, sign up for workshops and groups and conferences and support groups, call other numbers, go to counselors.

The group friend who needed help with her dad made an urgent call about a situation on a Sunday night.  We talked and I started trying to find help for her.  We don’t have a mental health hospital any more in our state for people whose behavior can’t be controlled.  Her dad’s behavior meant he needed to be out of her home urgently.  I called the hospital mental health department and talked to a social worker there.  She gave great advice and agreed that there were few options available.  After lots of talking and visits to several agencies that week, the following Friday night this friend made a call to 911, told them she couldn’t control her dad’s behavior and that she was afraid of him and asked them to send the police.  An ambulance took him to the hospital ER where he was seen by a doctor and nurses who all agreed that he could not go home with her and her daughter.  But…her dad was in the ER for 48 hours while they tried to figure out what to do with him and find a place to send him.  They couldn’t admit him, they couldn’t send  him home, there was no mental facility to send him to, no nursing facility would take him until he’d been evaluated.  Forty eight hours later he was transported by a sheriff’s car to a behavioral hospital in another county that agreed to take him until they could diagnose his problem and correct his meds and find a place for him to go.  Once there the process of getting him stable, sent to a skilled facility, qualified and on Medicaid, forms and applications all filled out, and the daily issues of his care followed the pretty much the same pattern that ours had ten years before.

My friend whose mom and dad need care is finding the same thing as she goes about getting the diagnosis from a doctor that her mom has dementia.  All care will have to be paid out of pocket until there’s no money left, then they will be qualified for Medicaid which in NC will not provide in home care, so they will have to be in nursing facilities.  There’s basically one path to follow here, unless you have private money or a generous longterm care insurance policy.

The Alzheimer’s Plan For America along with the Affordable Care Act seem to have promised help for caregivers caring for loved ones who have dementia.  But the goal of the APFA in the next 10 years is to be able to delay the onset of Alzheimer’s 5 years.  They are spending billions of dollars on that wimpy goal. They are spending millions of dollars in the next 10 years to do studies on the kind of help caregivers of people with Alzheimer’s need, setting up offices to do those studies.  At a meeting with representatives before finalizing this plan I told them that they could save millions by sending those same people to a couple caregiver support group meetings in each state and letting the people there tell them what they needed.  Then they could use the money to begin giving the help to the families that was needed immediately.

Except for the amount of money being spent by the government, being used out of taxpayer funds, being taken from money raised by slick emotional fundraising campaigns, ten years later nothing has changed.

I’m  Towanda.  I’m older and someday things will change.