Heartache . . .

aheartache7Heartache . . .

That mysteriously deep thawing of hope; that dank, on-going, torrential rain; that ache which hasn’t surfaced in almost 40 years; that ache of loneliness, of silence, of early dusks and late dawns; that aching pain of your soul being wrung like a dishrag; bookends of despair and pain on either side of sleep; the torture of sobbing in a diner.

Heartache . . .

That frightening moment which descends like a parachute upon throwing the deadbolt; ascending the stairs and sensing a household hollowness; this isn’t my home yet I’m its caretaker; he isn’t a parent, he’s my brother.  But my role has changed dramatically: his transference of authority known as power of attorney (durable and healthcare) has eliminated any aheartache2mourning I may have expressed.  I’m his representative and to an ignorant outside world he hasn’t really disappeared behind the safety of managed care, but has grown taller by five inches.

Heartache . . .

This designation has robbed me of mourning.  Instead I’ve got to be as sharp as a tack, thoroughly abreast of medical and financial details, composed at all hours in anticipation of that dreadfully somber tone of the caller. I’ve got to nurture relationships at the bank, his current residential facility, his physicians, his pharmacists, his auto mechanic.  My sleepless burden, borrowing a term from football, a handoff. He’s handed me his life like a principal to a ripe substitute teacher mumbling, “Good luck being Mrs. Brown: they loved her and will see you as an interloper.”  Imagine being someone else, especially someone that enjoyed a circle of friends, someone that will be surely missed.  Imagine filling those shoes.

Heartache . . .

This was my description of Rick’s working life to a social agency: “As a route/sales driver he was on the road early enough to arrive at his first customer by 7:00 AM.  Most customers were dry cleaners and upon arrival he singlehandedly unloaded an unpredictable variety of items: aheartachecarpets and rugs averaging 100 pounds apiece; fur and leather coats (five in each hand).  All items shifted while en route so he had to crawl inside a sweltering cargo bay.  Several customers were located upstairs or downstairs, so he would carry these awkward and cumbersome loads up and down stairs. Rick made as many as 100 stops in a single day in all types of weather. Carpets were by far the heaviest single item of significant proportion. Hauling carpets required him to stoop, hoist the carpet onto his shoulder and carry it into the customers store.  Most items for pick up were thrown haphazardly on the floor.Rick was required to crouch down, grab heavy carpets or garments, and under their added weight stand, and “sling”them onto his shoulder. He carried them to his van good-naturedly through deep snow or light snow concealing ice; against heavy traffic in urban areas, and in the dark during the short days of winter.”

Heartache . . .aheartache6

My admiration for Rick has never diminished; for seventeen years he worked a “hard labor job” which often kept him on the road for eighteen hours. He performed his job with integrity, commitment, and an unwavering pride. He did something I could never do: for seventeen years, day in and day out, in blizzards, hailstorms, and black ice; in unrelenting heat, cloud bursts, and flooding; and one wild turkey flapping its way into Rick’s van, he never quit. Ever. That’s called honor.

Rick’s been transferred to a sub-acute rehab facility.  Here’s where you can send him your “Get Well” card:

Mr. Richard Didrickson
Mitchell Manor West Allis
Senior Living Community
5301 W. Lincoln Avenue
West Allis WI  53219
(414) 615-7200

 

“Hopeless Ness” and the Lass “Chance” (a recent chat) for marsh d.

atextingThis is an excerpt from a longer conversation with my cousin who’s been living with chronic pain and fibromyalgia.  This excerpt was of particular significance because it was answering an unasked question which was hidden “between the lines” regarding hopelessness.  If one is faced with 20 years of chronic pain, immobility, mood swings, etc. AND loss of hope what might their next stop be named?

Or is it the end of the line?

LUCY

Hello T. M. . . .,

I’m worried about you. You wrote a great post on hopelessness, are you feeling hopeless?

How can I help….I’m a good listener. You’ve poured your heart out onto the pages, you’ve been through a lot in your life and every one of those memories makes changes in the way our central nervous system functions and in the way the brain functions.

We (all of us who are chronically ill) put a lot of hope in those little pills. Those pills are able to aid you in functioning but can’t fix what has been broken. But, there is HOPE! The hope is within you and, with the help of another human being (not another pill), you can find a sense of peace and understanding.  Then we come to acceptance…..well, that’ll be a whole ‘nother blog.

 

T. M.

Hi Lucy:        
ahopeless
I made a promise to myself when I started this blog that I would be honest in my writing without sounding pitiful. I believe honesty transcends our diversity and therefore many can relate. The problem I have is that I suffer from untreatable maladies (brain, heart) and have recently been plagued by severe shooting pain in my lower and upper right side of my back, sciatica on my left leg, and most recently pain and weakness in my lower right leg. I was compromised with untreatable long-term illness, but then add these perpetual pains and immobility (I’ve been in pain every single day for 10 months): I take a cocktail of pain relief and muscle relaxants which work somewhat, but gastric bypass changes everything. Pardon my expression, but I feel like I’m all fucked up, none of my doctors seem to have the answers, and I am virtually homebound and use a small 3-wheeled walker to move around the house (which I’ll give to Rick when I’m finished with it). It’s almost impossible to have hope when you take stock of your life and all you see is lunacy, suffocation or heart attack, and constant and crippling pain. I’ve asked myself, “Am I really alive? Is this 24 hour ticktock simply doing time for a crime I didn’t commit? The only thing I look forward to is writing my blog. If only I could discover pain relief.

LUCY

I’m so sorry about your back pain….I have been through terrible sciatic pain and understand completely what you’re describing. It IS hard to abackpainhave hope!  What you’re describing is what everyone with fibro describes……many lose hope. Without hope, you have nothing. I was at that point at one time, too and made a plan to commit suicide. All seemed hopeless and I didn’t want to live a life of pain. i threw myself into research and coming to understand what was happening inside of me. I’m still coming to understand what’s happening…..researchers are still trying to come to understand what’s happening.  For 40 years, I went to the doctor, described my problem….he did tests, which all came back as normal. As long as the tests came back normal, there wasn’t a real problem. Thousands of people have gone through this same thing….test after test and all is normal. I was turned away and humiliated by a few specialists who didn’t believe me….no one would believe me. The doctors were trained in medical school that when someone like me comes in….to disregard the complaints….it’s all in her head and she’s making it up to get attention. Talk about losing hope!!!!!
Dr. Oz actually did a show on this a few months back and he admitted this is how the medical field has been trained …..to not take seriously any pain that can’t be diagnosed on a test. And, he admitted that he felt this way, too…..until just 2 years ago. Now, he has come to understand more of what’s actually going on inside of us. I am not alone.

Facebook has been like a miracle for me because I have found all of these other people just like me who have suffered for forty years and discounted, too. There are thousands and thousands of people all over the world who are suffering. The medical profession doesn’t know what to do with things they can’t see on a test!!  You have terrible pain in your back…..surely they must be able to see this pain on a scan. But, no….they won’t see it unless you have a herniated disc, that they can see. That, they can do something about because they can see it.

T. M.

I used to volunteer at The National Runaway Switchboard as a “liner” (the person who answers the call. I decided to continue until my problems surpassed those of the caller. Well, I stopped when Rick got sick and haven’t been back since. I could deal with the long-term illnesses if I could just shake the pain.

LUCY

I have learned so much. I went off on my own and spent a fortune on alternative therapy and a Fibro Specialist that wasn’t covered on my insurance plan. I had to drive 12 hours one way to get to see him….talk about desperate!! But, he helped me gain a semblance of a life back. alternative medicineIt was worth every penny.

What I’m trying to say is this….the doctors don’t have all the answers. In fact, they don’t have many of the answers. There is much more you can do to help alleviate the pain.

One thing I suggest is seeing a Pain Specialist. Jeff has been suffering with debilitating sciatic pain for some time. He couldn’t walk without his walker. He was losing hope.

He went to see the pain specialist who injected the spine…….because the injections helped somewhat, the doctor knew that a more radical treatment would work. He did the treatment on his sciatic nerve and it was a MIRACLE. He was able to walk, to stand up straight and to begin to enjoy life again.

Just the value of having one other person understand what you’re going through and to be able to relate with compassion and empathy is very healing.  I’ve seen it again and again as I talk to people. They all say it . . . empathy, simple compassion for another’s suffering.