TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘“Prisoners Without Bars: A Caregiver’s Tale”’

SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

Lisa Parker

 

Lisa Parker (survivor) … I went to Al-Anon with my mom last night, and it was gr8!

FocusGroup-ridgetopvirtualsolutions

 

 

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(Photos compliments of contributor.)

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Survivors SPEAK OUT! . . . Su Meck

Survivors SPEAK OUT! Su Meck

presented by

Donna O’Donnell Figurski

 

 

1 Su Meck 10862625_10204051895112757_5004286472948685848_o

Su Meck – Brain Injury Survivor & Author of “I Forgot to Remember”

1. What is your name? (last name optional)

My name is Su Meck.

2. Where do you live? (city and/or state and/or country) Email (optional)

I currently live in Northern Virginia (USA) outside of Washington D.C.

On what date did you have your brain injury? At what age?

3. My brain injury occurred on Sunday, May 22, 1988. I was twenty-two years old at the time.

4. How did your brain injury occur?

A ceiling fan in my kitchen fell and hit my head, knocking me down. As I fell, my head hit the kitchen counter, and then hit the floor.ceiling-fan-clip-art-1160226

5. When did you (or someone) first realize you had a problem?

My husband, Jim, was sitting right there at the kitchen table reading the Fort Worth Star Telegram when the ceiling fan fell on me. He saw the whole thing.

6. What kind of emergency treatment, if any, did you have?

Jim called 911 right away. The ambulance came and took me to the closer (smaller satellite) hospital. But it was quickly determined that I needed to be at the bigger downtown Forth Worth hospital because that hospital actually had an MRI (magnetic resonance imaging) scan machine.

7. Were you in a coma? If so, how long?

Whether or not I was in a coma depends upon which pages of my (handwritten) medical records one reads. I was definitely in and out of consciousness for a few days, but I am unsure as to if I was in an actual coma.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

Rehab? In Texas? In 1988? LOL! The “rehab” that I had was terribly inadequate, especially by today’s standards. I was assigned a physical therapist and an occupational therapist, but it is unclear what specifically those people did with me.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?Forget

The most significant loss for me was experiencing total retrograde amnesia, which means I lost all of my memories of roughly the first twenty-two years of my life. Initially, both short- and long-term memory were affected. I did not recognize my husband, my two children (ages 2 and 1), any other family members, or friends. I also couldn’t walk, read, count, brush my teeth or hair, feed myself, etc. My personality post accident is the opposite of my personality from before the accident.

10. How has your life changed? Is it better? Is it worse?

My life totally changed. Better or worse? It’s way more complicated than that. I don’t personally know what my life was like before the accident. I have to rely on the memories and stories of others who knew me. Which, by the way, really kind of sucks.

11. What do you miss the most from your pre-brain-injury life?

I don’t have any memory of anything from my life pre TBI (traumatic brain injury): all of my childhood/teenage/early adulthood memories, learning how to ride a bike, birthdays, grandparents, learning how to play piano and drums, vacations, my first crush, my first kiss, pets, losing my virginity, college-looking (the first time), sorority rush/initiation/parties/friends, meeting and falling in love with my husband, my wedding, the pregnancies of my two boys and their first years, and so many, many, many more …

12. What do you enjoy most in your post-brain-injury life?Speaker

Advocating for my fellow TBI survivors. I love speaking to groups of survivors, caregivers, and anyone really about what it is like to live with a TBI.

13. What do you like least about your brain injury?

Nearly everything else

14. Has anything helped you to accept your brain injury?

Even though there are still some days that I feel as though I can’t do, or understand, or remember a damn thing, the process of writing my book helped me to come to terms with how far I have actually come since my accident.

15. Has your injury affected your home life and relationships and, if so, how?

Oh yes! I don’t feel as if I am part of my family (my parents’ and siblings’ family). I think of my kids as more like my siblings. And my husband? Well … We are still married (33 years) … But since my accident, there have been some genuinely shitty times!

16. Has your social life been altered or changed and, if so, how?

I’m sure it has changed in many ways, but one thing that comes to mind (and the thing that was most noticeable when I was in college at both Montgomery College and then at Smith College) is the fact that I feel way more comfortable around people in their 20s and 30s than I do around people my “real” age (50s).

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

Jim, my husband, is my main caregiver now. But at times, my children often took on the caregiver role because Jim traveled so much.

3 Su Meck & Jim 10835181_659603147482572_2314662174685025134_o

090518 PressKit_DonnaODonnelFigurski dmf3 091218

18. What are your plans? What do you expect/hope to be doing ten years from now?

Wow! This is a tough one. I would love to continue writing (and publishing) stories, essays, lyrics, whatever. I always wanted to be part of a working/performing rock band, playing drums as well as singing. I want to become more proficient on the guitar, uke, and piano. I’d love to travel around speaking and educating people about what it is like to live in this crazy world as a TBI survivor. I’d love to move back to New England. I want to ski, and hike, and learn to swim. I’d love to have a dog (a service dog would be great to keep me from wandering). I want to take long extended vacations to Australia, New Zealand, England, Ireland, and even Canada.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Be happy with who you are now, even if you are one hundred percent different from the person you were before. Be honest with yourself and others. It is okay to ask for help. Graduating from Smith College in 2014 was a huge accomplishment for me. In fact, Smith almost did me in physically, mentally, and emotionally. But Smith also gave me a tremendous gift: An enthusiastic love of reading and learning. Keep learning!

I forgot to Remember Book Cover20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Please buy and read my book, I Forgot to Remember: A Memoir of Amnesia. (I’m shameless!) And, if you like it, please write a positive review on Amazon and/or Goodreads. (Yes, I’m truly shameless!)

 

 

Please check out Su Meck’s book. It’s a great read!

 

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Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

Caregivers SPEAK OUT!

Carol (caregiver for her husband, Andy)

presented by

Donna O’Donnell Figurski

 

Carol1. What is your name? (last name optional)

Carol

2. Where do you live? (city and/or state and/or country) Email? (optional)

Toronto, Ontario, Canada

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.th

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

Yes. I was working full-time, but I resigned after the accident.

7. Did you have any help? If so, what kind and for how long?

We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.

9. Was your survivor in a coma? If so, what did you do during that time?

My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music.e799afda1f4dee4bd0c8c6e0606325b1

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

My husband was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.

13. What do you miss the most from pre-brain-injury life?hotel-clipart-transparent-background-4.png

We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.

14. What do you enjoy most in post-brain-injury life?

Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.

15. What do you like least about brain injury?

A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.

16. Has anything helped you to accept your survivor’s brain injury?

Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”No Excuses

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.

18. Has your social life been altered or changed and, if so, how?

Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.

volunteers19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love to volunteer and help other people.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Be patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.

 

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Survivors SPEAK OUT! . . . Gage Mabry

Survivors SPEAK OUT! Gage Mabry

presented by

Donna O’Donnell Figurski

 

Gage Mabry 1

Gage Mabry – survivor of brain injury

1. What is your name? (last name optional)

Gage Mabry

2. Where do you live? (city and/or state and/or country) Email (optional)

Missouri, USA

3. On what date did you have your brain injury? At what age?

October 24, 2015  I was 20 years old.

4. How did your brain injury occur?

I was working, and a fifteen-pound scanner fell from a twelve-foot ladder overhead. It landed on top of my head.

5. When did you (or someone) first realize you had a problem?

Immediately. I knew that I took a good hit to the head. It was like being a cartoon character in a slow-moving cartoon.

6. What kind of emergency treatment, if any, did you have?

There was no emergency-care immediately after the accident. I continued to work the rest of my shift. I was disoriented, my vision was blurry, and I developed a massive headache. It wasn’t until my mom tried to wake me up that we realized there was a problem.1304_Symptom_12

7. Were you in a coma? If so, how long?

No

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I was sent to a company doctor, who at first diagnosed my injury as a concussion. When my symptoms continued to persist and worsen over the next few weeks, the company sent me to have a CT (“cat”; computerized tomography) scan, which showed no abnormalities. Over the next three months of “rest,” my symptoms continued, and new ones developed. So now, my brain injury was diagnosed as Post-Concussion Syndrome. I was sent for neurological testing, which showed deficiencies in brain function. I was then referred for further treatments to involve pain management, balance therapy, and counseling. But, due to the situation, I never received any treatment other than what my family could try and provide. Now after two years and an independent medical exam, I’ve been diagnosed as having “Diffuse TBI” (traumatic brain injury).

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

headacheI have severe migraines that last for days, photophobia, sensitivities to loud sounds and to certain smells, and balance issues. I also have issues with depression, anxiety, anger, and fatigue that are so bad that I can’t even function some days.

10. How has your life changed? Is it better? Is it worse?

This is a hard one. My old life is gone, but my new one is filled with good and bad … it’s a work in progress!

11. What do you miss the most from your pre-brain-injury life?

Activities I used to do; my friends.

12. What do you enjoy most in your post-brain-injury life?

All the possibilities

Gage Mabry 2

Gage Mabry – Brain Injury Survivor

13. What do you like least about your brain injury?

The headaches

14. Has anything helped you to accept your brain injury?

My mom!

15. Has your injury affected your home life and relationships and, if so, how?

This has been a roller-coaster ride. It has devastated my family financially, but it has brought us together – with more love and support for each other that we had before. My friends and girlfriend have their lives to live, and I just wasn’t part of their plans anymore.

16. Has your social life been altered or changed and, if so, how?

This difference has been the hardest for me to accept. I went from being a popular, outgoing, and athletic person to a withdrawn, angry, and depressed person overnight. Social anxiety has been the hardest things to try and overcome, but I’m doing it day by day. Finding humor in that anxious setting has been the best medicine ever! I explain it to people as an “EMP” … electrical magnetic pulse … when I can’t remember my left from my right or forget how to speak. It eases the tension.

Mabry, Darlene Watson Caregiver

Darlene Watson Mabry – Caregiver

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My MOM! And, yes, it has been so hard for her. I don’t know how she does it. She’s a

superhero to me!

18. What are your plans? What do you expect/hope to be doing ten years from now?

I still have my dreams that I will fulfill. They have just been altered. Instead of a “Game Designer” … it’s a “Game Broadcaster”; my physical-fitness regimens have been modified to walking instead of running. “Compromise” is what my mom calls it!

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

You may have setbacks, but that doesn’t mean the game is over!

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Never give up – regardless of how bad it gets – because you belong to a special group now … you are a Survivor!

 

Gage’s mother wrote a moving “Faces of Brain Injury”  Click to read

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SPEAK OUT! NewsBit . . . . . Blood Test Developed for Brain Injury

Blood Test Developed for Brain Injury

presented

by

Donna O’Donnell Figurski

 

th-1The Centers for Disease Control has reported that traumatic brain injury (TBI) accounts for more than 2.5 million visits to emergency rooms (ERs) in the US every year. Many people with a concussion do not even go to the ER because they have no symptoms and don’t believe that the ER can diagnose a brain injury if it’s not serious enough to be detected by a number of indirect tests. A CT (“cat”; computerized tomography) scan is usually ordered if a brain injury is suspected, but only 10% of CT scans detect a brain injury in people with a mild head injury.

thA quick, sensitive, and accurate blood test will soon be available for ERs EmergencyRoomto know if the brain has been injured. Some people will be negative. They will not need a CT scan and can go home with no worries. Others who are asymptomatic may actually discover that they’re positive for a brain injury. The ER doctor can then take appropriate action.

An objective blood test will be a game-changer for the treatment of TBIs. An obvious difference is that it will make many CT scans (and their radiation) unnecessary. On the other hand, people, especially those with a mild concussion, may discover they do have a brain injury and take appropriate steps. (Full story 1, 2)

 

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Sneak Peeks for Prisoners

My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company. Here are pre-order links for Barnes & Noble and Amazon.

Excerpt 4

Chapter 4

Unthinkable Odds

presented by

Donna O’Donnell Figurski

Crazed Woman

… I must have looked like a zombie. I stood mute, wringing my hands, breathing out and in and out again. I didn’t know what to do. I felt paralyzed. Brain SurgeonMy permission was needed to operate on my husband’s brain. How could I give it? How could I allow Dr. Hulda to ­work on my husband’s beautiful, smart brain? …

 

Please leave a comment/question. I will respond.

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As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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Past Blast . . . . . . . . . . . . . . . . . . Guest Blogger: Stages of Forgiveness – Melissa Cronin

“Guest Blogger: Stages of Forgiveness ”

by Melissa Cronin

(originally published January 14, 2015)

presented by

Donna O’Donnell Figurski

Girl Blogger cartoon_picture_of_girl_writing

 

More than eleven years ago, eighty-six-year-old George Russell Weller confused the gas pedal for the brake and sped through the Santa Monica Farmers’ Market. He struck seventy-three pedestrians. Ten people died.

I sustained life-threatening injuries, including a ruptured spleen and multiple fractures. Due to the nature of my traumatic brain injury, it wouldn’t be until three years after the accident when a neuropsychiatrist diagnosed me with a TBI.

During the early days and weeks of my recovery, weighed down by pain and the unthinkable – that others died while I survived – my brain lacked space for anything heady like the notion of forgiveness. Years later, when I possessed enough emotional fortitude to unearth the new articles I had collected about the accident, I decided I needed to find a way to forgive Russell Weller. I’ve been told that forgiveness is overrated, that you don’t have to forgive to heal. While that might very well be true, my want to forgive others for any wrong committed is part of my constitution. So I had to at least make an attempt to forgive Russell Weller. Otherwise, I’d be infected with a case of chronic bitterness and cynicism and worried I’d be contagious. Who wants to hang out with someone with a transmittable illness she has the capacity to heal?

To forgive, one must first assign blame. But, as in Russell Weller’s case, if there is no act of intentional harm, where do you place blame and, therefore, how do you forgive? To add an additional elusive layer, how do you forgive someone you’ve never met? Is it even possible to forgive someone you don’t know? I reached out to Russell Weller’s family years after the accident, but they refused my request to visit him. In 2010 he died.

The following year, I enrolled in an MFA program. During my third semester, still befuddled as to how to forgive Russell Weller, I wrote my critical thesis on the topic: The Face of Forgiveness. I examined how a particular writer, who had sustained life-threatening injuries after a car struck him, navigated the indeterminate nature of forgiveness on the page. Because each circumstance varies, forgiveness cannot be defined in absolute terms. *Since forgiveness is a process, I arrived at the conclusion that it can be charted in stages:

1) Understanding of the accident/incident

2) Transference of anger and other emotions

3) Self-pity

4) Awareness of others’ suffering

5) Avoidance

6) Surrender

Melissa Cronin leaves

These stages don’t necessarily occur sequentially. Like Elisabeth Kübler-Ross’ stages of grief – denial/isolation, anger, bargaining, depression, acceptance – the stages of forgiveness may overlap, or one may become stuck in a particular stage. For me, I became stuck in one or two and skipped another one or two altogether. It’s also worth noting that the stages of forgiveness may not occur in a defined timeframe.

Stage 1: Understanding of the accident/incident

I dedicated months to reading news articles and investigative reports, parsing out the details of the accident: What Russell Weller was doing in the moments before he sped through the market, his medical history, his driving history, what bystanders witnessed at the scene of the crash. Somehow, I believed by reading those articles I would get to know Russell Weller and, therefore, be able to forgive him, or not. But written words weren’t enough – they seemed static on the page. Even though some articles included his apology – “I’m deeply sorry for any pain that everyone went through” – I could not hear his voice, hear his remorse, anger, or fear. And with all the contradicting statements about Russell Weller’s character and what people saw or didn’t see, I only became more confused. I felt like a pendulum – swaying dizzily between sadness and anger.

Stage 2: Transference of anger

As I read articles about the role the local entities had to play in running the market, any anger I harbored for Russell Weller quickly transferred to city officials who were responsible for ensuring the safety of pedestrians. I wondered why they didn’t have sturdy barriers in place, rather than wooden sawhorses. But, similar to my confusion regarding how to feel about Russell Weller, my feelings and emotions swayed – from judgment to understanding, from contempt to submission.

Stages 3 and 5: Self-pity and Avoidance

I did not become victim to self-pity – perhaps the perpetual warring dialogue in my head thrust self-pity aside. For the same reason, I skipped avoidance.

Stage 4: Awareness of others’ suffering

As I continued my dogged search to find meaning within the chaos, I could not help but be lured into an awareness of others’ suffering.  I imagined the physical and emotional pain the other injured pedestrians endured and the rage and anguish that tore into the families of the deceased. I viewed Russell Weller as injured, too – emotionally, mentally, psychically. I imagined Russell Weller’s grief: plagued by nightmares, isolated behind drawn window shades, sallow from regret.

The judge who presided over Russell Weller’s trial said he “lacked remorse” Because he didn’t cry? Why is it that we have a tendency to forgive others only if they exhibit unequivocal remorse: falling to their knees, drooping, sobbing? But a display, or physical showing, of remorse is not necessarily what matters to those harmed. Of course, a sincere apology does not negate the harm done, but sincerely spoken words of remorse are what matter. The quality of the voice matters: is it harsh, tense, creaky?

Melissa Cronin desert

In 2011, I finally obtained and viewed a copy of the videotape of Russell Weller speaking with police officers soon after the accident. I slid the video into the CD player, inched close to the television screen, so close I felt as if he and I were together in the same room. Though he did not cry, his full-toned voice quivered as he said, “I’m in trouble with my heart and soul.” His voice then quieted to a whisper, as if he were in church mourning over the dead: “God almighty, those poor, poor people.”

That’s when I forgave Russell Weller. That’s when I surrendered – to Russell Weller’s remorse.

*Stages of forgiveness conceived by Melissa Cronin

 

To learn more about Melissa, please visit her website/blog at Melissa Cronin.

Thank you, Melissa Cronin.

Disclaimer:
Any views and opinions of the Guest Blogger are purely her own.

(Clip Art compliments of Bing.)

(Photos compliments of Melissa Cronin)

 

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