Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!
What do you think? Has justice been served?
Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!
What do you think? Has justice been served?
Many people go through life and are never held up at gunpoint, robbed or in situations of extreme fear with shooters on a rampage.
I’ve now gone through this twice in my lifetime, thus far. We recently visited Waco, Texas to see our daughter, son in law and two youngest grandchildren (ages 10 months and 3 years). My daughter works at Baylor University and had decided to take us all to the dining commons for dinner on our 2nd night in Texas, (10-2019). We arrived, when suddenly, an alert was texted to her husband’s and her phones. The alert told us to “take shelter immediately & await further instructions”. My daughter started to panic as any mother of two babies would! I was frightened but tried to stay calm for her and the babies. We had to be separated from our husbands. They were sent to the men’s restroom & my daughter, the 2 babies & I were sent to the women’s restroom.
We awaited instructions but we were huddled into the corner of a handicapped stall. Finally, an employee came & told us we were on “lockdown” and we were all moved into the basement of the dining commons. There was stagnant air & it was difficult to breathe. I was very frightened but just continued to keep my daughter & grand babies calm. An employee, the cashier who I’d met as I entered the building; came around looking for me! She said that she was “drawn to me” & felt the need to come and check on me. She was so kind & she brought water downstairs for everyone. The water helped a lot and my granddaughter calmed down. Once we were all together as a family; in the basement, my husband was so good with the kids. We all tried to help them to be unafraid as we waited for the “all clear” alert. After about 55 minutes, we were given that alert and we were free to eat our dinner and go back to their home. We found out that about a half block away from campus, someone was shot. There were 3 people with automatic rifles on the run. The University took great care to see that we were kept safe during this ordeal. The staff was outstanding and very courageous.
It all brought me back to the time when I was 11 years old, in 1973, February. My parents, older brother & I went out after dinner to get my brother some Confirmation shoes. I was over looking at girls shoes, when suddenly I heard my father’s voice. He told me to come over to him. But a man had a gun pointed at my dads head! I didn’t know if I should try to run out of the store to get help? Or if it was not real? I remember saying aloud,”his “Candid Camera”? If I don’t cry, I get a prize?” My dad told me “Suzanne if you ever listen to me, do as I say right this moment! Come here right now!”
So I meandered back to the store room of the shoe store; where my family was held captive; along with another family of 4, a sales clerk and a manager. I saw my mother crying as one of the two men had their guns pointed at her face. The other man had his gun pointed at my dads head. I started to cry when they told my dad to empty his pockets and they proceeded to take my mothers wedding rings.(she’d gotten that engagement ring at age 14).
My dad grabbed the mans arm & said “Don’t you take those rings”! My mom yelled at him to get down and just do whatever he was told. I was crying so hard because the man said to my dad ,”shut up or I’ll put a bullet through your head”! I was really scared and my 13 year old brother stared emotionless as he was gathering every detail.
My mom passed out and the men grabbed my arm as if to take me with them. My mother laid on top of me as I was vomiting by this time! They kept telling my parents to “shut her up – or they would!” Finally, they ripped the phones off of the wall and made us lay down face to the ground. They said that we should wait 20 minutes before getting up. The manager somehow called the police. After they arrived, we told them as many details as we could remember. My brother stayed calm and gave them lots of Information.
After that, my mother was so scared & she didn’t want to go home right away. My Uncle, her brother, lived nearby. We went to his families home so my mom could calm down and feel better. Finally, we went home but I’ve never forgotten that day in my life. I had nightmares for a very long time and never was given a chance to discuss my feelings or fears. Lastly, I was blamed for the robbers taking my mothers wedding rings. My mother told everyone that as she was covering my mouth (because I was afraid, crying & even vomited as they robbers were saying “shut her up, or we will!!”), the robbers saw her rings sparkling and so they stole her precious wedding rings. Even though the robbers took all of the people’s wallets & jewelry etc., somehow it was my fault that those rings were taken off of her finger.
I guess I just wanted to share this with you all because the ordeal in Texas brought back some of those memories. After the robbery when I was only 11 years old, there were many more traumatic events that I experienced. If you know me or if you’ve had the chance to read the early posts &/or password protected posts in this blog; you’d realize how true this is. I was later diagnosed with PTSD, in or around my late 30’s. I finally received the help that was much needed. The Domestic Violence shelter and therapy has helped me over the years, to get past some of my fears. I still suffer today, but not nearly as much as I had in the past. Thank you for letting me share my experiences here with you today.
I found this article not too long ago. I thought you might want to read it if you are a high impact chronic psin patient or anyone living with psin on a daily basis.
Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice
— Read on www.justice.gov/usao-wdva/pr/indivior-inc-indicted-fraudulently-marketing-prescription-opioid
So I found this interesting article and I thought some of my fellow Deaf/Hoh persons might want to read about it. The link is below and it’s about a card for Deaf/Hoh individuals to have & use when trying to communicate with the authorities. This article is from Minnesota. I hope you enjoy reading it!
I just wanted to let you know that after a year of contemplating what I wanted to say, I wrote my thoughts about what happened between U.S. Pain Foundation & me last year in September 2018.
During my time as a very active Health/Pain Advocate, I achieved a few proud moments that I would really like to share with all of you:
1: I was awarded a “Special Tribute” from the Governor of the state of Michigan (Governor Rick Snyder) in 2016
2: I was the runner up finalist for 2013 WEGO Health “Unsung Hero” Award
3: I have over 42 published articles with the National Pain Report.
4: I was awarded the “US Pain Ambassador of the year award 2016”
5: I was certified as an in-person support group leader & ran a support group in my city for chronic pain & RSD/CRPS
6: I was accredited in a pediatric course for RSD/CRPS via AMEDCO & RSDSA
7: I was appointed to the Board of Directors for the U.S. Pain Foundation
8: I was honored in my hometown, with a Newspaper article
I didn’t do any of what I did, in order to get something in return. But these were amazing rewards after so much time went into my multiple US Pain Foundation projects, my writing, videos, Support Groups, getting proclamations & doing many many Awareness Events for USPF, RSDHope & RSDSA.
The Link to my 1 minute You Tube Video (1 minute long)
I’ve been contemplating writing my side of the story; after severing my ties with the US Pain Foundation in September 2018. I have my story written and published. If you’d like to read it, just go back one blog post before this one.
Below are a few photos that remind me to keep going when I sometimes feel like giving up. I am strong and so are you! We can do this together!
Here’s the link to Pat Anson’s Pain News Network article week of 5-12-19:Misappropriation of funds by the US Pain Foundation
I’ve had some things weighing on my mind lately. I had thought about keeping them to myself because I’m not a person who likes to be in the midst of turmoil. I try to live as drama-free as I possibly can. But a few months ago, I was contacted by Pat Anson, from the “Pain News Network”. I declined to speak about the events hovering around the US Pain Foundation & decided to take the high road and not allow my feelings and emotions take flight. It’s been an entire year & I let “the dust settle”. I waited an entire year to post my story about this. I didn’t want this post to be written with anger or any feelings of revenge. But there are a few issues that have been tugging at my heart and bothering my mind. These continue to nag me in my thoughts.
Since Pat Anson’s articles have surfaced; I’ve read several pieces of information that are now public knowledge. I’ve decided that there are some things I’d like to share because I do have a story to tell. I will only share with you my personal observations, opinions and experiences.
First, I must share that when I was added to the Board of Directors of the US Pain Foundation,(officially on January 31, 2018), I was excited. Around that time, I decided to call one of the persons whose photo I’d seen on the USPF website listed as a Board Member. She was also director of their Medical Cannabis program. I’d been told she was a veteran Board member. I called to ask her a few questions, such as: “What was it like, being on the Board? What do we do as Board Members etc?” She laughed & told me that “there was no real Board of Directors”. She added that they’d never even had a board meeting! I was a bit disappointed at hearing this news. But it was soon confirmed. The Board of Directors of the USPain Foundation, were actually just photographs on the USPF website, prior to January, 2018. There was no true Board of Directors. There had been no board meetings or elections. So….I’m guessing there was there no secretary or treasurer? I’m guessing this means that nobody had to get permission to write checks? Didn’t they have to answer to anyone about how or where to spend donation monies? How does the President, Vice President & Executive Director & other upper management, not know what & where money is coming in and/or going out?
(*I’d been a “volunteer ambassador”since November 2015. I did Awareness events and fundraisers. All the while I thought I was doing something good. I wanted to be a good advocate and help people living with pain, like myself.)
In looking back, in my opinion, It seems to me that when upper management realized that things had somehow gotten out of hand and that the USPF might be slipping away, they decided to get lawyers and accountants involved in an attempt to “fix” a situation that they’d created. It seemed to have finally become something larger that they could no longer handle alone. Again, this is just me looking back, trying to make sense of the entire debacle.
I had no idea what I was getting myself into. The first meeting was in California, in January 2018. But I was too ill to travel that far and watched it as a Zoom meeting. Nothing of super importance was discussed, from my recollection. After being recruited to the Board, I still had no knowledge of any significance until much later in the year. Also, in January of 2018, they wouldn’t allow me to make it public, that I’d been appointed to their Board of Directors. My volunteer position as Board Member was not added to their website until March that year. Over the following months, I found out what a mess things were and I immediately wanted to resign. I was advised by one of the attorneys, that “it wouldn’t look good” for USPF, if anyone on the Board resigned during that time. (*Even though Dr Abaci immediately resigned from the board when he found out about the misuse of funds in the past).
I was told that we should all stay and help to reorganize & rebuild USPF. The attorneys explained that it wouldn’t really look good for any of the Board Members to resign in the midst of this reorganization. Therefore I stayed for as long as I felt that I was doing something good. Even prior to becoming a Board member, I was given “busy work” & then asked to do research & write two articles for the “Learn About Your Pain” portion of their website. I was asked to research, write and include links with graphics about S.I.B.O and Dysautonomia. I turned in several pages of completed research. Almost a year later, I inquired about when everything that I had done was going to be posted to the “Learn About Your Pain” website? I received angry emails from several members telling me that with everything that USPF was going through, how could I even think about myself? (In Spring of 2018, I was also asked to make a video about RSD/CRPS, that I in fact made and it also was never used). I was asked (3) three times, to be a part of the USPF “INvisible Project”. A 4th time, I was told that I could tell my husband that he was going to be a part of the “Caregiver” edition of the INvisible project. Each time I was invited to be a part of that, I signed video/photo releases and I answered 10-12 questions in complete sentences. I gathered photos etc., and turned them into the USPF’s person in charge of that project with the interim CEO. Each time,within days of handing back my completed tasks (*just remember that I am also a chronic pain patient and was an unpaid volunteer), I received an email from the person helping the interim CEO with that project. She just told me things like “Ooops, My Bad?? I guess the interim CEO has something bigger in store for you later”! This went on for over a year.
In getting back to the true issues at hand, in Or around early Spring 2018, we asked the former CEO to resign. The Board meetings were only and always about the situation that USPF found themselves in, regarding the former CEO. Then in July, 2018; my Pain Management doctor told me that he was going to immediately remove me from my long acting/extended release pain medications (after almost 14 years of doing well on them). He said it was because of the CDC Guidelines.
I left the appointment that day in tears. I feared for my life and what the future was going to feel like. I arrived at home to an email from the US Pain Foundation. It was a survey asking people to tell what they know about Bupenorphrine. Being a board meeting member, I immediately called the interim CEO. I shared with her my shock & dismay about this email that went out to the pain community; the very people who I try to advocate for and protect. I asked her, what prompted this survey? I found out that the foundation had received a donation from the company that makes Suboxone/Bupenorphrine ( Here’s a list of the medications that RBI makes). My exact words to her were “How could you allow USPF get in bed with Andrew Kolodny?” She tried to assure me that Suboxone wasn’t anything like Bupenorphrine (*see photos that are included with this article). I was told I didn’t know what I was talking about and I was mistaken. She went on to explain that one condition of the donation was to get the public to have more knowledge, or to see what the pain community actually knew about Bupenorphrine. Next, I asked the interim CEO if she knew that the drug Bupenorphrine was not FDA approved for pain (at that time), in the USA? I told her it was an addiction medication and that people are labeled an addict once they’re put on Suboxone/Bupenorphrine; even if it’s for chronic pain! She told me that members of the pain community should have access to all different kinds of medications and therapies. I was very upset and I decided to do more research.Bupenorphrine is a weak analgesic that may slightly help those who have chronic pain AND addiction
Along with many among the chronic pain community, I had already been personally feeling that USPF has not been supportive of opioids, for chronic pain. I have written two articles about these medications: About Suboxone/Buprenorphine-and-naloxone and More About Bupenorphrine/Suboxone. I wrote these articles because I felt that the pleas of the chronically ill, the disabled and those of us living with daily ongoing high pain illnesses/issues; were not being listened to. We were not being heard by our Drs, the government or our own US Pain Foundation.
As soon as that conversation with the interim CEO ended; I knew that my time volunteering with USPF was coming to an end. I had been already feeling that they “push” complimentary therapies and medical cannabis without any support for a portion of the pain community who relies on opioids for pain control. They portray complimentary therapies as though they can actually end chronic pain without any help from medications. They publicly & actively support their medical marijuana program. If they can support a Federally illegal substance; (which I’m personally not against when & where it is legal; and only for medicinal purposes), and if they support all methods to alleviate pain, then where’s their opioid program? I feel that people should be able to use Marijuana, Kratom, acupuncture or opioids to alleviate their daily chronic pain. But opioids have been taboo within the USPF. Possibly for some political reason, in my opinion.
Another occurrence that helped me decide to resign after only 8 months of being on the Board of Directors, was when I found out about the movie/documentary that the interim CEO was making with Actress, Karen Duffy. It just feels to me, like she & other upper management persons within the US Pain Foundation are more interested in publishing books and being in movies, than actually helping the pain community. My sadness grew deeper when I watched the movie trailer: Balancing The Pain Scale, a documentary with actress Karen Duffy & interim CEO of USPF . Some of words taken directly from the trailer are “getting beyond the pill bottle”. Once again, USPF was demonizing opioids. I’m not the only one who saw this either. Here is an article that I found from A prominent advocate for the pain community : A Blog Post from Steve Ariens, “Pharmacist Steve”.
The very last straw for me was when the Interim CEO & the rest of the Board, contemplated not telling the USPF “In-person” support group leaders that they were no longer covered by insurance. I was the only Board member who said that I’d have no part of that! If you’d like to read my resignation letter (redacted items are the attorneys names and anything that was not my information to share), it is here: Why I Resigned From The US Pain Foundation
I still find it difficult to believe that nobody else who’d been in upper management of the foundation for several years, knew anything regarding the going out and coming in of money/funds?
After my resignation, I started hearing stories from ex-Ambassadors that involved a couple of upper management persons being involved in some behavior that in my opinion, was inappropriate. Some of this allegedly took place during a few USPF sponsored events. In 2016, July; at the University of New England, “Pain Summit”, my husband and I stayed overnight at a nearby hotel instead of staying at the dorms. It appears that we missed seeing anything first-hand; but according to at least 2 eyewitnesses (one that actually called & showed me some videos), there were high ranking members involved in behaviors that I would consider inappropriate for anyone, let alone, upper management of a non-profit. Especially not during an event sponsored and run by that same Non-Profit.
All of this has been on my mind. I didn’t want to lose my integrity by talking to someone else about all of this. I decided that this is my blog & my own story to tell. I’ve given you my observations, opinions & truth to the best of my knowledge.
**BELOW IS A 1 MINUTE VIDEO SHARING MY CREDENTIALS. THIS VIDEO SHARES ALSO THE VIEWS OF US PAIN ABOUT ME & MY VOLUNTEER WORK WITH THEIR ORGANIZATION FOR ALMOST 4 YEARS:
I thought you might enjoy a bit of something light, to cheer you. If you’re like me, the “Lion King” was my favorite of all Disney movies. I have here, “The Circle of Life” in American Sign Language-(ASL), from that Movie! I also have below, “Can You Feel The Love Tonight”? In ASL….I hope you enjoy! *Please “Like”& “Subscribe” on my YouTube videos & “click the little bell 🛎. This way you’ll be notified when I post a new ASL cover song video, to my YouTube channel. I’m trying hard to grow my audience. Thank you so much!! Here’s the direct link to watch ” The Circle of Life” In American Sign Language: “Circle of Life” ASL
Just for your information, at the beginning, of “Circle of Life”, I Sign “look over there! Look over there”… then I name several wild animals, such as: Lion, tigers, giraffe, elephant, antelope, hyena etc. Then I show them all coming forward as they did for Simba when they presented him at Pride Rock. Then I sign “we all must protest against the Lion named Scar. We will win & there will be peace again!!” (This is what I’m signing in parts where there is just music). Then I’m signing the song itself, to the best of my abilities.
Secondly, I have also done the song “Can You Feel The Love Tonight?” In ASL. Here’s the direct link to that song done in American Sign Language: “Can you Feel The Love Tonight?” ASL
I hope you enjoy these because they gave me pleasure to make it! Thank you so much for following “Tears of Truth”. Thank you also for Subscribing to my YouTube channel!
September marks the beginning of Deaf Awareness Month 2019. In light of this, I will be bringing you a few blog posts during this month, about the subjects of deafness, Deaf vs. deaf, ASL, Deaf history & Deaf culture, etc.
Today, I want to take a moment to truly introduce another part of my “story” to all of you. Most of you know much about me already. You also know a lot about my pain journey already, if you’ve been following this blog at all. But you may not know much information about some other aspects of my journey. You might have seen my songs done in ASL (American Sign Language) at my YouTube channel: ASLSuzyQ .
I’ve been married for 23.5 years to my soul-mate & the Love of my life, Craig. He’s been an Elementary school teacher for 40 years now & is retired as of June 2018. We have 2 daughters who are married and 3 granddaughters & 1 grandson: Olivia-6yrs, McKenzie-5yrs. & Kiera-3 yrs & Bryce-9 months. I am high Moderate Hard of Hearing (on left) & (mostly) Deaf (on right). I had been HoH (Hard of Hearing) since 2002. But in May 2019, I was diagnosed with an auditory tumor, called “Cholesteatoma”. Which turned out to actually be a rare disease because it often times comes back. It has caused pretty much total silence in my right ear. The Cholesteatoma (More information about Cholesteatoma ) had diseased my eardrum, hearing bones & mastoid by the time it was discovered & removed surgically on 7-26-19.
In short, I will tell you that I started out in life, totally hearing. By age 11, I had so much scar tissue in my ears L>R, from multiple ruptured eardrums, that I had a mild hearing loss. I babysat for a Deaf family with 6 Deaf children. My friend, Judy W. & I babysat as a team. I was fascinated to be able to talk without speaking. I was excited about learning ASL. These kids went to a residential school & they taught me colors, numbers, finger-spelling and everyday conversational signs. We played games like “Monopoly” and we played “school” & “house” etc.
I received ASL books for each holiday and I learned all that I could on my own. I went to college, then it was the only 4-year Sign Language studies/Interpreting program. After my 3rd year, my Aunt (who lived in AZ) called to tell me that she saw a job opening for an “Assistant Teacher” at a Deaf preschool. The requirements stated that a “college degree was required”. But I’d tested out of my first two college ASL classes & I practically lived in the dorm with 16 Deaf friends. We did everything together and I was just accepted lovingly by them. I’d been already Interpreting for the college classes at my own College, & I was doing Deaf/Blind medical Interpreting. So I flew 2,000 miles and applied for the job. I was so very excited to get the job, over others who had their degrees already. I worked at the Deaf school and I found a wonderful church youth group where I was involved in Interpreting for weekly church services. I also got involved in a an ASL drama (with choreography) group, called “Silent Impressions Productions”. We put on beautiful productions of ASL /choreographed songs & dances with gorgeous costumes. People paid $10 each, to come to our production at ASU. I was in “Nights on Broadway”, “One”(from Chorus Line) & “Hello Dolly”! It was such great fun! I was also in an ASL & Interpretive dance Christian group, called “Silent Praise”!
I had the best 2 years of my younger life ! It was such fun! I did miss home & my friends. I also needed & wanted to go back & finish my degree!
I came back home & finished college. Afterwards I was so excited to land a job as a school district Interpreter by day and as a University, “night classes” Interpreter, at my Alma Mater. I later married and had two children. At that time, with 2 small young children, I just Interpreted the night classes for several years. I continued with the medical Interpreting for Deaf/Blind.
I was in An abusive marriage and after 8 years, I got the courage to get my 2 baby girls & myself out! We went to a domestic violence shelter. I was so proud that My babies & I left on a Saturday early evening; & by Monday afternoon I had a full time job as a professional Interpreter for a school district. I Interpreted for the High school, Middle school & Elementary school.
So to speed things up a bit…. I divorced & re-married 7 or 8 years later. In the meantime I was offered a job with much more money & great medical benefits. I would be a Secretarial “float” (meaning that I had to learn everyone’s jobs so that I could cover for them). I had to learn 500 Drs schedules. I was also assigned to be the research secretary for a well known lung transplant doctor. I wore a pager and was paged multiple times weekly; if not daily, to interpret for Deaf patients who came into the hospital for either an appointment or to the ER.
One night that I particularly remember, I got called from home after I’d already gone home; to interpret for a Deaf patient. He was in the emergency room having a heart attack. I had to be precise in telling the doctors exactly how the patient was feeling. It was then, that I realized Just how very important an Interpreters job really is.
All was going well until the end of Summer in 2002. I was with my husband at a Summer art fair on a lazy Weekend day. During the drive home, we were going through a green light when another person, a man, went through a red light and crashed into our minivan. We were “T-boned”! It was classified as a “catastrophic” accident. My kids were not in the car! I thank God for that always! My husband was not hurt, but he was bruised up a bit.
Unfortunately, I was unconscious and ended up having multiple injuries and many surgeries. All in all, I also acquired several high impact chronic pain illnesses. Some of these include: Systemic RSD/CRPS, Polyneuropathy in Collagen Vascular Disease (aka EDS Type 4/heart & vascular), Degenerative Disc, Disease with multiple herniated & bulging discs at C5,6,7 & L4,5 & S-1 (along with spinal stenosis), Dysautonomia/POTs, Gastroparesis & more, including Cholesteatoma now as well. There’s more but I won’t bore you with all of that! I will add that I suffered a TBI that gave me lowered vision (prisms & convergence insufficiency) & hearing loss (I acquired 2 hearing aids in 2002-3 after the MVA). The TBI was such that I required brain injury rehab for 3 years.
After the Cholesteatoma & Surgery, I now identify as “Deaf/HoH”. The reason for this change (from HoH), is because now I can hear pretty much nothing in my right ear. The left ear is moderate/severe hearing loss. I’ve received two new Signia hearing aids & I’ll be re-tested again in December ’19.
I’ve stayed a strong advocate for Deaf/HoH. I fight oppression, audism & ableism alongside the Deaf community. Please feel free to follow me on Instagram ASLSuzyQ Instagram , Twitter ASLSuzyQ Twitter, Facebook My ASLSuzyQ Facebook Artist/video creator page and my Facebook group ASL Express Facebook group and YouTube My ASLSuzyQ YouTube channel . My ASL group on Facebook is called “ASL Express”. We express ourselves using ASL & with this group, I try to bridge the gap between Hearing, Deaf & Hard of Hearing worlds. I try to expose beginners to Deaf history, Deaf culture & Deaf community. For the more advanced and/or native and/or ASL fluent; we have a comfortable place to share & hang out online!
I just wanted to bring your attention to this insightful article. If one stops to persue the state laws on the books regarding PDMPs (prescription drug monitoring programs), there is an abundance of fascinating language buried in our very own state statutes. These…
— Read on medium.com/@heatherzamm/the-true-motivation-behind-the-opioid-crisis-profit-off-pdmps-and-profiling-private-data-theft-4b0ffb10e9d3
Gosh, to think of all the positive blog stories that I’ve posted. That’s how I met most of you. Through my perseverance and positivity. But lately, I’ve had lots of “downers” & I apologize. I do apologize …but not before another “not so upbeat” post. So remember how I was trying to be there for my dad? He recently was inpatient at hospital & he had to have the “Rapid response” revive him twice at age 88. I went even though I was told by him & my brothers, not to come. Well then, I was given times that I was supposed to go because that would help everyone else. Because I’m a high impact pain patient, I’m up at night. That doesn’t mean I’m out at night doing stuff. That means, I’m at home in my PJ’s unable to sleep due to pain issues. But the entire 12 days before my major surgery, I spent with my dad and going when I was told to go and even when I wasn’t.
When he got put on dialysis, Craig & I showed up. I was told by my brother that it would be “all day or at minimum 4 hours so we couldn’t see him” (& supposedly they couldn’t see him either). So I called their bluff & said “well we will just wait. We can wait 4 hours here with you!” Ahhh but then he says 5 minutes later “we can go in after the dialysis nurse gets things started actually in about 1/2 hour”. Hmmmmmm??? A far cry from 4 hours or more. We stayed & said nothing. I even went to see my dad the night prior to the day before my surgery.
I was texted the day before my major surgery, by my brother who asked if I was coming up in the evening (to relieve him, I’m sure bcz he was leaving)… or “when was I coming?” That day I said I couldn’t come because I had to do some stuff for myself before the surgery. I’ve not heard from anyone since then.
I’ve texted my dad daily. But not once has it been about me. Never has been…never will be. But my brother called Craig once & said he was on his way to see my dad… told Craig about my dad & asked about my surgery for a moment in the end.
(Side story:**My dad told me that my middle brother (who I don’t see, for many good reasons & haven’t for almost 17 years)told him that he “doesn’t & hasn’t prayed for me for all of these years but he will pray for my surgery “for my dads sake”… WTH?? He pretends to be a priest! He buys all of the stuff online & even bought a certificate that says he’s a “bishop”… he has a fake chapel that when you go to Google Earth, it sends you to his house!! If you go to his website you see that people send him money as “donating to his church”! There aren’t even any real services held. One lady online wrote on his website, “me thinks he’s a fake”! Well me thinks so too! I stay far away from him and I have always and since I took several PPO’s out against him. (The Domestic Violence Shelter helped me!)
My dad is at cardiac rehab now & he’s actually getting better. But it really hurts that my family has not cared about me & they continue to say “we’re always here for you!” My dad continues this fairy tale “that if ever I needed any of them, they’d be there for me “even with our differences”!
Well, I’ll tell you…. they’ve not been there & haven’t been since I was a child. Once when I called my big brother, after I was in a catastrophic car accident. I suffered a TBI & his phone number was the only one in my head. I even hit myself in the face by accident with the telephone, in trying to call him because I felt in pain & afraid. He answered the phone with “Oh…you need someone ?…”. CLICK & the phone went dead! He hung up on me! I suffered 3 years of brain injury rehab. I’ve gone through 10 surgeries now! They tried to turn my daughters against me when they were teenagers also! They were not ever, nor have they been there for me at all! They’ve only tried to hurt me more & “kick me when I was down”. Luckily, the love, protection and bond that my daughters, my husband and I had/have, pulled us through! We are as close or closer than ever! They are older now, with families of their own. They look back & now understand & see what truly happened. Having children of their own, they can’t fathom what happened to me! They don’t really see or talk to any of my biological family. But when my dad was dying, I got them to come & to make a FaceTime call.
Now that my Dads in cardiac rehab, he /they are back to their same horrible treatment of me. They’d still throw me face down in a mud puddle, in the middle of a busy street during rush hour; if it would give them my daughters and grandchildren.
Another thing that I can’t fathom is the way my dad & brothers have treated my dads girlfriend/live in partner of 12 years. She treated me absolutely abhorrently when I introduced myself to her the first time, years ago. Again, another “victim” who only knew one side of their story.
But guess who was nice to her? Guess who was concerned about her feelings when my dad & brothers refused her entrance to see my dad while he was inpatient & dying. She texted me until the wee hours of the mornings. I was kind to her & told her she should go visit him anyways. She is my dads “creature” too, unfortunately. She stayed away & barely got any information from my brother. She asked me to help her to get a pill reminder because my dad did all of that for her. He infantilized her as he’s tried to do to me. I cared about her & promised her that no matter what happened; Craig & I would visit her & try to be there for her as much as possible. Guess who I never heard from before or after my recent major surgery?? I’ve not heard from any of them! I’ve sent texts for 3 days in a row & never have received a response from my dad. Yet my daughter texted him while she was visiting us with our granddaughters yesterday. He texted her back right away & asked if he could call her? She said she was at my house & he could call anytime.
I had to fight in order to be included as one of my fathers 3 adult children. They said I was “too frail & too weak to come visit because I might cry & hence, make my dad cry”! Oh My Gosh! I’m stronger than any of them put together! I’ve been through a hundred times more pain and abuse than any of them! I told them they were not going to shut me out again, like they did when my mom died. I am strong! I told my dad that he has 3 children, not 2! My oldest brother pretty much gave up a life of his own in order to be “the honored one”. He does everything for my dad and we’ve been shut out for years.
Only when my dad thought he was dying did he say nice things to me. He told me (after I put my foot down & insisted that I was visiting him in the hospital) that “it was a treasure to have me there every day”! He said I was a “dear, dear, sweet person & he loved me”! I cried & couldn’t believe those words were said to me.
I’m 10 days post-op and I’ve barely been out of our home. I cannot visit him right now. But as I’ve said, I texted 3 days in a row with zero response. The 1st day I did get a quick response when I tried to tell my dad (who was discharged & on his way to cardiac rehab) that my surgery was over & it hurts quite a lot. I sent a couple of pictures. But the response I got was unfathomable. He told me “it looked like a nice, neat job” (*pictures above & below)! Even though I actually looked like I’d gotten beat up or walked through a war zone! He then told me about his bathroom issue of the day.
None of them called or have cared about me at all! My older brother called Craig once after surgery & that was because my dad wanted to know if I made it or not, I guess? Then he told Craig about my dad (as I was being put into the recovery room).
I’ve had 2 pacemakers placed and 8 other surgeries in the past 17 years. I live with systemic RSD/CRPS. They don’t even know what that is & never have cared to ask or see any of my special needs. But my dad got a pacemaker 6-7 months ago at age 88. They made such a huge deal about it! I tried to explain that I’m on my 2nd one and got my 1st at age 40! I told them that “it’s not so bad”! They were indignant & furious that I didn’t see that him getting a pacemaker was the end of the world as we know it!! I never got one ounce of empathy, love or even a phone call after any of my surgeries nor either of my pacemaker surgery’s.
It’s a horrible rollercoaster. I stop seeing & talking to them for months at a time. Then I get phone calls asking me why I’m not calling my father? I’m so tired of being treated like the scum under the sink! My dads managed to turn all but 1 or 2 of my cousins against me & all of my aunts & Uncles. The one Aunt who never judged me and somehow saw through the charade, died a year or so ago. I have a couple of cousins who know, saw & understand the truth. One of the 3, passed away last week.
I had a favorite aunt once, she used to put food into my pockets when I’d leave after visiting her house as a kid. She has stuck by my dad & his stories. I asked my dad earlier this year if he’d told that particular Aunt, that we we’d been meeting for dinner the past few years and had been chatting etc? He told me “she doesn’t care about you she has no use for you“!
I dared to speak the “family secrets”. I dared to get help and be a real & separate person. To make a healthier & better life for my husband, my daughters & myself. It’s been hell and I’ve tried to keep kindness, hope & empathy in my heart; & God in my soul.
So all in all, I almost lost my dad this month. Regardless of how I’ve been treated, he’s still my dad & we only have one dad. I also underwent a major & very painful surgery 10 days ago. A tumor was removed from my middle ear. The surgeon drilled into my skull and mastoid bone. Ten days later, I’m still suffering with a lot of pain & fatigue. Once again, I feel totally ostracized & uncared about by my biological family. There’s only one person whose been by my side for the past 23 years & that person is my husband & soul-mate, Craig. We’ve been by each other’s side through so much and I thank God for him every day.
A not-so-crazy couple with 15 cats
a voice for many
A Charitable Trust trying to raise awareness in India about various chronic pain conditions and chronic illness which are usually invisible to naked eyes.