I love American Sign Language 🤟🏼 ! I am a part of the culture and I’ve been since I was 11 years old! I was mildly hard of hearing due to many ruptured eardrums, untreated. (long story-see private posts and just email me for the password. Email me at: ASLSuzyQ@gmail.com)
Hearing or loss of it, is not a handicap and neither is it a weakness or a disability. Deafness is a cultural identity. I have had a tumor (Cholesteatoma) in my right ear since approximately 2014-2015. I didn’t know it was there. My hearing diminished even more until it was completely gone in right ear and moderate/severe loss in left ear. I recently had surgery to remove the Cholesteatoma, but it was very large & now (7-2019), my right ear is closed. But I became moderate Deaf in my right ear and Severe in my left; after a Traumatic brain injury due to a motor vehicle accident in 2002! I am proud to be in a culture of warriors and Deaf historians! The music & words are all a bit mushed together. I miss a lot in verbal conversations. I nod my head and hope for the best. I feel a bit lost sometimes in such instances. I’m so very lucky to know what I do know about the naturally formed language of ASL. I’m fortunate for my experience as an Interpreter at a hospital and at Universities and school settings in the past. Ironic isn’t it, how life can take a turn?
But what does bother me is when people pretend to know ASL, because they know “signs”. The first lesson in ASL is that a sign does not equal a word! A sign equals a concept! I go on YouTube all of the time and I see people acting as though they know the language. They post a song and then post a “tutorial ” and then proceed to teach others incorrect signs and fake ASL; which is PSE at best. But do you know that PSE is not a language? It’s just a mush mash of signs in English word order. So then, you’ve taken a beautiful Language like ASL, and desecrated it! Anyone can do anything they want because it’s the internet. If you want to post songs and such in “Sign Language “, then by all means, feel free. Just write up a bio and explain that you’re just trying or you’re practicing your use of ASL. Say that you’re doing your best or that you are learning the language. But don’t call it ASL, unless it is. Then please do not post a tutorial unless you’re truly sure it’s correct and grammatical ASL. It is just the respectful thing to do. We don’t like our language polluted & then taught incorrectly to others who are vulnerable and learning.
I have a few videos up from the beginning of my YouTube channel that are a bit PSE. When I first started my Youtube channel, I thought I was supposed to sign the songs in English. I thought the words were important for songs. But words are not important. It’s the concepts that are important.
I don’t make tutorials because each person may sign the same song a bit differently. It’s a choice in lots of instances; a choice of which signs for the concepts you want to convey.
Yes, please learn the beautiful language of American Sign Language, ASL! But don’t be arrogant and don’t be a student teaching other students! Let the teachers, native ASL language users, Deaf community & CODA’s teach those who wish to learn! I honestly do not mean to dissuade anyone from making videos and having fun. I only mean to please not make tutorials if you truly don’t know for sure that it’s ASL. Don’t be the “blind leading the blind”! That’s what I’m getting at most of all, I suppose.
Feel free to join my ASLExpress group on Facebook. We are a group of people who love the language of ASL. We enjoy Deaf culture and we share communications and stories in ASL. We are a group of Deaf, HH and Hearing persons who love, use and respect the language. We are a combination of all levels of ASL users; from beginners through native Deaf. We like to teach, learn and make friends.
I also have a page called “ASLSUZYQ”; on Facebook, Instagram, Tiktok & Tumblr! I don’t claim to know it all. I learn new signs everyday! I’m always willing to help and take advice from the Deaf “elders” in ASL! I’m actually taking an online course in ASL gloss for songs. It’s called “Beyond Words” with Rosa Lee Timm! It’s a blast, though due to chronic pain and illnesses, I’m a bit behind. Thanks to the Internet, I can go at my own pace.
Below is my granddaughter &!me (I actually have 3 granddaughters & 1 grandson)! I’m teaching them ASL while they’re small because young minds are like sponges. The littlest ones learn the language so fast!
This is my story for # Why I Sign? Campaign at #whyisign on YouTube, Instagram & Facebook. The CC is right there on YouTube and there’s one right on the video in my Instagram too! The link to my story in Instagram is here: Link to my #WhyISign Video withCC on Instagram and then the link to my #WhyISign story on YouTube (which also has CC for the “Sign Language Impaired” **Lol just teasing) is just below this paragraph. Thank you for stopping by to find out my story and the reasons “Why I Sign”!!
One day during the Summer of 2002, the sun was shining and my husband and I were walking hand in hand, sipping lemonade at an outdoor Art Fair. We were enjoying the warm air and each other’s company as we walked hand in hand. Afterwards, we’d decided to go into town for dinner because our two teenage daughters were busy with friends for the day.
We were driving on our way to dinner when suddenly, I heard my husband shout out “OH NO!” I looked and saw a car coming straight at us. Instinctively, I pulled my legs up to my chin into the fetal position and screamed. What happened afterwards is a blur, but I do remember hearing a very loud noise upon impact and then the smell of smoke. Next, there was only a dead silence. I remember wondering if we were dead for about a nano second. Suddenly everything went dark and silent. That’s all I remember about that day, except short little pictures in my mind of the ambulance ride, hospital & ER..
Once I was admitted to the hospital, I do recall being very upset because I could not walk. No one would come to help me when I tried to call for the nurses. It was hard to use the “nurse call” button because my rotator cuffs were torn in both shoulders. Both of my knees had torn Meniscus’ and I had a ruptured Biceps tendon. There were just too many injuries and then the multiple surgeries that followed for many years. I have Degenerative Disc Disease and suffered multiple herniated and bulging discs at C4/5/6 and L4-5/S-1 with Radiculopathy. I had an MRI which showed that I was most likely born with Arnold Chiari Malformation I. It must have been “sleeping” all of those years, the Dr.’s told me. They explained that between the severe whiplash from that MVA & a whiplash that I suffered from a previous car accident; my Chiari had been awakened. I could not hold my head up at all. The pain was horrible and intense. My husband says that when they were doing my X-rays back in the ER; I was screaming because it was so painful. He said that I was crying out so loudly, that people standing in the hallway left; because they could not handle listening to the painful screams. I mostly remember my back and neck hurting so badly that I could think of nothing else.
My husband also told me that he kept trying to tell the Dr.’s that “something was not right” about me. He thought that I was acting very different from my “normal” personality. He said that when he told them I was acting “not myself”, they sent up a Psych consult. Then they told him that “I couldn’t handle the pain because of the abuse I suffered growing up and in my past marriage”. He didn’t know what to say although he knew that could not be true because I hadn’t been “different” just before the accident? After only 5 days in the hospital, and after their lack of being proactive to help me with my pain and injuries; my husband signed me out against medical advice. He took me to the Neurologist who had known me for 3 years at that point.
The Neurologist really got the “ball rolling” and had me tested for anything and everything that could have been wrong. At that point I was in a wheelchair, could not hold my head up and needed a yardstick behind my head/neck with a pillow on it. My husband rigged up a way to help me have something to rest my head upon. I could not dress myself, go to the bathroom alone or even cut my own food.
We finally found out what was truly wrong. Our questions were answered when I was diagnosed with a TBI or “Traumatic Brain Injury”. I went through 6 months of intense PT, OT and speech therapy. After that, I was in Physical therapy for 8 more years and brain injury rehabilitation for 3 full years. The brain injury rehabilitation was done after I’d done poorly on the Neuro-psych testing. Over the next 3 years, I was in a brain injury rehabilitation program. I was there Mondays through Fridays from 9:00 am until 3:00 pm. I had to have a driving company take me to and from the rehab center daily because I was unable to drive due to pain and nerve injuries.
I could not comprehend what I was reading and had a hard time finding the right words to use while speaking. I was more than forgetful and couldn’t remember my phone number, social security number or my own address. The tests showed that my short term memory was terribly low. I went to speech therapy, Physical and occupational therapy and had to re-learn how to drive via Drivers Rehab training. I did pass in the end, but can only drive a few miles for personal errands. They told me they were afraid that I might get someplace and not be able to find my car in the parking lot. Also, the nerve injuries in my legs, knees, lower back and neck; make driving terribly difficult and fatiguing.
It was and is very frustrating to go from graduating with honors and having a “photographic memory” to not be able to read a full book any longer. I had read the first 4 “Harry Potter” books and was in the middle of the 5th book, when the accident happened. I still cannot and have not been able to finish the rest of the books in that series. Whenever I’ve tried to read any books since that time; I end up reading, reading again and then re-reading. Every time I put the book down and then try to return to pick up where I had left off; I cannot remember most of what happened before that point. I’ve tried audio books and it is just the same. I try to listen and whenever I stop and try to go back to it; I’ve forgotten the whole beginning again. This brain injury has changed my life because I have issues with: double vision, severe dry eye, incomplete blinks, prisms in my glasses and continued worsening lowered vision. I have a moderate hearing loss and have 2 hearing aids now; when ironically, I was an Interpreter for the Deaf before that car accident. I worked at a major University hospital, Interpreting for Deaf patients and also at a school for the Deaf with Deaf children. My life was and is changed forever because someone was distracted and then ran through a red light. My husband’s life and the lives of my daughters were also changed forever in the blink of an eye. I had been a very involved mother who cooked, cleaned, did laundry and drove a mini van full of teenagers. I still made sure that I went in my wheelchair to every swim meet and dance competition. I didn’t want them to think my love or support for them had changed in any way.
I wanted to mention that I still have bad migraines, usually they are “Chiari” migraines. I have balance issues and my personality changed in that I get very emotional now, when I wasn’t like that before the TBI. I also have a hard time making decisions; along with having the same issues that I’ve had since the MVA. If you have had a closed head injury, a TBI or an MTBI, please contact Brain Injury Association for information.
Back in 1999, I left my career as an Interpreter for the Deaf and had to go on disability. I was approved first attempt and that doesn’t happen often. When I was set to go to the appointment with the physicians from the SSDI, they called the day prior to my appointment and spoke to my husband. They told him that they received my team of physician’s reports. They let him know that I did not have to attend that appointment because they said “Suzanne is the worst case of childhood trauma/abuse that we’ve seen in the past 36 years. We don’t want her to have to tell her story to even one more person.” I was approved and then things got medically worse from there. In 2002, I was in the car with my husband, on our way to have a little dinner out alone together & a man ran through a red light. Within seconds, our lives changed forever!
I was unconscious for about 20 – 30 minutes, I am told. I awakened a couple of times in the ambulance and again at the hospital. But I have no other memories of that day except for extreme pain and hearing my own screams during the X-ray exams. I was really lucky that my husband was unhurt and that the kids were not in the car. I spent the next 3 years in daily brain injury rehabilitation. Also, I spent the following 8 1/2 years in Physical and Occupational Therapy along with going through approximately 8 or 9 surgeries. I had knee surgeries, open shoulder surgery including 2 screws in my left shoulder, 2 torn rotator cuffs and then Adhesive Capsulitis. There were mouth, jaw and left facial surgeries, along with 2 pacemakers and total pectoral reconstruction. I endured many hours of MRI’s and other more invasive tests. After the pacemaker, I had to undergo the painful, barbaric and old CT Arthrograms in both shoulders and both of my knees. I can no longer have an MRI due to the pacemaker. As far as aids for daily living, I ended up with 2 AFO’s (ankle foot orthotic braces for foot drop), a shoulder brace (for nerve damage, pain & winged scapula) for very painful Long Thoracic Nerve Neuropathy, wrist brace (R), 2 forearm/hand/wrist braces for night time, a wheelchair, seated walker, motorized scooter, forearm crutches and a cane. All of which are still used today intermittently, depending on the activity.
In 2003, I got a pacemaker because I’d been fainting constantly. I was found to have a heart issue called “Sick Sinus Node Syndrome”, along with Dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome) and Prinzmetal Angina. Later in 2005, I had a heart attack. They found it to be a very real heart attack, but it was caused from something called “Broken heart Syndrome”. For this I won’t go into details, but I was also diagnosed with Atrial Fibrillation and was put on blood thinners. Then in 2006, I suffered a CVA or a stroke due to the A-fib. I was put on a higher dosage of the blood thinners. Then in 2007, I had right foot surgery and came out with worse pain than before I went in. I was told that I had RSD/CRPS or “Complex Regional Pain Syndrome” in my right foot at my 6 week, post-op check up. I couldn’t believe it! After I read up on the disease, I decided to get a second opinion. The foot/ankle Orthopedic Dr. agreed with that diagnosis and he sent me directly back to the pain clinic. I had first gone to the pain clinic for: cervical and lumbar herniated/bulging discs, Degenerative Disc disease, Scoliosis, Long Thoracic Nerve Neuropathy, PolyNeuropathy In Collagen Vascular disease (*which is really the same as EDS type IV-Vascular) & Chiari I etc.,right after that car accident. I went through epidural nerve blocks, trigger point injections and much more. The pain clinic saw me for those first several years but later turned me over to my G.P., because I was a patient with true high pain issues but not a candidate for an SCS (spinal cord stimulator) or an intrathecal pain pump because it was determined that I have C.I.D. or “Combined Immune Deficiency Disease”. I can contract an infection in my spine more easily than the average person and/or become paralyzed. I was put on pain medication that I had tried to refuse several times; because I was afraid of it at first. Sometimes we are afraid of the unknown and I’d never had pain medication prior to that time except for during my C-Sections. I received a letter from the pain clinic’s, Pain Psychologist, stating that “I do not have an addictive personality”. I took the pain medications and after many many attempts with bad side effects, swelling, vomiting, fainting etc.; we finally found some pain medication that helps me and it lowers my chronic & CRPS pain.
Luckily, the auto insurance paid for drivers to take me to and from the TBI rehab and all of my numerous medical appointments. I suffered a Traumatic Brain Injury and had to endure several of those long Neuro-Psych testing sessions for years. They always ended with the same comments, which were: “short term memory is in the toilet, problem solving difficulties, emotional difficulties (because I cry more easily), concentration is very low “, and more. Nothing has improved very much, in those areas since that time. As far as the TBI goes; I’ve just learned to live with it and adapt. At the time of the car accident, I was in the middle of reading the 5th “Harry Potter” book. I could not & cannot read those books any longer. When I put down a book and go back to start reading it again; I find that I’ve forgotten everything I had already read. I do best with articles and short stories now and that’s just how it is and how I’ve had to adapt. The TBI or Brain Injury Rehabilitation center did not cure me, but did teach me how to adapt and live with my brain injury. Nobody who meets me can tell that anything like that is wrong with me. But the persons around me often or those who live with me can clearly see the differences from before the MVA and now. I cannot remember movies and can see the same movie several times. If you tell me something today, I won’t remember it next week and probably not tomorrow. I cannot remember anything short term, unless I write it down. I don’t remember appointments or some other information that I’m told. I feel very bad when I meet new friends, especially online “friends”. When people have similar names, I get confused and feel embarrassed. They’ll say “remember me, from —?” But I truly don’t and I feel so bad. But if I feel comfortable, I just tell them about my TBI and ask for clarification. It’s sad because even new physicians will say “Well, at least you look good”! Or they’ll put on their report that “patient doesn’t look sickly”. What a stupid thing to put on a Dr.’s report! I have recently been diagnosed with Gastroparesis and you can’t see it! Suppose a person has a heart &/or lung condition, you would not “SEE” that and they might appear to be “not sickly”. It is what’s happening on the inside, that is important.
The brain injury has caused several of my medical problems/issues as well. I was evidently born with “Arnold Chiari Malformation I” because they found it on the MRI’s s/p the MVA. But it was “sleeping”, they told me; and after the accident, it was “awakened”. Since then, it’s been difficult to hold my head up for long periods of time without pain and weakness. I get something called “Chiari Migraines” in back of my head and neck; which are very painful and cause nausea and at times vomiting. I also have eye/vision problems due to the TBI, including: a Convergence Insufficiency, lowered vision, extreme dry eyes and Nystagmus. The Convergence Insufficiency means that my eyes won’t work together as a team and get fatigued easily. The other issues are self explanatory, except the Nystagmus. It means that my eyes sometimes shake a bit, when looking to the right, left, upwards and downwards without moving my head. I’ve had punctal plugs put in my eyes several times and had prisms in my glasses s/p the MVA for a couple of years.
I went to University and graduated with honors in Sign Language Studies/Interpreting. I worked for a local school district’s Deaf/HoH program and at a Major University hospital as an Interpreter for the Deaf; prior to my TBI & other injuiries. I went from being an Interpreter for the Deaf, to a Hard of Hearing person with 2 hearing aids. Prior to the TBI, I remembered phone numbers and other data. Now I depend on my smart phone, using: Google, reminders, Notepad and “Siri” on a daily basis, along with the Calendar features.
I try to be a person who uses “Hope” as a verb. That is my slogan, as I’d said in one of my other articles. You must “do” something in order to help yourself “Keep Hope Alive”. This is a venue for me to hopefully help as many other chronic pain patients as possible. I try to be as positive as I’m able to be. But on any given day, I can feel negativity creep in as some of you do. I know we can all have that happen. It’s what we do with that negativity that matters. We can lash out at others like my ill mother did. Or we can take the negative thoughts and throw them out the window as far away from us as possible!! Sure, there are those darker days, but like a Phoenix, we must rise up against this monster called “Chronic Pain”.
We all lose hope at some point in our lifetime or another. We get sad and start feeling hopeless when too many things happen all at once; that we consider to be “bad”, hurtful or depressing. We may start to feel overwhelmed and this causes some of us to lose hope. Sometimes it is the way we feel inside because of something or some “things” that others have said or done to us or said about us. Certain words or situations might hurt our feelings or even our ego possibly? The holidays seem to bring about an overabundance of feelings, situations and even hopelessness. At a time when Charles Dickens’ ghosts would be telling us that we need to learn from our past, live in the present and look forward to our futures. It’s not as easy as it seems. Even the Hallmark Christmas stories, have characters who, by the end of the story, are healthy, happy and hopeful. Those of us living with daily chronic pain are not immune to the difficult, hopeless feeling situations that actually multiply for us during the holidays. You see, we get these feelings on top of debilitating pain and most often, that brings with it, several illnesses and disabilities.
You might say to yourself, “What is she talking about? Why is she writing such a “downer” as this, during what most see as a happy time of year?” I’ll tell you what I’m talking about. It is this 4 letter word “HOPE”. It can be anything you make it, if you just think about it for a moment. People want “HOPE” to be brought to them. They want it as a “gift” from God. Some others think of it as a noun or a “thing” that we are entitled to. But in my lifetime I have come to love this sometimes mysterious 4 letter word. It intrigues me so much that I wear it on a chain around my neck. I have worn HOPE around my neck for years and years. It is my favorite of all words. I always thought that I’d get out of a bad situation if I just had “Hope”. Things will get better if I just keep “hoping”. I always thought that if I continue to wear my “Hope” necklace, then one day I will have “HOPE”; the noun, the “thing” that others seem to have.
But I did not “get” HOPE because you cannot wait for it, for the noun or the “thing” to come to you. I have learned that “HOPE” is a verb. A verb is an “action” word. I have found that HOPE is also an action word and you have to DO something in order to have and keep HOPE! If you keep waiting for it to come to you, that is when you will lose it. For example; as a chronic pain patient, in order to find a good Dr., one whom you trust and respect; you must continue to look. You can’t sit back and “HOPE” that others will find the Dr. for you. You must do the work of looking, hunting on the internet and reading the different reviews about many many physicians. You might have to do the tedious work of going to 3, 4 or even 5 different Dr’s before you find the right “fit” for you. But after you do the actions, then you can receive the “HOPE”. It will be rewarding to actively do the “work” or the job of looking for and getting what you want or need for yourself. Along with this comes the feeling of accomplishment and when you put those things together, you will feel more secure, happy and hopeful. See how it works? If you choose to do nothing, feel sorry for yourself most of the time, and let others do it all for you; then there cannot be much HOPE. If you try your best and keep making the end goal of having and keeping HOPE; making it a verb and doing the actions; I think you will be surprised at how much better you feel inside.I’m not saying that you can never feel sad, loss or grief. It is OK to feel sad sometimes, as long as you can get yourself back in time, before the loss of hope comes.
I have an example for you, and it just happened to me during these past few weeks. I was feeling sorry for myself and a bit hopeless. Silly as it seems, I had taken off my “HOPE” necklace and everything just appeared to be a bit bleak. I was experiencing higher pain levels because we live in Michigan and it’s been so very cold. I don’t like going out much or at all during this part of the year because of the higher pain levels along with extreme cold. But I do want to go out, because this is my favorite season of helping others, HOPEfulness and cheer. I love the lights, the music and the Christmas trees. I usually feel happier even when staying inside with my cat in my warm, cozy chair. I enjoy drinking something hot and watching the overly dramatic Christmas movies. But these past few weeks I had been feeling down and a bit hopeless. I was feeling that I was trying even when I didn’t feel good enough to try anymore. I continued “doing” when I didn’t feel well enough to do the things that I just wanted to do. But I was adamant about doing those things anyways. I realized that you must stop and take a time out, when you need one. It’s OK to be sad for awhile, but just when you feel that HOPE is lost, that is when you are keeping it as a noun and something that is given to you. But things will turn around when you remember to keep HOPE as a verb. Keep it as an action word and one in which you have to do something in order to have it. When you make HOPE a verb,something always happens to change the negative feelings in your life.
Just when my HOPE was draining, I received a large envelope in the mail. Inside was a blue folder with the seal of Michigan on it. When I opened it, I started to cry and I was ecstatic. What I held in my hands was a “Special Tribute” from the Michigan House of Representatives and from the Governor, Rick Snyder! I’ll Post a photo of the “Special Tribute” here so that you can read it. I have been rewarded when I have never asked for any rewards. I received a special tribute for the advocacy work that I do and my “compassion for others”. I don’t have any idea where it originated? I know who signed it and sent it to me; but what, how, why me? All I know is that I was feeling down and tired of constant pain, even though my pain is somewhat controlled. I was losing HOPE because I was waiting for someone to give it to me. I had to remember again, that it is an action of “doing something”. Though I did receive something in the mail that truly cheered up my spirits. In the end, I did something to make it happen.
Don’t lose hope because it’s not something you can “hold or touch”; it’s something that you “DO” or “act upon”. My hero was an Advocate, Helen Keller. She was blind and Deaf, but she never gave up. She was tenacious and I strive to be like her. Especially in that I’d gone to University to be an Interpreter for the Deaf and blind. I worked at a major Hospital as an Interpreter and at magnet schools for hearing impaired children. Then, in 2002, my car was hit by a man who ran through a red light. I won’t go into the multiple injuries and surgeries. But I will tell you how ironic it was/is that I am fluent in American Sign Language. Deaf culture & ASL have always been something that I love. As a result of the car accident, I also suffered a “Traumatic Brain Injury”. Part of that includes hearing loss and vision issues. I have a convergence insufficiency, chronic dry eye, my own hearing aids and prescription eye drops that I must use on a daily basis in order to keep from going blind.
Whenever I feel that I’m losing HOPE, I remember all that I have been through and all that I still CAN do. I try to remember to never stop doing the actions that keep my HOPE alive. Lack of action makes hope die and that is when I remember what my “hero”, Helen Keller, once said: “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”
I am an Interpreter for the Deaf, that’s what I went to a 4 year university to become! I worked at the University of Michigan hospitals as a secretarial “float”. I was paged whenever a Deaf person came into the clinics, hospital or E.R. and I would go to them to aid communication between the Doctor and patient.
Then in 1998 my *(see below)*abusive family got worse when I confronted them! Depression and anxiety set in, although, I finally felt safe with my new husband. I started having Flashbacks and nightmares. I was granted SSDI for CKDII,& PTSD (Chronic Kidney Disease stage II and Post Traumatic Stress Disorder). I was going to try and go back to work in Fall of 2002, but that plan changed abruptly on Aug 11th, 2002. A man arguing with his wife, ran through a red light and totaled our van and my body! I suffered: an MTBI *(mild traumatic brain injury) & 3 yrs of TBI *(traumatic brain injury) rehabilitation. I was horribly injured and in so much pain! I had been knocked unconscious for about 20-30 minutes. I was hurt in so many places and weighing only 90 lbs didn’t help me at all! Both of my knees and both of my shoulders were torn. My right biceps tendon tore right off of the bone on my right side. My right ankle and my right foot were injured. My ears suffered nerve hearing loss (*I now have 2 hearing aids) and my eyes suffered some nerve damage as well. Many lower back & neck disks were/are herniated, ruptured and bulging. As time went on I ended up with two frozen shoulders. I went through 8 yrs of Physical therapy, 3 yrs of TBI rehab, and underwent 9 surgeries; including 2 screws in my left shoulder and an intramuscular pacemaker, twice in 10 years now. My first one was placed inside of my pectoral muscle because of its vulnerability inside of my chest at such a low weight. But 10 yrs later they did plastic surgery to rebuild my pectoral muscle because the pacemaker had worn right through the muscle wall!
Sadly, in 2004, my 18 yr old daughter left home because of reasons I won’t write here. My heart was literally broken! I had a heart attack one week after Mother’s Day, in 2005. The cardiologist said that I was “his first case of “Broken Heart Syndrome“…my daughters were my life and I raised them 98% on my own! I had left my ex-husband, the father of my two girls, after an 8 year abusive marriage, in which he also cheated on me several times. He was an abusive Sheriff’s Deputy who was fired for “hurting another girl besides me!” He was given a jury trial and found “Guilty” of “Obscene conduct” and “Indecent exposure” (which were truly lesser charges than what actually happened!) . His punishment ended up being that he can never be in law enforcement again. He also couldn’t see our two daughters, then 31/2 & 6 years old, without a supervisor approved by the court. He was abusive towards me and to our Rottweiler, ‘Bully boy”. He pushed down our then 3 year old little girl, because she “wasn’t hurrying fast enough”. He pounded my oldest daughter on the top of her head when she was in tears over him kicking our family dog in the head and neck, as she cried “daddy don’t hurt Bully Boy”! While hitting her on top of her head, he said “I’m the dad and I can do whatever I want”!! He left his service revolver out on top of the window sill and on the back of the toilet seat! When my youngest was 2 years old, she brought it to me saying “Mommy, what is this for?” Needless to say, they took his guns away from him and he was punished after that incident and then swearing to “shoot all of us and himself!” There’s so much more…too much to write here except for one thing that sticks out in my mind so sharply. During the time when my ex-husband could still see our girls, before he was convicted and found “Guilty” and only allowed supervised visitation; he had taken them for the weekend. They came home and told me that “daddy had a girl in his bed”. They told me that my youngest who was then 3 years old, had vomited in the bed that they shared in the apartment he lived in, that was attached to his parents house. Our oldest, who was just 5 1/2 yrs old, went upstairs crying to him and knocking on his bedroom door. She was crying and saying that her little sister had thrown up in their bed. He told her to “shut up and leave him alone”! She was 5 years old and had to try to take care of her sick 3-year-old sister, while trying to clean up vomit on her sister and the bed ! Needless to say, that was their last visit with him unsupervised. We had to go to the Domestic violence shelter and we had interviews with Child and Family Services. They sided with me and recommended “supervised visitation and anger management classes”. The judge agreed with their recommendation. He was embarrassed and angry, therefore he moved 1,000 miles away barely ever seeing his daughters. He was angry and wanted “revenge” on me for “taking away his kids”. I did not do that though; he did it to himself and then the judge ordered it!
I was never ordered to do anything but I still sent him photos, invited him to public school and other events in their lives and his parents as well. I took the girls to visit his parents who lived about an hour from us, here in Michigan at least once every month and each Christmas day they went to see them from noon until 7:00pm! I even drove them to and from their home which was an hours drive from our apartment.
Later, in 2006, after my heart attack, I acquired “Atrial Fibrillation” *(Atrial fibrillation is when the heart muscle quivers and shakes, spitting out little blood balls or clots which can cause strokes) and therefore ended up suffering a CVA *(cerebellar Vascular accident) or “stroke” from the A-Fib! I had already been on blood thinners but apparently I needed a bigger dose! It’s been since 2004, & my oldest daughter has never wanted to see me or speak to me. In 2007, I texted her and said “I Love you and I’m thinking about you.” She called me back and asked me to meet her and we did. We met twice and had lunch, but it did not work out very well. Another time she texted my cell phone and it was 2008 or so….she texted “Suzanne, why do you think people care about you? THEY DON’T!!”….I fell apart once again.
I recently had my 9th surgery this year in February 2013….a new pacemaker and a rebuild of my Pectoral muscle! Then on August,the 5th, 2013, I’ll be having my 10th surgery, oral surgery! I found out that my oldest daughter got married in Oct, 2009 and to the same boy she wanted to sleepover night with while still in High school. That was the episode that led up to her leaving home, because I said “No” (that she could not have my permission to sleep over at a boy’s house while still in High School)! I also found out that I am a Grandmother to a little girl born in Nov -2012! Her name is Olivia, and as of this month (July 2013), she is now almost 7 months old. Again….still…I am heart-broken! All that I’ve ever wanted is to be a Momma & a Grandmother! I was/am a good mom..my ex-husband ran away “to find himself” ! But I’m the one who stayed and raised our daughters alone.
I’ve lost so much…but I thank God every day for what I do have : my youngest daughter, now 241/2 & living in her own appt. since August 2012!!! She graduated last Summer (’12),with her Master’s degree in”Library & Information Sciences”. She has her own apartment. She also has a wonderful Academic Librarian job with a tenure track etc. I have had the most wonderful husband, for the past 16 years! He’s the love of my life and my soul-mate!! He has been an elementary school teacher for 35 years and he is the best teacher and the best husband ever!
This is my story..PTSD that continues and never seems to end because my father and brothers still treat me in an abusive manner. Add that I’m in chronic intractable pain 24/7 since that MVA in 2002! I acquired “full body” RSD/CRPS a painful progressive Neuro-autoimmune disease, which causes burning nerve pain similar to the feeling of being “on fire”! I have OA and 2 Rheumatologist’s have said that I have RA *(one of them gave me an injection kit for “Humira” and wanted me to start taking injections. Luckily I didn’t ever start taking them because I found out that I have an IGA deficiency and that RSD/CRPS is an autoimmune disease, therefore that medication could have made me much worse off!), but my PCP and I aren’t quite sure, or really don’t think so at this point! I have Myofascial Pain syndrome, Fibromyalgia (which I’ve denied for several years, but am finally coming to terms with it). I have Dysautonomia which is my Autonomic nervous system dysfunction or failure. It means that all of those body systems and things that our bodies do without thinking about it, don’t work for me. This includes: body temperature, respiration, blood pressure, digestion, sleep disturbances, memory problems, heart arrythmia’s and more. My brain stopped telling my heart what to do, which is part of it also and one of the reasons for me needing a pacemaker! I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neuro-Cardiogenic Syncope), CKDII (chronic kidney disease stage II, due to tubular interstitial nephritis), Hypogammaglobulinemia ( an Immune deficiency), Sick Sinus Syndrome, Coronary Spasms, Atrial Fibrillation, MVP, TVP, (Mitral valve prolapse /tricuspid valve prolapse), Chondromalacia Patella and Patella Femoral pain syndrome, Asthma and other diagnosis’ but just too much to keep writing for now.
All I pray for daily is that my oldest daughter will come back to me and to us. I pray that one day I will get to hold and see my granddaughter, because I already love her! I am blessed with a wonderful and loving husband. Also, I have God who is my Lord and Savior and it’s because of his love that I can never give up.
**(from above…In another post, I will explain more about my life and growing up in an abusive and highly Narcissistic/abusive home, where I was starved, poisoned, weighed weekly and given punishment/reward dependent upon my weight. I was also abused in just about every possible way by almost everyone who was supposed to love me; and those who I was supposed to be able to trust!)