* This is a whinge-bag letter. Much of it is in different pieces already. Much of it isn’t.
To Whom it May Concern:
All my life I remember pain and struggle. I have not had a close family member die. I have not suffered an unimaginable trauma. I have not struggled for years with a fatal condition. I live in the ‘free’ world – although it seems quite expensive to me. I have not lived through a war. I have not lived with an abusive husband. I have three children, who for the most part are healthy.
And yet I think of pain when I think of me. Physical, emotional, and mental. I obviously don’t remember the agony of broken wrists when I was born. I knew from an early age that I had been born with them, but the pain is only a story to me. I remember all the childhood illnesses that kids born in the 70s had: measles, mumps, chicken pox. I remember having Whooping Cough at age four: the only bit, me nearly throwing up with the forcefulness of the cough. I remember being laughed at and called ‘Bandy Legs’ for the bowed legs I walked with (not very well). Both siblings and peers delighted in the taunt.
I remember being kissed, inappropriately by a ten year old exchange student when I was seven. I thought it was fun. Does that make seven year old me a victim, a slut, or something in between? Does it matter? Did it have any baring on future me? Fucked if I know.
I remember, at age nine, being in the hospital to test for possible reasons for my bandy legs. While there, twelve year old Richard (his real name) put his finger in my vagina. He said that was what big kids did. I don’t think I was traumatized. Maybe I was. I’ve no idea. I certainly didn’t like it the way bad seven year old me liked those incidents. I remember being diagnosed with hypophosphatemia aged nine. It is the condition that led to my shitty legs. My body excretes too much phosphate, which hardens the bones, hence bandy legs from soft bones. I remember being prescribed a phosphate supplement at to take the rest of my life. It was an effervescent tablet, and tasted like crap. It gave me terrible diarrhea, farting, and stained underwear. Just what a kid looks forward too. I remember staying over at a friend’s house, and my mom explaining to the mom, and giving her spare underwear. I was eleven. How embarrassing.
I remember at age eleven being hospitalized because nobody could figure out what was wrong with me. I kept being sick with kidney infections, chest infections, and missing school all the time because of it. In the hospital they discovered I had nephrocalcinosys, which is calcium deposits (not stones) in the kidneys. It is a common side effect of phosphate and vitamin d supplements taken together. They bind calcium in the soft tissue. I remember going to Temple Street Children’s Hospital frequently for urine and blood tests, and ultrasounds of my kidneys to check progression of the nephrocalncinosis. I remember leaving the hospital and a week or two later returning to school. I did three hours a day for the first month. I was always a talkative, yet inquisitive child. On my first day back, my teacher scolded me for talking. He said ‘I think you’ve had enough of a holiday (vacation), Ingrid’. From them on it became my mission to misbehave in school. From that day on until the end of elementary school, one year later, I was out by the wall every day. Bar none.
I remember around that time we were in school, and there was a severe wind storm. Ireland is extremely windy especially in the winter. The Windy City does not know what wind is. A teacher came into our classroom and mentioned something about the roof blowing off the school. A joke of course. I knew that. Everyone knew that. I felt nervous however. I was blown home on my bike, and once inside kept looking at the trees fearfully. Here we are twenty nine years later, and I still have a phobia of the wind. If you don’t have a phobia yourself, or can’t empathize, then don’t bother. It’s not something phobics just get over. It has been crippling over the years. In Chicago, since we rarely get much wind, it has transferred to a phobia of tornados. They rarely (like never) hit the city, but the possibility is there. I am petrified if there is any suggestion of a severe storm. I remember my first summer here, before I knew tornados were a thing in this part of the world (I thought it was all way south of here), I loved thunder storms. The stronger the better. A bit of excitement. Tornados now influence what I do or do not do a lot.
I remember at the age of fifteen losing all my friends. I had been a bully and the tables were turned. I had a very lonely couple of years, and felt like a piece of shit about myself. Life is a bitch. Karma. And all that. Tell that to my fifteen year old self. I had one friend who stood by me, but no one in school. I remember shrinking inside myself mentally, but lashing out more externally. I was always the class clown. The pain in all the teachers’ asses. I ramped that up even more. Who gave a shit? Not me. Why bother?
Towards the end of High School, when I was eighteen, I prepared for The Living Cert. It’s a national exam all high schoolers sit at the end of twelfth grade (sixth year). It determines where you can go to college, and what you can study. I was pretty crappy at school by this stage. Between not giving a shit, and having the attention span of a goldfish, I knew I wasn’t going to be a lawyer or doctor. They are the hardest two courses to get into in Ireland. I didn’t really feel the pressure, because I honestly didn’t care too much. Something must have been going on (subconsciously as they say). A couple of months beforehand, a bunch of us went to extra lessons to prepare. I remember being fine on the train and at lunch time. Every time I went to a class, I would feel the urge to shit. I would leave the class, go or not go, and go back. This would happen many times each class. I ended up not going into the classes after the first day. It was a weeklong set of classes that was expensive. I told my parents. My mom was somewhat understanding. My dad was so mad because I was wasting his money. From then on, every school day felt like this, with my bowels fucked up. I stopped going to school. They loosen up on attendance towards the end of school. They know everyone is stressed. That summer, I remember being up at the shops about a mile from home. I was drinking a can of coke, and suddenly felt the urge to pee. I had to go home. From that day on, I needed to pee (severely) anytime I was not near a bathroom. I started college a couple of months later. It was seven miles from home, so I still lived with my parents. Initially I got the bus to school. After a month, the bladder\psychological issue exploded. I felt unable to get the bus anymore. I was crippled. My dad drove me in most days because he worked right by college. Either he or my mom drove me home. One time sticks out, even though all the days were like this. My sister’s ex lived on the route home from college. I had a dreadful urge to go. I knew it was psychological, but was unable to override the urge, and the fear I would wet myself. My mom suggested we stop in my sister’s ex’s house. I was mortified, so we drove on. About one mile from college, I had to run into a pub to go. Virtually nothing came out. The next four years were awful. I had a miserable college life. No friends, because I couldn’t go out. I gained a ton of weight. I’m sure I was suffering from depression throughout that period.
I had several runs of palpitations over Christmas 1998. Tons of booze, coffee, smoking, and shit food will do that to you alright. I told my Endochronologist about it on my next visit. He detected an innocent murmur, and sent me for an echo: an ultrasound of my heart. It came back as abnormal. At the ripe old age of twenty one, I was diagnosed with heart disease. Yippee. I am rocking the whole shit life thing now. I had calcified aortic and mitral valves. I was told I might need heart surgery in my fifties or sixties. Well thank God for that.
In my fourth year of my degree (fifth in college), I finally made some friends, and plucked up the courage to go out. I was mostly okay when I was drunk. I made sure I got to where I was going somehow, and then got shit-faced enough to go onto the next place if there was one, or wait for a cab home. I was in charge of the yearbook that year, so I ended up getting to know pretty much everyone in the class. Many of them asked me why I hadn’t been going out over the four years. They had hardly known me. Apparently I was quite fun to be around, so they were perplexed by my antisocial behavior up to then. By the end of that year, I was confident enough, and pissed off enough with my ‘condition’, to go to Chicago for a summer. That was the start of having some kind of life.
I moved to Chicago in 2003. I was two weeks off the plane when I started dating someone. Turns out he was an emotional abusing prick. He broke up with me after three months, and stupid me was devastated. For a year after that, any time he called or texted I went running to him. When I look back, I can see what an idiot I was. I have no idea what was going through my head at the time. I ran into him at an A.A. meeting recently, and he still seemed to be a dick, even though he vaguely, maybe, tried to apologize-ish. As I said – dickhead.
In 2004, I fell off a barstool drunk, and broke my wrist. That resulted in 12 weeks unpaid leave. While I was on leave, and still in a cast, I fell while wasted, broke my nose, and gashed my forehead needing stitches. In early 2005, while hungover, and likely still drunk, I cut my hand with a bread knife in work. I had to go to a clinic for stitches and a drug and alcohol test. By some miracle I passed them both.
In 2005 I fell pregnant by my boyfriend – not the douche. He moved in a couple of months later. The month after that, at sixteen weeks pregnant, I was sent for an echo, after I told them about ‘some innocent heart murmur or something’. I had no idea about the valves. I’m not sure I ever did. The exam was on a Thursday. On Saturday, my Primary Care Physician (General Practitioner) called me in the morning. She told me to stop working for the rest of my pregnancy. She said I had severe heart disease. Awesome! Yay me! My care was transferred to a cardiologist specializing in pregnant woman with heart disease, and a high risk obstetric group. During my labor, I was not allowed push, they used forceps. I had an epidural before they induced me. I had a central line inserted into my heart, through the carotid artery in my neck, to measure the internal pressures in the heart. I had to go to the cardiac ward in another hospital (part of the same group of hospitals), for twenty four hours post-delivery. Such a great way to give birth. My daughter was in the NICU for ten days. My hoo-ha was destroy from the forceps, and didn’t feel better until I delivered my son two years later.
My cardiologist wanted to see me three months after the delivery. Apparently the heart and fluid systems take that long to recover. She would decide then whether to refer me to a surgeon or not. A few days before the scheduled appointment, I went into Atrial Flutter alternating with Atrial Fibrillation. With both, the atria (upper chambers of the heart) beat rapidly. With fibrillation, the atria beat chaotically. With flutter the atria still beat rhythmically. I think my heart rate was 180 beats per minute. Anyway. Into the E.D. I went. They kept me in for seven days, and ran a ton of tests. I was the winner of a need for open heart surgery. I was early September. They let me go home to Ireland for my sister’s wedding, on the condition someone flew with me in both directions. I had my now five month old with me. On the outbound leg, I went into A-Fib on the plane. I had no idea what to do. Should I tell an air hostess, and ask her to have the plane land? Thankfully I heard a woman in the row behind me talking about the fact she was a cardiac nurse. Finally some good luck. I accosted her in the line for the bathroom. She said I should be okay, because I was already on blood thinners, but to go to the E.D. once I landed in Dublin if it persisted. Thankfully after a couple of hours it stopped. My mom flew back with us, and she minded the baby, when my husband and I went to my cardiac surgery appointment the next day. I was told I needed my mitral valve replaced.
I had my surgery on November 29, 2006, The surgery was successful, but extremely difficult according to the surgeon. I had multiple complications including a TIA (mini stroke), which gave me temporary blindness, and inability to move or feel the left side of my body. I had a pneumothorax (collapsed lung) shortly afterwards, which needed a chest tube. It was inserted without pain meds, which had been withdrawn due to the TIA. I needed two transfusions of plasma. All around a lovely experience. Recovery sucked. I couldn’t lift my daughter for six to eight weeks. I was often very weepy, which if normal after OHS.
My son was born in 2008. The pregnancy and delivery went well. Immediately afterwards, I became breathless, weak, and dizzy on standing. I was carrying too much fluid. Luckily I was able to be released with him after five days. The night of the day I was released, my right leg puffed up and became red. A sure sign of a clot. I was called back into the hospital, and kept overnight. My leg had gone back to normal, but my blood pressure was extremely high. My systolic pressure (the top number) was 220. I was away from my baby boy his first night home. Pregnancy hormones plus complications plus missing your baby equals bawling crying.
I became a citizen in November 2008. We married that December. We started paperwork to legalize my husband immediately. He was scheduled to go to Mexico for his visa interview at the very end of May, a couple of days before our firstborn’s third birthday. We arranged a big party for her, in our backyard. All friends and neighbors were invited. That was for a Saturday. On the Friday, when I picked her and her brother up from the sitter’s house, Sophia was difficult to rouse. The sitter mentioned she had been like that for a few hours. She actually just said ‘Ladybaby is really tired’. The minute I looked at her I knew something wasn’t right. I ran by the house to grab my husband, and we brought her to the E.D. The doctors could hardly keep her awake. They did a CT without any need for meds, because she just lay there. They called the sitter to ask about medications in the house. Eventually it was determined she must have gotten her hands on metoprolol, a med that lowers the heart rate. Her HR was 50. Normal heart rate for a three year old is 70-110 beats per minute. She was kept overnight and released the next afternoon. Daddy stayed with her, while I stayed home with our son. I had to text a bunch of people to let them know the party was off.
I left my husband to the airport, where he was flying to El Paso, and taking a cab across the border to Ciudad Juarez. The US consulate there is where the visa interviews are. The process usually takes two months. We were very nervous that he might not get a visa, but cautiously optimistic since my heart was so shit, and the criteria for getting a visa is that ‘The US citizen relative would have undue hardship if the petitioner was refused a visa’. I received a phone call an hour after his plane was due to land. All he said was ‘They have me. The police have me’. I shouted into the phone not to sign anything. I didn’t hear from him again for hours. He called me to tell me border patrol had arrested him for being in the country illegally. They always let people go if they are leaving the country (not entering), especially if they have a visa interview scheduled. He said he was handcuffed to a desk, with a fan purposefully being blown in his face. They tried over and over to get him signs statement saying he entered the US multiple times. It was not true, and would have cost him his visa. I had been using a website forum that tons of people who were doing, or had done the same process used. I got straight on there, and reported what had happened. No one had heard of it happening before. We were minor celebrities for being the unlucky fuckers, who panicked everyone else. There was a lawyer who did almost everyone’s case if they used a lawyer. We had been going solo, but hired her after this. We hired an El Paso lawyer to deal with getting him out of detention without admitting any fault except his crossing of the border once, when he entered the US at the age of fifteen. That was the truth. He got out, but had missed his interview. What should have taken two months, would now take six months.
We had fired the sitter just before he left, because our child nearly died and all. I was suddenly a single mom with no daycare, and a job expecting me to show up. I was now the sole earner, trying to support the three of us at home, and my husband in Mexico. Believe me, my job was not that good! I found a place that was fairly expensive, but at least had space immediately for both kids. It was downtown, which was near work, but it sucked having to bring them down every morning with the traffic.
My family took turns visiting for a couple of weeks at a time. I had coverage maybe one third of the time. When my brother was over, my daughter had a febrile seizure. It was the first seizure I had seen. I was petrified and called 911. We had a neighbor watch my son, while my brother and I went to the hospital. She was fine, but it was almost exactly a month to the day since her overdose.
A month after that my sister was in town. We were at the block party, finally having fun and letting our hair down. I brought my daughter into the bathroom. She pooped, and afterwards I could see her rectum was coming out of her anus. It was extremely odd. I didn’t know that could happen. I guess anything can happen with the human body. Once again I brought to the E.D. It had gone back in by the time we had gotten there. They said it was unusual, but that it happened. It could indicate cystic fibrosis, which is a serious disease that leads to a much shortened life. Obviously this was very scary. We had to get her tested shortly after. I cant even remember if anyone was staying with me or not at the time. I’m pretty such I was single momming it. My sister came back for a second visit. My daughter was scheduled for an EEG, that records electrical patterns in the brain. I can’t remember now. I’m pretty sure it was related to he seizure and the fact she had been less responsive that was assumed to be an overdose. Because both had happened, her doctor wanted to rule out a brain issue. Now this was the best. We had to keep her up until 02:00 and get her back up at 07:00 so she would be wrecked enough to sleep for the test. She did remarkably well initially. She was delighted to be able to watch four hundred episodes or Dora until midnight, and then bake cookies with us after than. By 01:00 she was in pieces. Crying. Falling asleep on her feet. We were trying to keep her happy and awake. It was torture for all three of us. We got through it and the results of the EEG were fine.
My husband did make it back, the day before Thanksgiving, after six months in Mexico. It was late 2009.
The next couple of years were uneventful in terms of bad chit happening. There were a couple of cardiac hospitalizations, but nothing major. Our third child, a girl, was born in 2012. My mom was due to arrive ten days after she was born. The day before that, I was sitting on the couch breastfeeding the baby. My husband was beside me. The phone call was form a woman from DCFS (The Department for Child and Family Services). She said she was outside the door. I knew immediately what it was about. My daughter’s school, where she was in Kindergarten, had called a few weeks before. They told me Sophia had told a teacher that her dad had pushed her on the stairs. I had remembered the incident. Her dad had put her in timeout on the stairs. She was jumping up and down on her butt, and scraped her back on a step. It wasn’t that bad. Absolutely not a big deal. I told the school what happened, but they said they had to report it. In my pregnant mind, I assumed she meant to me. Obviously not. Anyway. Thank God my mom was coming the next day, because the house was spotless. Usually it’s a pigsty. I was still sitting on the couch nursing. Damned if I was going to stop for her. She sang my praises of being a great mother, and how breastfeeding was a wonderful start. Yada yada. If I had been bottle feeding would she have found us guilty immediately? The other two kids were upstairs napping – that definitely gave us more brownie points. She examined the cupboards to make sure we had enough food. We were seriously the most model family on the block. Especially considering we had a newborn. We had to wake out Kindergartener. She took her down to the basement. They were only down there for a minute, and came back up. The DCFS lady, said our oldest had told her exactly what my husband said had happened. She was going to clear him, but that the paperwork would take up to six weeks to go through. We were both relieved and upset. It was all a bit of a shock. Several times over the following weeks we pondered what we would do if my husband wasn’t cleared. They’d take our kids if he lived with us. He should move out if that happened. It was a nightmare. All this while dealing with our newborn, and our Kindergartener, who obviously had some developmental issues going on.
Somewhere around 2013 we received the diagnosis of ADHD, combined, severe, and social pragmatic communication disorder for our oldest. Once we were told the symptoms, it all clicked into place. She fit both diagnoses to a ‘T’. It was a relief, and upsetting at the same time. These are not things she will ever grow out of. Things are very difficult for her. The severity of her disorders make it extremely difficult to learn, although she tests with a well above average IQ. She has no friends, and never really has had. She doesn’t understand why. She is very trusting of anyone. If a creepy looking man, with a puppy in his white van approached her, she’d go into it in a flash. No matter how many times she is told something, she has extreme difficulty retaining it. That is with her meds on board. When off her meds things are impossible. Her teacher has said the same. We’re not just two parents looking for an easy way out by medicating a lively child. Don’t judge if you haven’t walked a mile in my shoes etc. I heard two women on the train once talking about how ADHD was a made-up illness. I wanted to punch them in the tits. You try to give my child breakfast without her meds. Try to get her to walk down the street without the danger of her running into traffic – at eleven years old. I somehow got through that train ride without being arrested. Maybe I could have outrun the cops!
In winter 2013\14 I became less and less able to walk without becoming extremely fatigued, and breathless. I went into hospital – and yay – more heart surgery please. This time two valves. Well isn’t that lovely. After the shit show I went through in 2006, I was petrified. The surgery went well. It was easier than the previous one. There weren’t as severe complications. The day after I left I had a huge hematoma in my groin, that went from where my leg meets my groin, across the midline of the pubic bone. My leg was red too. I went in to the E.D. that night in agony. I was diagnosed with a blot clot which was causing the red leg. It was the hematoma causes the pain. It was almost a ten on the pain scale. They pumped me full of pain killers – yum. I was released the next day, with not quite so strong pain killers. It took the usual 6-12 weeks to recover. I had the usual tears and sadness, but bounced back relatively well.
In 2015 my anxiety started kicking my ass. I was seeing a therapist, trying to get over my wind\tornado issues, and bladder non-issue. Things progressed and I started seeing a psychiatrist. I was prescribed Xanax which worked well. I gave up alcohol in late 2015, Things were okay until I started experiencing suicidal feelings in early 2016. This progressed more and more, until I needed hospitalization on December 29, 2016. I spent the next fifteen months in and out of treatment programs and the hospital, self-harming, drinking, and having suicidal thoughts. So basically a shit sho for over two years.
And that is why I wrote this letter of complaint.
I need a break.