Getting People to Understand Rare Diseases and How We Can Do Our Best to Be Better

There is not much doubt that there is a connection between childhood trauma and chronic illnesses. I recently read that people with an ACE score (adverse childhood events. It’s a 10 question basic survey that asks about a variety of traumatic experiences during childhood) of 5 or higher have a statistically much greater likelihood of dying at least 20 years earlier than the average person who hasn’t experienced those events. I took the quiz. I had an 8. It was finally something I felt grateful to not have a “perfect” score of.

So does having a high ACE score mean that your chronic illness(es) are your fault? I’m going to give a resounding NO!!

I’ve been in a place of feeling a bit crazy about whatever is going on with my body. I test positive for some and negative for lots of diseases. Some of my health issues have become clear. Some of it is still mysterious. I keep getting referred to specialist after specialist lately to figure out the last of my most troubling symptoms. They refer me to bigger medical centers. I go back to my go to of my biological family telling me “you’re just being dramatic”. What I realized today is that none of the specialists are calling me “crazy”, they have just been validating that I have something complex and systemic and beyond my smaller city’s scope of expertise. I’m kind of done with specialists as I avoided them for a long time except a two week heart rate monitor I wore indicated an issue with my heart. (Duh? My heart is broken over missing my son. I’m all seriousness, I don’t know but will be getting to the cardiologist soon.)

We live in a world of social media where everyone lives a perfect life with perfect houses and perfect children and just perfect, perfect, perfect. It’s been upsetting me as even though I personally know a lot of it to be utter hypocrisy on behalf of those posting as I know what is really going on in their lives, it has left me feeling like I’m the only one suffering. I work to be authentic on social media, but I fall short on it too.

In the past couple weeks of seeing this new counselor, I am prioritizing how I’m spending my time so I feel I’m living a fulfilling life instead of depressing myself with social media or other tasks that are completely useless to making me feel good about myself. I’ve been wasting time on soul shrinking activities versus soul growth.

I’m still grieving hugely over the loss of my son, which I hope someday I can tell my side of the story as it’s very compelling. I’ve also been grieving over my losing function and abilities rather rapidly since July without a real answer why except that it’s kind of the nature of neurological disease.

So back to the ACE score and how dire it sounds. There are many things you can do to mitigate having a traumatic childhood impact your health seriously. Good trauma therapy is a start. Other things were suggested like healthy diet, maintaining a healthy weight, yoga, exercise, meditation, and forming healthy friendships and relationships.

I truly am working to evict the idea that my illnesses are my fault as I do all of the above and more to be well. Sometimes it gets frustrating to take such good care of yourself for nearly 2 years and still get worse physically. I do know that I continue to get stronger emotionally. I may have intense moments of sobbing and grief over missing my son, but that IS emotional health. If I numbed it out and pretended it wasn’t happening that would lead to a ton of anxiety and depression.

I’ve been working to cultivate community locally, not online. I’ve had to do a lot of my goodbyes to social media, which has been mixed. My instinct is to grab my phone and scroll through my list of “friends” so I can connect is still strong. I realize it’s a better expenditure of my time to leave that alone to pick up the phone to make a plan with someone locally or read a book or enjoy our unusually beautiful weather we are having.

I know for people younger than me (I’m 43) in person connection can feel foreign, especially if you are also managing social anxiety. I will tell you that a real hug is way better than someone sending the gif that says “hug loading”. I get it’s a nice sentiment, but it personally makes me feel awful.

So it might be too late to not cut my 20 years of my life short that my ACE score is a good indicator that I’m at risk of, despite my best efforts. So I hope for people of any type of trauma background that you learn about ACE and how it can change your life if you don’t be proactive to change it.

The above picture is a few days before I had my long overdue IVIG treatment. The one on the right is after recovering from a couple days from it. I would say that treatment may not cure me, but it can at least give me the energy to smile again and remember why even hard lives are worth living.

My final note about rare illnesses is that it’s really important for people to see you and how bad off you are on the worst days. I can’t really fault friends who don’t believe how sick I get if they never see it. I wish my primary care could see me on my worst days, but I can’t drive those days. I know she reads this occasionally. Perhaps she will see the marked difference in how much better I look after getting treatment.

Regardless, I just want people to know if you have a childhood of severe trauma, take your life back by taking care of you beginning now. Don’t become another ACE statistic and die 20 years too soon. There’s a lot of wonder in this world that I hope all my incredible self care will someday come to fruition and feel well enough to have a bigger bucket list than “maintaining clean underwear”. (That’s supposed to be more for a laugh than sound tragic).

Take care of yourselves. You certainly deserve it even if no one ever told you that you did.

Love

Lizzie

Learning to Love Things About Yourself You Used to Hate

I’m sure if you were to look at this picture, you would say, “yup, that’s Lizzie”, especially if you know me personally.

I used to NEVER have a genuine smile ever. I did today and do often. I am lucky to have the opportunity to realize that along the way for an entire lifetime, I have had people who have genuinely believed in me and gone above and beyond for me in all walks of life. I’ve been questioning why I was so deserving? I realized I wasn’t necessarily deserving. If we all look back on our lives, we probably all have people who went above and beyond for us. The recognition of who they were, especially when still in the depths of misery might be hard. I have gone above and beyond for others as I believed in them. They might not still be in my life, but the people who went above and beyond for me might not be in my life anymore either. The important part is that I recognize the gifts they gave me.

So this post is appreciating things I used to hate about me. I’m going to use the above picture to dissect some physical characteristics I used to hate.

1. I have a crooked smile. It’s barely noticeable, but if you look at my lower lip, it’s crooked. My mom told me not to smile as my “crookedness” was ugly. Ha! Now people tell me my smile lights up a room!

2. This one will probably be really funny. Besides not smiling so I could hide my crooked smile, I have imperfect teeth. You are supposed to have 4 flat teeth in front and then your pointy teeth. I was born with only two front flat teeth. My pointy teeth are right after my only 2 front flat teeth. My mom said it proved I was the devil having the point teeth so close to the front. Ha! People always ask how I have such perfect teeth. My added bonus was that I never had to have my upper wisdom teeth removed as my genetic defect left enough room to keep my wisdom (teeth). 😊

3. I didn’t truly ever look people in the eyes for years as my mom told me people could look into my green devil eyes and see my evil soul. Ha! People have told me for years what beautiful eyes I have. I only recently learned that only 5% of people have green eyes and most rare. Green eyes are also the only eye color that changes with mood or illness. Mine can range from an almost gray to blue. Lighter and sparkly usually means I feel emotionally and physically well. Very dark is usually a sign of bad health, whether emotional or physical. The interesting thing that despite being very physically sick, my green eyes only turned light and sparkly the past couple years as I have healed so much of the emotional stuff.

This isn’t so much about proving to you that I’m beautiful in my imperfections. This is a representation of so much learning about myself that many things that make me unique are wonderful despite all the lies I was told that being unique in my ways was bad or ugly. The people telling me those things had something wrong with THEM, not me.

What unique trait do you have that you were told was terrible, but the reality is that it’s wonderful? It might take some digging to appreciate yourself. As I truly evict the ugly lies of my family and other abusive people in my life, I find moments of falling in love with me. I also find moments of grief for not utilizing what made me unique as I believed the lies for so long.

What is a lie you were told you can discard today with what the truth is? I challenge you!

Love

Lizzie

Authenticity Truly Revisited

I started this blog in July of 2018. It’s been 16 months of big transformation. I still learn about authenticity daily, but in 16 months, I have truly learned lessons about authenticity that I didn’t think I would ever learn. Here is my short list.

You HAVE to ask for help. People can’t help if they don’t know how. If they continually can’t help, it’s time to move on and sometimes an explanation isn’t needed.

You HAVE to set boundaries. Boundaries keep us safe, especially emotionally. The backlash of setting boundaries can feel devastating, but the positive aspects will eventually be seen. It’s not ok to be treated poorly.

You HAVE to accept some kind of spirituality. It could be appreciating nature to being a member of an organized religion. Recognizing something greater than you feels humbling and comforting, whether it’s a tree or god or something in between.

You HAVE to cultivate connection within your community as Facebook just won’t cut it forever and true friendship means so much more than 100 “likes” on Facebook. One “like” a day from an actual person means so much more.

You HAVE to be vulnerable with your feelings. It’s ok to be happy. It’s also ok to be angry and sad. It’s very important to know someone who can hold all of it or several someones who can hold different pieces. Let it put. The pain has to be released (in healthy ways).

You HAVE to understand gratitude. I’m not advocating for a gratitude journal or even a regular practice. Recognizing what is good is equally as important as honoring what’s hard.

You HAVE to treat yourself well. Self care isn’t a day at the spa. Self care can be as simple as mindfully washing your dishes or giving your pet love. Self care is free. If you can afford a day at the spa or massage, go for it if it makes you feel better!

You HAVE to recognize your limits. It doesn’t matter if you are ill like me with energy being more scarce than money often. I’m realizing where and who I have to focus my energy. If someone or something drains you, please do something to change it. I know often our jobs can be draining or children, but you aren’t helpless. There might not be a lot you can change about the situation, but a mind shift might work.

You HAVE to recognize when you are wrong. You aren’t always wrong even if someone treats you horribly. I recognized yesterday that I had said something that came out very wrong and insensitive to a dear friend. I got to sincerely apologize yesterday. It made me feel good as it was accepted with compassion. If you are having a conflict with someone, don’t simply avoid it. Do your part to say you are sorry. If they accept it, wonderful. If they don’t or won’t engage in compromise, maybe you need to leave it be, and it’s not a positive relationship. I just want to reiterate that you don’t have to apologize to everyone as sometimes people actually need to apologize to you, and if they don’t, leave that too.

You HAVE to accept that you are an imperfect person who makes mistakes and forgive yourself for it.

You HAVE to treat yourself with compassion. The things I say to myself about what I’m going through are horrible. I’m learning to treat myself like I would a best friend. Truly working on writing those eviction notices to the ugly thoughts planted in my head from a childhood of pain that I allowed to be an almost entire adulthood of pain.

The truth is, you don’t have to do any of these things. If you have other ideas about authenticity, let me know. These are just some of the lessons I’ve learned in the past couple years that made so much depression, anxiety, and utter misery dissipate for me. Is my life a perfectly wonderful wealth of rosiness? Absolutely not on any level. These lessons about authenticity have taught me to handle the pain of life, learn to cry for the happy and the sad, and generally keep putting one foot in front of the other (metaphorical for me of course as I use a wheelchair 85% of the time)

I know some of you have been on this journey since the beginning with me and appreciate your support and accolades for where I’ve come from. Some of you have seen parts. Despite it, I’m grateful for the personal messages, emails, and comments posted here how writing this all out has affected you. It makes my heart feel full.

(A time a few days ago where I was working at my crazy weeds being mindful of my limitations. The first picture I ever actually thought I looked beautiful ever)

Love

Lizzie

Walking Through the Valley of the Shadow of Death

(Several days ago I was taking out my anger on my nearly 8 foot tall weeds several people promised to take care of for me. I was mindfully and angrily chopping those weeds with all the people in mind who have abandoned me in illness and for trying to protect my son)

If you know me or anything about my trauma history, my setting foot in a spiritual anything, let alone a Christian Church would be unheard of. I was abused in the name of god. Told god could never love someone like me, so why would I give it a chance?

I gave it a chance as I was lucky to meet a wonderful young woman who has taught me more about what it’s like to be a regular human, a good friend, and how it’s ok to struggle just as much as it’s ok to be joyous. She has stuck by me as I’ve made mistakes as you never learn anything overnight as a trauma survivor. It’s a lifelong process and finding people who are true friends who will sit with you as you laugh as much as sit with you when you are sobbing in desperation and fear are rare. I never really had a friend like her. I never really got to know someone so emotionally healthy.

She’s been introducing me to her community and makes time for me as she can with her busy schedule. I appreciate that she makes time for me. I’m coming to realize that friends who do make time for you despite being busy are your inner circle. There are periphery friends that go in rings as you go out further and further. I’ve also realized that if someone is too busy to see me for months or years, perhaps it’s their way of saying we aren’t really friends. The best recommendation she made for me was to see the counselor at her church.

I’ve been reluctant for months as a counselor at a Christian Church felt a little strange to me considering my history. I have also run the gamut of therapists on my insurance who didn’t really understand chronic illness and didn’t want to discuss the situation with my son as who his dad is makes it sticky. I also spent 3 months with a therapist who was probably one of the craziest people I ever met and managed to make me feel worse. I think she came into my life so I could feel empowered to terminate with her as I recognized that it was abusive for me. So I gave up on therapy. Now I couldn’t afford my therapy copay regardless.

I’ve been really lost without my son. Seeing the oncologist and the implications of that and all the other illnesses I’m managing all while knowing a bunch of crappy people who can’t spare a minute to stop by has had me totally overwhelmed. There are also other people I have had to cut out as their energy was so intense it made me almost jittery. I don’t do loud well right now. I can’t handle drama right now. I’m having to focus on me and give back to others in ways I can beyond just being an ear.

So I went to this counselor at this Christian Church without trepidation at all. I knew my friend wouldn’t lead me astray. I loved that she didn’t ask questions about my trauma history. Most therapists can’t get past my horrific childhood and just want to focus on that despite me telling them it’s not my main issue. My trauma will always color my world a bit, but I recognize it. I worked very hard on it to move through it.

I gave her the quick history about my son and his other parents who they were and how I was blocked from all communication a little over two months ago. I knew I liked her when she said, “you got totally screwed”. So nice to hear.

I told her I’m crying all the time, like constantly and this morning as I was getting in the shower, I was sobbing and screaming over and over, “WHY ME???” I did it so much I scared the dogs (they got lots of treats and cuddles. They are content). I was so upset as I miss my son terribly. I’m getting up ultra early for a scan reserved just for cancer patients and had barely eaten the day before due to the dietary requirements of the scan.

I told her I feel like I’m going totally crazy. She said my crying all the time and sobbing and screaming were great and needed to do it more. I explained to her as an extreme trauma survivor, I vowed close to two years ago that I wasn’t stuffing my feelings or dissociating from the pain anymore. I cured my anxiety by actually feeling my feelings. I think I’ve been home from my trip for 3 weeks now. All I have done is sob. The counselor was proud of me. She said what huge progress that is for a person like me. She congratulated me on feeling my feelings so intensely.

She said it was like I was grieving a dead child, except I know he’s only a few miles away. She said my intense grief is totally valid. It felt so good to hear as pretty much everyone in my life has told me that I have to appreciate this time to work on my health. No one seems to get the intense stress of grief is making me worse, not better. She got it though. She so got it.

She told me “I must walk through the shadow of the valley of death, but I must walk through it, not stay in it”. She didn’t give me a timeframe. She recognized that I AM walking through it. It’s going to be incredibly painful, but I will find I will get through it. Will the pain of losing my son always be there? Absolutely. I will come out though.

I also told her I’m usually this very positive and optimistic person. I told her I’ve lost it. She told me if I was seeing silver linings right now that, “that would be weird”. What a wonderful validation that I don’t have to be perky and optimistic. She said it will make me look more authentic if I share my pain. She didn’t even know about my blog about being authentic.

I wheeled into her office feeling like I was going crazy. I wheeled out confident that I’m actually being very emotionally healthy in dealing with this. I did shed a few more tears today. They were tears of feeling heard and validated. No one has called me crazy except my sons other parents and my own inner critic.

The truth is the more emotionally healthy I become, the crazier I will look to people who are not choosing to try or even work a little bit towards wellness. Or their trauma has them lost in bitterness and hate they might not even recognize. Recognizing you are hurting but continuing to keep going in a manner working to be a better person than you were the previous day is emotional health. I don’t care if you’re lost, feeling suicidal, see no end to the misery, but you continue, with kindness and compassion for yourself and others, I’m proud of you.

Trying yelling and sobbing, “WHY ME??” just a few times. It’s extremely cathartic as life isn’t fair and sometimes it’s really fucking painful (I never swear, so you know it hurts right now).

So I was happy to tell her I’m continuing with my mindfulness, gratitude, meditation, and yoga practice. I am taking care of myself. Apparently crying constantly is taking care of me too.

What a relief to know I’m normal (yikes! I never thought I’d call myself that). So perhaps I’m ending the constant cycle of hell in relation to missing my son. There will always be a sadness that hangs with me without him, but I will NEVER allow anyone to destroy me, even if you take away the little person I love most in this world.

I hope my authenticity about how rough it’s been and how I fight to take back my life everyday no matter what is thrown at me will inspire you to continue to as well.

And if my precious little boy ever gets to read my blog, I love you more than I can express and it hurts how much I miss you. I hope our paths cross again someday.

Love

Lizzie

Nurturing the Sick When You Are the Sick One

I know an incredible woman who struggles with childhood trauma like I do, but she struggles with it with a proactive attitude similar to me. It can be hard, but at the same time, she is learning, growing, evolving, and using some of her difficult experiences to help others through writing and speaking. She is doing so much of what I hope to have the strength to do more of someday soon.

Her focus is on self care for medical parents. By that, I mean, she was born with a daughter who had a genetic defect who had major heart surgery as an infant and many other serious health struggles as she grew. She understands now how she didn’t take care of herself at all and how much the stress affected her. She’s using her experience of what she did wrong to reach out to other parents who have sick children (any illness) by writing articles for “the mighty”, sending out a weekly newsletter, and will eventually publish a book.

Her recent article in “the mighty” struck me so much as her expression of love and concern was genuine and real for her sick daughter. Talking about loving her wasn’t the point of the article, but I immediately sent her a text how proud I was of her for being such a loving mother to her daughter, and I loved that she took such good care of her, especially as I was a sickly child whose mother found my illnesses to be a “bother” or “dramatic” or she just didn’t believe me. My friend sent back a reply of wondering what would have happened to her if she had been sick with how her parents were. I could have probably sent her a textbook of what she would be had that happened as I live it. Instead, I’m going to put it succinctly here for anyone else managing chronic illness(es) who had abusive parents.

I get afraid I’ll get called “dramatic” by my doctors if I tell them my real truth of how bad I am. It’s so bad that I canceled my doctors appointment tomorrow as I’m so unwell I don’t want my doctor to see how I am. I couldn’t really drive myself, but I could have found a way there.

On my really bad days, I won’t allow people to come over as I don’t want people to see me. If you are sick, you do it alone.

I have learned that you don’t ask for help as people will again believe I’m being “dramatic” or not even sick. I have personally reinforced this by not being truthful with people who want to help and only sharing my victories, so no one knows how bad it is. The one day I was going to allow a friend to see how bad I was, she couldn’t get the keypad or the actual key to work on my front door. I took it as a sign that I stay sick alone.

I don’t even trust myself that I’m sick. I tell myself constantly “to get over it”. “Stop being dramatic Lizzie, you’re fine”. My mom never trusted I was sick, so why should I trust I’m sick? I am homebound in absolute agony, not even necessarily from pain, but I get these horrible chills where I may shiver for hours, which makes me sweat, making me more cold as I’m soaking wet, but the idea of getting up to change my clothes or move to the dry side of my bed is impossible. I also have a couple days where I get overcome with huge fatigue, dizziness, my eyesight goes wonky to where I see double or it’s blurry and know I have to get to my bed. These couple days a week when I’m in what I can only call a “flare up” of my illnesses, I make it usually within a few feet of my bedroom door. When I was still walking, I usually would just go to the ground and fall asleep. Now that I’m using my wheelchair more often than not, I have to get out of my wheelchair and get to the ground. All I can say is the fatigue becomes totally overwhelming. I now have one of those watches that show your sleep patterns. Today, I slept on my hardwood floor for 3 hours and 45 minutes. The sad thing is that I usually wake up as my dogs will lay next to me and eventually they are crying loud enough that I literally crawl and get myself into my bed. They aren’t crying as they want something. I truly think they mourn for me. They are very in tune with how I am.

When your mom didn’t care that you were sick, you learn to become overly self reliant. The other day I had to do something requiring climbing a 3 step ladder. I can’t hardly keep myself upright to walk, so why would I climb a step ladder? You see, I have to do it myself. No one cares I’m sick. And as you can imagine, I DID fall off the step ladder. The really dumb thing is I realized I hadn’t hurt myself too badly, so I got up and finished my task. Instead of being scared of what had just happened, I was actually proud of myself for doing it. Crazy for sure.

I drop things constantly. Today, I dropped a tea kettle of boiling water on my legs as I was seated. Instead of having compassion for how much I hurt myself, I just said to myself, “you’re stupid and need to stop doing these stupid things”. I had zero compassion for myself as I would for someone else who would have done the same thing. I just figured “it was nothing”. My burnt legs still hurt, but I must be dramatic.

I think the worst part is that I learned not to ask for help. When people would offer help, I would decline as I felt guilty as I’m definitely not worthy of help when I don’t feel well. Or sometimes people would help and as they don’t understand the nature of what I’m managing, people could become judgmental of me. Before I got really bad with my walking, I would use my forearm crutches outside of the house, but I used my leg braces to make it around my house. Someone was here and got a comment, “look at you walking just fine” in a condescending manner like I fake it. It reinforced that I don’t want anyone around regularly as they don’t see all of me. I may have walked across my house that day, but I collapsed in my bed and only got up for several days to let the dogs out and maybe went to the bathroom once a day. I didn’t even get myself water for a couple days as why would I ask if someone comes by, and I happen to have a decent moment and can get it myself.

I have learned to say that I’m “fine” and “ok” when I am so not ok, you wouldn’t believe it. I’ve learned no one likes a sick person, especially with rare diagnoses that no one has ever heard of.

I figured out that people are too busy to spend time with me. They will say they are tired, have a cold, not actually celebrating their birthdays, have to work, but the next day birthday parties show up or good times with friends. All I have asked so many is to just go out and have fun. I figured out I don’t matter as a sick person.

There are many other ugly things about being a sickly child with a mom that not only didn’t care, she was angry that I would take up her time with my “neediness”, but the list would go on and on. It’s just turned into a ton of my own self doubt, like this is all my fault, if I only tried harder, hiding how sick I am, not being forthcoming with my doctors about how bad my physical symptoms for fear of them thinking I’m just “dramatic, crazy, attention seeking”, people don’t have any interest in truly being a friend to a sick person… I do still struggle with it as my own biological family doesn’t believe me even today, and if I do try to talk to them about a possible new diagnosis or symptom, I get treated with skepticism and have been warned that these doctors are just trying to take me for all my money and somehow my real problem is stupidity, not illness.

After all that really horrible stuff that I have been taught about what I “know” is the “proper” way to be sick, I have made progress. I allowed the pain management doctor to hear me slur my speech really bad as I knew she would have compassion and not scorn or think I was dramatic. It was obviously real and couldn’t change it. She’s seen me a handful of times and knows me to be articulate and speak clearly. I made sure to let her know this is actually my normal quite often. I have just learned not to talk to people when it happens as more than one person has called the ambulance fearing I was having a stroke. Texting is how people communicate. As much as I hate it, but I can hide a lot, including my slurred speech or my emotional pain of doing so much that exhausts me.

I am learning to allow people to see me bad off. A friend came over the other day after I had a string of bad days. I told her we may literally have to lay in my bed. It wasn’t actually one of my worst days, but it was one of those days I couldn’t sit in the living room. She looked hesitant to sit on my bed and even a bit awkward. I asked her to please sit. She sat at the end of my bed while I was kind of propped up at the head. Someday, people will maybe lay down with me and give me comfort. I understand that it’s awkward to lay in someone else’s bed, but I will tell you sick people need a lot of comforting.

I’m figuring out how to ask the proper people for help whose only payment they want is my company. I have a follow up with the cancer specialist next week. I asked for a ride as my ability to get there will be questionable as it’s the morning after my IVIG infusions, and I tend to feel awful for a day or two after. It’s important I get to the oncologist though as I will probably get real answers that day. Not only do I need to be there, I might need emotional support depending on what I get told.

I’m genuinely learning what I can and can’t do. If what I’m going through right now ever truly remits, I can’t climb mountains. I can’t run marathons. Beyond everything else I’m afflicted with, I have a couple neuro immune diseases that mean I have to adjust the expectations of myself. Right now, it means I’ve had to quit my more advanced yoga class a couple times a week to try a more gentler version once a week. I’ve had to forgive myself for not working on my book or painting or do anything future related. I’ve had to cut my circle to tiny as I CAN do things for people, but my abilities have changed. I can’t support many in their own drama. I can support people working on trauma recovery who are genuinely committed to wellness. It doesn’t have to be my way of trauma healing. Sometimes people need an ear to express their pain. I’m here for that. I’m here for that if they are solution oriented. I don’t have the energy to listen to people go on and on about their misery when they were just going back to the same old thing regardless. I was spending hours on the phone with multiple people daily who enjoyed complaining. I don’t have the energy for that. I need help too, not just helping others. As someone who used to only give to the detriment of myself, it’s huge to put myself first.

I have made HUGE strides in understanding that as a sick person, I absolutely don’t deserve cruelty and have to set boundaries. I lost my son over setting a boundary of wanting to discuss some cruelty that some was definitely happening, other parts, I wasn’t sure of. Instead of getting a conversation with a neutral party present as I requested, I was blocked from all communication with my son. Does that hurt? Absolutely and more than I can ever express. My son might be better off not seeing his mom sick and not dealing with all the complexities of negative things that were said about me and seeing the reality of who I was. I read all these beautiful stories of parents who had split and weren’t necessarily fond of each other, but when one parent became sick, the healthier parent would make sure the child still saw the sick parent and after the visit, the child could go back to the healthier parent as a safe place to process their feelings. I was told directly by one of his other parents not too long ago that “your son doesn’t care about your health problems”. It’s unfortunate as that’s not what he told me. He said he didn’t feel safe talking to anyone about it even though I encouraged him to talk to his other parents, or a therapist, or any adult he trusted. He said he didn’t trust anyone but me. I feel bad as I do believe that I was a very good mom, but I obviously didn’t model, nor has anyone in his life that it’s ok to ask for help with the hard stuff. I hope he’s asking for help now and not just pretending to be ok. Or if he does seem ok, I hope he genuinely is as having a sick mom was both inspiring to him and frightening.

So I guess to answer my friends question, it has been incredibly difficult to have had a mom that found me being sick irritating, to put it lightly. The illnesses haven’t been nearly as hard as the cognitive distortions that goes along with a lifetime of believing being sick was wrong and to continue to have a family that believes I am just lazy. I wish they knew exactly how much I grieve having to put my goals and dreams on hold and the fear that comes with never being able to do much of anything. Productivity = worth in my family. My being productive is unlearning the garbage they taught me about life, finding joy in even the tiniest of things, becoming authentic when you once had no idea what that meant, accepting the love of others when you have been convinced you are unlovable. My being productive is getting to this blog when I can to spread the word that healing happens even if it’s often ugly, painful, lonely, makes you feel crazy. Many of you have made it clear it helps you.

The beauty is that even though my childhood was taken, my health has been taken, my child has been taken, I’m still not broken and continue to move forward even though some days it’s much slower than others. I’m still alive and grateful for so much even on the days where lately I’m slurring my speech, falling over from fatigue, losing activities I love, often can barely breathe as I know people DO care.

I did cancel my doctors appointment tomorrow. Maybe someday I can feel comfortable enough to give her the really ugly parts. I’m working on it. Tomorrow, I will work on self care and understanding I have no reason to be dramatic.

(Many pictures of the pain of being sick and alone)

Love

Lizzie (And I apologize to a handful of people for not being authentic about my struggles. I hope it makes more sense now.)

It’s Halloween, Or It Just Was

(It’s a very blurry photo as there were lots of people and only wanted to show myself, so zoomed in a lot. We dressed as “price is right” contestants. You can’t see our name tags or price bids, but they looked exactly like the show)

In my time zone, it’s still Halloween. Halloween can be a difficult holiday for people for many reasons. People with severe trauma may have spent the day scared.

For me, Halloween was traumatic as I haven’t been allowed to speak to my son for almost 2 months for nothing I did, or at least no one told me. I was just blocked. I could truly tell the story of why I think, but perhaps another time.

I started my day opening Facebook and YEARS of Halloween memories of him and I came up. I wasn’t going to cry, but I felt extremely upset, so I did one of those gut wrenching, sobbing sorts of cries as my son loves Halloween. He loves dressing up and it’s just a wonderful kid holiday. My tears were also knowing this is the beginning of the holiday season meaning I probably have several in the coming couple months, I will spend alone.

It’s not that I don’t have friends, but holidays are about family. I don’t have family. I used to have a wonderful and kind son, who wasn’t biologically or legally mine, but I have always been in his life. My family is me. My friends will probably be spending the holidays with their families and that’s ok. You usually don’t get invited to family celebrations.

I’d invite people who were alone to be with me, but everyone I know has family. I understand. I understand that I will probably be alone. I also understand I’m not the only one.

Tomorrow morning, I go to the oncologist, so I had tears about that too. I had tears as my doctor is fairly certain I have myasthenia gravis. One of the things that keeps me centered is regularly going to yoga with a very special teacher. Before knowing I had myasthenia gravis, I would have just pushed myself to go. I now recognize with how hard it is for me to breathe and how much I’ve been choking that I can’t push myself. I will send myself into a myasthenic crisis where I could stop breathing, and if I don’t get medical attention immediately, I could die.

So, I was very sad and included in my tears not going to yoga this morning. My class is my community, even if it’s just a couple times a week, and my teacher inspires me to be a better person.

Not having regular yoga practice from being out of town and taking off 10 days to attempt to heal my wrists has sent me reeling. It’s been hard to be without something so central to me and don’t know how long I’ll have to refrain. Maybe yoga isn’t your thing, but you would probably cry if something you really love to do was taken from you for an indefinite amount of time. That’s where I’m at.

I will tell you the good thing I decided to do today as I knew it would be hard without my son was volunteer with a church organization to do a “trunk or treat” in a more poor neighborhood. It wasn’t even seeing the kids in their costumes, as it made me sad, it was just being able to talk to and meet new people. I really enjoy being social. Getting sick takes it away a lot. So being social and lighthearted was good for me. My sadness was with me, but I didn’t have to talk about it. We told funny stories and laughed a lot. I’m a natural extrovert.

So I turned a rather terrible day into a better one. As I prepare for bed, I’m still sad that I will never know how my sons Halloween went or what he wore or how much candy he got. I’m going to bed with sadness, but I also go to bed with gratitude that I got to laugh with new people on such a painful day.

Love

Lizzie

Some Love You. Some Hate You: A True Story About DID

(The only surviving self portrait one of my PALS painted of herself. There were many more, but I destroyed them for reasons I’ll talk about another time. It’s signed “Simone” and was done in 2001. She knew how beautiful we all were, we were just hiding it back then)

It’s been an interesting time of connecting with people I went to trauma treatment a couple years ago.

The first place I went to was an inpatient trauma unit in Texas. It was mostly DID folks, which stands for “dissociative identity disorder”. If you’ve ever heard of it from TV or movies, that’s NOT what it is whatsoever. DID is an extremely creative way of a small child handling extreme trauma by creating parts or altars that kind of take over to handle the trauma so the core self can be preserved.

That’s not a scientific definition or what you’ll find in a psychiatrist’s bookshelf to diagnose people with it. It’s just my definition, and how I experienced it myself.

I found out from a family member that my first sexual trauma happened when I was around 18 months old. So I am finally coming out with it, yes I was diagnosed with DID in my mid 20s. People will either flock to me or run screaming or even worse I have a couple medical professionals who read my blog who may just decide to call me crazy after all.

I would personally like to thank my very creative DID brain for protecting my inner core. If you have DID, please take a moment to thank your incredibly creative brain for protecting you too.

I don’t call myself DID so much anymore. I’ve always hated labels in general. The cure, according to psychology, for DID has always been to integrate or have co-consciousness. I purposefully never read anything about DID as my trauma and how my brain created an intricate system felt very personal to me. I guess if anything, you could call me a recovered DID. I prefer to just call me, me and have many identities that have nothing to do with DID. I am a writer, a friend, an artist, a yogi, a helper, a mom, a chef, disabled, a seeker of truth, a book nerd, dog lover… as you see we all have different identities, even regular people, although I will not be called regular!

I recovered from my DID by coming up with the term “coalescence”. I don’t like integration or co-consciousness as it never fit what I wanted. Maybe this is a bit far fetched, but my DID readers may appreciate this. In astrophysics, coalescence is when many particles come together to be a star. Each part still exists, but together, you get to shine bright.

What coalescence means for me is that I do get to shine bright as my adult and very present self. I call what I get as twinges. It’s not anxiety, it’s just a feeling that something is off. When I get a twinge, I go inside my head, and say, “ok ladies, what is going on?” Sometimes it’s as simple as I put on a purple shirt when really most everyone wanted pink. So depending on time, resources, what’s clean, etc, we collectively come to a consensus of what can be done. If there’s time to change, I’ll change. If not, a decision will be made like maybe pink tomorrow. I can do this in seconds. I can do it if I’m having a conversation with someone else without them ever knowing.

Sometimes twinges are more serious. I live on a busy street. I’m not in a dangerous neighborhood, but every now and then a sketchy looking person may come down the street. As I pulled in my driveway after yoga today, I got a twinge. “Ok ladies, what’s up?” I guess there was a guy who looked a little weird riding his bike down the street and the consensus was that I would wait to open the garage door until he was pretty far down the street.

DID is about dissociating and not being present as when you are severely abused as a child, your brain literally can’t handle it, so you basically leave while some other part of you takes over to manage the trauma. Again, it’s about protecting your core self. It’s pretty cool and intelligent, except people with DID continue it into adulthood. Dissociating as an adult can put you into literal dangerous situations or you may feel like you are in a flashback and reliving a horrible past when your present may actually be safe. Or the ability to stay present can make your life safe.

I never say to get rid of your parts, or as I’ve always called mine my “PALS”. I just hope my DID friends can get out of their misery as I’ve met some very special people who deserve to live peaceful and content lives.

I write about this at this very early hour as I’ve had a bit of what I would call “survivors guilt”. DID is extremely hard to heal from. It’s emotionally draining, you have to find a committed professional or a few, maybe go to treatment if you’re lucky, or if you have a friend you trust, maybe they can help you. It’s simply not easy and the most daunting and impossible task that could ever seem possible. I’m here to absolutely say it is possible.

I have healed from so much of it. I still have really bad and heartbreaking days. I get days where i feel really low, but i also recognize my joyous moments. I recognize how many wonderful people stood beside me over the years and continue to. I have learned to just feel all my feelings instead of pushing them away and see them as a gift, even the bad ones as feeling them has led me away from anxiety and into peace. Those moments of crying in utter sadness and anger does not feel great, but I feel cleansed after.

I talk about survivors guilt as I’ve offered to walk beside many of my DID comrades so they can be assisted in getting out of emotional hell. You don’t have to do it exactly like me, but I like to be an example that there is life beyond trauma, even if life hurts and things are often uncertain, but that is the human condition.

In the past couple weeks, I reconnected just a bit with a couple people from that trauma unit in Texas, both with a DID diagnosis. One sent me a very ugly message that was very long but one line said something like “you talk down for fucks sake. Start writing textbooks”. (She has never read my blog that she said, so she has no idea what I’m doing with writing). This was after I sent a compassionate message about knowing things were particularly hard for her, and I essentially hoped I could help. She was mad as I had gone off the radar for a couple weeks. With being very busy out of town and spraining my wrists, I did. I actually had tried to send her a text while I was on the plane, but the free WiFi will only send texts to other iPhones and not an android. So the message was returned. After this being a series of very hateful messages calling me some of the worst things you can imagine, I had to set a boundary that I was done. This has happened several times with her. I don’t deserve abuse even by a severely hurting person, especially when I was working to offer love and support. So there’s my survivors guilt. I had to cut off a very hurting person as no one deserves to be called ugly names. If you can have a conversation about it or apologize and talk about why, that’s different. As I said this has been going on for awhile.

To end on a positive note, I also got to hear from a friend from that program recently. I hadn’t heard from her in a long time. I never took it personally. I just knew she was struggling and often the struggling times are the hardest to reach out even though it’s the most imperative. She made a beautiful and touching comment about how my blog has helped her, but also her family. It made my day, it made my week, it might even make my life. Thank you my friend. So glad to know you are still fighting!

Writing this blog can be hard to be so honest about life, but I’m also grateful that sharing my authenticity and journey of healing from so much and how I continue to help so many, makes it worth it to me. Every now and then I’ll get a comment or an email or a private message or even my primary care who passes out my card with my blog has told me her patients have loved it makes me want to continue to spread my truth whether I’m loved or hated for it. I’ll enjoy the love.

I love you the strangers, the new friends, the old friends, the friends that are like sisters, anyone who is working to be better, and especially those people I worry about who live in my heart and reach out just enough to touch me so deeply.

Love

Lizzie