I signed up for the sled hockey team last weekend. It was exhilarating to fall over and at the suggestion of my pain management specialist who decided we were going to wrap me in bubble wrap and put me in a padded room after I fell and hit my head again, sled hockey felt safe. Helmet, elbow pads, thick gloves—forget the huge spikes on the bottom of the sticks. But I digress. Just notice the life.
I work for an amazing company who lovingly embraces the fact I work so hard in spite of numerous rare diseases and recognize that my contribution as a consumer of very expensive healthcare is valued and needed.
Working in healthcare has been hard. I was hired to help people with life changing diagnoses live well. I call it remembering “the space in between” when you are being a patient. I know I have forgotten how to live when all my calendar was filled with was medical stuff.
I have found some supportive healthcare professionals who are also consumers of high cost healthcare. I asked one yesterday, “do you ever start to enjoy working in healthcare when you see the ugly side?” She assured me I would and that once I’m truly doing my job of helping patients live well, I’ll be a lot more fulfilled.
I have the potential to work with patients that have months to maybe a year to live. A huge foundation of the program I’m creating is equity. It means that no matter what the diagnosis, prognosis, length, or severity of disease, I am committed to helping them.
There are bad people, good people, and middle people in any field. Healthcare is no different. It was advised to me by someone very motivated by profit that I shouldn’t help a particular very severe disease state as it’s not hopeful or profitable. I negated the idea in my head thinking “equity, equity, equity”, but the message I heard is “there’s no profit in dead people”. I guess it’s technically true. I’m more humanitarian about it and have been reminded it’s why I was hired.
As I surpass the 3 week mark of how long I was given to live two years ago, I think about if I had given up and accepted that as my fate. I would have deteriorated and be gone. I’m certainly more profitable to healthcare alive and without a doubt to those that know me.
As I say to many, all of us are going to face our mortality at some point. Some of us are blessed to live as though we know it.
Leaving with a lovely photo I took out the window of my pulmonologist’s exam room today. We actually both spoke of seeing the mountain tops so clearly today. He seemed a bit weary himself as a pulmonologist and critical care doctor who makes rounds in the ICU. He stared out the window for a much longer pause and wouldn’t look at me when I asked how he was. He simply gazed and said, “I’m mostly ok”. Nature is a great connection and I’m sure he’s not thinking about the lack of profitability of dead people. I’m sure he’s probably feeling a bit like I do.
I got some time away at the beach. 5 days away was exactly what I needed to rejuvenate—or so I thought. The picture is my holding the infusion pump I use weekly to self infuse immune globulin to manage multiple neurological autoimmune diseases. I did feel good at the beach. I was able to take walks with my crutches and swim in the heated salt water pool. I wasn’t swimming for exercise, I let my inner child swim and was suddenly my very adult self playing like I was 7 diving down to the bottom of the 8 foot pool transformed into a mermaid just because it was fun.
While you can take a break from your problems, you can’t escape them. It’s a heavy week this week with visits to my neurologist where I need to discuss my myasthenia gravis and other hard subjects. I also head to the neurosurgeon Wednesday where I’ve been avoiding a neck fusion for almost a year. He has also mentioned fusing my upper thoracic spine. The following week, I see my GI doctor who is strongly proposing I go to a major medical center 4 hours away for an invasive surgery to help eliminate the debilitating nausea from my gastroparesis.
What does someone do with all these decisions? Well, I went to the beach as a respite. I have a full time job hopefully making a difference for people with life altering health diagnoses. There was work in between my mermaid time and being mesmerized by waves that never stop.
And I still did an infusion even though I went away to sort of forget I’m a sick person, but my infusion pump follows me everywhere. While it’s a hassle and find myself often bemoaning it, I recognize that I am receiving life saving treatment. There’s a certain ironic beauty in it.
I suspect I’m managing a sacroiliac joint dysfunction. I’m used to chronic pain. This new pain is unrelenting and debilitating, thus I’m writing a blog post at 1:30 on the morning as I can’t sleep with the pain. It feels like I’m simultaneously being stabbed in the groin and left glute while also managing an ache I can’t describe. I do have a disc herniation at L5-S1. I suspect it has gotten worse. I’ve been doing constant stretching and yoga. The pain still brings me to tears as I simply question, “why??”
It’s an image of doing a yoga stretch. I’m crying not because the stretch hurt, it was actually that sort of good hurt, but the tears come from fighting a health battle I’ll never win. I can eat healthy, exercise, do absolutely everything I’m supposed to be doing, yet I’ll always be sick. I have multiple progressive diseases and sometimes that reality hits hard.
The good is I did get away. The respite at the beach was a true time to enjoy. Having a phenomenal job means I can take the luxury and as most of my work is done virtually, I can go away for awhile and just be, even with my laptop in tow. I do have a wonderful job that sometimes I think I can keep up, other times, I’m not as sure. Yet, I keep trying.
It’s a strange reality to be so sick and employed. I have been given a lot of accommodations to make it happen for me. For the first time in my life, I feel like my ideas and insight are useful and appreciated. I’m not afraid to speak up. If my employer doesn’t like the work I do, I’ll be told respectfully and with honor. It’s very different than how I’ve lived my whole life.
And for all of that, I suppose it’s good. I’ll keep plugging away at my job and life sometimes confident, sometimes floundering. I’ll take it for now making whatever this is I’m doing work.
Another blogger read my blog a couple years ago who reached out via email. It’s turned into a long distance friendship of equally honoring how hard life can be without the support of a family. I value his presence in my life regardless if we see things the same politically or socially. Sometimes those of us left wandering with faithful canine companions by our side only need to recognize some of us are “self made” even if it doesn’t mean we are millionaires or famous. We made it being loving and kind. Also a big happy birthday to him today.
These are my faithful canine companions slightly irritated to be woken at midnight, yet they still love me. Surgery decisions are hard. I will make them alone enlisting the help of a small few to get me through the recovery phase.
Trauma recovery isn’t about having family or even creating a supportive chosen family. It’s about knowing I’m a good person of value regardless of having an important job, good health, contributing hugely to the world… My recovery has been knowing just as people have touched my life, I have touched others. It’s all I could hope for. 😊
5 years ago tomorrow, I was immediately admitted to the emergency room at the local hospital for my legs going instantly paralyzed. It was a strange few weeks leading up to the day. I had a sharp pain in my right quad that was pervasive and unrelenting. I had dropped a lot of weight for no reason. My primary care was on standby if anything were to change.
I was in an appointment and was nearing 5 pm. My legs started tingling and thought I was losing feeling. I took a pause to call my primary care to ask what to do. She said, “go to the emergency room”.
I thought that was silly as I had to go to work the next day. I’d already taken time off for an emergency colon abscess hospitalization, more mental health days than I care to admit, and was just 10 days past turning 40 and was loving fitting in smaller clothes. I looked fabulous, except I had an electrical storm brewing inside.
I don’t remember much except falling in the parking lot to my car, getting to the ER where I bypassed intake and was surrounded by more than one neurologist doing all sorts of pokes, prodding, hitting all my reflexes, touching me with tuning forks, seeing if I could feel being poked with sharp toothpicks… all part of a neurological exam I have memorized these days and know what each one means.
I was admitted as soon as a room opened up. All I was told was I would be given the “MS” work up. All I knew was I was scared with pain that felt insane as how did I walk so confidently that morning to not feel my legs in the afternoon?
The MS work up was plenty of blood tests, a full brain/spine MRI, and my first lumbar puncture that I was curled in a little ball while they poked a needle into my spinal cord space to collect cerebral spinal fluid.
I got my diagnosis two days after admission—transverse myelitis. I didn’t care. I wanted to get back to work. This wasn’t real. My legs would just be normal. I was started on heavy IV steroids. Recently finding an old MRI report showed I had a lesion at the conus medalluris, which means I got lucky essentially.
To make a very long story short about that time, I left with a walker still questioning as I took a month off for near daily physical therapy. My 4th time landing in the hospital that year, I was given IVIG where the neurology team questioned if I had GBS or a combination of both. I remember the neurologist scheduling me a follow up appointment stating I had something seriously wrong. IVIG at least let me walk out of the hospital that time.
I kept falling and breaking bones. I couldn’t make the follow up neurology appointments as I was determined to keep living a normal life and making it to work.
Until a final broken bone broke me mentally of every shred of normalcy I was attempting to hold together with weak string and cheap tape. I gave notice at my job, sold my house, and went to live with my family.
A lot has happened in one day shy of 5 years that doesn’t make much difference for this post.
On the Eve of 5 years later, I’m technically considered a paraplegic as my right leg doesn’t work—ever. My left leg does sometimes.
I hate to be cliche in saying there’s gifts in illness as it’s sort of like a beautifully wrapped package that you open totally disappointed that it wasn’t anything you wanted, so it’s like a crappy gift.
But 5 years later despite the pain of chronic illness, the debilitating effects of physical disability, the just plain exhaustion of living life with the terrible gift inside that box, I’m celebrating the lovely packaging.
I have taken charge of my health by being committed to exercise and eating healthy for me. I can officially call myself a paid writer. I’m a commissioned artist. I’m training to be a yoga instructor. I live on my own in an adorable house that is being remodeled to be completely wheelchair accessible.
There have been painful relationship losses. there have also been wonderful gains. I have an amazing friend who truly is like a sister (from another mother, thank goodness for that!). With her encouragement, I did a sort of boundaries “smack down”. It wasn’t nearly as cruel as that sounds.
I basically realized I gave to the detriment of myself. When my time of need came a few months ago, all these people I gave to in honest ways were nowhere to be found. So I began asking to have conversations about my feelings. Some did. Some ignored me. Some expected me to just keep giving.
So a lot of people left. With each departure, an opening happened. I felt more lighthearted. New people walked and wheeled into my life as everything could become a touch less serious. I never gave up on people. I just wanted to talk. I also came to understand that some people I thought were friends didn’t have much time for me. It’s ok as some of them I value very much. Others not as much so I don’t pursue it. We all are allowed to make choices about who we have in our lives. I stopped begging.
I started having seizures a bit ago (the hypothesis is blood sugar related. Will be seeing endocrinology in a couple days), I had a decent concussion just over 4 weeks ago, and with losing my license and literally bashing my head in, I had to ask for help from people who would gladly give it without any conditions or expectations as I realized I had to and deserved to put myself first.
So it’s a happy 5 year anniversary to my paralysis birthday as I venture through life with some incredible people who don’t take everything from me leaving me feeling hurt and confused. I have my chosen sister who I love and a handful of people who don’t know a ton about me except “Lizzie lost her drivers license? I better get her out of the house”. Or others who give their time through calls or supportive messages.
So happy 5 years to growth, being able to ask for help, and having zero clue that losing my ability to walk would accelerate me to a place that feels ok even with the difficulty (mostly).
Getting better at “tree pose” with the help of my forearm crutches
I’m not talking about literal changing seasons, I’m talking about myself. This picture just happened to be from a work trip I took this last week to a different state that is changing to Spring.
As my life changes and twists and turns, it’s been full of complicated grief. My own physical health is going downhill. I can pretend all I want to as I peruse hiking pants for days with that nagging feeling in my stomach saying that that season is probably ending. I can think about buying a different car that will accommodate my wheelchair better knowing my gut instinct screams that I don’t know how much longer I’ll be driving.
When I started writing this blog, I really didn’t know what my diagnoses were. Now I know. While no one in my life really knows them all, some are more terrifying than others. My friend locally who would be here in a heartbeat to help with my medical stuff once we reconnected in the summer of 2019 and told her after not seeing each other for a handful of years, died of Covid. She would surprise me at the infusion center as she managed to care enough to memorize my infusion schedule. My other dear friend is sick with a little known disease called myalgic encephalomyelitis. We have had an amazing messaging conversation for 2 years. She’s recently declined considerably and as hard as it is for me, I know it’s harder for her.
When you choose to love a friend with chronic illnesses that are rare, severe, numerous, etc, you run the risk of watching them fade away. As I have watched chronically ill friends fade away, I watch myself fade away as basic tasks get harder and harder.
I’d love to blame it on being lazy or having a new job or not doing enough of this or that to be all I can for my health. I know it isn’t true. When more imaging and lab work tests come back positive in a negative direction, I can’t refute science. I can’t ignore what my body is saying.
I’ve had to protect my heart as it protects my energy. I’ve asked to have conversations with a handful of people in my life who I care about as my own needs change. Some have happened in quick haste that were quite rewarding as a conversation is a conversation. I know that sometimes the difficult ones can be scary. I told a friend that I have personally learned the power of listening and saying I am sorry or be able to explain myself.
I have dubbed a term “pathological giver” of myself, which means I give to the detriment of myself. I give until I’m so empty and depleted that when I wave my own white flag of “help”, my giving wasn’t a gift as it taught people that my own value is in what I can give. I’m not talking about material things. I have given of my time and emotional well-being that made my physical symptoms worse—a lot worse. That was my own issue in not saying no when I really should have. . I don’t believe in giving up on people. I believe relationships are made better by explaining and sometimes taking a short break. If I end up completely depleted from ignoring my own needs, I would want to give up on myself. I’m worth it.
In that being said, chronic illness, especially disabling ones have offered me some new opportunities and while I’m not exactly sure what that means yet, I can call myself a commissioned artist, I have a very part time job where I am able to support patients with complex disease states just as myself. Well, perhaps not the exact same diagnoses, but patients with multiple specialists, understand what it means to have infusions once or more a week, know the pain of shivering so hard in the middle of the night that it’s the most painful symptom of diseases like ours. They would know when I say “I have appointments with 3 specialists this week and a CT scan and the thought of it all is exhausting”.
Some people over the past few years have gone the opposite direction. Others have come towards me. I’m working to focus on those coming forward versus those that left. My trauma brain makes me want to focus on the ones that are gone. My healthy coping brain focuses on the enriching relationships I’ve gained. And while some are gone through death and others are fading through illness, I get it. It’s me too.
I continue to eat healthy. I’m exercising in a much different way. I engage in joyful activities knowing it will take me a couple days to recover. I’m being honest with my medical providers and trying to be so with myself.
Amazing opportunities have come my direction. Right now it’s figuring out if I can pursue them or do I make my life about taking care of my basic needs while throwing in some soul fulfilling activities. Being a paid artist has been a dream I’ve had since I was in my teens. So I guess it’s more about focusing on what’s feasible given my givens.
For now, I’m resting, rejuvenating, stretching, eating lots of vegetables, enjoying the sun from my backyard, and fantasizing about taking a birthday trip as fantasies can make you feel alive in a body that is progressively becoming more sick and disabled as it keeps the mind stimulated and can think back to the more carefree days when traveling wasn’t much of a thought.
This is my dogs trauma response each morning when I throw the covers off him to say “good morning!” I’m actually going to tell a serious story about a trauma response.
I will first say I have done a lot of healing on my complex PTSD. It’s more than I ever thought possible. When I don’t feel exactly right emotionally, I can figure it out and recognize my source and figure out where my thinking missed a few rational steps.
Something happened over the weekend. I really meant to sit down and think about why I felt so uneasy, but Saturday morning a dear friend died. I was going to go be alone on a hike Saturday afternoon and think about it, but I met a kind gentleman on the trail who was also disabled and accompanied me on my little journey. It was nice, just unexpected. Saturday night I went to get my tennis wheelchair adjusted and chatted with my disabled buddy a long time. Sunday I ended up seeing a friend I haven’t spent time with in awhile. Then Monday I had medical testing super early and went to see another friend. A lot of social time in general but especially when I needed to think.
I felt pretty bad by the time I got to my friend Monday as I wasn’t feeling fun. The pit of uneasiness in my stomach had grown so huge that I was having to work hard at being engaging and completely forgot I meant to think to myself and felt like I had a bad case of nausea and wanting to faint by the end of the day. I knew it wasn’t a physical problem for once, this one was emotional.
I was honest with my friend and told her I’ve been dealing with this low grade anxiety and dread for a few days and didn’t know what it was about as it’s not typical for me.
She started to ask me a couple questions just based on knowing my mom was a severe alcoholic. I told her I have a problem thinking everything is my fault, but I’ve gotten past that one.
So she asked me, “what did your mom do when she wanted to punish you?” I said she would withdraw and ignore me sometimes for weeks on end. I figured out that was where my anxiety and unease was coming from. You can call me awful things, but the silent treatment will spin me out each time.
Does it mean it’s realistic to what’s happening? Not necessarily as the situation doesn’t matter. The most important part was that I had a friend who was willing to help me figure it out.
As I drove home from her house, my stomach felt better and my anxiety was gone. I could listen to music on the hour drive home and enjoy it again.
It’s really unfortunate if you ever had to live in a situation where your view of the world and self gets changed because of someone else filling your head with negative garbage. I’m grateful I’ve learned a lot about life being ok in spite of all that.
Even though it popped up, I knew I’d be ok as not being ok is part of being ok. So I thought a lot about it today, rested, and validated I’m ok to not be a big bundle of smiles constantly.
I’m always trying to learn lessons from people I meet. My friend reminded me gently, then even more strongly that “maybe people come into your life Lizzie, to learn from you”.
The holiday season in the US is rapidly approaching. It’s always a mixed time for me. I didn’t grow up in a large family with much tradition about anything. My dream was always to have a loving spouse with 10 children AND be the first female president of the United States.
None of that happened. I remember hearing as a little girl (can’t tell you the source) about how odd and weird spinsters were and you definitely do NOT want to become one. In case you aren’t sure what a spinster is, it’s an older lady who has never been legally married.
So I didn’t get the large family or the presidency, but I guess I got spinster status. I kind of like it. It’s unique and spinsters were always a bit odd. I don’t find myself odd in any strange ways. I don’t have a tv that’s even plugged in or functioning, but I do have a queue of too many books to read. I’m probably overly attached to my dogs and entirely too independent, but I love those things.
People are already beginning to stress over the holidays. There’s the usual business that just gets people worked up about perfect holidays. Many are trying to figure out how to see family safely in a time of Covid.
I guess spinster life for the win! I’m hoping to put a lot of earnest effort into my book. I have some new friends who might invite me to celebrations that I will have to choose to be a part of or not depending on size and what types of precautions they are taking.
Sometimes it’s hard to go through life without a huge family, but I have some great people who look out for me. I’m blessed I don’t have an irrational fear of doing things alone.
If the right person falls into my life, I have my screening “gang” as a friend and I were joking a week or so ago, we are like bulls. We see the red flag waving and run straight for it to be gored over and over. My gang will run a panel interview to make sure they are an appropriate fit!
Despite continuing to face too many medical decisions, it’s also been a time of freedom. A “friend” chose to walk out of my life. It was one of those kind of moments of relief as I was pushing myself to fit in a mold that she needed me to be in that wasn’t me.
I am not a fan of cliches, but I do believe that when one door closes, another one opens. Sometimes the new door doesn’t open quickly. This time it did. This physically healthy friend (as far as I know) shut the door on me. I was trying to adapt my disabilities to fit her able bodied ways. It was hard. I was also trying to fit myself in a spiritual mold she chose, not me.
Now I’m getting more and more involved in the disability community and feeling grateful for the understanding it brings. My job advocating for people with complex illnesses makes me feel not so alone. While I don’t share a lot about my personal complex illness journey with patients, just hearing them chat about what their lives are like gives me a sense of belonging.
Spinster life. Huh. I also wished I would never be in a wheelchair or be diabetic as I could NEVER poke myself with a needle. While I’m not diabetic, my life entails 5 needles a week minimum. Darn karma with my sparkly pink wheelchair and everything else I couldn’t ever be.
In becoming all those things, I have a richness to my life that no material thing, specific belief, 10 children, a high profile job, or any of the things I thought I would become or tried to mold myself into, I never thought possible.
When I say “richness”, I don’t mean perfect or constant happiness. Richness is in acceptance that it’s hard. I don’t have to fake a smile, but when I do smile, it’s genuine and real as I certainly live a life paved with sparkly pink and several crashes in between to make it interesting.
My blog has been taking a backseat to a lot. I started a new job that is so exciting and such an honored opportunity that I have spent plenty of energy there. Granted, a lot of my work is done from home, I traveled last week and just had two very important and active days. The picture was watching the usual gamut of training videos that most new jobs require, which my dog, Napoleon found this one very interesting. I was asleep by 4 pm today.
In working, I’m trying to discover a new normal. How do I work, keep up my anti inflammatory diet, weekly infusions, manage tons of doctors appointments, regular house stuff, exercise…? I’m figuring it out. It’s going fairly well, but I can tell my next 3 days will have to be full of rest.
I’ve also had a ton of momentum to get going on my book. I read an excerpt of it to 3 of the company’s more higher ups yesterday (well one was the president!) and all 3 were very touched and moved by it. As a result, I’ve been asked now to get approved for hours to blog for them as another part of my job duties.
Part of finding a new normal has also been realizing and truly accepting that I’m doing amazing work. I’m appreciated, what I do is appreciated, how I’ve chosen to live with the chronic illnesses is REALLY appreciated, and I feel confident I’m not going to fail.
The company so much doesn’t know about my childhood trauma. My direct supervisor knows just a bit as we spent a lot of time driving where she told me some painful truths, and I chose to be calculated in what I said mine were. She could grasp enough.
Yesterday, they filmed me talking about my history with illness and the trajectory it took. My direct supervisor walked with me as I wheeled out to my car. She said, “I just want you to know I was so inspired spending those two days with you, but I can’t go on about it now as I’ll cry”. She has two disabled sons and even though their disabilities are really different than mine, she was surprised how independent I was.
She made me laugh as after she helped get my belongings into my hotel room for our work trip last week, she reminded me to close the inside locks in the hotel room door once she left. I said to her, “I’ve got this. Remember I went to Thailand alone 2 years ago?” She said, “well, I just have to mother you a little bit”.
And I thought about being mothered those two days and how it felt slightly strange. My own mom never cared. If she were alive today, she would be telling me I was going to fail at this job as she told me I failed at everything in life no matter how amazing I was.
This mothering I realize was normal. I had to go into a store so she asked if I could make it ok. Well of course I can! I’ve been taking care of my own needs since birth it seems. She asked so many questions about my comfort with temperature, if I needed to stop to stretch, if I needed so many things. It made me feel kind of bad.
Then I realized that this is my new normal too. It’s not only about conserving energy, being proud of myself, understanding my life wasn’t a failure, but it’s an acceptance that mothering in a nurturing way towards me is needed and deserved.
Today, the PR/marketing director came to my house and filmed my doing my yoga, my art, my dogs, and we went for a short hike outside where he filmed and took over 500 pictures of me. He’s very particular about how things look with shadows and such. I wasn’t the problem, but I also felt like I won when he said, “now that’s a money smile” and was so excited by my smile again and again. After years of being called ugly, awkward, fat, stupid, and could go on and on as I’ve already figured out that isn’t true, I’m holding onto “now that’s a money smile”.
So many new normals. I think about the story of “the ugly duckling”. The duck wasn’t ugly. She hadn’t found her place until she realized she was actually a beautiful swan.
A job might not fulfill being all my place, but it feels so right.
May your life, no matter what state of chaos, illness, or triumph be allowed to have moments like mine. Simply making the choice to show up with more and more conviction landed me a phenomenal job and some true feelings of “I did it. I finally did it”.
This was my work from home professional dress. My fuzzy socks matched my skirt. I have standards!! Needed comfort after a frightening neurosurgery appointment.
Not much to say today. Had a whirlwind and absolutely wonderful business trip that left me exhausted, but the work email kept dinging that another had come in as we are filming a sort of mini documentary of my chronic illness life next week and how I have found meaning. So the work continued today from my bed.
I’m beyond proud of how well my business trip went. Any normal person would be tired. I know I am. Not much to say, but I saw this and resonates so deeply.
I have genuinely given my truth to 2 people who still stick by me. I’ve asked why so many times. It’s as simple as they get it. Both manage a chronic illness or chronic pain and have had a significant traumatic event(s) in their lives. I feel solid with them. They make me feel like I belong. I’m never “too much”. I’m loved whether I feel well, crappy, joyful, sad, scared, questioning just “why??”, and everything in between.
Hope this strikes trauma survivors as much as it did me as I’ve learned to ask for help, but I’m still figuring it out. When no one teaches you all the life skills at the appropriate developmental ages and then betrays you so much as a little child, the ground often doesn’t feel solid beneath your feet and that’s when you ask for help to normalize it.
I am so thankful for my 2 daily. I don’t even question if they will go anymore. “Actions speak louder than words”, but for these two women, they have done both. It’s hard for me to use the word “love”, but I love both of these friends.
And for those who haven’t had to experience the kind of trauma that makes one this way, bless you. Please live with gratitude in your heart as it’s hard
I also blew the socks off my new job and not feeling like the failure I was trained to believe I always was.
Stay. Go. I’m ok. I know as I appreciate my own strengths and gifts, my life will be more and more enriched. Just two days of working in a field that is so meaningful built my armor up. Not the armor to keep people away, but the armor to know I’m strong and to take under the strength of that the others who are hurting or fear being abandoned.
It happens. We survive. We eventually trust as we find that tiny tribe that sees our worth. We take our flickering light that burns brighter by making that tribe to show others they can do it too. I’m there. I haven’t always been perfect, but I hate perfection and just grateful for so many who were so proud of me today. I love so many.
This isn’t a subject I talk about much as it’s painful and sensitive. In January of 2018, I returned to where I grew up after spending nearly a year with my family after coming down with transverse myelitis, using all my FMLA time at work, and having no way to support myself.
As I was making arrangements to get home, my little 10 year old told me on the phone, “mommy, I want to kill myself”.
I wasn’t even sure what to think. Did he feel this way because I had been gone? Was he lonely? Did he never think he would see me again? All I remember was telling him to hold on and that I would be home soon. It made him feel better. He promised to hold on
I made it home in January of 2018. He and I had some glorious days of being together after nearly 6 months apart as I worked on figuring out my life. I felt free. I felt like my new trauma healing had come full circle and that everything I had gone through was worth it.
Within a couple weeks, my son started telling me some horribly abusive things that had been happening to him. For about 4 months or so, I nearly exclusively took care of him while an investigation was underway about his abuse accusations. I held my little boy as I drug him to a handful of social workers, always telling the same story and always reassuring him he was brave as he felt scared.
He would wake up in the middle of the night terrified. He had become that brave child that was strong enough to speak out against what happened to him. He described what I can only call psychological torture.
The investigation happened. The person was substantiated on the charges, which is a fancy way of saying “guilty”. My son felt safe. I didn’t tell him about the substantiation verdict. I simply promised I would keep him safe.
After he had been with me a week when the investigation started and had left the other house he lived in, I got an email from his teacher stating she wasn’t sure what I had done, but my son hadn’t had any bathroom accidents at school (he was having them daily and just so it’s noted, older kids who have poop accidents without a medical reason are usually a sign of abuse. She was also amazed at how much his grades were improving as well as behavior).
It was a really hard time for me. We didn’t have a stable place to live as the vacancy rate in my city was next to nothing. While he was at school, I spent the days at the doctor having numerous tests run knowing I had neurological problems as well as autoimmune diseases that had yet to be diagnosed as those are sneaky problems to give proper names too.
I was tired. I was bone crushing fatigued, but I was there for my son. Was I perfect? No, but is any parent perfect, especially under those circumstances? I was also intensely angry for what happened to my son. He was confused and while he should get 50 gold medals for how composed he stayed during that time, he rightfully got angry too.
After a period of time, the guilty charge was overturned. He left my near full time care to go back to his other house. I just submitted. I was sick. I spent 4 months of my life caring for that precious angel of a child who is neither biologically or legally mine. I was also out of money.
Sure, I saw him with some regularity, often not as I didn’t feel well and there was a lot I couldn’t deal with. My son saw me change though. The old saying “actions speak louder than words” truly meant something to him. He told me how strong I was. I said the same to him. I was growing as a person. I was growing as a mom.
I was expected to say sorry to the people who were found guilty of abusing him. I did the best I could to apologize and own my part. No one apologized to me. It was plenty of accusations against while my son would still tell me late into the night on nights he spent the night at my house about the continuing psychological torture he said he was going through. I told him he had to tell someone at school or an adult as I tried to protect him and couldn’t. My son watched me be vilified. He said he would never tell again as he didn’t want me to be hurt.
I realized in those times that my son took the responsibility of my losing people, and even worse, getting really sick as his burden. I told him over and over that I was an adult as his mom, I protected HIM.
He continued to tell me about being yelled at and called awful things and horrible things being said about me. I was really sick at this point and so angry. I thought about leaving his life so he wouldn’t have to live in two worlds that were so different. He was struggling hard. I even wrote to someone about it as as much as it was destroying me, I was watching my son being ripped apart. He had been brave for years in standing up for what he knew was the truth of me. Instead, I asked to go to a 3rd party to work out my issues with the other adults caring for him. My request wasn’t flowery and friendly and sweet smelling, but neither was what my son was saying.
I knew on some level it didn’t matter. I knew I couldn’t live like this, but I knew my now 12 year old son couldn’t live like this either. I tried to find parenting books to give me advice. Therapists were useless in helping me, and trust me, I tried.
So a day or so after I sent the email, I was blocked from all communication from my son. I was removed as a parent from the school. The significant adults in his life were told I abandoned him. Some were told I was too sick to be a mom so I chose not to.
The unfortunate thing about my situation is that I don’t have any biological or legal rights to my son. I wasn’t part of the adoption, which is too much to explain right now. It’s nothing I did wrong, it just has to do with unmarried couples not being able to adopt together.
It’s been over a year since I’ve seen my son. I had a couple phone calls with him. We texted for a short time. There’s a system of power in place to protect the other adults that no longer let me see him.
I was a licensed foster parent at one point. Even abused parents are allowed to have visitation with their children. I was instead subjected to a sweeping judgment that at the drop of an email, I couldn’t see my son anymore. I was found guilty of I don’t know what without a trial.
It’s called parental alienation. No, I wasn’t always right. No. I didn’t make perfect decisions. Sadly, the other adults in his life certainly didn’t either. Maybe they reflect on it? I don’t know.
I do also reflect on what I did right. I reflect on the loving and giving heart my son has that I will take plenty of credit for. I look at the loving projects he did at my house like teach himself to loom knit off YouTube and had a plan to give out his homemade hats to homeless people this past winter. I still have the beginning of a children’s book he started writing and illustrating about a family that had fallen on hard times, but a huge meteor had landed in their yard that was going to change this family’s life.
Some people might pray by closing their eyes, folding their hands, and directing their prayers to a certain god or deity. I personally have Tibetan prayer flags in my backyard and the idea of them is that you say your prayers or good intentions and as the breeze blows them, those good intentions are set into the world going to their intended recipient or the greater good.
A piece of my heart has shattered having my son gone and the story you would hear from the other side is probably an ugly account of what a horrible person I am as that’s what the texts have said.
None of that matters to me except my sons well being that I have no way of knowing. I realize that as I slowly pick up the pieces of my shattered heart, I take those billions of shards of love to set them onto my prayer flags to be sent to my son so he can feel, maybe just a little that his mom still thinks of him, loves him, and wishes more than anything in the world to hug him when the breeze hits his face.
I’ve missed over a year of his life. There’s no speculating if he’s doing well, surrounded by love, making good choices, surviving, thriving, but all I know as I’m minutes away from my official official start date of my new job that is an absolutely amazing opportunity that I work to be a strong person, woman, mother, so if I’m lucky enough that he ever enters my life, he will see a mom who kept trying even though I honestly feel like giving up often because of this situation. It’s a pain that can never be explained.
If you are an alienated parent, whether a mother, father, or someone who was extremely significant in a child’s life to have it taken from you, I’m sorry. Feel free to email me. I won’t make your story public or ask you to be an activist. There’s simply power in knowing you aren’t alone, and I’m frankly exhausted from being silent about this.
One of the final things my extremely insightful 12 year old said to me just over a year ago was, “mom, you are Wonder Woman. Your shield is made up of your heart and your soul and that’s why you’re so strong”.
So no matter what’s said of me or the ramifications of not being silent anymore, I will hold onto his words as directed towards me. I certainly hope he’s found someone to love like a genuine mom again and says such profoundly beautiful things to them, but regardless if he does or doesn’t, those words were meant for me. I can send him loving words about his strength to flutter on the breezes in my backyard
The title of this blog is not my quote. Feels like how life can be. I have a ton of physical pain and little energy, so lucky you, you get a screenshot from my Instagram post. So much happening, except it’s so complex to explain. Hopefully it will be the stuff for books. 😉