My mother is going to hell, and I’m fine with that

I’ve shied away from sharing much in the way of many details on how I grew up. It’s become apparent to me though that, like with my illness journey, I need to share as much as possible. It will help me to explain more about myself and my illnesses in the long run.

This isn’t just for me, but for others who have lived through similar situations. They need to know they’re not alone.

I was born to a single mother who was not ready to be a mother, as many mothers are. The fact that she was raised in an abusive household herself does not go unnoticed… and yet, it is not to be seen as an excuse either.

I remember being beaten during potty training for having accidents. To this day, I hate going to the bathroom when people can hear me because I feel as though I’ll be judged or harmed. Yes, I realize I’m 27. My brain doesn’t care.

My sister was born before I turned four, a product of a relationship gone wrong once again. My mother went into a deep depression for which she never got treatment post-partum. She was horrible to Kelsey from the start, ignoring her cries out of spite while pampering me. She tried to make me in her image, trying to dye and perm my hair by the time I was four years old.

By the time I was in kindergarten and had gotten sick, this gap in treatment grew. There is always a gap between a very sick sibling and the others, but this was different. My sister’s maladies were ignored altogether. Since my mother believed that the MMR vaccine caused the onset of my SJIA, neither of us received other vaccines under my mother’s care. From the time I was seven on, neither my sister nor I received dental or medical care of any kind – not when we had abscesses, wisdom teeth, or more.

That alone is enough to warrant the way I feel about my mother, that she would medically neglect an SJIA child… It gets worse.

In addition to the neglect, my mother and grandmother both beat my sister horribly. I’ve mentioned a few times incidents with a belt and my mother. They used her to do things like deep clean the bathroom by giving her positive feedback only on those things.

To add to that, they “ran” a daycare. When my mother was home, she did crafty things while I wound up molested by one of the other children. My sister suffered this repeatedly. As a result of all this, my sister acted out a lot. Negative attention was basically all that she got after all.

Oh, and we didn’t go to school. I was pulled out about a month into first grade and my sister never went… not until fourth grade. We didn’t get social skills and interactions with children our own age. By the time we were allowed to go to school (in my case, again), we had missed out on the foundations of an education.

They’ll tell you, my mother and grandmother, that they taught us.

They did jack shit.

I was given quizzes based on shows on the History channel for the first few months, written by my mother… who also had me write a paper on why Hitler was an amazing man.

I’m not kidding.

After that time, she stopped helping and I did everything to TEACH MYSELF from history to math to playing the piano. I did start in eighth grade doing very well, though interacting more with the teachers and smart kids than others. That was fine for me at least.

My sister was bullied constantly. She started speaking with a counselor about it and spoke too much about other things for my mother’s liking. We were told that we were going to be taken away from mother if sis kept speaking to this woman.

It’s a shame because it really did help her.

One day, my mother had me come with her to visit her boyfriend at the time two hours away. It’s worth noting that this man was married at the time he started dating my mother. She found out within five months and continued to date him, using the wife’s endometriosis as an excuse to keep going (which is just such bullshit as someone who knows and loves to many with that disease). He made a million jokes inappropriately about me and to me in front of her and she thought nothing of it.

This wasn’t the first time we’d visited, but my sister was at a sleepover so it was the first time I would visit alone with my mother. By the end of the night, she wanted to stay there. Instead of staying at his house, my mother got a ONE BED hotel room.

She had sex with him right next to me, without giving a shit about whether or not I was asleep.

I laid awake, freaked the fuck out and wanting to just die.

It got worse.

He sexually assaulted me.

It took me six weeks to tell her, long after bruises had gone. Her initial reaction was to question if I even knew what I was saying. That couldn’t have happened.

I laid awake that night too, crying again because my mother failed to believe me.

She kept fucking him long after she knew.

Sis saw him try to kiss me at one point when mother forced us to stay the night there again, this time while the wife was there with an elaborate story about being a coworker’s family. Only when sis shared did mother believe.

She still kept treating us like shit. The neglect kept happening. The emotional abuse kept happening.

At one point, my grandmother tried to hit my sister in front of friends I had. That gave me the strength to grab the phone and dial 9-1 – threatening to finish it off. Of course, that was to her an overreaction.

See, my grandmother was the worst offender in number of times she abused my sister. Once, I helped hide sis when we were very young. Grandmother asked me why sis was scared and I said something along the lines of ‘because you’re big and fat and scary and hurt her a lot.’ That was met with the same incredulity.

There is much more I could share especially into my teenage years – how my mother’s current husband and her commit fraud against the state of Wisconsin, how they’ve broken laws and then been upset when people rightfully need help, how this man feels the need to prove that he has a penis to anyone who might challenge his ideas, words, or thoughts.

This man, a tea partier in nature, has pushed my mother to live up to the worst of her potential. She began to be emotionally abusive even more to my sister’s daughter shortly before sis & fam moved out of that house.

I refused to see sis stuck there. I refused to see Missy grow up as we grew up.

So what does this all mean for right now?

I have 10+ medical conditions, almost all of which I’ve had for my entire life but am just finally getting taken care of. I’m dealing with structural issues with my body that could’ve been prevented, as is sis.

Sis and I need thousands upon thousands of medical and dental treatment. I’m lucky to have a good job with adequate insurance. Sis does not.

We both need and have needed a ton of therapy due to our anxiety, depression, and post-traumatic stress disorder from growing up with our mother.

This is a post that is all over the place. I know it may not make sense to some or all. After today, after sis needing emergency dental care that will cost far too much for her, I couldn’t wait anymore. I needed to get this out and get so much of this told.

If my mother is reading this despite the cease and desist letter sent to her, I hope that she knows how horribly she screwed up. There are many things I hope for her, but they’re all negative and not the types of things that one should share aloud about another human being – even if they’re completely inhuman and inhumane in all action and thought. I know that I’ll never talk to her again, but I knew that when she uninvited herself to my wedding. I also know that she won’t care about anything I say, using that same old adage about me exaggerating and misunderstanding everything.

But I know the truth about things that happened. Now, you do too.

If you’ll excuse me, I have cheesecake and wine to finish.

The Dark Knight Rises

As I write this, I’m enjoying The Dark Knight Rises, by far my favorite Batman movie. I’ve written a little before about how Batman is such a great metaphor for fighting our illnesses, and this movie just proves the idea further.

Towards the end, Bruce is stuck into a pit – a jail supposed to be in a Middle Eastern country that no one can escape due to the nature of it being a pit. People can make the climb with a rope to hold them while they fail and fall back down into the pit.

It’s not ideal for anyone to escape, let alone Bruce in the state he arrives to the pit in. His body is broken literally, with vertebrae sticking out of his back. Other bones are broken and cartilage is missing from his knees and elsewhere.

He tries a number of times and fails, until a doctor gives him the advice that he must fear death again. In order to do this, he must climb without the rope – meaning if he fails, he will perish.

Bruce accomplishes his task, doing all of this while training his body to do this.

Eventually he makes it back to Gotham, fighting Bane who he eventually does incapacitate, leading to this great line from Bane: “I broke you. How have you come back?”

The whole exchange between Bane and Bruce/Batman is not unlike that I’ve had with my illnesses. I have fought hard, exhausting myself against something I cannot beat. I have been broken and down, having to learn how to do things all over again and – once again – starting PT with the very basics. I have climbed out of my own jail pit and returned stronger to fight my foe.

That doesn’t mean I always have a Batman mentality with these illnesses. Sometimes, with my anxiety, depression, and PTSD especially, I hear the negatives about myself. I tell myself how horrid I am, how unworthy I am of the things I’ve participated in. My mental health issues convince me that they are the necessary evil, that they like Bane are here to liberate me from believing in false idols.

It’s amazing the parallels one can find with Batman stories and our illnesses.

Here are a few of the others quotes from this particular film that resonated with me:

Bruce Wayne: Why didn’t you just… kill me?
Bane: You don’t fear death… You welcome it. Your punishment must be more severe.
Bruce Wayne: Torture?
Bane: Yes. But not of your body… Of your soul.
Bruce Wayne: Where am I?
Bane: Home, where I learned the truth about despair, as will you. There’s a reason why this prison is the worst hell on earth… Hope. Every man who has ventured here over the centuries has looked up to the light and imagined climbing to freedom. So easy… So simple… And like shipwrecked men turning to sea water from uncontrollable thirst, many have died trying. I learned here that there can be no true despair without hope. So, as I terrorize Gotham, I will feed its people hope to poison their souls. I will let them believe they can survive so that you can watch them clamoring over each other to “stay in the sun.” You can watch me torture an entire city and when you have truly understood the depth of your failure, we will fulfill Ra’s al Ghul’s destiny… We will destroy Gotham and then, when it is done and Gotham is ashes, then you have my permission to die

Bane: Ah, yes… I was wondering what would break first… Your spirit, or your body?

John Blake/Robin: Not a lot of people know what it feels like to be angry, in your bones. I mean, they understand, foster parents, everybody understands, for awhile. Then they want the angry little kid to do something he knows he can’t do, move on. So after awhile they stop understanding. They send the angry kid to a boys home. I figured it out too late. You gotta learn to hide the anger, practice smiling in the mirror. It’s like putting on a mask.

#raeganswish #rake – pass it on!

It’s been a hard year for the SJIA family. We’ve lost some fighters, and nearly lost others. Raegan has had a particularly rough year with long hospital stays, various infections, and complications from her illness.

She was granted a wish from Make A Wish! Part one of Raegan’s wish is to head to the Caribbean, which she’ll do soon, but part two? Get everyone participating in Random Act of Kindness Everywhere (RAKE).

Please help do what you can to support Raegan! I paid for breakfast for the person behind me the other day and had the checker hand the card below to them.

What random acts of kindness will you commit today?

 

What is #MedX doing in Wisconsin?

Don’t worry – I promise MedX will stay in sunny and amazing Northern Cali!

Since I’ve returned from MedX, I have presented information on and from the conference to people in quality, patient experience, and the docs I work with here at the University of Wisconsin.

The first presentation didn’t go as well as I had hoped just because I wasn’t prepared for some of the questions. On the other hand, I know I’ve made an ally in one person involved in patient experience due to her personal life living with a chronically ill partner. We commiserated on unkind doctors, lack of emotional support, and more. I even brought up #ChronicSex which she was pretty stoked about.

Side note: they’re hiring for her boss so if you’re interested, hit me up.

I’ve been asked to write something up for the healthcare wide internal communication here, which is pretty badass.

Perhaps the most rewarding thing was to speak to the docs I work with about all this. Very few of them knew previously how active I’ve been in health activism and, I think, it was refreshing for them to know they have patients on their side.

I discussed handing out resources for patients and brought up tags on social media that are well known and not always illness specific like #ChronicLife. I brought up connecting new patients with local chapters of national disease orgs like the Arthritis Foundation – something that seemed pretty well received by my local AF peeps and our docs. I even brought up this idea that came from my group in the Designing for Behavior Change workshop on some way to certify patients in their illness as well as mentoring/leadership so you always have a local patient that might be able to help others.

I’ve never seen a room so awestruck before over me as these docs I work with every day.

It was awesome.

The organization-wide stuff will take a while to get going, to push through, and it’ll take more allies. It seems, though, that my docs and the clinic managers really are embracing some of these ideas.

I can’t wait to see what the future brings.

Death

Death is a difficult subject to approach for many. I think a lot of it has to do with beliefs or fears about what happens to us and the loved ones left behind when we pass.

Last October I was lucky enough to visit a medium. It was an interesting experience. I’m unsure how much some of the changes the medium asked me to make have really improved my life, but the visit gave me a new outlook on things – and helped me feel more comforted by the loved ones I’ve lost, namely my great-grandma Katie Mae and Laura. They didn’t have much to say via the medium because, as it turns out, they communicate directly with me a lot. Laura shows up in random butterflies when there shouldn’t be any, and grandma gives me random hugs and smells we loved.
If you’re thinking about seeing a medium, make sure to prepare.
A mortician recently wrote a piece on why it’s important to start thinking about death early on – and why death isn’t something to be feared… though some things associated with spreading a loved one’s ashes somewhere could be.
When I die, I want my funeral or wake to be a party. I want people to enjoy each other’s company and love each other. I love the idea of incorporating an ice cream truck or my favorite cocktails into that supposedly somber day. The last thing my loved ones need is more mourning and grief displayed publicly.
And if I die before Theron, he’s gonna need love, hugs, dad jokes, and support.

Self-Care Sunday: eating well with illness

It seems like every few weeks I get this thing where I can’t really eat. I just have no appetite. The first time this happened I was six… and lost a lot of weight in the middle of already being tremendously sick at the time.

You could see my bones. It was bad.

The most recent event happened to coincide with starting kineret and getting back from the JA conference. I’m not sure if it was from starting the drug, the traveling, or just because I hadn’t been on meds for a while. My guess would be the latter because my theory is that I get swelling somewhere in my digestive system because I often feel bloated too.

Next time this happens I’ll definitely pop off to the doctor.

But in the meantime, how was I supposed to eat and get any energy? I stopped by Whole Foods and took a gander, finding Probar Base. I already had peanut butter (and have since switched to a healthier PB – Peanut Butter & Co’s Smooth Operator) so I figured I should try it.

This dairy free meal wound up being over 40 grams of protein which was great!

Living in Wisconsin, being dairy free is a little more than awkward. I’ve decided that I’ll do minor dairy but try to do so at home… mostly because I have a lactose intolerance and it sucks. I’ve found I can tolerate dairy up to a certain point – or more, depending on the brand. There’s a local farm that we get our dairy from and I’ve never had a problem with it.

I wasn’t a huge fan of that shake, so I’ve switched to rice milk with my coffee instead.

When I can’t eat a lot, I try to make sure that I get a good amount of protein so I can fuel my body. I tend to supplement with things that I love to eat but don’t always let myself eat then – potatoes, lots of sweets, etc. Getting enough calories means more energy – and hopefully not falling asleep at work!

What are some things you do to make sure you eat well even when you aren’t feeling the best?