My daughter, Harper, is currently four (she’d want me to add that she’ll be 5 in July). She was barely over 3 when POTS came out of the woodwork and rendered me suddenly disabled. While I, of course, hope that one day there will be a cure or that I’ll snap out of it as quickly as I fell into, the chances are pretty good that I will be disabled for the rest of my life. That means that my daughter will really only remember me as her “sick” mommy.
She probably won’t remember all the dance parties that she and I used to have, singing and spinning around the house. She won’t remember the tickle fights or how I would lift her up to make her fly like an airplane. She won’t remember how I used to drive her places while the two of us would sing at the top of our lungs. She won’t remember all the meals I used to cook or all the times we would swing on the swings and slide down the slides. Instead, she’ll remember me as the mommy who can’t pick her up, who often has to sleep, who is always at the doctor, and who can’t run and play with her anymore.
Her main memories of me will be of me and my illnesses. That’s a heavy thought for me, however, that’s because I still cling to the notion that the old me was a better version of me. I mean, no doubt being in less pain was certainly better, but I’m still a valuable human being. My value didn’t decrease because I’m disabled. Yet, I often beat myself up for the fact that I can’t do all the things I used to be able to do with her, and that I can’t teach her everything I’d hoped to teach her. However, that doesn’t mean that I don’t have valuable lessons that I can teach her. I believe that there are many great lessons she can learn from watching me battle with my illnesses.
1. People are Disabled
I know that seems like a really obvious statement that no one should need a lesson to learn it, and yet, our culture dismisses disabled people all the time. How many of the current shows on TV have disabled people in them? What about movies? How many shows or movies feature disabled people without a plot dedicated to them overcoming their disability?
The times that we do see a person with a disability in TV, film, or books, more often than not it’s someone who is paraplegic and bound to a wheelchair. That adds to the narrative we have in our culture that says only people in wheelchairs are disabled and that if someone is in a wheelchair then they can’t use their legs. We aren’t shown various types of disabilities. We’re shown that the person who uses the wheelchair in the store but then stands up out of it in the parking lot is a faker and a conman/woman. That’s why citizens are proud to rush over to the girl walking to her car in the handicap spot and scream in her face. They believe they are standing up for disabled rights because they don’t understand that there are so many ways that someone can be disabled.
My daughter will know. She will know that disabilities come in all shapes and sizes. She will know that, for some disabled people, it can be perfectly normal to use a rollator one day, walk on their own the next, and then end up in a wheelchair for a week. This is normal in her world. She will know that even if someone is in a wheelchair, you can, and should, still look them in the eye when you are talking to them. You can, and should, talk to them like they are whatever age they actually are, instead of assuming all of us are six years old. She will know how to treat us like the human beings we are, which is a lesson that a lot of people don’t seem to have learned yet.
Compassion is the ability to recognize that someone is suffering and having a desire to help relieve their suffering. It’s a super important emotion that drives most charities and fundraisers. It swells in the heart of every caretaker. It is what inspires people to take action against wrong doings and to march in the streets alongside marginalized groups, even if they themselves aren’t marginalized.
The disabled community needs people with compassion. We need doctors, nurses, hospital staff, social workers, lawyers, employers, friends, family, and even just random citizens, with compassion. The other day I went to my daughter’s ballet recital and two of the ushers showed me great compassion. They helped move chairs around so that my wheelchair would fit in. They saw me stand up out of my chair and didn’t flinch. One even offered me his arm for support as I walked down a step. I am so grateful for their kindness, but the fact that their behavior was surprising to me shows how rare it seems to be.
We need compassionate people who will stand (or sit) with us as we fight for healthcare, accessibility, medical research, social security, and acceptance. We need compassionate people to love us and offer assistance without judgement when assistance is needed. Through watching me struggle for healthcare, or have difficulties getting into buildings that aren’t up to ADA codes, or suffering from the cruel gaze of an unsympathetic stranger, I hope that Harper will develop such compassion. I hope that she will use that compassion to stand beside any group that is being marginalized and oppressed and help fight for their rights, because she has seen what it is like to be pushed aside and forgotten.
Empathy is the ability to feel someone else’s suffering. It doesn’t require you to have gone through the exact same situation. It’s recognizing the emotion they are feeling because of their situation and knowing what that emotion feels like. It’s seeing that someone is suffering and recognizing that you, too, have suffered and you remember what that suffering feels like.
You’ll notice that the definition of empathy doesn’t involve fixing problems in any way. Many of my problems can’t be solved by anyone else, except maybe a doctor who stumbles upon the cure. It’s a natural instinct for many to try to fix problems they see, but, no matter how good the intentions, people telling me to try this supplement, or that doctor, or such and such diet, or whatever exercise aren’t helping fix the problem. Trust me, I know more about my conditions than most doctors, so it’s unlikely that someone who barely knows the name of my conditions will have an answer for me.
These suggestions come from a good place, but they aren’t what I need from people. I need people who will sit with me while I cry, who will agree with me when I say “this sucks” instead of telling me to “find the silver lining,” who will stay beside me while I writhe in pain so that I don’t have to be alone, who will laugh with me as we joke about how much this all sucks, and who will just listen to me when I just need to vent. I am very fortunate to have people in my life who do this for me. I feel incredibly lucky to have people who want to be able to fix my problems, but also recognize that they can’t and will instead sit with me through the storm.
Harper has already begun to learn to do this. When I fainted in the kitchen one day, Harper came over to me and laid down next to me. We stayed there, talking together, until I was strong enough to stand up again. As much as I want to shield her from the darkest parts of my illnesses, I have a face that won’t hide any of my emotions. And maybe that’s a good thing. Maybe seeing the struggles as well as the good days will help her to become a more empathetic person. Maybe they will teach her how to sit with others as they ride out their own storms, because no one should feel like they are going through a storm all on their own.
4. Sometimes You Lose
It’s a hard lesson to learn in life, one that no one really prepares you for: sometimes, even if you do everything right, you will still lose. We’re taught that as long as you work really hard and stay the course, you’ll eventually win. You may lose at first, but that’s because you weren’t working hard enough yet. It’s all part of the American Dream, pull yourselves up by your bootstraps, fairy tale that we hear over and over and over again.
Sometimes, no matter how hard we work for something or how much we want it, we won’t get it. We will lose. Sometimes, no matter how well we take care of our bodies and how hard we try to stay healthy, we will get sick and never get better. It’s scary to think about because it means we don’t have control, but it’s a reality. One of my favorite lines from Jurassic Park is when Laura Dern shouts out, “You never had control, that’s the illusion!” Because, the truth is, a great majority of things in life are beyond our control.
Accepting that reality doesn’t mean that we stop trying or stop working hard to achieve things that we want. You definitely won’t get what you want if you never try. It means that, if we do lose, we don’t have to waste precious time and energy in feeling guilty for being too weak. No one has to spend days, weeks, months, or even years crying and beating themselves up because obviously they just weren’t strong enough to overcome their illnesses. I became disabled about a year and a half ago, and I still beat myself up wondering if there was some way that I brought this all on myself. That’s an extremely heavy burden to carry.
I want Harper to know that she should pursue her dreams with all she’s got, but not waste time beating herself up if she doesn’t get the life she thought she would have. It’s my hope for her that she will understand that sometimes bad things happen and there is no reason why. Sometimes the good guy loses, and that’s ok. We keep trying anyway, we keep working for what we want, but we don’t have to look at each loss in life as a personal failing.
5. Not to Judge Others’ Situations
Kinda along the lines of the “pull yourself up by your bootstraps,” is the idea that anyone on any kind of government assistance shouldn’t have anything of any kind of value. They shouldn’t have any form of entertainment, take any kind of vacation, own any technology, so on and so forth. It’s like people expect those on assistance to live in cardboard boxes, use smoke signals for communication, dress in burlap sacks, only wear shoes with holes in them, and walk everywhere they go. People of privilege have decided that people who require assistance of any kind are subhuman, because, after all, it is their fault that they are poor/unemployed/disabled/etc.
I’ve heard things get especially ugly recently in talks about healthcare. I have seen more than one person state that if people want healthcare then they should work for it and not expect it to be handed to them. If it was truly that simple and easy for everyone, then we wouldn’t see so many people dying because they don’t have access to healthcare. Very few people would chose to live a life like that.
I already worry about what people’s perceptions will be of me if/when I’m approved for disability. I’m scared that they will think that if I’m able to blog then I’m able to work full time, even though each post takes me an average of 45 minutes to write and I can do it while on pain meds, laying on a heating pad, eating snacks, and taking as many breaks as I need. I’m afraid that people will see pictures from a family vacation and be angry because if I can go on vacations then obviously the government is giving me too much or I am able to work and should be working. I’m afraid that suddenly every aspect of my life will be put under the microscope by every citizen around me, and that I will have the task of proving to everyone that I am disabled and deserving of their compassion.
The truth is, no one really knows what goes on in someone else’s life unless they are a big part of it. There are people who seem to foam at the mouth if they see a woman paying for her food with food stamps while she has an iPhone in her hand. Not only are they not considering that there are many reasons as to why the woman would have an iPhone and still need assistance, they are also not considering that it isn’t actually any of their business. Some people seem to believe that because some of their taxes go to helping people on assistance, that they are somehow owed proof of each persons need. Just as you don’t own a school just because your taxes help put it there, you don’t own a person on assistance either.
Let me make this clear, it is not your job to police people who are on assistance and decide whether they are worthy of it or not. No one owes anyone proof of their disability, other than a disability judge, just so that you can feel better about where your tax dollars go. You cannot get a full picture of someone’s life by a 10 second once over, so stop basing your image of people on assistance on these unreliable glimpses into a stranger’s world. I hope that Harper will know not to treat people like they are no longer people because they don’t fit the picture society paints of what “poor,” “disabled,” or “in need” really look like. I hope that she will know that if she one day grows up to need government assistance that she doesn’t owe anyone an explanation and she isn’t less of a human being because of it. And I hope that she will know not to devalue anyone’s existence just because she doesn’t understand them.
6. What Love Looks Like
Back when I was married to Harper’s father, I remember sitting in her room crying while I watched her play happily with her toys. I was unhappy and felt stuck. I kept telling myself to hang in there because Harper deserved to have parents who stay together, something I didn’t have. But then, it hit me. I never resented my parents splitting up because I remember how unhappy a place our home was when they were trying to force things to work. I thought about what I would say to Harper if she ever came to me with the feelings and issues I’d been struggling with for years. I would tell her that she deserves to be happy. Had her father and I stayed together, she would have grown up with a pretty poor example of what love really looks like, and I didn’t want that for her.
We all know that movies and TV aren’t a great place to go to learn about love. The show “Everybody Loves Raymond” ran for years and was loved by many, but they had some serious issues in their relationship. While it made for funny TV, it also made for a very poor model of what a healthy relationship, or healthy boundaries, look like. Most people idolize Ross and Rachel as the greatest TV couple, and yes, I’ll admit that I cried when Rachel declared that she got off the plane, but if you look back on the series, pretty much all they do is fight. He’s suspicious and controlling, while she puts in zero effort to support or understand his passions.
I am constantly blown away by how healthy, functional, and loving mine and Matt’s relationship is. It’s surprising to me because I honestly didn’t realize that relationships like this existed. I finally know what it means to be in love with your best friend and to have a partner in life. Harper was able to see all of this before I got sick, of course, but now she is getting to witness how love perseveres through even the toughest of situations. She also gets to see how, when in the midst of the darkness, love can be your greatest ally.
In my various support groups I often hear stories of people who are abandoned by the ones they loved once they get sick. It isn’t always immediate, but it seems that they get tired of dealing with them and their illnesses so they leave. It breaks my heart to hear stories like this, because I honestly don’t know how I would get through any of this without Matt at my side. I don’t feel alone in fighting my illnesses because I know that he is with me every step of the way. He has taken me to countless ER and doctor’s visits, including staying with me at Vanderbilt for a week so that they could run tests on me. He brings me medicines, cooks me food, helps me traverse the frustrating world of food allergies, and so many other things.
Honestly, I could dedicate a whole post to this, so I’ll move on for now. But I love knowing that Harper will get to see first hand that love isn’t just in the big gestures like chasing someone through the airport. Love is also in the little things, the type of things that people outside of the relationship may not even notice, but they make all the difference in the world to those living it. That’s the kind of love that I hope Harper will find for herself one day.
7. To be a Warrior
In my previous article 5 Ways I Fight my Chronic Illnesses, I detail some of the different ways that someone can fight. We fight for what we want. We fight for what we need. We fight for want we have. We fight for all that we’ve lost. Every day is a battle of some kind, there isn’t a single day where I don’t have to be a Warrior in order to keep living life.
As you can imagine, these battles require great strength and resilience. These are skills that are important in life, no matter your situation but they don’t always look how you might think they would. Sometimes strength is allowing yourself to feel the emotions that have been bubbling up but you were afraid to release. Strength can be shown by being kind and caring, even towards people who show you no kindness. Asking for help when you need it, no matter how difficult that may be to do, is showing great strength. We often talk about strength and bravery being in the Warrior who takes on the battle alone, but sometimes that’s just pride and stubbornness. Being willing to let others come fight beside you often takes great strength.
It also takes great strength to face an unknown future and resolve to still continue on. EDS is hereditary. Harper has a 50% chance of having it. We hope to be able to either confirm or rule out a diagnosis soon, but diagnosis for children under 16 can be tricky since not all EDS types can be confirmed through a blood test yet. Hopefully early detection would allow us to better protect her joints while she’s young so she doesn’t have as much damage when she’s 30, like me. But even so, if you have EDS you can be somewhat of a ticking time bomb, you don’t know what symptoms you’ll get, or when, but you know that it is a disease that seems to progress with age so one day you will be affected.
I hope that she learns to embrace each day the best that she can and take nothing for granted. I hope that she works hard and goes after everything her heart desires, knowing that health isn’t guaranteed to anyone and that one day she could wake up sick and never be well again. I hope that if she does become disabled by EDS and POTS, that she will remember that it’s ok to break down, as long as we pick ourselves back up and keep moving forward. I hope that she’ll be able to still find the joy in the little things, that she will fight to keep her passions alive, that she will retain her sense of humor, and that she will never stop fighting to be heard by the medical and legislative communities. And I hope that she will be able to see all of these qualities within me and stop thinking of me as “sick” mommy but, rather, as her Warrior mommy.
Feel free to leave comments sharing what lessons you hope your children can learn from watching you battle your illnesses, or by watching you take care of someone battling their illnesses.
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