I’m a control freak by nature. I’m a pain about group projects, because I end up wanting to do the work myself. I dislike unpredictability, preferring a solid foundation of plans and goals. Through my illness, I’ve lost control of almost everything at one point or another. Before I got sick, my body was the one thing I always had control over, even if other things were falling apart. And suddenly I didn’t even have that.
I’m the kid who’s had her life planned out since first grade. I was going to college, become a doctor, go to the Olympics, and then somewhere in there have six kids. I think I was pretty adamant about that, at six. As I got older, my dreams and plans evolved, but they were still concrete, and I never once imagined those things could change. When they did, my plan for my life was one of the first things I grieved. I was free-falling with no parachute, and when I crash landed somewhere in between hope and desperation, trying to find my footing on an ever slippery slope, all my carefully drawn maps and plans fell by the wayside as my world changed from living to simply surviving. For a long time, I refused to think about what would happen if I never “got better”. I refused to acknowledge the fact that my life had changed irrevocably, and that even if I woke up tomorrow cured, I’m not the same person who fell out of an airplane with nothing between me and life except for the open sky.
This past weekend, I had the immense privilege of traveling to San Francisco to attend the Invisible Project Gala. The Invisible project is a program by the U.S Pain Foundation, where they tell stories of people living with pain. I was lucky enough to participate in the Kids and Families Issue, and the experience was such a gift. There’s a lot of my journey that isn’t pleasant, to go through or to remember, but to look back and be able to own my story and who I have become- that is the greatest gift of all.
The Invisible Project isn’t about finding a way to be cured, or to be fixed. Rather, it’s about finding a way to manage and move forward. This project and it’s stories are proof that we can and will adapt, despite the odds or the circumstances. I talk about focusing on the silver linings rather than on the collateral damage, but sometimes the damage cannot be ignored. It can’t be fought through. It is simply there, and the best thing you can do is learn to keep going.
I’m no longer scared of not getting better. Sure, I’d like to. I still hope I will. This isn’t what I planned for, or what I ever expected. But this weekend, as I heard the stories of surviving and of living, I was viscerally reminded that I can do this. That my life can and will still be beautiful and strong and joyful, even if I never “get better”.
One of my all time favorite quotes is from the Lord of the Rings. “Not all those who wander are lost.” I’m still wandering. My detour hasn’t yet led me back to the main road- and maybe it never will. Life is rarely what we expect. But when I laid out my plans, all those years ago, I thought of what I wanted out of those dreams. I wanted to be happy, to be able to have those I love around me, and to watch them succeed and find joy. And those things, the things that are truly important- they can be found even in the darkest of times, even on the rockiest roads.
Strength isn’t about being cured or winning every battle that comes your way. If you take away nothing else from my story or the Invisible project, take this: we are much stronger than we first believe.
So here’s to impossible things, to surviving- to finding new roads, new lives, and to getting lost along the way.
Over the course of my journey with rare and complex diseases, there have been many moments of hopelessness. When you’re at the end of the road, when you’ve outlasted all the options- what do you do next? Where do you go on this shaky ground of fear and desperation? How do you take a step when all you’re waiting for is the other shoe to drop?
Because there isn’t any other option. There isn’t anything else. I’ve been asked a million times: how do you do it? You do it because you don’t have a choice. I wish to hell that on the impossible days I could just say “hey! It’s too much! I can’t handle it!”- but that’s not how it works. You go forward because it’s all you can do.
As one of my favorite quotes goes: “Some things don’t require courage. They just need to be done.”
And once you’ve moved on from the quagmire of non-options, you figure out what you can do. You adapt. You glory in the tiny victories, and in the inconsequential pieces of our lives that most take for granted. Your “normal” changes, and you learn to live despite that. Or perhaps because of it.
I attended the Global Genes Rare Patient Adovacy Summit. My first year attending the full conference. I was honored to speak on a panel on young adult advocacy, and something that I feel very strongly about. I also got to listen to sessions run by amazing activists and awesome people, who educate and advocate and want to empower others to do the same.
I was astounded by the courage and resiliency found in the people who fight tirelessly for medications and legislation and quality of life, despite the fact that for many, modern medicine will not move fast enough. The changes they put into effect probably won’t benefit them, trials and medications they were crucial to the success of may not be their miracle. They are not necessarily fighting for themselves or their family members- they are fighting for the next family. The next teenager diagnosed with an incurable disease. The next parent who has to hear that there is nothing that can be done for their child.
So for those who are healthy, untouched by rare disease: start advocating. Push for cures, even if it’s not your child or you or a family member, even if you know no one who fights an incurable diagnosis. 1 in 10 have a rare disease. And so if you don’t know someone, odds are you will soon. And if that’s not reason enough: medical science has come a long way. As humans, we reach into the bridge of the unknown- but the technology is often moving faster than the people behind it. Yes, science is racing along at breakneck speed but that doesn’t change the fact that for most, the cure isn’t there. Because science doesn’t move fast enough.
That’s not to say it doesn’t help and fix and cure: I would be dead if it weren’t for modern medicine and technology. And so would many of my friends, and a good number of people at this conference.
And yet. For most, there is no treatment. There is no miracle drug. We do not have a way to solve their disease. We do not have a way to solve my disease. So advocates fight for symptom management, for accessibility, for quality of life. For adaptations that can make life better and more livable. And yes, we do fight for cures. But medicine moves slowly. Drug trials take time. And honestly, time is of the essence.
What do you think of when you think of rare disease?
I think of closed doors. Of dreams shouldered, sometimes forever- because things have moved on from living and into surviving.
1 in 10. If it hasn’t affected you yet, chances are it will.
And when that 1 in 10 finally affects you?
There are more than 7,000 rare diseases and disorders. And 95% of them have no treatment. Do you want to take those odds?
I’ve tried to sit and write this post many times, and each time I’ve written a half-hearted attempt at a paragraph, and then closed my computer, telling myself that I’ll finish it tomorrow. But no matter my comfort level, I need to speak on an issue that is too often left unvoiced and unsaid.
I’ve dealt with post-traumatic stress disorder for two years now, as a result of medical experiences. PTSD. I’ve called it “traumatic symptoms”, and “PTSD-like episodes”- but let’s call it what it is. PTSD. I’ve resented naming it for several reasons, but the biggest one is I had trouble reconciling the events with how I felt-thinking because I hadn’t gone through a war or a natural disaster that I didn’t deserve to call it PTSD. I’ve spent a lot of time telling myself that it wasn’t that bad, that I was just being a wimp who couldn’t deal with trauma. But suffering is subjective, and there’s no use saying that I can’t feel the way I do because someone else has it worse. Someone will always have it worse.
Trauma as a result of medical experiences and medical mistakes is much more common than is discussed. Most of the people I know who deal with chronic and serious illnesses have some form of trauma related to medical experiences, whether it be major or minor. Even caregivers often experience trauma and anxiety. And the anxiety and depression that can accompany PTSD and chronic illness itself is too often unrecognized and therefore untreated.
I was hospitalized on and off for about six months, including one 2 1/2 month stay. During this period, I was being hospitalized for dehydration, inability to get rid of my own waste without intervention, extreme weight loss and pain. We now know that I was dealing with severe gastroparesis and delayed intestinal motility. At the time, I also was in a tremendous amount of head pain, and many neurological symptoms. None of these things seemed to matter. I was told that I had no physical illness, that I simply had an eating disorder, conversion or somatoform. I was told that my parents were too protective, that they were making me sick, and that they were feeding my apparent desire to skip school and get attention by pretending to have an illness. I’ve always thought that funny- if I really wanted to skip school or get attention, I’m positive I would find a way to do it that involved less pain.
Every admission, I was placed in the “behavioral unit”, the care unit for eating disorders and mental illness. Most of the treatments that were tried caused me to decline, rather than improve. I was physically injured multiple times during the admission. I’m not going to go into specifics, but it wasn’t good. I feel the most damaging things were more psychological. Trust was used against me, and things I said would be twisted, and used as reasoning for their actions. Promises would be made and then broken with the same nonchalance, and my safe spaces and coping mechanisms were whittled down to nothing, even as my body declined. The doctors refused to release me until I met certain “goals”, and yet every time I would achieve one, the goals would change. My parents wanted desperately to sign me out against medical advice, but were told that if they did, child protective services would likely be called. I was eventually released (after more than two and a half months) because a holiday doctor came on for thanksgiving weekend, and was unfamiliar enough with my case that he was willing to discharge me. I don’t know what would have happened if I had stayed, but I certainly wouldn’t be where I am now (mentally or physically).
I was understandably dealing with a fair amount of anxiety and depression at this point, but it was a result of the experiences, not the cause. The distinction is incredibly important. For example: pain causes anxiety. Anxiety can cause you to tighten and tense your body, which in turn increases pain. However, the anxiety was not the source of the original pain. I was trapped in a cycle of increasing pain and ever escalating anxiety.
The mental consequences of my experiences were astronomical. I emerged from a 70 day stay a very different person than who I was prior. I was terrified of all new doctors, terrified that they wouldn’t believe that I was sick, that I was in pain, that my body and organs were failing me. Trust was consistently used as a weapon during my stays, especially the longest one, and it’s taken a tremendous work on my part, and the proof that there ARE good doctors, to get myself out of that mentality. It’s something I still struggle with: the fear that medical professionals will be harmful, not helpful.
I don’t know whether those treating me believed in what they were doing and thought that their course was in my best interest, or whether they were simply unwilling to challenge the opinions of others. I wonder if they regret it. These have rolled around in my head for quite a while, the unanswerable questions. I don’t think I’ll ever know the truth.
Recently, my health has deteriorated somewhat. A few weeks ago, physically, I felt like I was in a very similar state to how I felt right before the admission that was so disastrous to my health, physical and mental. It’s odd that a physical feeling can launch your brain back into fear and panic. However, it’s caused me to look back at my recovery over the past two years, and realize just how far I’ve come. I’ve learned to try to trust doctors and other medical professionals again. I’ve learned that when someone asks about my mental health, it’s often not because they want to criticize me for it, but to make sure that the consequences of my physical state aren’t causing additional mental health problems. I’ve learned to try and love myself and to accept that my body and I are on the same side.
Recovery and healing are never a straightforward process. There are bumps and ruts and moments when you feel you’ve slid backwards. But I am moving forward, just in a different way than I expected. There will always be impatience, because healing takes time, but recognize that you are moving forward. You are making progress.
For me, moving forward and making progress has only been possible because of the support network I am so lucky to have. My immediate family, my psychiatrist, my other doctors who have understood, my friends online and in person who’ve had similar experiences. I’ve had to learn to ask for help, and I’ve learned that for help is not weakness. If anything, it shows that you’re strong enough to realize that doing this alone is impossible.
I’ve thought often that because these events effected me so strongly, it must mean that I’m weak, or that I’m not trying hard enough to handle fears or flashbacks or panic. That I’m “doing it wrong”. But those fears aren’t the truth. And for anyone dealing with similar things- you are trying. Your feelings are valid. There is no one way to handle this, no road map where you can say “Aha! Here’s where I went wrong.” (Sometimes, I wish there was.) Honestly, much of my healing and recovery process has been building my road map, and it’s all easier said than done.
There are still moments where I feel like I can’t keep going. When a waiting room has me trying desperately to remember my coping skills, or when a doctor’s choice of words has me suddenly questioning myself and my body. There is no logic in PTSD, and though the logical part of my brain may be saying that I am safe, the parts that control my panic and fear don’t seem to get the memo.
“Sometimes the things we cannot change end up changing us.”
I have changed fundamentally in the years that have passed since I first got sick. In both positive and negative ways. You see lots of mushy quotes about how hardship makes you a better person, or that you can’t know joy without having experienced pain. And for some things, that may be the case. But the truth is that change is not always positive, and there isn’t growth from every experience. Sometimes surviving is the only thing you can do. One foot in front of the other, one minute at a time. And that’s okay. Healing is uneven, bumpy, and difficult, and it’s never the smooth process you expect or wish for.
There’s a Japanese word, kintsukuroi. It means “to repair with gold”. It’s the art of mending broken pottery with gold or silver lacquer, and the pieces become “more beautiful for having been broken”. I like to think of my body and brain like that: beautiful not in spite of flaws, but because of them. That I am more than I was before, not in spite of the challenges, but as a result of them. Heart and brain and body all mended with silver thread and gold, held together by silver linings.
Recently, I was asked the question, “Do you think this will be a long term thing?” This was referring to some recent concerning symptoms and I had made the request for a piece of equipment- a wheelchair that fits me and is lighter and more easily maneuverable. Now, anyone who’s ever looked at those things knows that they are not cheap, and so often the process for insurance approval is long. Now, my all seeing eye to the future was on holiday, so my answer to the doctor was “I don’t know.”
When I first got sick, I thought it would be a few weeks until it got better. Maybe a month. I never looked at my illness as “chronic” until I’d been dealing with it for the better part of six months. And even then, I wanted to avoid doing certain things because I was just going to get better. As of now, I’m still waiting. (Any day now, right?)
As my illness has gotten longer, and as it continues without a visible end, my perspective on many things have changed, as you would expect. One of those things is acceptance. I’ve been trying hard to love my body, without faulting it for it’s limitations. Of course, this is easier said than done. But one of the hardest things for me that prevented me from accepting my body that niggling fear that acceptance means giving up or giving in. That if I say, yes, this is the reality right now, that it means leaving behind the idea that I’ll ever get better.
In my mind, at least recently, the idea of acceptance has changed. It doesn’t mean giving up the idea of ever getting better, or even the idea It means trying to move forward from the idea that me and my body are on opposing sides of a war that many days has no clear victor. It means focusing on the fact that my body has fought so hard to live and to thrive, and that I’m proud of it for doing so. I’m sure as hell going to continue to fight to be healthy. But I also will fight to live the best possible life I can in the body that has carried me this far, the body that despite all the craziness that has been thrown at it, is still going. And living the best life possible? That sounds like the furthest thing from giving up.
“You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.”
Hey there! Long time no see.
Since I last blogged a lot has happened. Let’s start with the good. I received my service dog Taxi, and he has been such a gift. I have another post planned about him, but I could talk about this dog for days. (As my friends and family well know, as they’ve had to hear it.) I’m also very excited for some new projects with the organization I am a part of, We Are More (we have a Facebook and you should totally go check it out). I was also able to attend Comic Con a few weeks ago, and I had an amazing time geeking out and seeing so many amazing artists and cosplayers.
And now on to the not so good: my medical situation is unstable at present. I’m having lots of anaphylaxis that is not controlled or well managed. My doctors are doing their best, but everything takes time, nothing happens instantaneously like I might wish it did. New meds and new treatments are always an ongoing process. In the past few weeks, I’ve received my first xolair injection, and my second dose of intravenous immunoglobulin. I’m hoping that these new treatments show efficacy sooner rather than later. The IVIG is definitely helping with some of my symptoms, so that makes me optimistic. My stomach is actually doing quite well, so once these reactions begin to be a little more controlled life will be easier.
I’ve written a lot over the past couple days, but have been struggling to word what I’d like to say. The posts have been mostly about finding a way to carry on when the destination is so very unknown. Uncertainty is the foundation of all our lives- and some of us are just a little more aware of that than others. It’s an uncomfortable thought, and one that those with chronic illnesses are forced to embrace.
I don’t know what tomorrow brings. It may be a good day, or it may be one that involves countless medical interventions just to keep breathing.
I’ve had a lot of fear in the recent days and weeks. I’m scared of what’s happening to my body. I’m scared of the bad days. I’ve had a lot of trouble continuing to move forward when it seems like there are roadblocks at every turn. You would think after so much time spent with my body that it would get easier when it fails…news flash. It doesn’t. Or at least not much.
It’s easy in these circumstances to view your body as the enemy, the very thing you are fighting. I’m trying to change my perspective to see it as an ally- a friend for whom I need to provide support and love and care. So for anyone who feels like your body is betraying you- be gentle with it. It’s trying its best.
There’s a favorite song of mine that goes “Let it roll right off your shoulders…don’t you know the hardest part is over?” And I listen to it and wonder if it is.
People talk about bravery and strength, but I don’t feel particularly brave or strong. I feel tired and frustrated. I’m trying to remind myself that strength doesn’t always mean being positive or making it sound better than it is- because sometimes life is hard, and strength is just carrying on.
And so that’s where I am right now. I am uncertain and tired, but I know that if this is my life, and these are the cards I have been dealt, than I WILL live this life to the best of my ability. I will make the best of my good moments. And embracing the bad moments is a work in progress, but I’m getting there. I’m getting there. Things like crafts, friends, my amazing parents, and my big dork of a dog make it easier.
So if you have the gift of free breathing, of eating what you please and and doing what you wish, please don’t take it for granted. The little things are truly the most important. Those minor details of life most of us gloss over…those are the things that matter. Sometimes even more than the big things.
This is a bit of a stream of consciousness post. I have some other things written out and planned, so look out for those in the coming days/weeks.
As always, thank you for the support and love. Thank you for reading my words.
If I could go back and tell myself one thing when I first got sick, it would be to find a new normal. And to try and accept the new normal.Sleeping all the time? That’s okay, that’s your new normal. Can’t walk without limping? That’s okay, it’s just a new normal. Using a wheelchair? New normal. Recently I was told to look into a new disorder, as a possible answer. I wasn’t phased at all, started doing research, and then it dawned on me…after almost 3 years of constantly being sick, this is my normal. And I’m okay with that. So if you’re just getting sick, or are struggling with something, find a new normal. Don’t forget the old one, but try not to expect your body to be capable of it. It’s impossible when everything changes, especially when that change is drastic- healthy, to sick, in a short time. I could have never imagined 3 years ago my normal would involve researching rare diseases, and administering meds through a feeding tube…but it does. My normal is not what I would have wished it to be, but it is one where I can live and thrive and be happy. “Normal” is after all, a very relative term.
And if your new “normal” feels not so normal at all, remember that you are not alone. And remember that things do get better.
The video begins with Olivia Wilde, a white, able bodied actress, doing all these lovely things in her life. She runs, she hangs out with her family- she looks happy, healthy, and content.
“I see myself as a daughter, a sister, a best friend. As a person you can rely on. I see myself meeting someone that I can share my life with. I see myself singing, dancing, and laughing, until I cannot breathe. And also crying sometimes.”
The voiceover continues throughout, a message of possibilities and inspiration, and at the end, says “This is how I see myself. How do you see me?” And at this point, you see the only shot in the entire video of AnnaRose, the girl with Down Syndrome who was speaking.
Now, the message is that you should see the person first, before the syndrome, and to ask the viewers how they see a person who has Down Syndrome- as a person first, or as the disability. And it’s an extremely valid question.
However, this video, designed to promote World Down Syndrome Day, has a major flaw.
AnnaRose could have done all of those things herself. By putting in a thin, white, famous, able bodied actress to replace her, you erase the disability. Do disabled people need to see themselves as able-bodied, in order to be seen? Do we need to be seen as able bodied, in order to be seen as people first? Can we only be successful, beautiful, happy- if you first completely erase our disabilities? This actress with Down Syndrome is capable of doing everything you see an able bodied actress doing. Why should she have to first erase her disability in order to do so?
This is an assumption that is deeply engrained: that someone with a disability could not possibly be happy or whole.
I belong to a community I never wanted to, but that has changed my life in ways I cannot even express. I am part of the group of young adults and teenagers who have chronic illnesses, and are fighting these diseases constantly. Unfortunately, as with any situation, it’s difficult to understand what someone is going through if you haven’t gone through it. I met my best friend through my illness. I have also met so many other fabulous people who have helped me through this journey. I read The Fault in Our Stars by John Green before and after I got sick, and empathized greatly with the main character, Hazel. I watched the movie when it came out in the theatre with my best friend. Similarly, I was ecstatic when I discovered that there would be a TV show, (Red Band Society by Fox) about teenagers in the hospital. I was in the hospital when it came out, and I watched the episodes beneath the glow of my IV pole.
However, not everyone in the chronic illness world shared my views. Many chronically ill teens and young people were upset by the glorification of illness, and how it forms a very untrue portrait of chronic and critical illness in the public eye. And I agree- the TFIOS movie and Red Band show are both inaccurate. Devastatingly so.
The characters in the Red Band Society make the hospital look like a party, complete with beer, rooftop fires, and romance. I’ve spent over 5 months in the hospital over the past twelve, and (spoiler alert) I’ve never been to an awesome rooftop party, and I’ve never fallen in love. The Fault in Our Stars, especially the movie, makes terminal cancer look like a literal walk in the park, complete with dream vacations and a star crossed love story.
Yes, there is a lot of inaccuracy and drama in these fictional stories about illness. But what are we supposed to expect? This is Hollywood. Everything is dramatized to look much larger than life. There are very few movies and TV shows I have seen that aren’t glorified. I hate to say it but it’s true: it’s hard to sell a story that shows real life.
But what is the alternative to having these stories be blown up larger than life for the big screen? Not showing them? Keeping everyone who doesn’t have a link to these diseases in the dark? So many people have no idea that young people can get sick. Teenagers are supposed to be at the pinnacle of health, the topmost point of physical excellence. Even doctors sometimes seem to have difficulty believing that I, a sixteen year old, am totally dependent on a feeding tube for survival. Yet I am not alone in my situation. Shows like The Fault in Our Stars and Red Band Society spread awareness. They show people that there are teenagers who are not healthy. They show that there are diseases that modern medicine cannot fix- and we need awareness to find solutions.
This article was also published on The Mighty.
Finding my superpowers while fighting rare disease, and empowering others to do the same.