Growing Deeper Roots: My Story of Invisible Illness

When people talk about the "isms" in society, racism and sexism are usually the first that come to mind. Later in the list comes agism. Often forgotten and misunderstood, is ableism.  Ableism: Discrimination in favor of able-bodied people.  In the last 9 months of my life, I have thought a lot about ableism. A year ago, when I whole-heartedly identified myself as "able-bodied," I never even considered the nuanced meanings of "disabled" or "abled." I assumed that, like the other "isms" I've learned about or experienced, the categories were cut and dry. You were either "able-bodied" or you were "disabled." I never imagined that I would one day live in the hell that is the grey area.  On my worst days, I am undeniably disabled. I am in bed or, if I must go out, I'm in the wheelchair. On my best days, I am walking on my own and participating in society like an able-bodied 20 year old. That lasts for about ...

"Everything happens for a reason." -Someone who has never mourned.  This dangerously misled and shallow misinterpretation of life is nothing less than emotional, spiritual, and psychological violence. It is nothing less than utter bullshit.  Whether you are mourning the loss of a loved one or a failed relationship or your lost health, this is the last thing you want to hear but it will be said to you. Someone out there with their incredibly naive perception of reality and Pollyanna outlook on your tragedy will utter this bullshit in response to your pain.  "Everything happens for a reason," "God has a plan," "This pain will make you a better person," and all your other painful paradoxical platitudes will not make it easier for me to watch my life shift in response to my lost health. All you are doing with these phrases is replacing my grief with unsolicited advice.  Now, I'm not saying that I do not recognize that I have grown immens...

It has been quite a while since I have blogged and this is for several reasons. As the semester sped up, I didn't have as much time to commit to writing for the blog. When I did have free time, I was spending most of it catching up on sleep or hanging out with my friends because, at school, they are only a few feet away. I also have been less inclined to blog lately because I have not been in the highest of spirits. The semester kicked up and I got stressed and I've been having a rough spell. I'm fainting much more often these days and I've been very frustrated. Even though I started this blog to create a venue for constructively letting these frustrations out, I'm still working on being comfortable with that. I don't want to over-complain or fall into a pattern of indulging in self pity. I don't want to spiral.  But the problem is, just because I  wasn't writing about it or publishing these thoughts, I was still indulging in the emotions. I was still...

Last night, our Peer Mentor boss took the team to an outdoor school called Echo Hill. We went to this out door school in August to partake in some team building exercises. This time we went at about 6 pm and got to watch the sun setting on the Chesapeake. We played some games and went on a night hike, ending the evening on the beach cooking s'mores. It had every ingredient for a lovely fall night.  But, my foot still hurts whenever I walk on it and my heart and head aren't too good with the whole hiking thing. I was managing fairly well but I had to take breaks to sit and avoid syncope episodes. I was with Alex, a good friend of mine who is also a peer mentor, and he helped me up and down every time I needed a rest.  When I stopped for the longest period of time, the guide came back to me and asked if I was okay. I told him that I had a heart condition-cause explaining my disability isn't always my favorite conversation and it often doesn't even help clarify anythi...

It has been a beautiful week here in Chestertown! We have had gorgeous Fall weather all week and I'm loving it. But, when I said that I love Fall, I didn't mean that I like to fall. But I did. And I hurt myself. Wednesday night I had a bit of an issue. I got out of bed to go to the bathroom and I fainted/tripped and fell hard to the ground. My foot rolled and made a loud popping noise (according to my roommate, who was awaken by this noise and my fall). Then, it quickly swelled to look something like this: I'm no doctor, but I'm pretty sure that that bump isn't suppose to be there. Just a hunch.  So I iced it and went to the Health Center on campus in the morning. I don't remember how much I have talked about the Health Center at WAC but there are great! I usually see PA Beverly Clarke and she knows my whole situation as well as I do. She is a God-send and has made this whole process much easier. Anyway, she sent me to the hospital for X-Rays. At ...

As I mentioned a while back, I was in a senior thesis production this semester. It was a two character play called Running by Arlene Hutton. I took on the role because I needed to have a creative outlet while pushing through my last year at WAC. It was a tolling process and there were many times, like two weeks ago when I could barely stand without fainting, when I thought that I had made a horrible mistake when I committed to the show. I was terrified of fainting on stage or falling into a brain fog period while performing. I took a major gamble.  The crew worked to develop a plan for every possible situation that could arise. I had an understudy ready to take my place in the worst case scenario and the ushers and house managers were alerted to the possibility of a potential episode. I had a heart monitor on the whole time and the stage manager monitored my heart throughout the performance, with a threshold in mind for an indiction that I was symptomatic. We even had a "fainti...

I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."  That was frustrating.  Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.  I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were alread...

One of the biggest hurdles for people with dysautonomia is the lack of research, funding, and awareness about the spectrum of disorders. Although this invisible illness affects millions of people worldwide and targets people of all ages, races, and genders, very few people, including medical professionals, know much about the it.  To help combat this major issue, Dysautonomia International is hosting a Tweet-A-Thon today to spread awareness.  Check out their  website  for more information about the outreach movement!  Here are some of the trending tweets!  I also tweeted this image because it is a very concise and accurate graphic about my specific form of dysautonomia. I hope you are all inspired to Tweet about Dysautonomia to help spread awareness and work towards more research and better treatment!

Sometimes, the hardest part about being sick the way that I am is that on most days, I don't look sick. I suffer from an invisible illness. Those who I haven't told, don't know that I'm sick and those who do know, rarely understand the severity.  In my last few months, I have felt misunderstood, doubted, and judged because I can't do what a healthy person can...and yet, I look healthy. Managing my invisible illness, neurocardiogenic syncope (whether from a virus producing POTS or from my pituitary macroadenoma) would be significantly easier, if people understood it. Unfortunately, I have rarely met anyone who has any familiarity with dysautonomia.  Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system controls "automatic" functions of the body like heart rate, blood pressure, digestion, pupil dilation and constriction, kidney func...

I guess I spoke too soon. It seems like every time I have a victory, my body reminds me that I'm sick. Last week was lovely. I was feeling strong and able-bodied. I fainted Friday but I got back up and had a nice weekend with my family and friends.  Sunday evening, I could feel my body starting to tire. With thesis deadlines, the show coming up, and the excitement of feeling even just a little bit more normal, I ignored my fatigue.  Monday was an exciting day for me. One of my favorite political journalists was visiting my campus and my Media and Politics professor, who is also my thesis advisor, was hosting a dinner for him. Being the blessing of a professor that she is, she sat me next to him and I got to pick his brain for a three course meal. As I sat there talking to him about Trump-fever and Jeb Bush's pathetic campaign, I could feel my mind beginning to fog.  I got through the dinner and his talk that followed, but most of his talk was blurred in my mind. I couldn'...

GUYS! I did something! I did a thing that makes me feel a little bit more whole.  Yesterday, after going a full week without fainting, I walked to class on my own. I've been practicing walking with my friends around to help me if I get weak or dizzy but yesterday I left my suite and walked about 600 yards to my first class. I needed some help, for my own peace of mind, up the hill of Cater Walk to lunch and across the street to work but other than that, I was independently mobile.  A year ago, this would have been a regular Friday. This wouldn't have even crossed my mind. But 5 months ago, I wasn't sure that I'd ever be do this again. 3 months ago, I wasn't sure I'd go back to school. 3 weeks ago, I thought this campus, with all its hills and bricks, would be the death of me.  But I did it. Even just for a day, I walked on my own and had a taste of normalcy again. What was even more amazing, was how many people knew how much of an accomplishment this...

It is the end of another long week. I've always been one to love school and this year, though more difficult than ever before, is no different. In fact, after just the first two weeks of classes, this year has been quite rewarding.  But, the week didn't start out that way. Sunday night, only five days ago, I was frustrated. I was very very frustrated. I was finally admitting to myself that I was thinking of leaving. I even said the words out loud. As much as I wanted coming back to school to work out, I wasn't sure that it was. After a frustrating day of callbacks (callbacks that I thought went poorly, at the time) and unfinished homework, I had a mini meltdown.  Luckily, as you know, I have friends sent from heaven. So I spent a good hour and a half crying and spilling out all my frustration on my friend Alex. Alex knows me extremely well. We've been friends since freshman year and we spent a good bit of our friendship as a couple. I thought it would be hard to co...

I have finished my first week of classes post illness (I say post, as if I'm out of the woods, I'm not). I'm only taking 3 classes this semester since I am now working on my thesis. Sooo...that's still 20 credits. Whoops. Luckily, classes are interesting. I'm taking my senior seminar, environmental economics, and congress and the legislative process. I'm also auditing media and politics because it just sounds so interesting and I'm a huge dork. It's very hard to get around campus on my own. I'm not confident about walking without the chair alone so I'm still in it most of the time. While this makes my arms look fantastic, I'm tired almost all of the time. Luckily, I have possibly the best group of friends in the entire world. There have been numerous times when I have just gotten too tired to wheel back to my dorm and I've texted my friends and they've dropped everything to come help me. There have been a similar amount of times ...

As I mentioned, I have returned to WAC a week early to train as a Peer Mentor. The Peer Mentor program is designed to match upperclassmen with first year students during orientation and the first semester so that the first year students have someone to guide them through their transition. This is my second year as a PM and I really enjoy it. Two of my suite mates and a bunch of my other friends are also PMs, so training and orientation is a blast! We started training on Friday. Then, on Saturday, we went to Echo Hill ( http://www.ehos.org/ ) for a bonding retreat. Now we are back in the classroom, training until the freshman arrive on Thursday. I've been using this time to practice in the wheelchair and experiment with my walking abilities around campus before everyone else arrives. I'm getting pretty good but there are still many of parts on campus that are too steep for me. Peer Mentor training is surprisingly fun and exciting. Although we have several boring sessions a ...

Thursday I moved back into college. Although it had only been 3 months since I left, things feel immeasurably different. I feel immeasurably different. I moved into a suite style dorm with three of my best friends: Erin, Anna, and Cat. With every worried thought and dreaded moment about returning (see last post), I reminded myself of how great living with these girls will be. They (the universal 'they') tell you that you won't keep your 'freshman orientation friends,' but they haven't met these baller chicks.  Erin is everyone's pseudo mom. She will be proud of me when I'm doing well and love and console me when I'm down. I can already see her cheering me up even when she doesn't know I need it.  Anna is my school version of Kate. She can be weird and goofy with me and then turn around and give me the best advice, and hugs, a girl could ask for. She is, and always has been, great at looking out for me and I'm 98% sure that she...

My last day of PT was Wednesday. Kate and Hannah drove me since my mom has returned to work. I had a really good session (especially compared to my last, when I fainted) and I spent the entire time talking with Maddie, the assistant, and Kevin, the owner. We talked about the ways I can continue working towards progress at school and they congratulated me on the progress I've made in PT. When I left the hospital, I was barely walking and staying upright on my own. It took us a while to find Kevin and McLaughlin Physical Therapy but when we did I started seeing some improvement. My improvement is most apparent in the analysis of my tachycardia. My resting HR is falling and my flares of tachycardia are becoming much less extreme. After the session and my "graduation," I got a t-shirt. It's pretty awesome. Then, Hannah and Kate drove me home and fed me chocolate covered bananas, as real friends often do. 

The other day my friend Kate asked me a question about how I was feeling. I'm so used to spouting out my BP or HR in response to "How are you?" or giving a generic "Oh, you know, been better been worse" or the ever so popular "Fine, how are you?"  But Kate was more specific. She asked me how I was doing with adjusting to the new phase of all of this. The phase where we've stopped looking for a solution to my syncope and started working to adjust and manage it. Learning to live with it. Creating a new normal.  I hadn't realized it until that point, but I have been feeling frustrated. When I was first diagnosed with the tumor I was scared, but I was determined and hopeful. I've lost that. In the last few weeks I have lost hope of an independent existence or a normal life without fear of fainting. I've stopped saying "When I get better..." My mindset has shifted from defensive action to maintenance and survival. People ...

Today was one of the very very rare days that I didn't feel like a sick person.  Yes, I got winded going up the stairs. And I had to wear my compression sock. And my Fit Bit alarm (to tell me when I'm going into Tachycardia, as if I can't feel it) went off several times. BUT! I went to the Oriole's game and celebrated my mom's birthday and did normal people things!  Dad has Oriole's season tickets but I hadn't gotten a chance to go at all this summer because...well, I've been a little preoccupied. Today, Dad and I went and we had a nearly episode-free time. The game was a blast (we won 18-2) and the weather was perfect.  I had to concentrate on hydrating consistently since it was in the high 80s and I was exerting myself. It wasn't until we were leaving and I had to go up a couple steps that I felt symptomatic. I had to take a break at the top of the steps but Dad was there to help me rest. As I sat against a wall and caught my breath and l...

Today, I went to Rose Hill Manor's World War II weekend. I love that era of history and so does one of my oldest friends, Brooke. We used to stay up and watch old 1940s movies, we took a WWII class in high school, and we've made countless Hitler memes. So today we went to the reenactment and toured the museum.  My sisters and my friend Erin work at this Museum and were dressed up to work the festival.                                       <-Look! I'm standing! While most of the park was wheelchair accessible, it was not exactly wheelchair friendly. The paths between tents and exhibits were gravel, and the chair did not move easily through it. Likewise, every park or field or yard in Frederick County is ridden with hills. Wheelchairs don't like hills. Also, the top floor of the manor house, built in the 1790s, was not accessible. (Come on 18th century architec...

Last night, with Kate in Reston, I saw some of the beautiful Perseid meteor shower. We drove out of the city to a park where there wasn't as much light pollution and laid out on a blanket. After a few minutes of waiting and letting our eyes adjust to the darkness, we started seeing shooting stars. Some were short and dim, others burned across the whole sky.  Half way through our night of watching the shower, I turned to Kate and said, "Aren't we suppose to be making wishes?"  I told her that I couldn't think of a good wish to make and she immediately started laughing and said, "You have a brain tumor, Tori! You can't think of any wish to make?!"  So with every shooting star, I wished for better health. I wished for some magical solution. I wished for a full life. And at the end of the night I asked her what she was wishing for, to which she responded, "I think we were wishing for the same thing." #friendshipgoals

Today, I'm feeling a little defeated. Maybe I got cocky or too comfortable with the last few days of normalcy. Monday, Tuesday, and Wednesday were really good days for me. I had a slight headache on Monday, but other than that, I have been fairly non-symptomatic. I started doing some normal things, shopping with Kate, going to the dentist, going out to dinner. I even went to see Jim Gaffigan at the Wolf Trap. I've been feeling pretty good. Until today.  I knew when I woke up, with a BP of 78/68, that it wasn't going to be as successful of a day. My stomach was hurting, I felt a little foggy, and by noon, I had fainted.  Still, I went to PT with the hope of getting my energy level up and leaving the session feeling better. Well, I made it half way through the session before the squats got the better of me. This was the first time I've ever fainted in PT (this office, at least). Kevin, my physical therapist, was right there with an additional spotter so I did not h...