Growing Deeper Roots: My Story of Invisible Illness

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...

Friends, Today was difficult. It was difficult because it was my first trial with the wheelchair on my school (WAC)'s campus. As lovely and aesthetically pleasing the 300 year old campus may be, it is not exactly wheelchair friendly. I had a lot of difficulty going up and down hills with uneven brick paths. I also found out how inconveniently placed all the elevators are in buildings.  But it was also difficult because it was the rude awakening to a hopeful dream of an easy return. It was the first day of a long, challenging semester ahead. I have been spoiled with the hardwood floors in my house and the even terrain I've been wheeling around all summer. Now, I have to adjust to the much more challenging environment I will be living in.  It was also my first day waking up at 6 am and having a constant stream of activity since I've gotten sick. I have been spoiled with low activity days and mental rest. Today, I remembered how tolling it can all be. By the time I got ...

I talk a lot about the frustration and difficulty that I face every day with my struggles with dysautonomia. I can't pretend that this is a battle that I wanted to fight or a gift I wanted to receive. But it is something in my life. It is something huge that was thrusted upon me and I can't change that. So sometimes, I have to own it. I have to proudly wheel through the grocery store. I have to make tumor jokes. And I have to take note of the changes that are happening in my life, because although they feel out of my control and some of them just really suck, there are a few changes in my life that aren't so bad. Saying that the tumor and the dysautonomia gave me something positive sounds odd, but when you're faced with a something like this, sometimes it helps to count the blessings. If I had never started faint, if I had never found the tumor, if I had never gotten sick, I would have spent my summer in Scotland or D.C. working life changing internships and taking c...