This one might be a bit of a long post, brace yourselves darlings.
First of all, I hope no one reading this sees my writing as a poor me stunt. I started writing to let my family and friends know all the medical terms and testing I was going through. When I finally got my diagnoses, and we had a better view on how rare my situation was, my intentions changed.
Growing up, my mom gave me a book titled "Small Steps: The Year I Got Polio" by Peg Kehret. This poor book, like most in my collection at this point, is severely dog-eared by all the times I've looked to it for comfort. Reading and writing has always been focal to my life. I remember one time when I was really little, I ran to my mom crying. My big brother and sister were too involved with their books to play with me and I hadn't learned how to read yet. My mom's solution was to read to me and teach me how to read on my own. The written word has always been a source of comfort and escapism for me. The book I mentioned, "Small Steps", is an incredible book about the resilience of the human spirit and body. The young woman got diagnosed with Polio in her teens and was so sick she had to use the Iron Lung for a while. Eventually, using her small steps, she worked her way back to health. You can see why I found so much inspiration with this book. I adopted her mantra into my own life. If you need a "you can do this" book, read it. It's intended for a YA audience but wonderful regardless of your age.
I believe God (by whatever name in whichever language, or the universe, or karma, or whatever you believe in) gives us warning and preparation for what's to come. Sometimes we can only see the signs in retrospect, but I firmly believe they're there. This was one of mine. Understanding the battle, the patience and persistence necessary to fight and claw your way back to health became all consuming. One step at a time. It became a way to coach myself. Just take this step. This one step and then you can relax. See this one doctor. They have to see the symptoms. They have to understand it's real. You can't fake your heartbeat or your stomach not functioning. You can't fake blood pressure. One more try.
Always, one more try. One more step.
Reading books by people who's bodies turned from their outer self to the enemy became a form of therapy. They did it. If they made it work with their terrible situations, so could I. I hope that my writing does that for someone. This is my new focus. To do whatever it takes to help raise awareness and support for rare diseases. Use whatever medium I can get my small hands on to get the necessary message of empathy and support to those that need it.
And pity the poor fool that dares to tell me it's too rare to look into. Don't ever tell me the odds. I will shove them down your insensitive, ignorant throat. I beat the odds every single time they were stacked against me, and I'll help others do the same. You're welcome to watch as long as you don't get in my way.
I graduated from Cardiac Rehab yesterday. I even got a diploma that I totally plan on framing. I found out I was graduating on Monday. Monday night I had a panic attack. For the past twelve years, every time I've felt like my health was starting to get under control something insane came up and I was back in a hospital, trying to explain weird symptoms to a doctor whose only reaction was a blank stare. In those situations, I did my best to refrain from throwing things. I've killed so many phones by throwing them when I'm mad. Not the brightest plan. Blame my Scottish temper.
I don't trust my body anymore. I can't trust waking or sleeping that something won't go wrong (or pop out of place). But I can place faith in my team. In my nurses and doctors who are in my corner. In my mom and my incredible family and friends that form the best support system anyone could ask for.
One of the members of my Cardiac Rehab team heard that I was terrified of not being in the program and getting sick again. She pulled my full file and showed me the numbers so I could see exactly how much better I was doing. The results are crazy. Remember when I started? I could barely do five minutes on a recumbent bike, going so slowly the computer kept kicking me out. Now, I walk 45 minutes three times a week at 2.5 miles per hour. My blood pressure didn't change at all when I first started, and now it increases with workouts the way it's supposed to. I sweat again. Yes, that's strange to talk about but I promise you, no sweating is painful. The balance of internal and external temperatures is so important, and you don't even think about it til your body doesn't do it. Imagine your internal temperature burning up while on the outside your skin is cold. Weird. And not fun. So glad that's over with. I'm never complaining about sweat ever again. Ever.
Of all the things to be grateful for haha. Sweat is totally up there for me.
I was able to eat a whole half of a salad the other day! Speaking of awesome improvements. That was the first raw vegetable of any kind I'd eaten for over a year. AND I kept down a glass of wine. Woohoo!!!
If this keeps up my body and I might be able to get back on speaking terms. Wouldn't that be great?
Another thing I'm struggling with is how to get back into the real world. How do I explain in job or school interviews why I've been out of work and school for so long? Do I just say, "I was sick"? I feel like that leaves so much room for misinterpretation. "I have a heart condition" isn't necessarily true, but "I needed to retrain my Vagus nerve" is plain bloody confusing. Most people aren't aware there's such a thing as the autonomic nervous system; God knows I didn't before all of this! I kind of want to invent stories to make it more fun. "My shoulder popped out when I was wrestling with a whale." "A bear tried to take my bagel. I got it back We had a minor disagreement." (The bagel story I can't take credit for, it was one of my best friends' story of how he broke his collar bone.) "I was jumping on my bed and I saw a spider so I dove off the bed to get away. I dove wrong. By wrong, I mean I dove into the wall." "I worked retail on Black Friday. Do I really need to explain further? Those people are scary. And there were demon children. Demon. Children. I'm also deaf in my left ear now. I'm sorry, what was your question?"
One of the guys at CR, on his first day asked me if I'd had a heart attack and said I seemed too young to be there. I know it was said out of good intentions, so I didn't lose it. If I'd felt it was coming out of malice I have a lovely stash of sassy replies: "Aren't you old enough to know better than to ask something like that?" "You seem a little old to be that stupid." "#$&@ off" "Want to do a fun social experiment? Keep the condescension up. See what happens". I have many more with lots of bad words in other languages just because it's fun to insult someone in Chinese. I want to learn Russian and German just for when I'm mad. I know, I'm weird. You have to admit though; seeing a small, angry, Scottish woman shouting at you in Russian or German and throwing in random Chinese insults would definitely leave an impression. Hehe.
I asked my physical therapist what a polite response to "Aren't you too young for this?" is. I've been asked it so many times and I'm sick of it. My reactions are usually: giving them my best death stare til they back off, trying to explain everything in a short version that doesn't make sense because I'm talking too fast and I end up flustered, or I try to make a joke out of it that usually ends up insulting either me or the person asking. Or both. Ed's response was awesome. "I don't have a polite reaction to that question. Most of the people in CR are there because they didn't take good care of their bodies. You have a very rare combination of very rare diseases. They put you through hell to get the diagnosis and this is the best therapy for what you have. It's clearly working and they should focus on their own health problems. None of this was your fault and you push yourself harder than any other patient I've seen to get well. If I was there I'd tell him to fuck off." Nothing makes a girl feel better than a very tall man friend in their corner. Ed's been with me from the beginning, he saw how sick I was and I see him more like a friend than a physical therapist at this point. It was so nice hearing him defend me. He and his wife are expecting their first little one. He's going to be such a good daddy.
I understand that when people see me they don't see a "sick" person. It's the reason so few doctors or fellow patients take me seriously til they know me or can see the test results for themselves. When I'm in pain I usually lock my jaw and ignore it. (My dentist loves that, I'm sure.) My only sign that I need to do something for the pain is when I start throwing up or get shaky from it. I'm more likely to push too hard then to slack off (one of my best friends jokes about beating me over the head at the gym if I push too much). Patience is the hardest thing for me. I already have a pretty short fuse and I have a small (ish) tendency to be hard on myself. Excuses and whining annoy me. I know I have a lot of faults that I need to work on, patience being close to the top. Another is I care too much about too many things. After being this sick I want to take care of anyone who is hurting. It would be easier for me to take their pain so they wouldn't have to carry it anymore because I can't stand watching people hurt. I have a seriously overactive momma bear instinct. I wish more people had empathy. I certainly wish more doctors had it.
Before all of this happened to me, I never admitted I had fear. Even to myself. Not knowing what was going on with my body, knowing something was wrong but being told my results were "normal" taught me the taste of fear. I've never been a vain person, especially when it comes to physical appearance. It's hard for me to fight for myself. This, along with the fear compounded so much that I was almost crippled by it. I started to believe that the doctors were right, that maybe it wasn't real and I should try the anti depressants several doctors suggested. It wasn't until I learned to acknowledge my fears, to give them names and accept that I was afraid, that I could grow from my fears and rediscover the strength I used to take for granted. Accepting that I was afraid somehow gave me the courage to overcome the experiences. By accepting, I wasn't saying by any means that I was ok with what I'd gone through. It was almost like I was giving myself permission to be upset, permission to say the whole thing sucked and I was mad as hell. It became cathartic.
People have told me my story inspires them. That encourages me to keep pushing, to keep healing and writing. If my story helps even just one person overcome their own health problems, it'll all be worth it to me. One thing I need to say, though, is that my mom is the one who deserves the majority of the credit. She absolutely refused to give up on me, and refused to let me give up on myself. I don't know what would have happened if we hadn't gone to the Cleveland Clinic when we did -- I don't want to know. I know it makes me uncomfortable when people say my success is due to me. It's not. It's due to my mom fighting for me every second of this process. It's due to my family; my sister, brother, dad and stepdad and their support. It's due to the doctors and nurses and Ed for taking my word at face value and not writing me off. It's due to friends sending their encouragement. I'm blessed by the people that surround me. My success stems from them. I couldn't have gotten better without them. If they say otherwise it's very kind but not true. If only because I say so, damn it.
I understand that at some point I'll have to take some credit for getting better. I need you to understand I will fight off that moment as long as humanly possible. I can take credit for my temper and for my stubbornness. Once mom convinced me to fight, I fought. I fought for her, because I know for damn sure she fought like hell for me. I would take a bullet for my family (and I consider my friends family), literal or metaphorical. I definitely prefer the metaphorical scenario, but still. I know that seeing me as sick as I was hurt loved ones as much as my symptoms hurt me. This was my biggest motivation to get better. If I can help it, I'll protect my loved ones from pain, physical or emotional, whenever possible. So I locked my jaw and took those small steps. Eventually they added up and I was (finally) on the right road again.
I'm not at 100% yet; I still have my work cut out for me. Now that I'm up to 45 minutes of exercise without having my heart spike over 150 BPM, I can start interval training to add speed and incline. I can also try out adding other forms of exercise in slow segments while watching my HR on my own monitor. Since I "graduated" from CR, I'm moving to the independent work classes. There will still be nurses there watching us and monitoring our oxygen levels and pulse, but this class only meets twice a week and I no longer have to to attach leads to my hyperactive skin. No more red spots on my chest!! Maybe soon I can start doing at least the barre segments of ballet classes. I guarantee the first class I take I'll end up crying before, during, after or all of the above. Happy tears of course. And as soon as my shoulder stops trying its hand at flying I can start MMA to vent off Scottish temper steam.
Later on, when I trust my body a little more I'm going to get a small heart tattoo on the side of my right wrist. I'm also planning three more tattoos that are quotes. I want to get "Excelsior" right under my heart on my rib cage; "Though I walk through the valley of the shadow of death, I will fear no evil. XII III.II.I" (The "XII" is for the twelve years it took to get my final diagnoses, the "III.II.I" are for my three auto immune, two autonomic and one genetic illnesses. It's not a reference to its place in the Bible.) on the right side of my torso; "I am the master of my fate, I am the captain of my soul." on the inside of my left bicep. These quotes were some of my biggest inspirations.
There's a quote from Nelson Mandela, who I respect and admire with every fiber of my being. The quote is, "There is no easy walk to freedom anywhere, and many of us will have to pass through the valley of the shadow of death again and again before we reach the mountaintop of our desires". It's one of my favorite quotes from the incredible man. Then again, every time he opened his mouth to speak pure beautiful brilliance came out. I have a lot of favorite quotes from him, but this one in particular stuck with me. At some point I plan to take a trip to South Africa to pay my respects at his grave. The brave man who showed us true courage, empathy and the most open heart the world has ever seen.
This experience has been such a roller-coaster physically and emotionally. I thought I was prepared for whatever work I needed to do for cardiac and physical rehabilitation, but now I see that as insanely naive. I also didn't even think about the emotional aspects of getting diagnosed with a total of six chronic illnesses. The idea of of forever with three new illnesses. This experience has taught me so much about myself and the person I want to be. I learned for the first time that it's ok not to be perfect. There is no cookie cutter reality in life. Nothing is set in stone. Admitting you're afraid doesn't make you weak, it makes you honest. And people show their true colors when someone has anything more serious than a hang nail. All I can say is if you can find it in your heart to be open to new possibilities, if you can open your heart to every facet of your journey it will make everything worth the pain.
I'm still alive. I have another chance to make the difference I want to make. Another chance to meet new people and find new adventures, make more mistakes. Learn more languages. Immerse myself into other cultures. Find projects that scare and intimidate me. Get into more arguments and cause more trouble. Shake things up. Push the boundaries. Laugh more. Love deeper. Fight more fiercely.
Let's have some fun.
