By Jayden Barrett
This is a short interview I had with the amazing Ali Guthy. It’s quite short, and very sweet. But, above all, so very inspiring. Her beautiful outlook on life uplifts me, and I am sure many others. I want to do this interview with as many people as possible who have NMO, or any other life changing disease, so you’d be interested in doing an interview with me I would absolutely love to have you contact me on Facebook.
How old are you?
18
How old were you when you were diagnosed?
14, but I didn’t know I had NMO until I was 16 (my parents knew, but I made the decision not to know what I had until I was older).
What do you remember from the day you were diagnosed?
I went out to see a movie with my mom one night, when suddenly, while driving to the theater, I experienced an extreme, piercing pain in my left eye. I spent the next week traveling from one doctor’s office to the next, until finally a neurologist ordered the NMO-Igg test, which he had never ordered before. I was diagnosed once the results came back positive, which was roughly one week after the onset of my first symptoms. I was fortunate in that I was able to receive such a quick diagnosis. I had lost most of the vision in my left eye, but with the correct diagnosis, we were able to treat the attack effectively. The vision in my eye was completely restored after (approximately) a three-month recovery period.
Do you remember how your parents felt, or how they reacted when you were diagnosed?
I was 14. I was young, I was naïve, and I was ignorant. High school can be tough enough as it is; what 14 year-old wants to know they have an incurable rare orphan disease at the start of their freshman year? I was basically in denial. I made a conscious decision to ignore my diagnosis, and all the effects it had on my family. I remember my parents expressing their grief and frustration in very different ways: my dad, always the calm one, became even more withdrawn, distant, to himself, and very contemplative (he internalized my diagnosis, but that doesn’t mean he wasn’t there for me; my dad is one of the most supportive people in the world and I can’t imagine going through this without his love, compassion, and understanding). My mother, always very expressive about her feelings, was struggling to find a balance between conveying her emotional distress while protecting me from the reality I was attempting to escape from. Both my parents, however, despite their growing fear of losing me and dealing with my diagnosis, continued to support me and my decisions in every way possible.
After hearing that you were diagnosed with NMO, did you feel like there was any hope left?
The simple answer is yes. Like I mentioned before, I received my diagnosis just a week after the onset of my first attack, but I chose not to know the nature of my diagnosis. That is, I knew there was something wrong with me, I just didn’t know what. I didn’t want to be tempted by looking things up on the Internet, which I thought would further incite fear and panic within myself. I just figured that ignoring the problem would be the best way for me to get through this difficult time. By shielding/protecting myself from my diagnosis, I remained oblivious to all of the features of this disease that patients tend to fear the most. My situation is unique, however, because I could afford to be ignorant. I had parents who were able to bear the wait of knowing what I really had, and what it could really do to me, and therefore protected me from ever having to feel hopeless.
How has NMO changed your life, and the person that you are?
NMO has changed my life in the sense that I am know a much more open person. In the early stages of my diagnosis, I was very closed off, and not very communicative about my emotions and how I was dealing with the disease. After living the past four (almost five) years with NMO, I am now much more able to relate to other patients, and provide support for other people. Whereas I use to rely on the comfort of my parents, I am now able to provide that same feeling of support to other patients. Despite these strides, I feel the most important way NMO has changed my life is in the realization that, in reality, it hasn’t changed anything at all. The most important thing this disease has shown me is that nothing can bring me down, nothing can stop me from being who I am, and nothing can stop me from moving forward. This disease is not who I am, but what I have, and I feel it’s imperative that other patients recognize that distinction as well.
How does NMO affect you every day?
I may look like a normal college student walking around campus, but that doesn’t change the fact that I wake up every morning knowing I have NMO. I wake up, and go to class, and have breakfast, and hang out with friends, but that doesn’t change the fact that at any moment, I could be brought to my knees by the crippling pain of an attack and be rushed to the nearest hospital. When people look at me, they don’t see that side. Just because I’m not blind (although I almost was) and not in a wheelchair does not mean I’m not directly affected by this disease. I still lie awake in fear that all of a sudden my back will start to hurt or my legs will go numb as they have several times before. But the important thing to remember is that there is always a silver lining. Today, I am okay, and I will keep moving forward and living me life just as I’ve always planned to, and nothing will stop me from doing just that.
In one word, how would you describe NMO?
One could read this question in two different ways: 1) In one word, describe the experience of NMO, or 2) In one word, describe the disease NMO. The disease itself and how we experience, to me, illicit two different words. I would describe the disease itself in one word as: devastating. I would describe the experience in one word as: inspiring.
If your doctor could tell you exactly what you did to get NMO, and that you could go back and change what happened so you never got it, would you?
I use to dream that that could actually happen. I use to pray and hope the clocks could turn back to the moment just before my first attack; but the fact of the matter is, that’s not going to happen. I’ve been diagnosed with NMO and no one can turn back time to change that. All we can do know is look to the future, to all the progress that is happening in the medical field to change the face of this disease forever, and deal with what we have in the meantime. But if it were possible, if I could go back, I would not. All the good that has come out of this disease, all the progress, change, and sense of hope and community could not be more inspiring. I am so passionate about the work we do, as the Guthy-Jackson Charitable Foundation, to change the nature of this disease, that I can no longer imagine my life without the support, love, and understand of the NMO family I am now a part of.
If you could tell the people reading this article a few words of advice about living with NMO, or any life changing disease, what would you tell them?
I wrote a little guide for NMO patients called “A Survivor’s and Thriver’s Guide to NMO,” but the steps I describe could be applied to any life-changing condition.
The steps are: 1. Discovery 2. Throw A Fit 3. In the words of my Mom: Put on Your Makeup & Get Out There! 4. Don’t Be A Victim 5. Remember: The Sun Will Come Out Tomorrow!
Step 1: Discovery Know what you have! Ignorance can be bliss but it’s also a means of avoiding the situation. Take your time, but confront your enemy, face the facts, and then, in your own way, learn how to deal with the facts presented.
Step 2: Throw A Fit Don’t bottle your feelings but don’t allow them to take over your life. Stick to a normal routine, but allow yourself to balance that normalcy with the realities of your unusual/unique circumstances. When someone says something or does something, even if it’s the smallest comment, if it makes you feel upset, be upset! Allow yourself to have bursts of anger or fits of depression, as long as those moments don’t start to encroach upon or ruin your normal life.
Step 3: (In the words of my Mom) Put on Your Makeup & Get Out There! Don’t let the reality of your situation or the every-so-often fits of depression stop you from living. Lead a normal life, and pursue activities or goals that are both enjoyable and alleviate you from the stress, anger, and confusion that surround this disease.
Step 4 Don’t Be A Victim Self-pity, despondency, and all other forms of internalizing a diagnosis like NMO are not the answer. Don’t be the helpless Cinderella waiting for the magical Prince Charming (commonly known as the cure) to come sweep you off your feet. As much as it pains me to say it, in the realm of NMO, there is no time for the magic of fairy tales. Don’t be a patient, be an advocate. Be your own Prince Charming, and be a part of the search for the cure. Donate blood to the repository, talk to your doctors and other patients, and spread the word about NMO by educating those around you.
Step 5 REMEMBER: THE SUN WILL COME OUT TOMORROW Stay positive! Always try to find the silver lining.