My name is Francisco Garcia. I wanted to share my story. I am really bad with dates. So, some of the information may not be chronologically perfect, but my feelings and experiences are engraved in my memories like it was yesterday. I will start when me and my wife, arrived in Texas in October of 2008. We were celebrating our two month wedding anniversary and had planned this migration for quite a while. She was born in Texas, but at five year old moved with her family to Puerto Rico. I knew her all my life from the many bowling leagues I played throughout the years. We were really good friends. We talked about dating and one day it came true. The love of my life was always right there in my story, I just was too dumb to notice. But as fate would have it, I found all I had ever dreamed about, right beside me. I felt like the luckiest person in the whole, entire world. So, in a short time, I knew she was the one. When we started dating, I had recently finished my Bachelors in Information Technology and was pursuing my Masters in the same department. She was finishing her Bachelor in Marketing. The economy was really bad during that year of 2007 and good jobs were scarce and far between. I had the opportunity of being a professor and I fell in love with teaching. Being a Professor combined my two passions, Computers and education, into a career.
We explored our options, and decided that it would be a great Idea if we got married and moved to the US to pursue better careers with our degrees. So we put our plan into action and started looking for options into which state to choose. We researched the many job opportunities looking for bilingual candidates and decided that Texas was a great choice. She had her aunt in Texas and we asked her if she could lend us a hand and receive us in her home, for a while, until we found jobs and could find our own place. She accepted and we started moving forward on our plans. We sold or gave away, every possession we had. My friends and family were really supporting in our decision and helped me in every step. I finished my MBA in November, and that same month we had our wedding planned. IT was one of the happiest days of my life. We left for a short honeymoon, and returned to Puerto Rico to start packing for our trip to our new home, Texas.
As soon as we arrived we started applying for jobs. I applied to thousands of jobs, got many Job Interviews, but none of them really made me feel excited. I was feeling the pressure of accepting the first offer that came. We had our savings, but I knew that they were not going to last long. I sat down with my family and we talked about our situation. They supported me in looking for a job that I was going to feel comfortable with. So I stopped applying for everything and started pushing towards my career choice. I wanted to be a professor again; I knew that was my calling in life. After a few days of sending resumes, I got my first interview in something I liked. I remember it well because I was so nervous that my accent was really bad, and I knew I sounded like Ricky Ricardo from the show “I Love Lucy”. Then my second interview came, and it was the one I was really hoping for. It was as a Technical Professor of Computers, teaching classes in all the subjects about Information Technology I loved. It was the Job I had always dreamed and hoped for.
The day for the Interview came, and I had practiced every day of that week with my family. Finally I got to the Interview and when I stepped in front of that classroom, I felt right at home. After my presentation, they took me to a room and right there gave me the books for the classes I was going to teach. It happened so fast that I didn’t even have the time to savor exactly what was going on. As I walked outside the school carrying 5 or so books and many other hardware related objects that weighed almost 50 pounds, it dawned on me. I GOT THE JOB!!!!
I was so excited. I spent three months as a part time instructor and loved every minute of it. I didn’t care that I had to drive and hour and a half every day to get to my job. I was doing what I loved and I was getting paid for it. After those three months they gave me the Full Time Instructor position. Now, instead of 4 classes, I was going to teach 6. I became a workaholic. I was at work almost all day, because I also go involved in tutoring students in other subjects. Co-workers and students always told me all the time that I was always smiling. When I got home at night, I was so happy. I was living my dream. I was so fortunate about everything, but above all I was lucky to have such a wonderful wife that understood all that time I was neglecting from her. I feel so blessed for having her by my side. Honestly, I felt invincible; I felt the cliché of being on top of the world!
One day, after finishing the theory in a class. I felt pain when I moved my left eye. I had not noticed, but focusing was a problem with that eye. I blamed this blurry vision on the light from the projector when showing PowerPoint slides, usually you step in front of the light, now and then, and it blurs your vision a bit. I also had a bad headache, but I blamed it on not having breakfast, nor lunch, that day, because it was one of the hectic days. I packed my tools and books, and left for home. The headache wouldn’t let me sleep, but I didn’t care. The next day was my day off, and I could get some sleep during the day. After many doses of Ibuprofen, the headache was dimmed enough that I could fall asleep. The day after that was horrible. The headache was so bad that even opening my eyes made it worst. I started thinking that maybe I was having migraines, but I had never had them before. I didn’t know what was going on, and I started getting really scared because my vision in the left eye was really impaired. It was like if I had just splashed out from the deep end in a pool and my eye was looking through water. I explained the symptoms to my uncle and wife and did a bit of research in the Internet. We decided that it was best if I went to a Hospital. There was one problem, I had no insurance at the moment because my insurance was supposed to start the first of the next month and it was still the 16th. I never had something like that happen before, so we decided to go to the nearest Hospital ER.
Let me explain a little bit of what was going through my mind at that moment. I have always been a big guy. I am 6’2, about 320, but never had any serious health problems. I had suffered from depression but no problems with anything else. In fact, I was always a really active guy for my size. I love sports, and like I said before, bowling 3 times a week and playing basketball were part of my weekly hobbies. Now, all of a sudden, I have this splitting headache that is making my eye blurry. I was basically panicking, and so was my family. I spent 1 hour in the emergency room. They did a CAT scan, a couple of labs, but they didn’t find anything. They told me that I had to see an Ophthalmologist because the pain may come from bad eyesight, and maybe I needed glasses. We left and I went straight home, took some sleeping pills, and tried to rest. The next morning, I went to work, with that horrible headache still there and my eyesight in the left eye still blurry. I kept working like that for about a month, until my insurance started and I could go to an ophthalmologist like they suggested in the emergency room.
At my appointment with the ophthalmologist he did every test available in his office. They dilated my eyes, vision tests, color tests… you name it, it was done. He kept looking at my eye with that eye microscope, and his demeanor started to change. He was acting as if he had found something he didn’t like. I started getting anxious and he noticed. He asked me if I have ever been to a Neurologist. I answered no, and he said that I needed to make an appointment with one ASAP. I asked what was it that he saw, and he told me that there was something that wasn’t right and asked me if I had anybody in my family that had MS. I knew about my mom’s cousin that had MS, but nobody else I knew of. He finally said that I needed to see a Neurologist, because there was really bad inflammation all around the optic nerve.
I was really devastated with that news. I knew about my mom’s cousin and I had vivid memories of how we went to see him at his home after he had both of his legs amputated from gangrene after having an accident. I never knew anything else about what had happened to him, at the moment. I didn’t know anything else about MS, so my lack of knowledge about it, made me start thinking that maybe I was going to end up like that. I didn’t know at the moment that his MS was controlled. He died because of a bad infection which was caused by an accident he had with a rusty hospital bed and complications with Diabetes. The only thing that kept going through my head during that month was that it was all going to happen to me. To make matters worse, the bill from the Emergency Room visit arrived. For one hour of examinations and labs, they gave me a $3,000 bill. Now, not only was I scared out of my mind with the question of an incurable disease, but I was scared even more of the possibility of getting ill and have to visit a hospital again.
We searched for a good Neurologist. I started asking people around work, to see if they knew a Good one in the area. We heard of a good Doctor that had treated one of my co-worker’s family member. That family member had MS, and they recommended him. So we went ahead and scheduled a visit. In the meantime, I fell more and more in depth with my job. If I loved it before, now it was my escape from thinking about my health, the unknowns, or what ifs.
After two months, I went to the Neurologist appointment. We talked about what had happened with my eye. We talked about what I was feeling, symptoms, and all the things that were going through my mind. He told me that he had to do some MRI’s and a Spinal tap to see if it was what he suspected, MS. I understood and his office started scheduling all the examinations. I went to work that day, mostly depressed, but not because of the possibility of having MS, but on the knowledge of how much those Doctor visits cost. and not knowing how was I going to be able to pay for all the other things that I needed to take care of. I really knew I had a problem. I had to pay the $3,000 bill first, before I could get all the other examinations done. Unfortunately, my wife was trying still to find a job. But she wasn’t as fortunate as I was.
I kept working and working and moved closer to my job. We kept paying our debt bit by bit. After three months of this, finally we paid it completely and could afford to do the exams needed to find out what was going on. So this meant that I had to use my Medical Insurance. My experience with the Insurance at that moment can be summarized in one sentence: It is one of the most frustrating and disrespectful experiences I have ever had. It is a time where, basically, other people put a value on your life, health, and peace of mind. I also had the experience of not having one. So frustrating or not, at least I knew I didn’t have to pay those astronomical bills. This meant that I was going to learn the whole Insurance lingo and comedy routine. First they couldn’t help me with the first examinations because I had not paid my Deductible. Then, after many examinations and medications, they would not pay for the next set of MRIs because I had not fully met my “Out of Pocket” expenses! After I met those expenses, then they started sending me letters that they did not cover Pre-existing conditions. So that means that I have to show that I don’t have a condition that my doctor is trying to diagnose? At the same time you keep getting bills from the hospitals and doctors telling you that the Insurance won’t pay their part because of, this and that. Thankfully my Doctors were so understanding, and their nurses were so well trained that they knew all about how the insurance companies work. So they persisted with my wellbeing in mind. Basically it is the run around they do to everybody, in hopes that you get so frustrated that you pay the amounts they specifically did not pay in the bills and stop trying to fix the services and benefits that you have paid for. It is all about the money they don’t have to pay, and not the life affected by that money. But of course, they will never say this, and at the end, it is all a communication problem. But as soon as I understood the rules, I knew how to play the game, and they were not going to catch me off guard again. Knowledge is one of your best allies, always. By that time I knew more about their insurance, than many of the customer service representatives. Thankfully one of my co-workers was also a lawyer, and gave me a lot of help in the matter. Keeping every bill and track of every examination cost, is the only defense against these problems. Every time we called, they gave us different explanations on whatever they thought was the situation.
On October of that same year, I was diagnosed with MS. By this time, I had learned so much about MS that I saw this, not as bad news, but as the great news of knowing what was going on, and the key to treating all the problems I was having. I was getting my medications and getting infusion to see if they helped me with the vision problems. I was decided to fight no matter what. I had some health problems, but nothing I could not deal with. Everything was starting to settle down and I was about to receive great news. I received a promotion at my job at the end of that year and was now the head of the Department of the school of Information Technology.
Three months went by and the medications made me feel horrible. I knew that this was the prize I had to pay for mitigating the possibility of new attacks. Nothing was going to stop me from doing what I loved. No fever, no pain, no blind eye, was going to be enough to keep me off my duties and responsibilities with my students. But one thing always bothered me. No matter how many infusions I got, and how many times I had heard from other patients and doctors that the vision was going to get better in my left eye, it was actually getting worse. By this time I also had a Neuro Ophtalmologist in my team of Doctors.
One day, I got a really bad pain in my legs. The pain was as if somebody was burning them and ripping them apart. It was horrible. After that, they went numb. I did not know what to do and I just told my wife. I couldn’t sleep. The next morning, my left leg was horribly numb and my thigh was even worse. I couldn’t even touch it because the pain was so excruciating. I went to work like that, and my doctors said that he had seen, in my latest MRI, that I had a bit of arthritis in my lower back. This could mean that maybe I had a pinched nerve. So I went to work, made an appointment with a chiropractor and continued adding problems to my, “not solved” list of ailments. To this day, I can’t really fully use that leg, and the pain is really bad.
I had been taking MS medications for about six months. Symptoms continued to surface, but nothing like the one that was going to shake my whole life. Around August, I woke up one day with a headache that was even worse than the ones I had before, when I partially lost the vision in my left eye. I noticed that now it was my right eye where I was having the pain. My vision was now completely blurry in both eyes. I called my wife and basically fell into tears. I was really in shock. I never expected anything like this to happen. Not after I thought the disease was supposed to be medicated. I did not know of many patients of MS that were blind in both eyes. I could not believe it. I went to my doctors and they told me that I had to get more help. They told me that they had already done every treatment they had in their power and they really did not know how it was attacking my right eye now. They sent me to the MS clinic in Dallas and there, the Doctor started all the same procedures I had, once before. I was really hopeful that I was going to get my vision back because we were capable of taking fast actions this time. After two months of trying everything, none of the treatments, Infusions, IVIG, etc. made any difference in my vision. I was so desperate, and thinking about it, still brings tears to my eyes. On top of everything else, my fatigue levels were horrible, even walking for five minutes made every part of my body ache. The biggest question in my head was what was going to happen with my job. I tried everything and even daydreamed in my mind about the impossible. Finally my doctors gave me the bad news that there was nothing more that could be done, except for me to apply for disability for a couple of months to see if my eyes got any better. At least with short-term disability my job was protected and I could have 5 more months of treatments in hopes of returning to work. One day as I sat with one of my doctors, I started asking questions that surely sounded desperate. My doctors sat down with me and basically told me exactly what the reality of the situation was. That there was nothing that could bring my vision back at the moment, and that in fact, it was going to get worse and worse. I hated him at that moment. I was so angry. But then he grabbed my hand and told me he was sorry. I understood. He didn’t want to let me fly off in depressive hopelessness. He wanted to let me know, that unfortunately in the present day and age, there is really nothing that can be done for the situation. I had to accept it and try to prepare myself for the changes. I still have hope, but I don’t let it play with my sanity. The best way to explain it is with a phrase I saw my best friend use one day. I have never been a Religious person, but this phrase made me find peace in many steps of my journey. It said: “God, give me strength to fix the problems that have a solution. Give me serenity to accept the things I can’t change. But most of all, give me the wisdom to know the difference”. Devastated, I had to notify my work about the situation. Being there that last day, and walking out of that building, will be something I will truly never forget.
Unfortunately, my vision kept getting worse and worse. Finally my doctor changed my medication and gave me Celcept on top of my MS medication because they suspected it could be NMO. About a year ago they told me that they were going to stop the Rebif, because of the many adverse reactions I was having to it, and they were going to continue with the Celcept. Six months ago they changed my Doctor in the MS clinic, to the NMO specialist. He said that we are going to continue with the treatment and thankfully I have not felt anything get worse. For the moment I am stable. Now I spend my days finding solutions for the many things that were taken away. Technology, being one of my passions, is playing a big role in those solutions. Now I use a projector as my computer screen and, even though I am not able to see everything on an 80” by 60” wall, I am able, to at least, play around with something, keep my mind occupied, and research. Hope is a big part of my life, but it is not my only focus. I ask myself everyday what I can do to make it better. I value independence, and most of all, I value knowledge. I think of myself as forever the student. I am so thankful that destiny brought me to a place where I can get the best treatment possible. And that was all just by luck. I decided to stop focusing on the bad things that have happened and find the good things that were hidden from perception. Ironically, being legally blind, took me to see things in a different way. Now my life has taken a different route. I am fortunate because I am still here. Maybe I am not capable of doing all the things I love, but I love trying new ways of being more capable. Thank you for the chance of releasing stress through words. I hope I can help somebody with my story.
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