For those of you who don’t know, my name is Nichole and I’m 23 years old.
In early 2007, when I was 13 I woke up and my entire world changed. Over the course of about a week, I could feel something going on with my body. On February 6, 2007 I woke up to find the entire right side of my body COMPLETELY numb. I couldn’t feel anything, not when somebody grabbed my arm, nothing. When I took a shower I would scream bloody murder because the spray of the water hurt so much. I had absolutely no idea what was wrong with me.
I made an appointment with my primary care physician to see what was up. She treated it as a cold in the muscles, gave me some pills to take, and sent me on my way. There was a week worth of pills, I stopped on day 4. By this time the numbness and tingling progressed to my left side as well. When I went back a week later, she practically shoved me out the door, demanding I go see a neurologist.
My first appointment was March 9, 2007. I was there for 3 hours. They did a couple of blood tests, and an EMG. At the end of the appointment, they told me to go home, get some clothes, and come back. They wanted me to stay over the weekend. Those 2 days turned into 49. And over those 49 days I had test after test, MRI after MRI, spinal tap after spinal tap, and a muscle biopsy. I was diagnosed with everything from a stroke to Myopathy, Myasthenia gravis, Polio, Lupus, Muscular Sclerosis, to countless others. They finally settled on Transverse Myelitis, although they weren’t entirely comfortable calling it that, seeing as I only showed 2 symptoms. I was treated with steroids. After that I was eventually discharged.
I went on to enjoy my summer before my 8th grade year, and some of the next year, with no major mishaps. I could still walk, I just dragged my right foot. I did have to have my gallbladder removed in December 2007. After that it was smooth sailing for a while. I was a normal teenager. Well as normal as you could be when you have significant weakness, and patchy pain.
Let’s fast forward to July 2008. Over the Summer I was getting the final details ready for my freshmen year. This was the year I was due to get my booster immunizations. One of them was Varicella, which can trigger a relapse of Transverse Myelitis. Since there was no 100% solid proof that it would affect TM patients (and we weren’t sure if I even had it) I went ahead and got it (on 7/11/08). Within the course of about two weeks after I got it, I slowly deteriorated. I was at church camp (7/18/08) and had to make the tough decision to leave the 2nd night after we got there because I knew something wasn’t right. I fell 4 times within the course of those 2 days. After I told my youth group my decision, they gathered around me, took turns praying for me, and just loved me. When my parents came to pick me up that night they already had an appointment the next day. My doctor thought it might’ve been the extreme heat we were experiencing, and told me to stay inside for about week.
On August 18, 2008 I was admitted into the hospital for the second time. This time I was treated with Cellcept, and IVIG (which I continued for a week every month for the next 6 months), then my doctor wanted a second opinion if I had the Devix’s Disease (reoccurring TM).
He released me (9/2/08) so I could travel down to Houston (I stayed with my aunt and uncle). I had the chance to stay at home for 2 days, one of which my best friend got all my friends together and threw me a surprise party for my 15th birthday (I had NO idea. My house was FILLED with at LEAST 45 of my friends.) Also at this time I was still walking, but with a walker. I was able to walk a few steps before I felt wobbly. When I met with the Houston doctor, he diagnosed me with Cervical Spinal Stenosis. We scheduled a Laminectomy the next week (9/16/08), unfortunately mother nature didn’t agree. This is when Texas was hit with Hurricane Ike, which wiped out the blood banks so we couldn’t proceed with the surgery.
We went back to Dallas and were immediately readmitted into the hospital. We asked them why they couldn’t do the surgery up here, and they said they saw that but they didn’t think it was the problem. So we continued treatment, and therapy. My main focus: get stronger. But in October 2008, they said I could no longer stand/walk, because it wasn’t safe for me. So from then until I was discharged in December 2008, I basically laid in bed doing leg exercises. In November 2008, I had an Ovarian Cyst Removal; and in December 2008, I had the Gastric Bypass to help with all the weight from the steroids. Needless to say, I never set foot in my school for freshmen year (although I did keep up with school through the classroom in the hospital).
This brings us up to the beginning of 2009. Since I was now wheelchair bound and had NO equipment/van/anything, therapy had to come to me. And there is only so much stuff therapists can put in their car to take to houses. Around July 2009 I got my personal wheelchair, but we had no way to transport me. We held a fundraiser at my dad’s work to raise money to get a handicapped van so I would be able to go back and forth to places. In the middle of the fundraiser a man came up and asked “Do y’all need a van?” and just like that, he just handed over the keys. We made 1,500$ through the fundraiser and that’s exactly how much it cost to replace the transmission. That was a blessing. After we got it fixed up I started going to an outpatient therapy gym. I made huge progress there through about the beginning of 2010. Around that time my therapist was able to get me into a therapy gym with an Auto-Ambulator. I stayed there for a month.
July 2010 I get a call from a nurse asking if I wanted an appointment with this new doctor (which coincidentally was one my mom called in 2007 who specialized in TM, but was based out of Maryland. I felt like that was God saying “Just hang on a little longer”). I went to an all-day clinic, I saw about 8 different types of doctors. They unanimously agreed that I didn’t have TM, but I had Venous Hypertension (the beginning of my sophomore year, I was attending public school). Back and forth between different surgeons, we finally found the one. I had a Cervical Laminectomy on October 22, 2010. I spent a month and a half in rehab and was released 12/11/2010. (I finished my sophomore year in home-bound).
Easter Sunday in 2011 I had a huge scare. I was up until 4am throwing up, even though I had nothing left in my stomach. I finally told my mom to call 911. I was rushed to the nearest hospital to run CT’s, and they told me my intestines were in a knot. Then they rushed me to the nearest children’s hospital. There they did emergency surgery, and they had to do a 7 inch incision. They called it a Peterson’s hernia. I was in the hospital for 5 days.
Over the Summer in 2011, my doctor told me about a place in Baltimore, Maryland called Kennedy Kriegor Institute. I got the opportunity to fly there and stay for a month-ish. (6/20/11-7/29/11) over that month I was blessed to be able to experience all of KKI. They have AMAZING equipment. Everything a spinal cord injury patient could ever dream of and more.
August 2011 I was FINALLY ready for my senior year of high school. My health was in a stable place (I started an experimental medicine 4AP), and I had no plans but to attend school full time. I was looking forward to it. I started it in full swing, joining clubs, the NHS, and just enjoying school. I attended prom and was nominated for my school’s version of prom queen. I didn’t win it, but being in the top 5 out of 700+ students was an honor. After prom, right before graduation I was given the opportunity to be able to use a wheelchair that had a stander built into it. That way I could use it to “walk” across the stage. May 25, 2012 (the day before graduation) I had just got my hair done, and was on my way to get my parents to go to therapy to pick up the wheelchair (I was not driving) when we rear ended another car. My head came up and hit the wood trimming around my van, knocking out 4 teeth and making me bit through my lip. I broke my ankle and my foot in 2 places. Since my foot was broken I couldn’t put any weight on my right leg, making using the wheelchair impossible. Even though I spent hours in the ER I still made it to my graduation, makeshift cast, stitches, swollen face and all. I went through too much in my life not to make it across the stage. Three days after my wreck I took and passed the state exam for pharmacy techs, making me certified to work in a pharmacy setting.
Since the wreck we put together fundraisers for a new wheelchair (insurance only pays for a new one every 5 years, & mine is barely 3 years, but it's been shorting out and the frame is bent from the wreck. The one were trying to get actually stands and I can "walk" around with it, so I can be a REAL girl (; or transformer, whatever) and a new van because it's 20 years old and since the wreck it’s been giving us a lot of problems. One morning (7/20/12) we got some AMAZING news. This company DARS I’ve been working with is going to pay for the wheelchair! A miracle. The money these fundraisers coming up this month are going to bring in is going toward a new van. (I have since gotten the new van, and the wheelchair that acts as a stander).
The fall of 2012 I started my freshman year at the University of Texas at Arlington. I got a scholarship through Swim With Mike, which is based out of USC (and is an AMAZING program), and they gave me a full ride. College is quite a bit different from high school. All of the responsibility is pushed on you, and the teachers really do not care whether or not you attend class, or even do your homework. They are not there to remind you, just to teach you. I am not going to say that it was too overwhelming (I was taking 12 hours) while at the same time going back and forth to Plano (an hour away) for therapy three times a week, as well as getting all my work done. It was definitely challenging, but I knew in the end, it would be worth it. I finished that semester with three A’s and a high B.
I enjoyed my Christmas break, and getting to hang out with friends who moved away for college. We had our normal "Friday family movie night" a couple of times. I love getting together with them like that, because most of the times we do not even watch movies; we just sit there for hours on end talking about anything and everything.
The day after Christmas (12/26/2012) it was a Wednesday night around 10 or 11 PM, I started to feel funny. (When I’m explaining this, I am putting together what I remember as well as what the others who were there had told me. It is like I am trying to put together a gigantic jigsaw puzzle) I was in my room getting ready to go to bed, my mom was in the shower, and when she got out apparently I told her to call 911 (I do not remember this) and right after that it was like I closed my eyes, and when I open them, the paramedics were standing in front of me. (I did not literally close my eyes; it is like my mind skipped scenes) I remember them telling me that my vitals and oxygen levels were good and the only reason they would take me to the hospital is if I wanted to go. I, of course, said no. This was when my speech started to slur like I was drunk. I could no longer form full sentences, the only thing I could say was, “Something wrong, not right.” My mom immediately said that I was going to the hospital. This is where I completely checked out. I have no recollection of them getting me on the gurney, rolling me down the hallway, going out the door, or putting me into the ambulance.
Once I was in the ambulance, my mom was in the front seat, and my brother and dad were getting ready to follow us up there. My brother was looking out the window and he saw the ambulance start to violently shake. He ran out there and yanked the door open, asking what was happening. This is when I had my first seizure. They got me to the hospital, put me in a room in the ER, (and I am still a little confused with what happened next, or the order in which the next things occurred) , and after they thought they had stabilized me, I started to have another seizure. (The types of seizures I had are called tonic clonic seizures or grand mals) After the second one they tried to incubate me, and I ripped out my breathing tube, which caused me to aspirate, and that gave me pneumonia. The ER staff broke the seal on the crash cart, but they did not have to use the paddles on me. I was completely unresponsive. My mom had already started calling my extended family, and close friends. They took up the entire ICU waiting room. They each took turns, one at a time, coming into my room. My parents, family, and my friends that I have known for 12 years; I did not know any of them. I did not respond to a single person. They told me that I would just lay there and stare at them.
That is the scary thing. Not being able to remember that you cannot remember. Does that make sense? Where was I when all this was happening? Was I having a little chitchat with God? Was I talking to my grandma? Was I just switched off? Will I ever be able to recover what I do not remember?
The following day, Thursday, I slept the entire day. I was in and out, only conscious (but not responding) for a few minutes at a time. Friday was the day that I started to talk, and converse with people. This is also the day that they told me that I was anemic. They said that my hemoglobin was somehow 6.1 (normal is about 12 or 13) and they gave me my first ever blood transfusion. I ran a fever off and on while I was in the hospital, but I was discharged on Sunday, December 30. Just in time for New Years.
I had a follow-up with my neurologist two weeks later. I told him, in detail what had happened and he decided to do a couple tests to find out why it even happened. The first one was a CT angiogram to see if my brain was getting enough oxygen, and that came back normal. He also did some blood work to check my hemoglobin, because he said that no one for any reason should ever get down to 6.1. It came back that my hemoglobin was 9.8, which is still a little bit low; but normal. The next two tests that were scheduled are an ECHO/Doppler for my heart and legs, to check on circulation. They both came back normal. I ended up having to go to a chemo clinic to get iron/ferritin infusions once a week, every week for 3 hours, from January 2013 until the middle of that same year.
In the Summer of 2015, I was able to be a part of the Student Entrepreneurship Fellowship which was funded by the National Science Foundation. It was held at IC2 Institute at UT Austin for six weeks. The main goal in this fellowship was to come in with a business idea, and be ready to network with professionals in that career field. This was incredibly challenging because we were thrown into an environment that we had no idea where anything was, or how to get there. Our main goal was to network and interview potential customers and professionals. With their feedback, we were told to create and morph our idea accordingly. At the end of each week, we presented our idea, and the information we got from talking to individuals. I worked with two different partners, and one of the two projects I worked on was with 3-D food printers and patients with dysphagia, or eating disorders. Our main goal with this was to try to create an aesthetically pleasing food that would essentially “melt in your mouth” (think cotton candy), however they would get all the nutrients from the food that they would not get any other way. The second project I worked on was combining affordable housing, micro housing, and cooperatives. We mainly focused on minorities who did not qualify for financial aid and were constantly taking out massive amounts of loans. I got to speak with a lot of interesting people on both projects.
In the midst of all the above, I started my second semester of school. I think all my classes ended up to about 16 hours. It was definitely a full course load, and the classes are getting harder. During that time, I wasn’t going back and forth to Plano, but trying to squeeze in a couple hours every other day at this little gym up the street. I started therapy backup in Plano in 2014, going twice a week when I was not in school. I slowly got stronger, and then I would plateau sometimes. I never got worse, which is a blessing. With therapy and school, I also did driving training in order to get my license with hand equipment. DARs pays for my training in 20 hour increments. The first 20 hours were all right, but my trainer was not totally convinced that I would be able to get my license when they would have to pay for the following 20 hours. When my counselor for DARs got the report, she was really struggling on whether or not to help pay for the next set of hours. I convinced her that I would do whatever it took in order to learn everything and accomplish getting my license. She took a big chance on me, and decided to pay for them. When my trainer came out and we got everything set up, by the end of the first day I had exceeded where he hoped I would be. When my counselor got the report from the second set of hours, she was very pleased, and was willing to do 20 more so I could get highway time. I took (and passed) my driver’s test in December 2015. The equipment that I trained and tested with (Joysteer http://www.joysteer.ch/?lang=en) was not approved by DARs as a modification of the time, however got approval in January 2016. After a long, lengthy, extensive battle, (because during the first of the beginning of 2016 DARs was transitioning over to Texas Workforce Commission) my specific case was approved down in Austin. It is now September 2016 and I just got the okay for me to start looking for a van in order for it to be modified.
Up until now, (my fourth and final year in college) each semester I have an A/B GPA, last semester was my first year to get a straight 4.0. Each year since starting college, my scholarship through Swim with Mike has also been renewed. What was not covered by that scholarship was covered by the 1800 medical scholarship that I received, and my senior year I was fortunate enough to receive the Craig Nielsen Scholarship. What was not covered by any of those, DARs helped fund.
As of right now, I’m getting a B.A in Interdisciplinary Studies with a concentration in Business Communication (which is a big fancy way of saying that I can take classes from different disciplines in order to educate myself around different perspectives of my concentrations) and I am minoring in Disability Studies, as well as getting a Diversity Certificate. With everything that has gone on since I started my college career, I am still on track to graduate in December 2016, and if this last semester goes as well as I hope, I will be graduating with honors! I have been given many wonderful opportunities.
I started my college journey off as wanting to major in biology, go to med school, and become a doctor so I could help people go through what I did. However, with everything that has gone on in my life, and all the help that I have received, I realized that I could have a more “hands-on” approach to helping people, especially those who acquired a disability and have to coincide their old “normal” identity with their newly “disabled” one. I am planning on working with foundations or charities. I want to help give back, and give hope just like people did for me in my time of need. It would be very rewarding to be someone’s ray of sunshine in their storm, and I am very much looking forward to starting my career after I graduate this year.
I am not saying that I have it harder than any other student, but I kind of have an ultimatum. Progress with therapy and get stronger, or hit the books hard and get good grades to get my degree on time. I have my life in one hand, and in the other I also have my life. Do I want a good career, or do I want to walk again? Either way, I am up for the challenge. I will walk again, and I will fulfill my dream.
I’m writing this for two reasons. First one, getting my story out there. Who knows if there is someone else like me who needs help? I remember being discharged and having no wheelchair, no way to get ramps for me to even get into my house. Thank God for my mom. She never took “No” for an answer. Because of her, I got everything I needed. She even showed the social workers new programs. If they didn’t know about them, who knows if anyone else does? She’s more than willing to help out anyone who is having trouble getting things done.
The second reason, is to let people know that they are not alone. I woke up one day, unable to feel my body. I had no idea what was going on, who to go to, or anything. 5 years later, I finished high school on time in the top quarter of my class, and well on my way to graduate from UTA within four years. Who would’ve thought? People ask me “How do you do it? How do you stay strong?” there is no medical reason why I can’t walk, just that my muscles are super weak. Besides, I don’t fight my own battles. God does. I’m not going to sit here and tell you that I never had doubts. I don’t think there’s a single person who asked “why” more than I did. I had and still have no idea why God chose me to put through this, but he did. And guess what? I’m still here, going strong. I promise there’s a method to His madness. He is preparing you for so many great things. You may think it’s all for nothing, but look around! He’s using your faith in Him through your struggles to prove to someone in your house, school, or neighborhood; that if He brings you to it, He’ll guide you through it. He doesn’t pick the weak. He is always with you, and will never forsake you. Every time I think about giving up, just wanting to say, “I’m done”; He sends me little reminders. Whether it’s a new treatment plan, or a doctor I’ve been trying to track down… it’s His way of saying, “Hi, remember me? I’m in control, trust in me.” Remember to H.O.P.E (Hold On, Pray Every day).
“Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.”
1 Thessalonians 5:16-18
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.’”
“God is within her, she will not fall. God will help her at break of day.”