I was 14 and it was the summer before my freshman year of high school. While away from home at camp, I started experiencing horrible lower back pain that extended down through my legs. It would initially come at night after being active all day. At the time, I could not really describe the pain. However, if I were asked to do so now, I’d describe it as a sharp nerve pain and deep burning in my muscles. This pain led to me spending 2 days in the camp infirmary sleeping, eating bananas, and sleeping some more. The camp doctor was just treating me as if my body was lacking potassium – this explains the banana binge – and said I had a “Charlie Horse”. I felt better after a lot of rest and was able to finish my camp session.
After my initial diagnosis, I saw my new doctor and had MRI scans every six months in Winston-Salem. When I would see my scans and hear all about this tumor disease I was like “HUH?”, “Neuro-what?”
Unfortunately, an acoustic tumor on my right side began to grow when I was 23. My hearing was suffering and I had to get hearing aids. They were pink and very “in-style” (or as much as they could be). The aids did not last long because the tumor was growing quickly, also causing severe balance and dizziness. I was going to be Deaf whether or not I had the tumor removed. I needed TV & radio volume almost on full blast. People talking sounded like Charlie Browns teacher to me. All I heard was “Wha wha wha wha wha” and sound became a headache to me. This is where things really get juicy, complicated, and I turn 80 years old physically.
Following that, in April and May 2006, I received radiation therapy to my brain for other inoperable lesions and went through physical therapy before having more surgery in July of the same year to repair a damaged facial nerve.
Then, in August I addressed the deteriorating hearing in my right ear.I was hoping it would hang on until I fulfilled my student teaching requirement set for the beginning of August 2006 but weeks prior to starting, my hearing was completely gone in both ears and I had to withdraw from school.
I then went through more radiation and physical therapy in November and December 2006 and that was when I also took a beginner sign language class along with my friends and family.
However, that was not the end for me. I returned to Los Angeles on Jan 9 2007, where I had my right vestibular schwannoma removed and another auditory brainstem implant put in. Again, I spent two weeks in California before returning home to recuperate.
This was followed by another round of sign language classes in the spring of 2007. I was in and out of the hospital during this period to treat my hydrocephalus, and at the time I had severe headaches, dry & unfocused eyes and I lost most function and feeling in my right hand. I also had extreme balance & weakness difficulties that resulted in being unable to walk. I had a walker. Life was difficult then!
Then in September 2007, I began receiving a chemotherapy drug called Tarceva. However, I discontinued the use of Tarceva in May 2008 because the side effects were getting worse and worse. I wanted to feel good for an eventful summer. Tumors appeared stable since initially beginning Tarceva and continue to be to now
My two biggest struggles now are that I am completely deaf and that I have severe balance problems. I have taken many sign courses but if you do not use it enough, you lose it. I am just not around anyone else who is fluent to the point where I can completely communicate through sign even though my friends & family all know some. I lip read mostly and finger-spell. Because of my balance, I have trouble walking. I can not run, jump, skip, & play like I use to and I have a walker that helps me a great deal. If I don’t have my walker, I need some other kind of support like a wall to lean on or an arm to hold onto. I struggle in crowded, congested, dark areas the most.
Thinking about life, we really do take things for granted! Being late-Deafened is life changing, far different than being born Deaf! In many ways I feel totally different than the person I was before loosing my hearing. I never was a quiet, shy person! I loved being the center of attention (usually entertaining in some way) & being involved in constant conversation! Being Deaf is lonely! Over time, I have learned to deal with the emotions I face. It has gotten easier but will never be easy. I am still adjusting and all I can do is make the best of it. This is how it is going to be from now on.
Because of what NF2 has done to me, yes, my social life has suffered! I do not live like your typical girl in her 20’s. Group situations are the hardest as I feel left out of conversation most of the time. I am a great lip reader so I look around trying hard to lip read the conversation but end up just getting lost. It is just as annoying for me to interrupt by saying “What are y’all talking about” as it is for the speakers who have been interrupted! In a lot of situations I get very stressed out and I shut down. This happens with friends and family. It is so hard to see people hysterically laughing together. My reaction is always delayed and after the moment, it is no longer funny. It hurts deep but there is nothing anyone can do. Everyone really does their best to include me. We have ALL learned some signing but are not fluent as we do not live in a strong Deaf community. As such, I kind of feel like I am the only one. Most of my friends do not live in High Point. We all still text and email like crazy, I just don’t see them nearly enough. I can not do a lot of things my peers do. For example; concerts, parties, shopping, bars, etc. are all difficult for me. My entire body gets so tired. My stamina has improved a great deal over the years but still is not 100%.
I am currently not working and living at home with Mom, Dad, our dog Smokey and our cat Butter Frances. My world was put on hold my final year of college because of NF2 and I had to withdraw for brain surgery. After ups, downs, and loop-dee-loops, I was able to get back into school this past year. I graduated with my BS degree, majoring in Professions in Deafness & concentrating in Auditory-Oral Deaf Education from the University of NC at Greensboro (UNCG) in May’09. I am kind of lost and don’t know where to go now. When I began college, I was majoring in Auditory-Oral Deaf Education. I was unable to student teach so I am lacking my teaching license, resulting in the general degree. Soon, I will be starting in a volunteer position to get my feet wet and gain some experience. I am excited and I look forward to having somewhat of a schedule. Right now my weekdays consist of errands, household duties, working out, and a at least one doctor’s appointment every week.
I get bummed, bored, and throw a pity party from time to time but I strongly believe in keeping my glass half full and staying optimistic. Life is a roller coaster, but still good! I do not like to be sad and dwell on my disabilities. I would rather celebrate my abilities, everything I have overcome, and who I am NOW. Life is too short and you have to take it one day at a time.
By sharing my story, I think I make a great mentor as motivating others who may or may not be struggling with something, is what I am most passionate about! I try so hard not to dwell on how Neurofibromatosis has changed my life. I have been through more than most people go through in a lifetime. It has been a complete turn around, especially in the past four years. I have had to adjust to a life very different than that of my peers & accept a lot of changes. I am very lucky though because I am blessed with wonderful friends & family whom I share a close bond of unconditional love, support, and strength with. We have stuck together and fought together. That’s my story and I’m stickin’ to it.