Oftentimes, we are perceived to be able to hear with aids, loud sounds or screaming voices. That’s where the mistake is. Our hearing is blocked, which means not a single sound will sound like what it’s supposed to be. Even loud ones. On top of that, we experience tinnitus. It is hard for us to differenciate the real sounds and the perceived sounds.
As complicated as this seems, the simple fact is that we cannot hear and listen like normal anymore. From my personal experience, I cannot follow a normal conversation now and would need a one-to-one talk. A person’s voice clarity is extremely important for me to get the message. Otherwise, writing is the best way for me and most of us with NF2. It is a tedious job but there’s nothing much we can help others lessen the burden of conversing with us. Isn’t it better than having to shout and scream just to get us to understand? We won’t be able to hear it anyway. 😉
We are late bloomers, in the sign language department. Therefore, we cannot sign fluently. And of course, we cannot lip-read, something that most people would expect us to do. As much as some hearing people are able to pick up signing effectively, for us, it is hard work. We spent half our life as hearing-able individuals and another half as deafies. That, itself, needed time to be adjusted to, fully. Therefore, to learn signing and be fluent in it when you don’t really use it, is just not easy.
It is so hard to make others understand the exact problems we go through; much like how we don’t know what others are going through as well. I mean, everyone has their own struggles and struggling to be undestood is one of the most challenging difficulties anyone could face.
There are times we would feel like we are imposing a lot on others. And that we cannot offer much help due to our lackings. Nevertheless, we could only try. We are definitely not the same as the deaf community as we face different kinds of challenges. People often perceive us as hearing-impaired only and liken us to the main group of deafies. We’d like to change that perception by letting more people know that NF2 is not just about hearing loss.
Besides that, we also have issues pertaining to balance as tumours could affect the nerves responsible for our balance. In other words, any nerves could be affected if there are tumours growing on them. Surgery couldn’t really keep out impending complications. This is because tumours removed have the potential to regrow. And once tumour/s is removed, the nerves would have already been damaged. Nerves take a long time to heal; sometimes never. Most people thought that once a tumour is debulked, everything will be fine. But it’s not as simple as that. For example, if we have a tumour growing on our optic nerve, chances are we could develop vision problems. If it’s on the spinal nerve – depending on its exact location – we could face loss of movement or be paralyzed.
Another challenge we face is facial paralysis. Some people might call it Bell’s Palsy. But that’s not the reference we use. For NF2 patients, it is simply facial paralysis, mostly caused by brain tumors. It happened when brain surgeries affected the facial nerve, causing it to be dysfunctional. Hence, the droopy face. This problem has triggered a lot of stares, questioning looks and even disgusted looks. We would feel very offended when stared at as if we are aliens from another planet but we need to getbused to it because we understand their curiousity. Some of us might also find strangers who will spontaneously come up to us to offer advices on how to correct it. 😐 It’s as though having a crooked face is unacceptable in this world. But we know they only meant well and we became accustomed to it over time. We’d prefer if people could kindly clear their doubts by asking rather than making assumptions. On one condition; that they’d be willing to write or type on their phones as we have the tendency to misinterpret what someone is saying due to our limited ability to lip-read.
As the going gets tough, the tough gets going. It’s all part and parcel of having NF2. And we need lots of patience to persevere and endure this trial. 💪🏼