Friday, April 16, 2010

I'm Deaf, NOW WHAT!?

As I explained in my last post a huge chunk of my time at the CTF patient forum was spent learning about vestibular schwannomas, and the current status of their available treatments. VS can be life threatening if not treated correctly, but that is not why people focus so much on them when NF2 causes so many other types of tumors to be just as concerned about. Patients and parents who are thrown into the NF2 pit with a sudden diagnosis are almost always completely focused on and terrified of the idea of Deafness. Just the word Deaf can seem foreign and uncomfortable, oddly similar to death, and conjures up an entirely different culture of people than those of us in the hearing world. Having been hearing for all of your life, the idea of becoming Deaf seems unacceptable. People get angry, go into denial, cry, and fight back, reaching out desperately to every possible option that floats around the NF2 community. Chemo, implants, surgery, radiation... ultimately finding that most people with NF2 end up hard of hearing or Deaf. Fighting is definitely an option, but if or when the time comes acceptance is just as important...

So I ask, I'm Deaf, NOW WHAT?

1. Learn ASL. No excuses. I have heard them all, and for each one you can come up with I can introduce you to someone with problems much worse who has learned anyway. Learning ASL may seem pointless when no one else around you knows it. As you learn you will come into contact with more people who do, and build a social circle that you can communicate with freely. As you learn ASL try to sign as you speak so those in constant contact with you begin to naturally learn as well. Parents, go to ASL classes even if your teenager is in denial and refuses. In time it will pay off.

Places to learn: check with local community colleges, schools for the Deaf, and community recreational programs.

2. Take responsibility for your own communication. If someone is trying to speak to you in public, be prepared. Have a small pad of paper and a pen, or download a notepad program to your PDA. Just tell them "I'm Deaf, please write it down/type it for me. Thanks!" If they say no, and I hate to tell you people will, then they really aren't worth your time anyway, problem solved! (feel free to shoot them a dirty look and maybe stick your tongue out at them!)

3. For any doctor appointments, and this is SO important for the NF2 community, request an interpreter. If you don't understand ASL quite yet, request CART. (This is when a transcriptionist sets up a laptop and types on a screen for you. You can also request this at school!) They are legally required to provide this service for you. Do not allow people to treat you like a child, speaking right in front of you about you for 5 minutes and then writing 1 sentence to fill you in. If you are trying to rely on writing or *gasp* lip reading at any appointment, then you wont be treated equally. Respectfully demand accessibility, and report any medical personnel who does not comply.

4. Get tech savvy! Sidekicks, iPhones, Web Captel, video phones, ip relay.... text messaging is only the beginning! Make a few Deaf friends and ask for recommendations. You don't need anyone else to make phone calls for you, there are too many options to ever have to miss an important call again! Don't sit there next to your Mom or friend waiting for them to fill you in while they do all the communicating for you, you can use relay to call anyone, anytime.

5. Stand up for yourself. This is a recurring theme. Do not sit and be ignored in group situations. Do not let your family get away with telling you "nevermind" instead of filling you in. If you feel ignored, those guilty for the social snafu are most likely completely unaware. Speak up, you can even make a joke of the situation, but just let them know, "I have no idea what you guys are saying and can someone please fill me in?" 9 times out of 10 they will fill you in and then ignore you again if you allow them too, instead stay actively involved in the conversation. If you missed something, don't lie and pretend to understand, because people will pick up on it whether you think they do or not! If this sounds like a lot of work just to socialize, it is. Which is where those ASL skills and Deaf friends will come in handy! You might lose a few old friends along the way, but those who matter will stick around, and you don't have time for the rude ones anyway!

6. Get involved with Deaf Culture. I have heard countless times from people in the NF2 community that they don't think they will feel welcome within the Deaf community. You can define yourself however you want, but Deaf is Deaf. You can't hear. I have never once met a Deaf person who snubbed me for not being Deaf enough. In fact you will find the Deaf Community is an amazing hodgepodge of interesting people from all walks of life! HoH, CODAs, Late-Deafened, born Deaf, interpreters, ASL teachers, and even Mom's teaching their babies to sign are all active members in the Deaf community. Rent movies with Deaf themes, read Deaf books, learn Deaf culture history. As blessed as we are to be a part of the NF community, those of us who are also Deaf have the unique opportunity to explore an entirely different world! Deaf expos, Deaf coffee chats, Deaf Mardi Gras... the list is endless.

I am not going to lie and say going from hearing to Deaf is not challenging. I have my bad days when I miss certain songs, or just feel really left out in a social situation. The important thing is to allow yourself to embrace the challenge as well, and accept the person you have become. You choose your attitude every morning, why not choose pride?

Are you Deaf? What tips can you share for those still working on acceptance?

Tuesday, April 13, 2010

2010 CTF Patient Forum

This past weekend my husband and kids joined me at the 2010 CTF Patient Forum in Las Vegas. I was excited for months ahead of time, and so relieved that Paul's hernia surgery healed quickly enough to attend the symposium just one week after his surgery. Most of the weekend was captioned with CART services, enabling me to read everything said by the speakers on a large screen. CTF did a great job of giving NF2 its own attention. NF1 is so much more common it tends to overshadow NF2 at most of these conferences, which excludes and frustrates those of us fighting NF2. Still, out of 187 attendees I was the only Deaf person! I really expected there to be more, being that NF2 causes Deafness and it is an NF conference, but for whatever reasons the NF2 community did not show their strength in numbers. Those of us who did attend were very happy to be included and enjoyed visiting with others who are seriously dedicated to the cause.

CTF knew that those of us who came to learn about NF2 did not need or want to sit through hours of information on NF1 just to get a little attention at the end. That has been my experience in the past. Instead, the issue was dealt with by including a 4 hour break out session completely dedicated to NF2, featuring top doctors from HEI and Ohio State. I was mostly looking forward to "Complimentary and Alternative Medicine: Where is it headed?", but the speaker canceled at the last minute and instead the entire session focused on vestibular schwannoma. VS are the most commonly associated tumors with NF2, and are required diagnostic criteria of the disorder. These are the bilateral tumors of the vestibular nerves that cause Deafness, facial paralysis and balance deficits. If left untreated they can squeeze out the brain stem and even grow forward towards the eyes causing blindness, and eventually death. They are the major concern of almost every newly diagnosed NF2 patient, and this break out session did a great job of addressing the 3 current treatment choices available to patients: watch & wait, surgery, or radiation. Surgery was the active option of choice amongst every single doctor that spoke. We were told that irradiated tumors will simply grow back, and may even turn malignant at a later time. The opinion given was that most young patients would want to avoid radiation because of these possible complications. I commented that many people with NF2 don't have the liberty of worrying about possible complications 15 years down the road, we have to fight back now and consider quality of life if we even want to live that long. Radiation is generally outpatient and minimally painless, while brain surgery is a hugely painful and dangerous risk. I thought the doctors presented a bit of a one-sided perspective on the issue. They gave the rates of regrowth for irradiated tumors, but not for surgically resected tumors, which they did not mention tend to grow back as well. There is no right answer when it comes to NF2 and treatment, but both options are worthy of equal consideration. The doctors who presented seemed mostly concerned with hearing preservation and ABI placement, personally I am more concerned with survival.

That all being said, I appreciated all of the information presented. The doctors were highly educated men with an obvious desire to help their patients. As I previously mentioned, the entire discussion did revolve around vestibular schwannoma and hearing preservation, and I commented on this as well stating that while I obviously understand the need for VS discussion in an NF2 session I would like to have been informed about all of the other tumors we face as well. People with NF2 develop many different types of tumors and can grow them on every nerve ending in the entire body. VS and deafness tend to be the least of our worries when we have so many spinal tumors we can't even count them and are facing paralysis and death. None of this was discussed, but the need to discuss them in future sessions was acknowledged and agreed upon.

The Forum is an annual event, and having this NF2 break out session this year was a huge step for those of us interested in staying involved with research. In the short amount of time allotted the doctors managed to cover a lot of important topics, and I have no doubt that in subsequent years the topics will broaden and improve. If we as an NF2 community want to be given attention by the researchers and doctors, then we have to start showing up in force! Those who stay home, don't get involved, don't donate, and don't research their disorder for themselves are putting all of us at a disadvantage. Many of us are unable to do many things, but all of us can do something. If you want to be involved, but just don't know where to start or feel overwhelmed, you are not alone, and I am making it my business to be available for anyone who asks. There is strength in numbers, and together we can reach a cure.

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Wednesday, April 7, 2010


This morning I set out on a run to the gym, with the intent of working out there and then running back. It is a 3 mile trek, which makes a 6 mile round trip. It felt great to be outside, and at each corner I looked to the next in anticipation. Just one more mile, one more stop sign, 1 more bus stop, 1 more building... at each mini goal it felt as if I had finished something, when really I had a lot more to go, as well as the run back. Even once the entire work out was finished, and I was home drinking my protein shake, I realized I still wasn't done. Today's workout was only one of my three scheduled runs this week, and after this week is this month... and well, you get the point! So although breaking my goals into portions makes them seem more feasible, at what point can I say I have truly achieved my purpose ? Is that even possible, or would one goal simply beget another, like another corner to run past?

When Paul and I were dating we wanted to find an apartment that fit our meager income, and for weeks I knew I would finally be happy if we could just get our apartment. When we finally moved in we set our sights higher, and now we always say that when Paul becomes a Journeyman things will be great! I know there will always be something else to yearn for. Another goal, another obstacle, another setback, another corner to turn. Life is just a series of these segments, and at times the entire cycle can seem to stretch out endlessly, even pointlessly. When do I get to be happy? When do I finally arrive? For me, the answer is the path. When I run each step is fun, I don't only enjoy the run when it is finished. Paul may not yet be a Journeyman, but he loves going to work each day and I feel blessed to live the life we do. I may have health problems, but if I didn't it would be something else. I can't sit around waiting to die, when I am alive and well today. I can't waste my time worrying about something that hasn't even happened yet. I can't allow the inevitable happenings of life to weigh me down, I'm too busy running forward!

People ask me all the time how I deal with all of the stress in my life, and when I tell them I don't think my life is very stressful I am always met with an incredulous stare. I have a roof over my head, food on the table, a family that loves me, freedom to choose what to do with myself and usually enough resources to support those desires. What else is there to ask for? I take every moment as it comes and make a conscious choice to enjoy it. The day I stop doing that, I may as well die, because that is no way to live. I may not run another marathon, I may not break another PR, but today I ran, and that is enough for me.
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