Now, I lost my hearing at a later age, but I always KNEW it was a possibility. Did it make it any easier? Ha ha NO! Fact is though, you have NF2, you know you can lose your hearing, you are TOLD this from the very beginning. I started early; 5 years old is pretty quick to have NF2 caught (or it was in 1991 anyways) but I got very lucky on that account; if I hadn’t, you may not have been reading this right now. I had the advantage really: my body, mind, and mannerisms (like turning my head further to the right when I try to look straight ahead) were still adapting to life, as such, I grew to maneuver around NF2 so to speak. Contrast to losing my sight when I was born and having it fade in and out a couple of times, I was not able to adapt to my hearing loss as I was my sight. Similarly, more traumatic changes later in life must be even more difficult to adjust to. This leads me to the reason for lack of posts, well, one of the reasons.

Lexa has been having neurological issues (gotta keep it at that for now) and is having trouble getting it cleared up what all is wrong with her. For nearly a year now she has been trying to find out why her health is diminishing and we get closer and closer, but the answer is still up in the air. We do know a few things, like her right side is losing strength and she is losing feeling in her legs, but not all of the answers. I will be honest, I am scared as can be for her. This is new to me; as I said, I have had NF2 all my life, and known it, not knowing what is wrong is SCARY! I know in some sense how she feels, but nowhere near in entirety. My right side is a bit diminished as well, but the feeling is not as bad as hers is and her nerves are shot. Right now, we are both walking a neurological mine field. Holding hands and jumping together (I still have one leg! Half an arm too). I have walked this field since the day I was born, but it is no less dangerous for another set of educated feet, this is a couples activity lke no other!!

It is beyond unhealthy to let these things build up, especially the dishes (EWWW MOLD!!) and the laundry (MY SHIRT IS RUINED!!!).  I’d like to send out a shout to anyone who has a method or advice that they think could help me push myself to do these things better.  The problem is not that I do not want or do not know I need to get them done; I get distracted very easily and lose my train of thought (I’ve flooded my bathtub because of this!).  So I reiterate HELP!!!!

P.S. I know I have to do this mostly on my own, but maybe there are ways I can remember better? (Put a sticky note on my forehead maybe?)  This ain’t a disability thing, this is a common sense thing!

There are also those who think I seek pity, or look to get a little bone thrown my way.

Mentally, I am fairly strong in my beliefs.  I have known several others with NF2 or worse who were just as strong or stronger still.  I don’t like to feel sad and I like to think I can handle a lot on my mind.  I have a strong mind, an intelligent mind.  I admit my memory is rather lax, but all other aspects of my mind work rather well, I am an A-B student, I was a member of National Honor Society in high school, and I recognize and pay attention to somethings others never notice.  I’m not the quickest, but I am far from slow and far  from weak in my thoughts.

I know there are those of you who seek to be seen for who you are, not what you happen to have.  There are brilliant minds that are hidden within people who have lost confidence in themselves due to society looking down on them.  Do not fear that you are defined by what you have, rather than who you are.  Those who define people they do not know, are those who fear their own definition.

The strangest people in life are normally the ones who have the most intelligence.  Take for instance Stephen Hawkins (hope I got that right) one of the most intelligent men to walk the face of this earth, and he cannot walk.  Disability nor a condition does not mean lack of intelligence.  The  only thing these can do is make us stronger if we let it, make us wiser.  It is an adventure to show those who live healthy and without medical problems that even with the pain brought on by the condition, we can live happily.

Heart problems to tumors, Alzheimer’s to paraplegic; we are still human, we  are still living, and we are still strong!

The winter is a very hard time for a lot of us.  Surgical wounds, arthritis, and similar problems start flaring up like crazy!  On top of that, I always get the worst migraines during the winter; these may be normal though.  It’s really hard to enjoy the winter months when your body hurts the worst during these times.  I am sure a lot of people can relate to this problem.  A broken leg, arm, or wrist; a weak knee or some surgical removal or stitch, just to name a few.  The cold can be unforgiving at times, and you really want to enjoy the snow or a nice bonfire with family or friends.

This post is a little behind, but it’s still cold and still snowing.  What I’ve come to realize is that if I focus on that pain, it hurts worse, much worse.  If I get up and enjoy those that are around me, enjoy the snow when I can, and have a good time everything feels just a little bit better, if not a lot.  Mind over matter, I suppose would be the idea behind this.  You control your body, not the other way around.  It can hurt a lot of people, other than yourself, to dwell on these pains.  (Sounds a lot like depression, don’t it?)  Enjoy life, don’t dwell on pain!

When I was in High School, I had a teacher’s assistant who had a deaf father.  She told us that her father was shot and killed by cops because he did not acknowledge them when they told him to stop.  They eventually got away scott free for this injustice and went on like nothing had occurred.  That is beyond wrong, and now that I have become deaf I get very nervous around cops, or if I sense or hear a noise and just freeze in my tracks.  Being deaf is not a huge “kick me’” sign for anyone to do as they please to us.

Also, I heard about a man who was slightly mentally ill and no one where he lived liked him very much.  I don’t remember much about this, but I do know that everything twisted him to be a dark and annoying human being.  There are many people, especially those with NF1, Split-personalities, autism, etc.  These people are not entirely in tune with the world we live in, does that make it ok to go off and shoot them?  That’s what happened to this man, the cops who found him, shot him.  After that, they got off for it, just like with my teachers assistant’s dad.

The media can make anyone look like a horrible person, and people with power can and will use that power.  Now they seem to be ready to use it against those who aren’t evil but either different or are not liked.  Currently I am only aware of these two occurences which I was reminded of looking in a yearbook.  That does not mean it has not happened to non-handicapped people.  Do we have to be afraid to call the cops when we need help?  What if someone does not like you and just tells them whatever they want?  Are we back in the Salem witch trials?  Scares me to think about it.

Recently I am learning how biased this made me, how I keep thinking I need to be concerned about me and only me, not intentionally it just sort of happens.  Lexa is not feeling well, having loads of problems, and I always seem to make every argument look like she’s the one in the wrong.  I don’t even realize I do it half the time until I think about it.

She has done loads for me, especially staying with me a month in the hospital when I was not even in my right state of mind.  Yet I have done so little for her it seems, I never learned ASL and she has been asking me to continuously and I keep putting it off.  I also make NF2 an excuse for EVERYTHING, headaches, stomach problems, and the reason it rained.  I have a vendetta against NF2 I believe, just want to blame it for everything.

Lexa may, or does, have Lupus, and I seem unable to support her the way I need to.  I grew up with my illness so having it so young I just figured ignorance and laughter were key, the doctor would tell me what I need to know.

Now I am much healthier and no longer the sick one, and I guess this weird little voice in my head feels robbed.  I am so used to being the sick one, how do I be the healthy one?  I know I have been saying NF2 is not who you are, but sometimes if you have it for as long and as young as I have, I guess it begins to define you.  I need to find a new definition, a new way of life.

If you love someone and can’t seem to support them being ill and needing you, what does that say about you?  I feel like I have let myself down and need to learn I am not worse off than everyone else all the time, not even most the time.  Don’t get hung up on your own problems and deny others theirs, it’s not a competition, and you won’t ever win until you quit playing.

Truth be told, I wasn’t always ENTIRELY like this, I was somewhat, but not nearly as bad.  When we went to my step-father’s parents house, it was the worst, as they did not treat me very much like family.  Once I lost most of my hearing however, I just sat and had a pretty blank or goofy look on my face as everyone talked.

I spent this Christmas Eve and the day after Christmas with Lexa’s family.  This is when my anti-social tendencies really became a problem.  About the only words I said were “Hello” or “Nice to meet you”.  Truth is because of my deafness and not much social interaction as a child, I never really gained the social skills I need.

How does a deaf man act when surrounded by hearing people and only one whom knows to sign?  Especially when he, himself, can barely read much more than finger-spelling and they sure can’t sign the whole time, they want to interact too.  I hear enough to know when someone’s talking, and I don’t want to interrupt, so what do I do?  How do I get the response?  I have asked myself these questions so many times, I just stopped interacting.  How do you interact?  Maybe you can help me, and others.

Lexa has tried to tell me I need to talk more, I need to interact more.  I agree with her, I do, I am just so shy and so lost at how to communicate, I freeze.  I hope to get responses to this, I really do.  Let me know how you feel, please.

Lexa and Tim on Christmas Eve, 2010. Wishing you a Merry Christmas.

Lexa and I, especially during the holiday season, wish to send the warmest regards to all of our readers.

The holiday season is known as a time to be with family and friends, and to wish good will to all your neighbors!

We wish you and your friends, family, and all whom we know a very Happy Holiday season, and bright and wonderful things in the coming new year!!

In 2010, we began a journey of two.  In 2011, we will begin again, our journey with you.

We apologize about our lack of continuance towards the end of this year.  I had college to attend to, and Lexa is still having trouble with illness.  We have not lost our motivation or conviction in our cause.  We promise TSS will return strong in 2011 as soon as we possibly can.

The point of this post is simple, no matter what you have, no matter how you feel, aside from medication messing with your mental state, you are still you.  It’s gonna happen, bad days are like the rain.  You never know exactly when they’ll hit, but they WILL hit.  The best thing to do, is find your umbrella, so to speak.  It may not keep you totally dry, but your hair will still look nice!

Obviously, for me, my umbrella is cracking jokes, making myself and those around me laugh no matter how hard or corny I have to try.  I do advise you not to make a medication your umbrella, my mother did this, and she was always recovering from the medication side effects or addictions.  She figured it out though and beat it for a while.

Your umbrella needs to be what makes you the happiest, what makes you YOU.  Add an extra dose of that on the bad days, and 2 extra doses on the “Why me?” days.  Don’t let the pain make you forget who you are, show the pain you simply have to deal with it, not let it control you.  When pain controls you, life is a lot dimmer, speaking from experience.

Yesterday, for example, my arms felt like they were gonna fall off, my neck was burning in aches, and my head was pulsing.  My new friend Del came over and asked me to go to lunch and bowling, I got up and I went.  Despite the fact bowling is killer on your arms, when I got home, I felt great, except for the fact I barely broke 50 either game.  You just have to fight back, and keep doing what you do best, BEING YOU!