Monday, January 22, 2007

Here I am.

It has been a long time I know. After the large windstorm that knocked out our power for 8 days, holiday travel, disabled internet access for 3 weeks due to the damaged cable lines, and a trip off the mainland, we are here and back online finally. Actually we got home last week and the remainder of the snow that blew in over Seattle is nearly gone out at our place.

No I have not had writer's block. In fact I had so much t0 talk about that I have been left feeling overwhelmingly behind to a p0int where I do not know where to start. To be honest my brain has been on maximum overdrive and I hit a spell where I just felt burned out and like vegatating my brain with a "24" episode escape (all episodes on the 3 netflix disks of the last season).

Now it may sound completely ridiculous to you and you may wonder how in the heck I could be burned out ESPECIALLY after I just came back from a vacation. Well I will tell you.....

This week I was wondering what in the heck is wrong with me and feeling that I have been caught up in a lazy state. Everyday I seriously pray to be a productive person and to get everything done.

Then tonight I stopped to think about it. My brain is continually firing and problem solving. For a short bit I was thinking it such a shame to have all these problem solving skills, education, and knowledge to not use it. Then I realized that I use and RELY on these skills and instinctual abilities everyday. It is how I survive.

A couple months back I was cooresponding with another friend with NF2 who recently ran a half marathon and has been a very athletic person throughout his life. He wrote to me "Everyday is a training day." Wow! He is absolutely right!

Just because a marathon or athletic event has ended (or a surgery or treatment is complete) does not mean training is ended. From the time I wake until the time I go to bed, it is practice, practice, practice. First it is practice getting out of the bed without falling over and bumping into things, then it is unpasting my eyes from the eye gel that keeps them closed at night and from drying out, then it is reorienting the eyesight (if one has hampered vision) so that I can balance and see, then it is getting used to walking in the vertical world after hours of resting in the horizontal world. Basically, it is a quick evolution of the body within a half hour or hour in order to adapt and function in the physical earthly world.

Those are just minor adaptations that those of us with NF2 get used to as the daily routine. Once hitting a state of consciousness I have found that I must try my best to always be mentally and evironmentally aware of my surroundings and what is happening. This is where the mental game of problem solving really kicks in.

Some things range from simple problem solving to very complex and life dependent.

Simple: I am going to an environment with most if not all hearing people. Thought: Is it a situation where I will need an accommodation? Will it be a place which offers an accommodation? Who do I contact and how far in advance? If it is a party or small get together and there is no accommodation, how will I communicate with people? How will I enjoy myself if nobody communicates with me? Do I have pen and paper ready? How do I get around people not believing I am deaf because I can speak? What if people do not write and keep speaking to me? How will I handle myself? What do I do? What if everyone is talking and I am bored?

Unforeseen situations (more complex): A cop confronts me in a parking lot, does not show identification, does not write to me until after several requests, does not believe I am a person with imbalance due to brain tumors and is convinced I am a drunk. What are my rights? Is there somebody around to help me and be a witness? How do we reach a resolution in the situation so that I am not falsely accused and I can go home?

I am walking my dogs or in a situation where I was planning to be alone. I bump into a person who wants to communicate and I am not prepared with pen and paper. Believe it or not it has happened and when I trained for the marathon I started carrying a small paperpad and pen in my hiking pants.

Very complex and requires prior thinking and preparation:
The plane is unusually turbulent and we are flying over the ocean. I am the only person who cannot hear and I have a major balance problem. In this particular case which I never considered prior, I decided it would be a good idea to read the instructions on where to find the life preserver, how to put it on, what to do in the emergency, and where to exit the plane. In the case of being in the dark and possibly entering the water and becoming disoriented, I had to think through what I would do and visualize the scenario.

Very complex (life dependent at the moment):
I am snorkeling and the water is a little wavy which is throwing me around (probably mild for other people). My mask is fogging up and I cannot see so I try to rinse it out on the surface and get salt in my eyes. When I shut my eyes I become disoriented even though I am wearing a snorkel vest. I end up with my head under the water and swallowing lots of salt water through the snorkel. I have a moment that I feel I am drowning and then a voice clicks on in my head "FIGURE IT OUT!" Due to prior experience and comfort in the water, I prevent myself from panicking and find a way to right myself and correct the situation. This was an interesting lesson that I feel I need more practice with and learned to adjust within a couple hours of the activity.

These are just some simple examples but I have found that everything I do takes prior thinking and preparation.

Walking and Hiking:
Is the trail uneven? Is it a difficult trail? Am I able to do this walk/hike?Can I do it with a hiking staff only? Do I need hiking poles? Is it slippery? Will we be walking around when it gets dark? If so, I definitely need to remember to bring my hiking staff (AKA - my cane) and head lamp.

Eye drops - always have to have them.

Pen and paper - always need unless I am in the company of all deaf people who sign.

Harley was recently disappointed to discover that I cannot get an accommodation for absolutely everything. I have known this for some time and although it is a bummer, it is just something that needs to be accepted. Yes every so often I see privately held classes on things such as gardening, photography, presentations on travels abroad, cooking, etc. held at community centers or hospitals for a very minimal fee or free. Some things I would have really liked to have gone to but I must choose to go to the things that are accessible.

I think prior to treatment I had a fantasy that there would be an end or finale such as completing a college degree. I dreamed that I would be restored back to where I was before. I probably thought this as when I had cancer I was one of the lucky ones. I grit down and beared the treatment, made it through, recovered, and went on with my life to do many things. With NF2 it is an evolution to become more adaptive in order to go on with life. One has to make a choice to accept the situation and decide what needs to be done to attain the optimum quality of life available.

I think I have come a long way, but still in the back of my mind I am holding out for that finale and completion. Reality that over 2 years has gone by now and that I need to keep going and pushing has creeped in my mind this past week. Thus the orgination of my overwhelming feelings and slight moment of burnout or wanting to mentally escape. Somedays I am still waiting to graduate from NF2 University where every day is a training day.

1 comment:

Cindy said...

Amen. Even tho not as athletic as you, (I WOULD BE IF NOT FOR nf2) I can relate to every word you wrote here. The constant thinking ahead, the energy and alertness it requires, the absurdities of life in general especially when totally deafened. I too have always grasped forthat grand finale or end point of nf2 where it wud be done and II GO ON WITH LIFE. Your 'evolution of adaptions' description is right on.