Madder Than Heck!

Sorry I have been delayed from posting. I am in a swirl of things: two MRIs last week, 2 doctors visits last week (all located far from my home), 1 this week, back to researching more shit about this NF2 crap again, trying to get out and get exercise, and then the regular duties of life come in too.

Yesterday was the goal to see a new doctor who supposedly knows about NF2 and is a neurologist/neurosurgeon. I have had a stiff back and neck and some pain for a month so we wanted to get him to take a look at it before I went to a chiropractor. We wanted to see if the spinal tumors I have (6 in total) were pressing on any major nerves and the source of my stiffness, pain, and balance problems.

Again I arrive early for the appointment and wait in the lobby but do not see my captioner. I am wondering if she is already setup in back or is late. They call me into this office where my films are all setup on these film lights mounted on the wall.

I see no captioner. I am angry! When I inquire where the captioner is the doctor tries to speak to me which made me even more mad. I inform him that I am deaf and I cannot understand him. He then asks me if I read lips. OOOOOHHH THE WRONG THING TO ASK ME RIGHT NOW!!!!!!!!!! I will refrain from using the cuss words of how I really feel about that.

Ya know, if I had just casually met him on the street, he did not know better, and I had no paper, then I could deal with that question and the ignorance behind it. However, this chump is billing my insurance a healthy wad of cash for this ridiculous fiasco and it is costing me a $15 co-pay, who knows how much in gas as it is a long drive there and back, and my time. There is often traffic both ways and an appointment in North Seattle (even just Seattle) totally blows the day!

Anyhow, I was really frustrated and ready to walk out but alas I drove all the way there (spent my time and gas) and traffic going back home was helacious at that time! So we sat down and I tell him how disappointed I am in a very firm and direct tone (indicating I am not happy in a sad kind of way but an angry kind of way).

LOL So what does he do next? I guess he was trying to make some kind of connection with me or assure me that he was experienced with deafness. The next thing he wrote made me even angrier! He tells me that he has a brother-in-law who is deaf. I have no idea if I rolled my eyes but that was sure my internal expression. I am thinking "Oh here we go! Some self righteous hearing person thinks they know all about deafness just because they happen to KNOW or KNOW OF somebody who is deaf." Knowing and interacting/communicating are two different things here folks. Sure my husband KNEW the singer "Jewel" when he was like 5 years old and lived in Homer, Alaska. He went to school with her. Does that make him in expert on her life?????? I think not.

Forgetting that I am paying for this shingding, I get emotionally involved and fed up with the attitude that some hearing people have about deafness or that all types of deafness are the same. NOT! I know he is most likely talking about a person who was deaf from birth or from childhood (which is a world of difference from being late deafened as an adult). I won't even get into all that right now. Therefore, in my pissed demeanor, I ask him if his brother-in-law was late deafened. He tells me that he thinks he was deaf since a child. I emphatically sign and tell him "That's different! That's different!" He goes on to tell me, that his brother-in-law speaks, writes, and he thought he could sign too. Knowing that the doctor obviously did not know a lick of sign (because I did sign some things to him which he seemed oblivious too) and did not know Jack Shit about deafness, I politely told him that his brother-in-law was probably raised with total communication. ANYWAY......the appointment shall we?

Well I have to admit it was really frustrating under the circumstances. To make things worse, the doctor was not very good at getting his thoughts to paper efficiently. His first statement "You have NF2". There was no question mark or period so I was not sure if he was making a statement, asking a question, confirming or what! I was thinking inside "Yeah no shit sherlock....I have known this for 6 years now and you should have known this if you did your job and read my file before the appointment!" How am I supposed to react to that? I must have had a look of disgust on my face. I really do not know.

Then he wrote something I could not even read or understand. Even reading it now I don't know but I just figured it out from memory as he pointed and moved his leg around. It says "Your leg (which looks like it is written as lej or by) is problems". I was thinking "What?????" which I must have said outloud. LOL Often times he started to write and did not finish or scratched it out. I am looking at the paper now and it says "This". This what???? Then he finally wrote out "What is your major problem". By then I burst out sarcastically "I have NF2. That is a major problem. LOL There are lots of things wrong with me!"

The rest of the dialogue will probably bore you or frustrate you. It is hard to follow and the notes are all over the place which is a chore to make sense of later. Thankfully the second half went a little better when my regular doctor stepped in and starting writing what he said. I think I probably did more talking than the doctor did communicating or explaining through writing. This is why I HATE not having a captioner!

We are not talking about a casual football play here from a coach! We are talking about my brain which is being squished like a stess ball from tumors. To properly understand what is happening in that head and spine there is lots of medical terminology covered within an explanation. Do you honestly feel the same quality of information is being delivered through writing from the sample of what I have given you above? Ok, let's say that you think that some doctors can accomplish writing everything out. Do you think that they will explain it as thoroughly in writing and as efficiently as the time it takes for them to speak it? If so, would it be legible? You see my point here how this last resort form of communication takes longer. The fact of the matter is that in the world today time is money. Therefore, for the deaf person who does not have proper accomodation, words must be shortened or part of the explanation eliminated. In other words, the whole detailed picture of the situation is not delivered or it is oversimplified.

In the next phase of the appointment, he stood up and moved over to the films and started speaking while pointing to stuff. That is where I am like "HOLD ON HERE BUDDY. LET'S JUMP BACK INTO THE DEAF WORLD". LOL no I did not say that but I immediately interupted him and told him that I was not going to be able to understand him if he did that. It is very apparent to me that this man either has no clue of working with anyone who is deaf or the patients he has seen just went along and did not say anything.

Basically I do not know what to tell you. The spinal tumors are very small and I have 6 which have not changed since my January MRI (info I obtained from my appointment last week with the radiation-oncologist). What the neurosurgeon/neurologist guy told me was "I would not recommend a chiro because of the tumors in your spine." Gee thanks man, you were alot of help! He did not recommend any alternative!

Then for some unknown reason (I never asked) he decides to give his medical opinion of my treatment decision after the fact. That is interesting because early on we did ask some other doctors what they would have done but they declined because what is the point. I have had a different neurosurgeon say to me "I never second guess a treatment decision that someone has made. You cannot go back." Why torment you over your decision? You made it and need to find a way to move on. But this guy decides my soul must not be dying enough and he has to stick another dagger in. Without me indicating or asking at all, he tells me that he would have recommended me to have it surgically removed first and then the remainder radiated after the surgery. He also tells me about the biggest risks of surgery which are all not promising (death was not included....that is a much easier route).

Other bits of information that were given I already knew or were kind of obvious. He did say that he did not want me to dive for another 6 months (FOR FRUITING OUT LOUD IT WILL BE NEARLY 2 YEARS BY THEN!). His reasoning did make sense and I was glad that he could formulate an intelligible response on this. In theory, the brain may experience more pressure while at depth (1ATM, 2ATM, 3ATM) and hypothetically could cause more swelling of the tumor while at depth. Seeing as I only have 7 mm of space between the tumors and brainstem, I need to do everything possible to keep it from getting larger or putting more pressure on the brainstem. Of course I am going to consult with other sources on this for second and third opinions. I was told that I could dive right after the treatment a year ago but of course this was before we knew I was going to experience many symptoms from tumor swelling. I decided to refrain from diving until the tumor stopped swelling and I was off the steroids (which is now....a year later). He also said to not strain myself while lifting weights because that puts additional pressure on the skull. Instead of lifting a heavier load I should be doing several reps at a more comfortable weight (which by the way is for muscle toning more than building).

The last thing kind of irritated me especially on a day like yesterday when I was feeling really down (NF2 has been robbing me of my passions away: diving, hiking, rollerblading, photography, the many things I wanted to do on my foreign travels). He wrote "You are doing very well. I know that there are many problems. But the BIG picture is that you are holding in there and hopefully this large tumor will decrease in size over the next few months."

Doing well. What is doing well...compared to what? I HAVE been waiting. Each time the extension gets longer and more things happen. It seems even though I was sick in the beginning I was somewhat better off. My vision was normal at that time, my balance was not the best but much better than n0w, I could see without everything bouncing around me, I did not have facial paralysis and could eat and drink normally, my eye was not in danger of being scratched or getting dried out. I never know what tomorrow is going to bring! It is horrible! From reading I may still end up in a wheelchair or going blind in one eye hence losing my ability to drive!

I just don't know what to say. This reminds me of a time when I was a shaving aide in a nursing home back when I was 17. I tried to be cheerful to all the patients. One day after I finished shaving a man, I said "Have a great day!" as I usually would. The man was in a wheelchair and very lonely. He got very angry and shook his fist at me while I was walking out the door. I was a little shocked. He yelled "OOOOOO You and your great day! You always say, Have a great day! What is so great about it here? You don't know what it is like to be here." At that brief moment I was struck. I really did not have any idea what it was like to be him or to be a patient in a nursing home. I could imagine but never quite fully comprehend how painful and humuliating that could be. I am not sure, but perhaps that is when I first started to awaken to empathy. But alas, that is a whole other story.

Now I am not as mad. I hope it lasts. I will have another head MRI and checkup in 3 months.