Notice: There are several grammatical errors in this submission. Please excuse the typos or mispellings and I will try to edit tomorrow. I am really tapped out right now. Oh yeah....have a good Monday!(Sigh) I was not quite sure what to title this post but I do want everyone visiting this site to read this so you are educated and not ignorant. Ignorance can be very hurtful to the parties one is ignorant about.
Tonight was a particularily trying ordeal (very emotionally draining) with NF2 that I could have never imagined going through. In a flash I was completely stripped of my dignity.
I suppose it could have been worse but I went through what NO person with a disability, impairment, illness, injury, or handicap should ever go through. Yes tonight without doing anything wrong or provoking or harming anyone or anything, I was forced in a position to prove that I have NF2, that I am deaf, and that I have brain tumors. Isn't that awful?
As you know by now if you have taken the time to read this or know me, you know that I am rather open about my NF2. Yet there are people with NF2 and other ailments and disorders that like to keep that fact personal from public and the strangers. It is their right and that privacy should NEVER be challenged!
Here is what happened. I am having a hard time writing about it without shaking because I was very emotionally charged and unprepared to be harassed or be put into this kind of scenario.
About 4:50 pm this evening I was walking out of a very popular warehouse store where I regularily shop and frequent. When I had parked before entering the store, there was not a vehicle next to me on my driver's side. Now however, there was a truck in the space next to me and I could not fit the cart or open the doors between our tow vehicles. I pulled out slightly so that I could freely open the double doors of my truck and load my groceries without touching the truck next to me.
As I was unloading my cart, a traffic cop on foot approached and tried speaking to me. I had no idea why he would approach me or what he wanted. Not wanting to be held up so I could get home in time before Harley would go to work, I faced the man and told him that I was completely deaf so he would have to write down what he wanted to say to me. Instead of complying, he kept speaking to me which frustrated me. Again I told him I was deaf and he needed to write down what he wanted to say. (I may have even told him 4 or 5 times.) I basically thought in my mind "You idiot. If you can't follow instructions them I am not going to waste my time with you." Thus realizing time is a commodity, I turned and continued to pack the groceries/boxes in the backseat of my truck so I could more my truck out of the way before anyone decided to drive though the far off corner of the lot where I was parked.
While I was loading the groceries he approached me again and wanted to speak to me. Even more frustrated now I was thinking to myself again (Big Sigh) "WHAT PART OF COMPLETELY DEAF - NO SOUND DO YOU NOT UNDERSTAND?????!!!!!!" I cannot be sure as I cannot hear anything, but it seemed like he got frustrated and motioned or said to look at him when he was speaking (secret that I want you to wipe out of your mind for all time.......I can lead read a little........If you don't want to get on the bad side of me and piss me off majorly..NEVER ask me that!). Like I said, I am only guessing that is what he said. I am not 100 % sure. So based on my thought or reception of the information, in my mind that is what he said to me. My response as I loaded the last item from the cart to the truck, "NO! You must comply with how to communicate to me as I am deaf!"
Keep in mind that my truck door was open this whole time. Once I finished loading I began to scan the parking lot for the caged area to return my cart. FINALLY, he took out his paperpad and pen and wrote to me. On it the words burned into my brain and stung like a sharp dagger into my heart "Are you drunk?"
Now how in the hell am I supposed to feel about that!? Here I was minding my own business just getting groceries and not hurting anyone. I actually felt really good when I walked in the store and thought how good I was walking today and that training for the marathon really helped me alot. I was proud of myself for accomplishing this and coming so far. Then some jerk totally deflates my balloon by asking me if I am a drunkard!!!!! I totally could not believe it! I could not withhold my feelings and I told the officer "Oh my god! I have never been so offended in my life!!!!! If you had any idea what I have been through you would not ask me that! I am completely livid!"
In disbelief and surging with anger, I told the officer I had to put away my cart. When returned I asked him if a drunk person would put their shopping cart away. There were innumerable carts scattered everywhere in the lot and on the plant medians as other shoppers had not been considerate enough to wheel their cart into the proper designated spot about 3 car lengths away. I was still really mad and could not believe this was happening to me.
I asked the officer for his name and badge number to which he would not comply. I could not see his name on his uniform as it was covered by a yellow reflective safety vest. The only words he wrote to me during this whole time were "Are you drunk?" "Your ID?" I would not give him my ID until he provided me his name and badge number. We seemed to have a little war at this as neither of us would give in. I told him that I would not give him my ID until he provided me his name and badge number first. I said if I gave him my ID that he could just blow me off and never provide his information in return.
I wanted to write down on his pad and he pulled it away. As a new deaf person two years ago I also had a run in with a cop who would not let me have HIS paper. Thus I always carry my own and went to my truck to get it along with a pen. When I returned he still refused to provide his name and badge number. This made me really angry and I told him that I was going to file a civil complaint against him and write about this incident on my blog which is read internationally. Failure to comply to my request? No problem I let him know. I looked at his hat which read "Issaquah Police" and wrote it down. Then I documented the time, date, location, and place where this all transpired.
While this was happening, the man parked in the truck next to me had returned to his truck. I noticed and got his attention. I had told him that I needed him to be my witness as I was being harassed by this cop who did not believe I had compromised balance due to brain tumors and that he thought I was drunk. (Yes I had already told him that I suffered from brain tumors and NF2. He had never heard of NF2 and I guess he did not believe me.)
The man was really nice and helped facilitate the communication by writing on my writing pad to me. The officer wanted a phone number of someone to call to verify I had NF2 (AND WAS NOT DRUNK). Because I use the phone VERY RARELY (the bulk of my communication is over email and instant messenger and I had stated this), I only knew Harley's cell phone number. Seeing as it was a half hour before he needed to leave for work at this time, he did not answer his phone (I imagine he was taking a shower and getting ready).
I was at a total loss after that on what to do. At some point I got out my hiking staff out of the truck and showed it to the officer explaining that I use it when going places where I have difficulty, am looking at scenery, or making many stops as in the Seattle Street Scramble I had participated in the day prior. When I shop I have a cart which helps me with balance.
It was only when I was requested to move the truck that I realized my keys were gone! The officer took my freaking keys either while I was loading stuff or when I put the cart away!!!!!! He would not give me keys back to me and I had to have the good samaritin witness man I pulled aside move my truck. The officer was willing to give my keys to a stranger (not the owner of the truck) and not to me (THE ACTUAL OWNER OF THE TRUCK)!!!!!!!
We were at a crossroads. The officer would not give my keys back, never provided me his name and badge number, and would not believe I had this condition. The poor witness man (who knows if he needed to be somewhere) was also held up trying to help. He did the bulk of the communicating and I am very GLAD he was there! He wrote to me asking if there was anyone else that he could call. The officer did not use his phone. Instead the witness man made these calls on his own personal cell phone. My mind was totally blank! I could not think of anyone's number! He asked for my parents number and I stated that actually my parents JUST moved to Oregon and I did not know their number (it is written on a piece of paper next to my computer with their new address).
We actually have a friend in Issaquah but I could not remember his cell phone number as I seldom communicate over the phone. I gave him a number to try but it was not a working number. I could not remember the correct number. Then I remembered I had a hard time finding their house at night and that the directions might be in the glove box. I was thinking maybe the number would be on their too. I went to go find it and I had so much crap stuffed in the glove box (all necessities I feel) that I could not find it efficiently. I was upset, bewildered, and had to reach over to the other side of the truck over the center console to try to access it. I thought to myself, "Well crap this is not going to work." To access it more efficiently I would have had to walk around to the passenger side of the truck in the dark which would show my impaired balance more.
Then a light bulb went off in my head! I remembered that I still had my Team in Training Emergency shoe tag from the Seattle marathon still attached to my shoe. They could try calling our program coordinator with the Leukemia and Lymphoma Society who could verify that I had indeed walked a marathon, was a cancer survivor, and had NF2. On the tag was also written my condition "NF2". Why would I be wearing this if I was not affiliated with the Team in Training and why would I lie on there about having NF2?
They could not get a hold of her but her name and organization was on the voice mail message. At least it was worth a try and another phone number as I had no others with me or in my brain. Then my witness man was talking to somebody. I thought maybe he got a hold of her. The cop wrote to me that his sargent was coming down. After all this, he still did not fully believe I was not a drunk and would not surrender the keys to me. He had gathered my name by my communication with my witness and my ID tag (keep in mind I still did not know his name or his badge number). He had written to me that he was not familiar with my condition and asked if it affects my balance. I then had to explain my condition and that tumors growing on my auditory nerves also affect the balance and facial nerve that branches out from the auditory nerve. I smiled for him to show him my facial paralysis.
When the witness man finished the phone call I asked if he got a hold of Megan with the LLS. He told me that he had not be was talking to his mother who is an IV nurse at Good Samaritin Hospital. While we kind of had an offshoot conversation about that (as I am quite familiar with needles with all the medical stuff and MRIs I get) the sargent showed up.
The witness man was very nice and when the sargent showed up and spoke with him he was free to go. The witness man (sure wish I had his mailing address to send him a thank you....I do have his name and number) shook my hand and wished me a Merry Christmas. He had stood out in the cold damp weather and rain with us for 20-25 minutes. Who knows if he had to be somewhere. In a very busy month, approaching dinner time, and in the cold rainy weather he stayed by my side to help and was a "good samaritin".
The sargent seemed accepting of everything and by then I had the chills from the weather and started to shake. The unnamed officer finally wrote that he was sorry and learned a lesson. I was not sure what to say but was really glad this ordeal was coming to closure.
He wrote to me that he was responding to someone's complaint to investigate if I was drunk. Apparently the complaint was when I was entering the store. The annonymous person said I was touching cars when I went in the store which is really bizarre as I don't touch other vehicles in parking lots for fear that I may set off car alarms and never know. In fact, as I walked briskly to the store entrance I thought of how much my walking has improved and that I actually felt somewhat like a normal person. I thought about what a great thing training for the marathon has been for me and I was proud of how far I came and had walked a marathon! I was pleased with being able to walk fast again! I was totally exhilirated before entering the store.
When the officer wrote to me that someone complained about the way I walked I was puzzled and totally sapped. It was as if someone shot a hole through my chest. To me that was more upsetting then the whole ordeal I just went through! I searched the back of my mind and knew for certain I did not touch or lean on any cars as I was walking in. I was not even by cars. I like to have wide open space when I walk and had parked in the back of the lot away from the conjestion of compact vehicles. The only thing I can figure is when I gassed up a the same store establishment. There is not a large space between the gas pump and one's vehicle. Therefore, I do ease slowly out of the truck and do put my hands on MY OWN TRUCK for stability while I am gassing up. There was a problem with my pump and when I entered my card twice kept telling me to reinsert the card. Therefore I had to get the attention of the attendant and walked maybe 10 feet within that narrow space where I would have had to put my hands on the side of the truck and pump for stability.
Of all the damndest things, eh? You would think with the massive crowds (that is why the store hired a traffic cop) and the approaching holiday season, that people would be busy enough already with their minds focused on other things. Instead though, some ignorant sap took the time to critisize a disabled person and assume that I was a drunkard.
I had a short conversation with the officer and sargent. I told them for future reference it is wrong and offensive to assume somebody is drunk. There are lots of sick and disabled people (more sick and disabled than I). I continued that it is not the right thing to do to assume someone is drunk (ESPECIALLY WITH SOME ANONYMOUS STRANGER'S WORDS). I stated that it would be more appropriate to ask someone if they are ok. From there one can smell if there is alcohol on their breath and investigate further. I told them that I did not have a disabled sticker because I felt there were other people who could use it more than I could. I posed "If I can walk a marathon, then somebody else needs that space more than I do."
I did not realize how emotionally upset I was until I left the scene. By the time it was over with it was too late to make it home to see Harley off to work. I tried to go to another store I wanted to stop at but I was so upset that I missed the turn and ended up going a direction where I could not turn around until I was far away. Instead I went to the party store to look at things for our holiday party next weekend. As you would figure the dang holiday stuff was in the front of the store.
As soon as I walked through the door I started to have a breakdown. It was so humiliating! I turned my back to the cash registers and focused on the dog printed gift boxes next to the door. I can't produce tears but I can do the motion and I imagine the sounds of bauling. I tried to hold it in and focus on these printed boxes but it was not working. I was about to lose it any minute. Nervous of making a scene, I belined to the back of the store where I hoped nobody would notice or hear me.
LOL I actually hid out in the costume section. I stared at fake armor and lady liberty costumes for a long time (I have no idea how long). I was weeping without tears and kept telling myself to pull it together. I tried frantically to find costumes or something that would cheer me up all the while I kept an eye out for other customers to hide my shame from.
I wasted time looking at Christmas cards even though I already sent mine out. I was desperate to escape what happened to me and find something uplifting. For some reason or another I thought about my non-production and the tasks that needed to be done. Why was I at the store? I thought about my grandpa and other people who have been through difficult things and a voice in my head said "Stand back up! Life must go on!"
I went to look at the plates and cutlery and I noticed a shadow standing in the space next to me. It was a salesperson. Geez and I was trying so hard to be left alone. I told him I was deaf and did not understand him but the young boy really seemed to want to help as he did not go away. I thought "Oh alright, I will play" and asked him where the plastic flute glasses were. LOL Oddly enough he led me to the other side of the store where the costumes were. When we got there I kind of chuckled and said "Oh. You must have misunderstood me. I meant the champagne drinking flutes". Thinking back this did cheer me! LOL It was rather cute.
He led me to the correct spot and I looked at the glasses and the different party plates. A couple minutes later he returned. I told him I had a list and was just checking things out. Surprisingly he had a little paper pad in his apron and pen. Wow! That is really cool I thought.
Unfortunately the store was closing and was not quite sure if I was ready to drive home yet. I went to Ross next door which is open an hour later. In Ross stuff was scattered all over and there was too many people in the store that I could not hide. I became paranoid of eyes looking at me and the scenario played in my mind of people looking at me like I was a freak or drunk and somebody calling the same cops. I could not shake my apprehension and feeling of suffocation. I kept thinking about whoever that person was who reported me as a drunk to that cop. I just wanted to go home and be away from everything (to hide in my home where I am comfortable).
I made the drive home and unloaded the groceries. I began to break down again as I was carrying things into the house. When I parked the truck in its spot I turned off the ignition and just sobbed.
It is the darndest thing to not produce tears. You just sob and hyperventilate but your eyes stay dry. You don't feel the nice wet salty liquid running down your cheek. In a way you feel like a fake or an actor pretending or betraying the true emotion. You don't know exactly when to stop or when it ends as you cannot cry your eyes out without tears. I kept feeling around my eyes in hopes of feeling some tears.
Even though I shedded no tears, it felt good to release all the pent up emotion alone in my truck. I don't live in a neighborhood so being in the warm dry truck was a safe haven where I could baul/sob and nobody would hear or judge me.
When I emerged little Jake was standing outside of the truck door. He heard his mommy's cries and was there waiting to cheer me when I came out. As soon as I stepped out of the truck and petteed Jake, little Katie came over too to put a smile on my face. They know when I am sad and they are always there to lick my wounds and heal me again.
Upper photo: onset of facial paralysis on December 14, 2004.
