To catch up any new followers....Im young, 38, I have an active (did...still do compared to most) life. Ive got a loving and supporting husband and three beautiful children. I live in an amazing town and part of an incredible community, of which I am very involved. I am a member of our local church, treasurer and marketing coordinator of our Farmer's Market and President of our PTO. I try my best to raise my kids right. I get our veggies from a local CSA and our milk from a local dairy. I make our own yogurt, cheese, laundry detergent, fabric softener, etc.. I even make my own Goat's milk soap and sell it locally. One of my favorite things to to do is cook. I LOVE it. Trying new recipes, sourcing ingredients, etc..makes me ultimately happy. Other things that make me ultimately happy are cruising in my new old classic car (just inherited it), flying and taking small day trips with the kids.
One of my friends says that I live in a dreamworld, and I do...every minute of every day. I have to remind myself that I have it so good, because I also have Multiple Sclerosis, bad. Yeah, everyone says I look great, I know, but the effects I feel are all around me and never go away. There are some people that find out they have MS because of vision changes, or slight numbness in a pinky. Not me. Those of you that follow the blog I wont bore with the details. My blog is chronological, backwards. So, you can read through my diagnosis process. I have deficits that effect just about every way I live my life, every day. I am facing battles that I never imagined I would have to fight with MS, especially now, as I try to enter back into life. After I comprehended this disease, where it has put me and what the future holds I thought I was through the worst. looking back, first of all, I mainly stayed home ....in the security of my own house. The only pressures were that of the seven people of our household, which was plenty. Now I am out and about and facing new struggles. I am being met with resistance and friction in every direction I turn. Everyone, including my family, is having a difficult time letting me back into my life. Where people were once confident about my skills and my ability are now filled with doubt and hesitance. I know what I can competently handle. Even if Im given something slightly out of my range, I have always risen to the challenge. I dont expect people to let me fall on my face, but I do expect them to have confidence in me and give me the opportunity to try. I know its a fine line, but I hope others, and myself can figure it out. I now have a glimpse of where some of this underlying 'rage' that is supposed to come with MS stems from. The inability for people to have the trust and confidence they once used to in you. The other part of the rage for most people I would imagine comes from fear of the future unknown and the 'why me'?. The last one doesn't weigh on me as much as some, but I do have my moments. When I interact with people that do not know I have MS, I am treated totally different.
My husband and I went to a networking cocktail hour this week. It was at at The Interlaken Inn, somewhere which I had interviewed for a job the week before I got diagnosed. It was a high functioning, high stress, physically active job that I could never do now. When I got home from Newport, I was supposed to attend a trial event. Needless to say, that weekend came and went and I remained in Newport in the hospital. At that time I was unable to use my hands or even walk. So, I had to drop the ball (which I NEVER do). So, flash forward to the other night. We had some cocktails, mingled with the General Manager and upper staff, talked cars and planes and wine and local venues and, of course, soap for that's what brought us there. The Inn and Spa may carry my goat milk soap. I showed them some samples and they were impressed. During the course of the evening, we shook hands briefly with the executive chef. He is the one I interviewed with. He seemed not to remember me. However, in living with my damn super human strength conscience, I asked to speak to the chef before we left. When he finally came up, I figured the managers would step aside but they were obviously too curious. I reintroduced myself and the chef admitted remembering me after he saw me earlier. I apologized for never contacting him about the job and proceeded to briefly tell him why and that the offer was in fact very important to me. I left off with telling him how I use my husband for balance by clutching to his arm and having him lead me, how I have no vision in my right eye, etc... I stopped and they just all fell silent. Then came the usual, apologies and junk,,,, blah blah blah, but after that, they even looked at me different and shook my hand different and spoke to me different. I hate that.
My husband and I went to a networking cocktail hour this week. It was at at The Interlaken Inn, somewhere which I had interviewed for a job the week before I got diagnosed. It was a high functioning, high stress, physically active job that I could never do now. When I got home from Newport, I was supposed to attend a trial event. Needless to say, that weekend came and went and I remained in Newport in the hospital. At that time I was unable to use my hands or even walk. So, I had to drop the ball (which I NEVER do). So, flash forward to the other night. We had some cocktails, mingled with the General Manager and upper staff, talked cars and planes and wine and local venues and, of course, soap for that's what brought us there. The Inn and Spa may carry my goat milk soap. I showed them some samples and they were impressed. During the course of the evening, we shook hands briefly with the executive chef. He is the one I interviewed with. He seemed not to remember me. However, in living with my damn super human strength conscience, I asked to speak to the chef before we left. When he finally came up, I figured the managers would step aside but they were obviously too curious. I reintroduced myself and the chef admitted remembering me after he saw me earlier. I apologized for never contacting him about the job and proceeded to briefly tell him why and that the offer was in fact very important to me. I left off with telling him how I use my husband for balance by clutching to his arm and having him lead me, how I have no vision in my right eye, etc... I stopped and they just all fell silent. Then came the usual, apologies and junk,,,, blah blah blah, but after that, they even looked at me different and shook my hand different and spoke to me different. I hate that.
As I get farther from my initial diagnosis and some people that either don't know me or are comfortable with me let their guard down. They lose their constant positivity and express their real thoughts and views. I think this is good, to an extent. After all, its what I wanted, right??? I've realized, through all of this, that we all carry around negative traits, but is it really everyone else's responsibility to deal with them, or is it our own? Should I have to deal with someones insecurities? False realities? Lack of etiquette? I think people should do more, have more willpower, to be a stable structured intelligent and kind person to others. After all, you never know how long, or at what capacity, you will be here. My goal is to be the best person, friend, confidant, etc.. I can be, to keep my weaknesses from interfering with other's lives. That sounded like a good ending place didn't it?, but I have more. Good stuff now.
So, I made a big step(after being cut off from society for the past 6 months) and took the role of PTO President. In some schools I'm sure the position would be more demanding. In our school of 140 families, its just what I need to get back in the swing of things. To start the year off, I had to give a little talk at the first school wide family event, Curriculum Night. No big deal. After teaching riding and lecturing all over the East Coast (and parts of the West) and my work at the winery, this was no big deal. I met my daughter at the bus stop that afternoon, after spending all afternoon at the doctor and trying out my new muscle relaxant to ease the stiffness in my neck and back, and she says "mom, do you know its Curriculum Night tonight?" WHAT????? Well, of course I do..... I have 45min for this muscle relaxant to wear off, think about what I want to say, get there and make a complete fool of myself. I was a mess. My issues: walking up to the mic in front of everyone without swaggering or tripping, grabbing the mic and not the air next to it, not falling over the cord, speaking without slurring my speech and sounding like a drunk and of course... Saying what I need to say. After 30 minutes of pacing around at home giving my entire family hell for nothing, I headed to school. Once I left, I wished I had brought my husband or daughter to lead me, but I was just too nervous to think of that. I walked in and already felt overwhelmed, being stopped here or there with questions or hellos when all I wanted to do was orient myself with the set up. I waited my turn and walked up as straight as I could, my blind eye to the audience. The principal discreetly put the mic into my hand so I couldn't miss it. As I surveyed the audience, I saw so many people that know me, what I've been through, that have read my blog. I couldn't have been happier at that moment to live in such a small, caring community. I made it through my small, yet big, speech. The principal came and took the mic from my hands and I made it back to my spot. Done. I'm back in the game, and it wasn't so bad after all.
One more bit of good news. I got accepted as an official ECAD client. I have been in the application process with East Coast Assistance Dog program for months. I finally got invited up to their facility in Dobbs Ferry, NY this week for a personal interview. I would have gone alone, but I kind of wanted to get the sense of what they would be placing a dog into. So, I brought my chaos with me. Loaded the van with Al, my mom and the two little ones. They had a great time, even got to play with and walk some dogs themselves. ECAD went thorough everything with me. They took about 2 hours. They even gave me a tour of where I would be staying if I was to come up and train with a dog. She made a list of all the things I would need a dog to do. Besides stabilizing and bracing me it would be trained to stop everytime there is a change in terrain (curbs, steps, etc..) so I could assess the situation, since I have no depth perception. The dog would also open doors, turn on and off lights, retreive items from the floor, get my shoes, pull the kids wagon, go flying with me, be calm around the farm animals, etc.. I could even have rings on its harness for the kids to hold (or worst case scenario, clip them onto) when I go places with them. It can help me in so many more ways than I originally thought. ECAD has 3 types of dogs: Golden Retrievers, Labs and Lab-Dane mixes. I LOVE the lab danes. Unfortunately, those two will be gone by the time I get my money raised and theres 2 litters of Goldens being raised before the next litter of lab dane mixes. So, I could be looking 2 year out, unless I settle for a Golden. So, then came the fun part...trying out the dogs.
I tried two lab danes. They were both great and so calm and focused around the kids, though the first was a little wiggly. The second was a yellow named Chelsea. She was wonderful. It felt so good to be out there walking normally with her at my side. I could go on, but I'm already a bit long winded tonight. We then talked $. It costs ECAD $12000 to raise one of their dogs from birth to placement. They ask their clients for $500 non refundable deposit and then for them to fund raise $8000 for ECAD. The fundraising, verses the client just cutting a check, serves a couple purposes: they know, if the person puts that amount of work into fundraising, they will put that amount of work into the dog, it also involves the community that the dog will be placed in and proves their support of it. The money also goes to the clients room & board for which they have to stay on site for 2 weeks to train with the dog. So, the next day I got my call. Once I raise the money, I am officially in line for a dog. So......everyone out there that wished they could have done something along the way for me but weren't sure what...here's your chance. Donations can be made in my name directly to ECAD and are tax deductible ( https://ecad1.org/donate.html ). When donating, online or by check, please make sure to put my name Tina A Torizzo as the client, or donations wont go to me!!!Any amount is accepted. I will also be putting together some fundraisers, with the help of friends, to include a dinner, dog walk thon and maybe even a Fly-In/ Car Show. So, stay tuned and spread the word, please.
ECAD's whelping facility is in Torrington, CT and they are currently seeking 'puppy petters' for their newest litter. Contact them to set it up. They even have a LIVE puppy cam at: http://explore.org/#!/live-cams/player/east-coast-assistance-dogs-cam
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