I've accepted my diagnosis of FTD a long time ago. My life has been altered and in order to continue on I needed to make subtle differences in my life. I've done the best I could.
One thing I hadn't given up hope for was having my long term disability from Unum reinstated. In my heart I felt that right would prevail and sooner of later it would be reinstated. It is proven medical fact that I became symptomatic with FTD while I was employed and my company was paying premiums for my disability policy. It's been proven that my bipolar diagnosis was erroneous and that the medical community of Seattle just wasn't familiar with the rare disease called FTD.
Would having my disability reinstated make life altering changes that would have me sitting at $50,000 lunch fundraisers with Mitt Romney. No, but it would've made my life easier. I'd be able to see my teenage children more and help contribute to there lives and education. I'd be able to have someone come in and help me a bit with cleaning and cooking. Take a vacation and have some money for clothes, vacation etc. My dream of possibly visiting Israel again in this lifetime is now gone. Most of all I wouldn't be a charity case. I live in NYC where life isn't cheap and with SSDI I'm only making it with help from friends and others of you out there. I've been fiercely independent all my life and have been there for others, never needing help. I've never have given up that hope of financial independence thinking something could get me out of this FTD laden hole. I always had secreted in the back of my mind that the 6 Billion Dollar company Unum would come through when realizing I wasn't disabled from a broken leg and by no fault of my own did not get the appeal paperwork in on time.
My lawyer contacted me 2 nights ago to let me know he wouldn't be filing. I've also spoken to other lawyers who have also told me they didn't think the case was worthy of taking on. The law is the law and since my appeal was not tendered in time because of the misdiagnosis, there is no case. Fairness, justice, right and wrong have nothing to do with it. If this was a criminal case DNA would have it reversed, but it's not.
Okay, now it's time to move on and face my current reality. I'm quickly becoming a charity case. Just writing that sickens me. There is no question that things are getting more difficult as time goes on. I can no longer plan things at all or multi-task. Getting just about anything done is extremely difficult. Every day is a different smorgasbord of FTD symptoms to deal with. I look at the two years since I left the hospital after being diagnosed and told to make my "end of life" plans. Well, I still don't have a will, medical proxy or any type of plan for the future. I have meaningful loving people who care, show up and disappear just as quick. People have there own lives to live. I can't afford to hire anyone to help me and I have no caregiver, so I fall into the category of people will help me when they can.
Guess I look in pretty rough shape. The super of my building saw me in the supermarket and came up to the cashier and insisted on paying my bill. I told him I have money, but he was just being extremely nice. I was born and raised in NYC. I enjoy living in NYC now and I fully intend to stay here. People do know me in the neighborhood I live in and I get a measure of support. Many know I'm ill with FTD and have a bit of patience with me or help me. Sometimes my behavior is out of control. I was at the dental clinic on Tuesday and this toddler was screaming and yelling in happiness and wouldn't stop. The mother made no effort to keep him at all quiet and instead kept playing with him. Finally I shouted would you please shut that f ing kid up. This is a doctors office, not a playground. Of course, it was now all eyes on asshole Howard time. What can I say, "shit happens".
Lately, I've had many people that know me telling me I can no longer afford to stay in NYC because of my financial situation as well as my medical condition. Life has been becoming incredibly difficult and I'm having difficulty. People have been telling me I need to move to assisted living, to a family house where people can look after me and some have suggested a group home. I've been told to seriously start considering Seattle, Colorado, Florida or other places.
I'm going to be very clear in this. I can barely afford to be in NYC, but I can't afford to be anywhere else. This is the only place where I can have any type of life. My behavioral issues anywhere else will have me wind up in police station or and institution. I'm getting outside help now so I'm okay and if that changes so be it. Besides I'm not ready for "Dress up Howard holiday's" yet.
Yes, I continue to get squeezed and more services continue to be reduced or cut. This year not only was my food stamps reduced twice, it was finally cancelled. Home health aide gone, Medicaid cancelled. Other services gone as well. Yesterday I was informed my extra-Medicare help on pharmaceuticals is being cancelled. Guess that means less pills I have to take.
We are all masters of our own fate. I fully accept that my life is not only rough now, but is going to get much rougher. So what, it's my life and I'm going to keep it going my way. I'm not asking anyone for financial help, all I'm asking is to support me in my decision in keeping the quality of life I have. I'm not giving it up and anyone that suggests me moving again, is not going to get a pleasant response.
I've had to adjust and live a different quality of life to accommodate my sidekick FTD. I have a decent life, everything considered. Of course I always had hope my quality of life would improve. Now, that hope is gone, but my reality isn't bad. I'm going to keep on typing and get back to filming and show what happens to a life stricken by FTD. I'm going to continue my work to help those in the FTD world and will not waiver until there is nothing left.
Being alone with deteriorating health and a declining financial situation is a recipe for disaster. In life, not every story has a happy ending.
So, am I in bad shape. No, it's another day and I'm at Starbucks kicking ass. Universe, bring all the bullshit you have to offer my way and what you'll find is I'm still not going to give up. In fact, I'm more resolved than ever to keep being productive and live a decent life with purpose and happiness.