Monday, November 7, 2011

To Whine or to Wine?

I would love to whine, but I can't. The truth of the matter is I'm not a whiner. I'm an implementer of change. 

I am lucky to have the best friends in the world who no matter what happens, will not give my an inch of slack or let me feel sorry for a myself. We love each other and we treat each other the same way since we were 5. 

I take everything one step at a time. My reality is still this:

My SSD is $1,996.00 per month.
My rent is  $1,636.00 per month (Gas & Electric not included)
That leaves my with an income of $360 per month to live in Manhattan.

My social worker assured me she could get me a rent freeze and a food stamp increase. FTD is recognized as a rare terminal disease.

My DRI rent freeze application was denied.
My appeal to the denial to the NY Housing & Finance was also denied.
A subsequent phone call from a Lawyer with NYC Housing & Finance explained to me I make to much money. She also agreed with me I would get more help from NYC if I was a substance abuser or alcoholic.
Now I just got my new lease and my rent is going up to $1,700.00. That means my income will be $300 per month. There is no cheaper rent anywhere near me. I live in Manhattan and this is the way it is.

Lets not fret over little things, after all there is the food stamp increase application.
I made $2.03 a day in food stamps or $58.00 per month.
The increase not only was rejected, they lowered my food stamps from $2.03 a day to $1.45 a day. My monthly allowance decreased from $58 to $45. At least I know that because of my sacrifice we will not have to burden the top 1% of wage earners with a tax increase.

I'm barely making it and a rent freeze and food stamp increase would have meant I could have had a small measure of stability into the future the I wouldn't be on the streets.

Never mind never seeing my teenage children who live in Seattle. I miss them.

I'm bankrupt and cannot move. There is no place cheaper in the area. I have my support systems and medical help here (Columbia Univ. Med. ctr & Columbia Presb. hospital). My friends are in the area. My neighbors and building staff help me and are familiar with my condition. My support group at Riverstone "Memory Club" is here as well .

Right now I want for nothing because of the kindness of friends. I also have a couple of things going that hopefully will bear fruit. If they don't work out than I will find another way to survive.  I am living on the edge and I hate living on the edge. 

I have FTD and my life is in total chaos and disarray because of it. 99.9% of the world thinks FTD has to do with flowers.

Guess what, I'll find a way out. I really don't care what obstacles the Universe throws at me at this point. I am going to find away out of this hole. 

I ain't heard no fat lady singing yet!

I intend to keep going till there's nothing of me left. No matter how rough each day gets I will meditate and clear my my at night. I will figure out new ways to articulate what it is like to think like an FTD'er and to keep pushing towards greater public awareness of FTD.

I will continue to go to Starbucks 7 days a week and continue the work I'm doing. At this point my intentions are to start working towards speaking engagements and motivational speaking. This is with or without my other projects that are looking promising at this point. 

I believe we are all masters of our own fate. No matter how difficult things become I will never return to the medically induced fog I was in for      
over 6 years. It may not be fair to me or others around me, but that's the way it is. This is my decision to make and I've made it. Forget the easy road. 

Besides dealing with the minor complication of FTD in my life I am involved in many online group/forums/etc. I've noticed in multiple forums people get caught up with a situation and go on harping on a topic or point. Let me pull a Seinfeld and say,"Not that there's anything wrong against joining the band and being supportive." 

One example is a recent person who was justifiably upset and wrote about it. At the end the person wrote there sorry about whining. From that point there many wonderful supportive people went on to discuss whining. Page after page after page went on discussing whether whining was okay, whether the individual was whining and that this was the place to whine if they were whining. I'm sure someone will whine about me writing about whining.

I wrote the following response and I'm publishing it because I'm involved in many groups on and off line. I feel we all need to sit back, breathe and be human. In no way am I mentioning anything that can allude directly to any group or individual.

The following was my response to multiple pages of responses to whining:

To wine or not to whine, or to whine and not to wine. that is the question? I will at anytime share a bottle of wine and whine or not whine with anyone who prefers wining over whining or whining without wining.

After reading page after page of whine or not to whine, I'm sitting here at Starbucks laughing and not whining.

FTD is a strange, elusive, devastating, and absurd type of Dementia. Then again there are people out there that will argue it's not a form of Dementia.

Hey, caregivers and fellow FTD'ers. Kick back and relax with or without a bottle of wine and enjoy life for a moment. We are all doing the best we can and deserve some laughing, crying, whining and wining. Groups can be a great release, but let us all remember we need times of levity even in groups where things get vey intense.

Sit back with your loved ones and pull out the old picture album or bring up some old fun stories. We are living and moving on. Find a way to find some happiness in your life with or without wining or whining.

Howard Glick - FTD'er who is living life with happiness and purpose


  1. I know what is is to live on the edge, Howard. I am doing just that right now and there really is no more money coming in.
    My wife had FTD and I am her main carer, I only just got housing benefit a few months back, which has eased my mortgage burden by a third, I still have to find a bit over £400 to pay, electricity, telephone, water rates, the car I need for getting Patricia around.
    Oh yes, and food. You must eat food.
    I have tried to get help with Pat's care from the NHS, but they say she isn't disabled enough.
    There doesn't seem to be any more money out there, apparently and I can't get a part-time job, or a full-time one that will allow me to work part-time from home. If I did get one I would lose two of my benefits.
    After reading your blog I realise that I am not as bad off as I thought and my heart goes out to you.
    Keith from Facebook.

  2. Thankfully Pat has you Keith. I remember your writings and the difficulties you have encountered. My heart goes out to you.

    I just keep taking it all on alone and try to navigate the quagmire of obstacles thrown in front of me each day.


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