Fundraiser for Joe's Vital Nursing
Donation protected
Joe’s Story
By Dariel Figueroa, Journalist
[email redacted]
T: @DarielFigueroa
Video on gofundme.com courtesy of:
Philly Philms
www.Philly-Philms.com
rob@philly-philms.com
Pictures, like memories, are promises of the past. Even if the edges are seared, the whole of it remains. Moments are frozen in photos for you to revisit; the smells, the feelings, the love — it’s all there. I know a thing or two about memories. As a man dealing with ALS, my memories are of the times when I could still move without the use of a motorized wheelchair operated by the only thing that still works: my chin. I have memories of holding my grandchildren, the last four of which I have not been able to rock to sleep or feed; I can’t even feed myself. These recollections are like ghosts, and when I stare at my 11th grandchild, the best I can do is recall the feeling of cradling such vibrant life in my warm hands.
I also know about promises, as in what I regarded as the promise made to me by my union — which employed me for almost 27 years. When I retired on March 2, 2006 the Union Funds office confirmed for me that I would get healthcare for life. This I knew since I worked two additional years for the sole purpose of making sure that I qualified for lifetime health coverage, and my retirement papers indicate 100% retiree medical insurance. In June 2015, three and a half years after I was diagnosed with ALS, and three and a half years after skilled nursing care kept me breathing on the ventilator that pumps life into me, my union told me that they were changing their insurance plans. Letters we received from both the union and the company administering the insurance indicated that the new insurance I would receive would stay the same or become enhanced. That was not the case.
My insurance, the one that provided the skilled nursing that keeps me alive, clean, and inhabiting the closest thing to a normal life that I can imagine in this state, has changed. The insurance plan that I believed was promised to me for life is not staying the same, nor is it becoming better; the skilled nursing was terminated, and without it I will become another statistic in this terrible disease known as ALS. The union has made the decision to take away my skilled nursing coverage, and I believe they have done so without considering what happens to me when the assistance that has been keeping me alive is ripped from my life. I need the nursing to survive.
My wife, Donna, and I have fought against their decision. We’ve been to court, where a Federal Judge said, "This is unethical, immoral and reprehensible, but the union did not break any laws.” Without the union breaking any laws, there is not much to be done. And that is where we are at today.
ALS has taken over most of my functions. My brain is still very much alive, but the vessel I travel in has failed me, but even more so, in my view the system has failed me and the union has failed me. The decades I honored in my profession have been washed away, along with my health coverage. For the union that once was my home, I imagine that this is just a matter of money. But, for me, it’s more than that. This is not merely just a matter of life and death; it is a matter of memory and promise. When I’m gone, it is my hope that those two ideas will continue to thrive and that others so afflicted will not endure the disappointment that I did. But, for the time I do have left, I still want to build new memories, and I want to promise the family and friends around me that those memories will be built with their love. I hope you can help me do that.
This is Joe’s story, and sadly, is not one that is solely unique to him. Unfortunately, thousands are afflicted with ALS, and many cannot pay the costs required in order to continue living. In Joe’s case, though, you can make a difference. Please, join us in helping to provide skilled nursing for Joe so he can keep fighting this terrible disease. By donating, you’ll not only deal a blow to the unfair systems in place, you’ll stand in the corner with Joe as he wrestles with a malady that knows no cure. Fight with Joe. Fight with us.
Joe, Donna and the entire family truly appreciate the help and prayers.
By Dariel Figueroa, Journalist
[email redacted]
T: @DarielFigueroa
Video on gofundme.com courtesy of:
Philly Philms
www.Philly-Philms.com
rob@philly-philms.com
Pictures, like memories, are promises of the past. Even if the edges are seared, the whole of it remains. Moments are frozen in photos for you to revisit; the smells, the feelings, the love — it’s all there. I know a thing or two about memories. As a man dealing with ALS, my memories are of the times when I could still move without the use of a motorized wheelchair operated by the only thing that still works: my chin. I have memories of holding my grandchildren, the last four of which I have not been able to rock to sleep or feed; I can’t even feed myself. These recollections are like ghosts, and when I stare at my 11th grandchild, the best I can do is recall the feeling of cradling such vibrant life in my warm hands.
I also know about promises, as in what I regarded as the promise made to me by my union — which employed me for almost 27 years. When I retired on March 2, 2006 the Union Funds office confirmed for me that I would get healthcare for life. This I knew since I worked two additional years for the sole purpose of making sure that I qualified for lifetime health coverage, and my retirement papers indicate 100% retiree medical insurance. In June 2015, three and a half years after I was diagnosed with ALS, and three and a half years after skilled nursing care kept me breathing on the ventilator that pumps life into me, my union told me that they were changing their insurance plans. Letters we received from both the union and the company administering the insurance indicated that the new insurance I would receive would stay the same or become enhanced. That was not the case.
My insurance, the one that provided the skilled nursing that keeps me alive, clean, and inhabiting the closest thing to a normal life that I can imagine in this state, has changed. The insurance plan that I believed was promised to me for life is not staying the same, nor is it becoming better; the skilled nursing was terminated, and without it I will become another statistic in this terrible disease known as ALS. The union has made the decision to take away my skilled nursing coverage, and I believe they have done so without considering what happens to me when the assistance that has been keeping me alive is ripped from my life. I need the nursing to survive.
My wife, Donna, and I have fought against their decision. We’ve been to court, where a Federal Judge said, "This is unethical, immoral and reprehensible, but the union did not break any laws.” Without the union breaking any laws, there is not much to be done. And that is where we are at today.
ALS has taken over most of my functions. My brain is still very much alive, but the vessel I travel in has failed me, but even more so, in my view the system has failed me and the union has failed me. The decades I honored in my profession have been washed away, along with my health coverage. For the union that once was my home, I imagine that this is just a matter of money. But, for me, it’s more than that. This is not merely just a matter of life and death; it is a matter of memory and promise. When I’m gone, it is my hope that those two ideas will continue to thrive and that others so afflicted will not endure the disappointment that I did. But, for the time I do have left, I still want to build new memories, and I want to promise the family and friends around me that those memories will be built with their love. I hope you can help me do that.
This is Joe’s story, and sadly, is not one that is solely unique to him. Unfortunately, thousands are afflicted with ALS, and many cannot pay the costs required in order to continue living. In Joe’s case, though, you can make a difference. Please, join us in helping to provide skilled nursing for Joe so he can keep fighting this terrible disease. By donating, you’ll not only deal a blow to the unfair systems in place, you’ll stand in the corner with Joe as he wrestles with a malady that knows no cure. Fight with Joe. Fight with us.
Joe, Donna and the entire family truly appreciate the help and prayers.
Organizer and beneficiary
Tommy Swider
Organizer
Atco, NJ
Joseph Swider
Beneficiary
