Forgetting Hero

It’s strange how one story can lead to another.

After reading a post here (http://bit.ly/a1G2nz) about CPR and the second chance that my friend, Dena, gave a young girl, my friend, Jeff, emailed to remind me that he was given a similar second chance. His story of nearly dying because he was choking – literally choking – on a hotdog at the Ruth L. Chaffee Elementary School Carnival Night had a happy ending. He’s alive. He’s a successful Manhattan talent agent. He got married to a wonderful woman. He has two adorable children.

The other part of the story, however, does not have a happy ending. It is heartbreaking, in fact. Jeff was rescued by one of the neighborhood moms, who happened to witness the hotdog attack on Jeff’s trachea. Irene, who trained as a nurse and spent part of her professional career practicing that loving trade, knew that Jeff was in trouble and she knew what to do. Without Irene? No Jeff. No Jeff’s wife. No Jeff’s children. And our neighborhood would have been both decimated and devastated by the loss of one of our favorites.

Irene lived life filled with manic energy. She worked more than one job; not because she had to but because she enjoyed doing so. In fact, at one point, she was doing pharmaceutical sales for two companies (without either knowing it!). She raised two great children, and maintained a loving relationship with her husband of now 43 years.

I have heard it said that when a person dies, the light of their candle, while extinguished, can still shine if we tell stories about them, remember them, and hold them in our hearts. If this is true, then in Irene’s case, the fire atop her candles burns bright but the light does not break the darkness. She has been fighting, and I think now fair to say, losing her battle against early-onset Alzheimer’s Disease.

Dementia of any kind is cruel. In the early stages, it has the unique ability to worry the afflicted person by causing them to second-guess their decision-making process. It steals keys and jewelry. It hides phone numbers. It blurs addresses and blocks the correct route home. It’s just plain mean.

As the disease progresses, it consumes short-term memory, preventing people from realizing that they are repeating themselves, that they have not eaten or bathed, or dangerously, that they have not turned off the stove. Scary, right? Well, it’s even more horrifying because it causes fear. It creates an Oliver Stone-like suspicion of others (remember Jessica Tandy accusing Morgan Freeman of stealing from her in “Driving Miss Daisy?”). Worry takes over: Family members cannot be trusted; physicians must be conspiring to take away freedoms; and the world is simply out to get you. Or, so I have been told by patients who are trying to run from the illness.

Perhaps the cruelest part of dementia is the confusion that it showers on loved ones who are forced to watch someone’s mind erode while their body is maintained. It just does not make sense. We can understand – even if our hearts reject the meaning – when disease destroys cells, organs and bodies. It is far more difficult to comprehend how a healthy looking person is fading mentally. Where are they? We want to believe that our loved one is still “in there” somewhere.

From my vantage point, Alzheimer’s Disease is not represented by the proverbial emotional roller coaster. It has no peaks; only valleys. If one must analogize, then Alzheimer’s is like the water flume: you just go down, and your boat fills with the tears of unfilled dreams, heart-broken loved ones, and a life lost to unanswered questions.

According to the Alzheimer’s Association (www.alz.org), more than 5.3 million Americans are living with this progressive and fatal brain disease. My dear friend, Irene, is one of them. The disease is destroying her brain cells, which results in memory loss, cognitive challenges, and as was the case with my Nana, will eventually cause a premature death. Alzheimer’s, which is the most common form of dementia and accounts for approximately 70% of all dementia cases, is the seventh leading cause of death in the United States. Though there is no known way to prevent Alzheimer’s (yet!), a number of studies are investigating the influence of mental fitness, physical fitness, diet and environment. Drugs are helping slow the disease progression, and the evidence seems convincing that early detection – as is true with most diseases – has benefit.

I’m honest enough to know that we will hear a eulogy for Irene before a cure is found. But I also realize that there is a great deal that all of us can be doing. First, encourage Congress to pass the National Alzheimer’s Project Act (S. 3036/H.R. 4689), which would require the government to create a national plan to solve the Alzheimer’s crisis, known more personally as Irene’s crisis. (For help writing a letter visit: www..kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=6239707.) Second, you can donate money. Money translates into research, advocacy and support. (Visit www.alz.org/join_the_cause_join_the_cause.asp to figure out how to financially help.) Finally, you can walk (or pledge to support someone who is walking) in a Memory Walk, which are held in all 50 states. Want to be part of Irene’s Memory Walk? Join her family on October 24 in New Jersey. Or, let the internet do something remarkable today and make a donation ($5, $10 or more!) to www.memorywalk2010.kintera.org/greaternjchapter/skeyles in honor of Irene’s fight.

 Irene saved Jeff’s life. I don’t think that she remembers that anymore. But, if we do something to fight Alzheimer’s, we will prove that we remember. And maybe, just maybe, she’ll know that the light of our many candles are shining on her, creating a path for her to find comfort, hope and love. This disease will inevitably take Irene but it will not take the wonderful memories that we have of her as mom, wife, friend, and even heroine.

Special thanks to Irene’s daughter, Sherry, for letting me tell this story.

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15 Responses to Forgetting Hero

  1. Elisabeth Block Teller says:

    Ben,
    What a beautiful tribute. I have a smile on my face remembering my visits with Sherry and seeing her mother circling job ads. Unfortunately, I also have a tear in my eye for all that she and her family has gone through with this tragic disease. Thank you for sharing such a well written blog.
    PS: I’m glad to hear that Jeff is doing well. My regards to you all.

    • If we remember her magic, then Irene will not be silenced by this dreadful disease. And, hopefully, by asking Congress for support, raising money and awareness, and just reaching out to help those who are both directly and indirectly impacted by dementia, we can move towards a cure and towards finding a way to prevent this suffering.

  2. Eric Glazer says:

    Great post, great tribute to Irene! I was there that evening at Ruth L Chaffee sitting at the same table as Jeff …I remember the incident like it was yesterday and my 2 girls are still not allowed to eat a hot dog without it being split down the middle ….Alzheimers (and all forms of Dimentia) are brutal diseases and we are not close to a cure …we need more awareness and funding to research all incurable, neurological disease

    one disputable point point …was Jeff really one of our neighborhood favorites?

    • I could not agree more. Dementia needs the attention of this nation, and I’m hopeful that more people will realize the cost these diseases place on families and our health care system.

  3. Sherry Keyles says:

    Benjamin,
    Thanks for sharing my mother’s story and bringing awareness to this devastating disease. She often recalled the incident but don’t think she saw herself as a hero, just glad she was in the right place at the right time and had the training to help. She would be extremely touched to know Jeff and everyone else remembers her as heroic. And would also be happy to know everyone still remembers her job adventures. as you said, the best way to honor my mother is to raise money and bring more awareness to Alzheimer’s so other families do not need to watch their loved ones all victim to this cruel, mind-robbing disease.

    • Sherry,
      Thanks for allowing me to share this story. In truth, this is hardly your mom’s story. Her life (and story) would fill volumes, would make us laugh, and would certainly bring to life a woman who had a true zest for life. This small chapter in your mom’s story gives us the opportunity to remember her greatness while encouraging others to work diligently to bring an end to, as you perfectly describe, “this cruel, mind-robbing disease.”

  4. Ezinna says:

    Everyday for the past three years, I have seen first hand the devastation of dementia syndromes: Alzheimer’s, Lewy Body, FTD, and on and on. Today, one of my favorite early memory loss group participants, the 85 year old rocket scientist, asked if the memory loss will take away his intelligence. I shared with him that though I am not a physician, I can safely say that his legacy, essence and the person he has been to and for himself, his family and his friends will remain and will not be stolen by the disease. I assured him that his wife and children will remember for him and remind him of all the amazing things he has accomplished in his life – of which he is so proud. Thank you Benjamin for reiterating something so important – we should remember for those who are no longer able to remember. Our tributes and even sitting with the Irenes in our lives to look at old pictures or talk about yesterday or yesteryear is a loving and brave way to punch this disease in the face while the medical scientist plow through all they know and do not yet know in search of a cure. I am grateful for your writing. I have now read every single post so far. You have many letters after your name – Benjamin Albert, friend, compassionate, expressive…continue writing and I will continue reading. Thank you (and your wife and kids) for sharing of your talents.

    • Ezinna,
      You are, as always, too kind. I really appreciate you sharing your experience with those struggling with dementia. You provide wonderful and caring suggestions that we can all embrace to enhance the lives of people fighting dementia, and their loved ones, who struggle to hold onto a mind that is a life.

  5. Ellen says:

    You touched our heartstrings with your tribute to Irene who was such a vibrant force in our neighborhood and so much a part of the memories of all of us who grew up sharing vacations to the Catskills, babysitting for eachother’s children, playgroups, car pools and so much more. Our lives were so entwined and Irene was a colorful ribbon woven into the fabric that made us a community of friends.

  6. Sid Keyles says:

    Benjamin,

    What a nice tribute to my wife, Irene! Given her present, diminishing condition, it is gratifying that friends remember the vibrant, caring person that Irene was before the effects of Alzheimer’s began to turn her into a person with characteristics quite different than the Irene I had lived with for 35 years before we received the terrible diagnosis. While there is no current cure to help Irene (and, thus, help her many friends and family members), supporting her (and me) through donations made in conjunction with our upcoming Alzheimer’s Memory Walk and taking steps to increase research to help find a cure are always greatly appreciated by those who know Irene today. The silver lining in the past 8 or so years since that initial diagnosis is that Irene’s behavior and disposition are generally much better than the average Alzheimer’s patient. She has not exhibited as much of the destructive and argumentative behaviour that is so common, but has maintained a somewhat relaxed and friendly demeanor that makes it easier for me to care for her and permits her to still be welcome by friends and relatives at social functions. (Yes, the medications she takes probably do help out.) But, above all, the good wishes and words she receives from friends like you, your family and all of those she knew in Newington when we see you and them on numerous occasions have to be contributing factors in making her as comfortable and satisfied with life as is possible in her present condition. As Sherry and I often discuss, we can’t really tell what is going on in Irene’s mind most of the time, but I am sure she somehow gets to recognize the friendly hellos and cordial attempts at conversation that so many of you are kind enough to bless her with when we do get to see everyone. The bottom line is that Irene’s suffering the past 8 years has been rough on everyone who knows her, but the kindness bestowed on her (and the support shown for Sherry and me) has helped make a very difficult situation so much easier to deal with. I appreciate the nice comments on your original blog and am sure that Irene would like them also.

    • Sid,

      Thank you so much for sharing your critical perspective. Of course, not mentioned in my piece is the hero in your house. You have impressed all of us with your committment to Irene. If there are lessons to be learned about love, respect, honor, then you are writing those lessons, and we are all trying to learn them from you. Good luck today, tomorrow, and at the walk.

      Much love,

      Benjamin

  7. laurenluzz says:

    Benjamin-
    Thank you for posting this…I hope Irene is dancing in Heaven, her brain fully intact, looking down and recognizing her beautiful family.
    My heartfelt condolences to the true heroes in this story; Irene’s husband Sid Keyles and the others who cared for her.
    While it is torture to watch a loved ones memory fade away, if we (on the sidelines) do our job, their essence will never leave us if we keep them alive through our stories and with our love. Let us be the memory for those who can no longer remember (I think someone already said that, but it’s so true)…And please, let’s put our money into research for this brutal, horrific disease. It steals more than the mind. It robs the soul.
    May Irene rest in peace and may the memories of who Irene really was- before Alzheimer’s, bring a smile to the face of all who knew her and comfort her family during this time of sorrow.

    Sincerely,
    Lauren Luzzi

    • Lauren,

      Thanks so much for your beautiful words. I am pacified tonight by the thought of Irene dancing in heaven, her memory fully restored. Diseases of the brain have such remarkable and unfair power. The level of unfairness is hard to fathom, and I join you in looking to the day when research finds a cure, or at least a way to prevent such neural destruction.

      Thank you for being part of the conversation. I hope that you’ll share this story with others so that we can raise awareness and money to win this dreadful battle.

      Benjamin

  8. Naomi Keyles says:

    Reading Benjamin’s beautiful words made tears roll down my face. They were so tender and touched my heart deeply. Irene was my cousin. Sidney’ father and my husband Jerry’s father were brothers. While reading all the nice comments other people wrote I wanted to share the last time Sid and Irene spent time with Jerry and me. They were in Florida visiting some other people last year, and they spent an afternoon with us. We went out for lunch and Irene was sitting across from me. I noticed she was looking at some banana bread that I was eating. I put some on her plate and she looked up and gave me this wonderful smile as if she was saying thank you. It was the last time I saw her and to this day I remember that beautiful smile as if it happened yesterday. What a precious memory it leaves in my heart whenever I think of her still. I just wanted to share that with her family and friends.

    • Naomi,

      Thank you so much for sharing your sweet memory of Irene. She was an incredible woman, and is missed by so many. If nothing else, I’ll always remember the smile you describe — one that she was permitted to keep even when disease stole so much more — and her infectious laughter. My sincere condolences to you and the entire family.

      Benjamin

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