Coming Home

Last week I had the opportunity to travel back to my home town of Cuyahoga Falls, Ohio. It always gives me pause returning, as so many memories come flooding back whenever I am there. What I find interesting; it is not just memories of my being a little girl growing up in this lovely little town but also my more recent memories, the reconnecting with friends again. I have not lived in this town for over 40 years and have barely returned except for high school reunions. Something happened in 2009 when I returned for my 40th reunion, something wonderful. I felt a sense of belonging, a sense of a closeness that only people that are the same age and grow up in the same town can experience. It is a rare experience to find such camaraderie.

I arrived on Sunday, September 11th, such a somber day. There were my friends, Bill and Dave waiting to take me out to dinner and help me get my books ready for the next day's upcoming events.

I returned to speak to the entire student body of Cuyahoga Falls High School. This would not have happened if it weren't for the persistence of my high-school friend, Bill. He made it happen.

He asked me what he could do to help and he didn't rest until he got the speaking engagement for me.

Three of my class of 1969 friends also came to hear me speak,Jerry, on the right, (who filmed the entire speech), Dave (my neighbor from a long time ago) and Bill (the organizer of my event!). I spoke about my experiences in New York at Ground Zero after 9/11 and encouraged and challenged the students to think not just about themselves but to also think about helping others, The message came through loud and clear and I had many students stop by after to talk to me and ask questions. Several purchased my book, First Aid For Heroes.

My high-school friend, Monica, suggested that I have a book signing at a local bookstore in Hudson, Ohio. After many phone calls we finally got it to happen and that very evening after my speaking engagement I held a book signing at The Learned Owl. My friends descended on the store and some of them titled themselves the "flashmob."

There was laughter and a strong sense of support. I will never forget my "cheerleaders" being there for me and making me feel as if I were a celebrity!

Flight 93

Yesterday as I drove back to Northern Virginia from a speaking and book signing event in my home town of Cuyahoga Falls, Ohio, I decided to take a detour. Actually I decided to take that detour several days before, September 11th to be exact. I decided that I could not drive past this area without stopping, I was drawn to it as if it was out of my control, as if auto-pilot had taken hold of my car.


The area around Shanksville, Pennsylvania is filled with rolling hills, farms, roadside stands, just the inordinate beauty of our back country USA. Signs were posted everywhere guiding me to the Flight 93 Memorial. Pride for our country was everywhere with the flying of the American flags, to signs sharing our country's sentiment "We will never forget."

I made the turn to the Memorial and kept driving and driving down a curvy newly made road. I knew I was in the right location, I just didn't know how far I had to drive. I kept going and going, but the more I drove, the more I understood. This was an area far removed from main roads (until ten years ago). The only way to observe the site, was to build a better road.


I exited my car, after pulling into a gravel parking lot and walked towards three signs. There were a few people there. I thought that was a bit odd, where was everyone. Didn't people come to pay their respects? I later found out that this was an entrance to view the area from above the crash site, this was the area the plane flew over prior to crashing. I continued on my journey in my car to the memorial area, just a short 1/2 mile or so to the area below.

Where was the site? I couldn't see anything that would identify it. Then I heard why. A few years ago they filled in the crash site and planted wild flowers. And then I saw it.. just peaceful flowers with the large evergreen trees framing the top of the area. They have moved a boulder to the exact area where the crash occured and family (I assume) left flowers and flags surrounding it. We were not allowed to walk on those hallowed grounds, but observe from a distance. I wish I had a better camera with me, as I only have pictures from my cell phone, but it can give you the sense of what it was like.

What I felt was peace and a palpable feeling of calmness which seemed to fill the entire area. There was a slight breeze with the smell of fresh wildflowers permeating the air. I felt sadness, how could one not? But mostly I felt an inner peace. This was a place to go and reflect, to go and remember what courage took place on Flight 93, September 11, 2001. The courage of the flight 93 heroes and their fight with the terrorists to protect our country.

I continued my walk, in the direction of the flight path and came to the names carved in marble. The designer built the wall so as you looked down the length of it you would be observing the flight path. The hill to the right was the hill that the plane flew over. The opposite end is where the crash site is located. The white marble wall was magnificent. I had to look for Todd Beamer's name. His last audible words were "Are you guys ready? Let's roll". You can find out more information about this hero by checking out his Wikipedia page Todd Beamer.

This past Monday, September 12th, after I spoke to the entire student body of Cuyahoga Falls High School about my 9/11 experiences and my book , a group of students took a few minutes to talk to us about the Flight 93 fund. This group is encouraging students to just donate 93 cents. Eventually, it will make a difference. Check out the article that was written about them: Falls High students laud courage of Flight 93 with donations


In closing, I will add several more pictures that I took that day outside of Shanksville, Pennsylvania.

What is a Hero?

I wrote this while working in New York at Ground Zero after September 11, 2001


What is a Hero?

This is a question that has been going through my mind ever since I arrived here in New York. My friends email me and say ‘You are my hero’. I read it and laugh… I am no hero. I am a Red Cross Disaster Relief Nurse that is taking care of people, sometimes just Band-Aids, sometimes just cold medicine, sometimes just talking. It is a very small part in a much larger picture. It is insignificant. My real heroes are those that have died such a terrible death, the ones trapped inside the World Trade Towers, the victims in the airplanes that were hijacked, the victims at the Pentagon, the families, trying to cope with such a loss, the city of New York and their wonderful people that are trying to cope, the city of Washington DC and their wonderful people that are trying to cope, those that are working after their duty hours at their regular jobs to come to volunteer, those firemen, iron and steel workers, policemen, OSHA, FEMA, National Guard, truck drivers, crane operators, bulldozer operators, and the list goes on and on. They are exhausted, they are sick, they are overwhelmed, but yet they are out there day in and day out trying to make sense of such a terrible tragedy.

Every day working is different and I find new heroes creeping into my life. We are all part of a circle… without one of us, the circle doesn’t seem to be complete. My part may feel insignificant, but when it is put together with all of the parts, it becomes very significant. My fellow Red Cross workers, all doing different jobs to create that bond.

I meet several heroes every day. The other day, a Red Cross volunteer touched my heart. He was working in the Trade Towers on the 54th floor when the planes hit. He got out of the building in time and now does not want to leave the area. He feels he needs to help in any way he can. He calls it his ‘penance’. He serves food in the kitchen for the workers.

The smell is back

I have been frantically gathering information for my upcoming speaking engagement next Monday in Ohio. I pulled out three large white boxes and a large blue plastic bin, the one that housed my Red Cross Disaster Services aprons, my respirator, and my hard hats from 9/11. As soon as the lid was cracked open, the pungent odor was released into the air and slammed into my nostrils. I paused, Really? Could I really still be smelling the smells of 9/11? I kept thinking it was impossible. This has to be all in my head, how could this smell still be recalled so quickly? Is it because of the ten year anniversary and all of the media blitz? I don't know, but it has permeated my olfactory senses today and has no desire to go back in the bin.

Identity: Am I Defined by my Spouse’s Illnesses?

We go through life trying to define who we are, constantly tweaking and perfecting to make ourselves a better person. But what happens when those parameters become altered? What happens when life throws you that curve ball, when the unthinkable situation knocks on the door?

I had a leisurely breakfast today with a friend and as usual the subjects we discussed just floated freely. There is never a lull in our conversation! So many times we have gotten together to catch up and have surprised ourselves on how many twists and turns the conversations will take. Today’s was no different but it kept focusing on Identity, better yet, how does one keep their identity when they are a caregiver? This became our major topic and one we discussed for two plus hours. Nothing was solved in those two hours but it gave me many thoughts to ponder.

I have strived to become someone that I am proud of and someone that I hope is growing and changing daily. When my husband’s diagnosis came in, life just seemed to stop, nothing seemed real and the future seemed so bleak. It all was so unfair and the thought of moving on seemed unbearable and unthinkable. We were both lost in our grief. How does one move on when their whole world is collapsing around them? My husband, my friend received a terrible diagnosis and I found that it seemed easier for me to totally focus on him and only him, just letting the rest of life pass me by. Days, weeks and months transpired and eventually we both began to cope, some days being more difficult than others, for sure. Thankfully life is resilient and the possibility for growth began to reappear. Believe me, this is not an easy process.

Now I wonder, how do I hold on to my own identity? Who makes me the person that I am and want to be? No one can do it for me; I have to be the one to fight for MY own survival. I have to be ready to accept that and be willing to move on and stay focused. I will survive this and I will come out a stronger person because of it. I didn’t ask for this to happen but I need to learn from this situation and grow.

“Significant changes in life can push you to begin to lose your identity. Loneliness, disconnectedness, depression, and a loss of self may begin to work on your psyche. During this time it is imperative for you to grasp at opportunities to maintain your identity and ward off the isolation that you can feel when life has completely changed,” states Corine Fiore in her blog: http://parentingsquad.com/how-to-maintain-your-identity-when-everything-has-changed. Her blog, on parenting, surely applies to any type of change we may be dealing with.

After a few months of floundering and feeling sorry for myself I realized I just couldn’t keep that up. I wasn’t being fair to my husband, my family, my friends and it surely I wasn’t being fair to me! I searched for a support group, one that would understand my situation.

Where is the happy medium in keeping me as a functioning supportive individual? What must I do to not lose myself completely in his illnesses? This fight to maintain ME must be established now, before I get lost in the overwhelmingness of it all.

Many people I know seem to take on their loved one’s illness and have it encompass their own life so completely. It is as if their lives have been forced to change with the current diagnosis. Am I now defined by the illness of my spouse? “Oh that’s Jane; her husband has Parkinson’s and Lymphoma.” Has this now become my existence? Is it time that I put my life on hold and start learning everything I can about these senseless diseases? Is it time for me to start marching for the causes? Is it time for me to attend every meeting and every support group? Is it time for me to give up on me? It may sound heartless; but I am just trying to figure it out this new role. Does my identity have to change because of his illnesses? It might be easy for me to say this because at this moment Gary is not incapacitated with his illnesses. He continues to work full time and maintain a productive life. The question is; will I have to change who I am when the Parkinson’s gets worse or the cancer returns?

Finding a good support group and or a good friend that is going through similar circumstances can really help in maintaining one's focus. Working, whether it is at home or in an office, just doing something for me; church, book clubs, therapists, exercise…the list could go on and on. There are many avenues that I can draw on to ensure I stay focused on keeping my identity and staying strong through difficult times.

I will continue to be supportive and choosing to be knowledgeable of all that comes our way. I am willingly standing by his side for his medical appointments and treatments. I am cherishing and celebrating his victories and will cry with him with his relapses occur. I am his cheerleader, his friend and his confidant. I chose to do for him and for myself, and not because it has become my role.

I choose to look towards the future with my eyes wide open knowing that life could change in a moment's notice. I choose to be prepared and in doing so, know that I am an individual who needs have a life of quality and a life that may be with or without my spouse. In keeping my identity I must maintain a productive life. The question is; will I have to change who I am when the Parkinson’s gets worse or the cancer returns, or will I have established a plan that will work on seeing me through those difficult times?

To sleep or not to sleep

Damn Parkinson's Disease!!!!! I HATE it, I hate every single thing about it! It is so insidious and tries to reel it's ugly head to put a distance between Gary and me. It's not going to work, but it surely wants to try!

The newest one, though really not so new at all, as it has been going on for years, is MY lack of sleep. Now you may ask, why would Parkinson's, that my husband has, have anything to do with that, my lack of sleep? For those of you who are dealing with Parkinson's issues, this is something many of you know all too well. We all know it, but no one wants to talk about it. So here goes.

REM sleep disorder. It sounds fairly benign, but unfortunately it is not. Here is what Pubmed states:

Abstract

"Rapid eye movement (REM) sleep behavior disorder (RBD) is a parasomnia manifested by vivid, often frightening dreams associated with simple or complex motor behavior during REM sleep. Patients appear to "act out their dreams," in which the exhibited behaviors mirror the content of the dreams."

I have been woken up to many things, mostly his yelling at someone such as "Stop that!!!!! No, don't do that!!" But sometimes he starts fighting his battles, physically, and I have received an occasional blow. He has since learned to turn his back to me while sleeping so his fists would hit air instead of flesh. That has helped significantly. Whew! But the verbal yelling is getting worse,so much that I have been woken up several times a night. My response is to scream at him to stop so I can get to sleep. Bad response for both of us because he is now awake and so am I. He could sleep right through his verbal nightmares, but I could not, so I would wake him to stop and then we would both be awake.

What to do? Temporarily, starting last week, I moved to another room. This I hope is temporary as the goal is for him to have this discussion with his doctor about medications to help with this. There is one medication that is effective 90% of the time. Hopefully he can try it and it won't have side effects from all the many other medications that he is taking.

We have been married almost 34 years and we are both very sad about this. He feels so guilty, but I know it is out of his control. I do not blame him at all for this happening. It is just one of those many issues that those with Parkinson's, and their loved ones, have to face.

First Aid for Heroes- sharing

As you all know, I am in the process of writing a book. It is close to completion. I would like to share with you a very small section of one of my chapters on seeing Ground Zero for the first time.

The chapter title is "First Impressions"

I turned the corner and halted my step at the Church Street intersection. I stared incredulously at the confusion directly in front of me, my mouth dropped. I tried to focus my eyes, grasp at reality as to what lay before me, such devastation. There was an inordinate amount of debris, piles of it! Now it became clear to me why Jean told me that Ground Zero was called "The pile". These were enormous piles, slabs of concrete, holding no definition as to what they originally were. Some sections of the buildings were still partially standing, while others were completely unrecognizable. There, straight ahead and to my right, stood what was left of a parking garage, with several cars still inside, abandoned forever, I assumed. The majority of the vehicles were demolished upon recognition. Oh my God, this is not like what I saw on TV, this is worse than anything I could ever imagine! Little did I know what I was seeing was not the main devastation of the two trade towers but of smaller buildings that had collapsed from its wake. Tears began to well up.

Then it hit me, an overpowering intense stench. What in the world was it? How does one describe that burning raw pungent mixture? I really didn’t want to know what this horrific smell was, as my mind started to wonder as to all the many possibilities of what could be mixed in with it. I immediately placed my hand over my nostrils to help clear that foreboding odor out of my head. I started shaking my head, this can’t be real, this must be some sort of dream. No this cannot be a dream, who in their right mind would dream something as dreadful as this? This is truly a nightmare! That initial view and smell has been ingrained in my head even to this day. I’m afraid it is something I will never ever be able to eliminate from the depths of my soul.

I questioned myself for the umpteenth time, what the heck am I doing here? I didn’t want to take it all in; I didn’t want to smell that acrid odor. I shuddered and took a tentative breath telling myself to step away from all of the chaos. The initial thought was to run as far as I could away from the devastation. But I knew deep down that running back to the safety and security of my hotel would not be the right plan. I had to be strong and prove to myself that this could be done; I could work at Ground Zero and even make a difference. I needed to keep moving, but in the direction of Ground Zero. I kept repeating to myself,Just put one foot in front of the other Jane. It was time to begin my volunteer experience. Hurry, I thought. Don’t look at it; just keep your eyes focused on what is straight ahead! Look for that flag!

The red, white and blue of our country’s flag stood off in the distance. I was mesmerized by it's beauty. These were the only colors that I had noticed since leaving the subway. All was a blanket of gray except for this beautiful American Flag. It was shrouding my entire building! Now I understand what Jean was telling me, this has to be it! I found myself almost racing towards it, focusing on it alone. I was breathing heavily, but feeling so determined not to slow down, not to look back. Nothing was going to stop me, nothing! There is a purpose for why you are here, I thought, and that purpose and strength would see me through this country’s difficult time.

I reached for the door and stepped inside.