With a Little Help from my Friends


As a continuation from my “Helpless but not Hopeless” post, yesterday I realized that I need to be able to ask for HELP more than I do and that I do have people around who can help me.

I met a good friend (Ms. A) for lunch yesterday. We have known each other about 15 years, have talked through marriage problems, divorce issues, dating, adoption, death and have been able to help each other through these things. But when most of these life events happened, I was healthy and able to assist Ms. A in just as many ways as she was able to assist me. When I was in the capacity to help her, it was easier for me to ask for help because I felt that I could reciprocate the gesture when Ms. A needed it. This extends to all my friends, as I’m realizing.

It was never easy for me to ask for help, as I was always a self confident, self motivated woman with a good head on her shoulders and could basically get myself out of any situation with little assistance. Nowadays, that is not the case. I need help, more than I’d like to admit and do have problems asking for it.

I was telling Ms. A about how last week I felt anxious and helpless when my car didn’t start and that I am extremely vulnerable in situations that I don’t have control over. She was extremely reassuring and told me that my behavior was normal for someone living with a chronic condition as I am. Healthy people get anxious and that I shouldn’t be upset with myself for feeling like that. Ms. A also reassured me that even though we don’t speak as often as we used to when we saw each other regularly (as we used to work together), that she is only a phone call away and that all I need to do is call and she will be here helping me in any way I need. I know she really meant that and didn’t just say it to make me feel better.

We talked for 2 hours about normal things that girlfriends would chat about and it also reminded me that I need to reach out to my other girlfriends more because even though I wasn’t feeling that good physically yesterday, when I said goodbye to Ms. A, mentally I felt better.

I guess deep down, I wish people would offer their help and assistance instead of me having to ask for it. I know I would, as I always have, but as I’m seeing most people aren’t like that. Truthfully, everyone has busy lives. Most of my friends are high powered career women who work long hours in stressful jobs that often take them out of town on business trips. They have 3 or 4 children in various life stages and they aren’t sitting and thinking about ways to help me. But that doesn’t mean they wouldn’t help me if I asked them.

Lets Get Physical


About a month ago, I started using an activity tracker called a FitBit to try and help me increase my movements, so that all my muscles don’t begin to atrophy. I have been ill for 4 years and my body is starting to experience problems because of the lack of movement.

I have approached this project like a science project, but unfortunately I have not been able to make significant progress in increasing my energy or movements. While I have been able to prevent crashes (which is a major accomplishment in itself), I have not been able to do much more with my body than prior to the purchase of the FitBit.

So this afternoon, I am going to begin Physical Therapy (PT) again, and see if I can get some help in limbering up my muscles and easing the pain. I fear PT as it is a big strain on my body and sometimes as a result of it, I do crash, but I am hopeful that today that won’t happen. I am looking forward to the heat treatments, the neck stretches and the electronic stimulation machine.

Physical therapy brings with it a whole slew of emotional stuff too. Going to the office, most of the people I see have specific injuries that they are treating: broken arm, torn ligament, knee replacement. Their therapies are targeted to a specific body part, that will improve after a specific time period, with repeated therapies. Me on the other hand, not so lucky.

I have been going to this therapist, on and off for 3 years now, and really haven’t improved. In fact, everytime I go for an evaluation, my movements are more restricted and limited. All of these things are really opposite of giving me encouragement, but not doing them is much worse.

So today, I will again start PT and hope that I too will improve, just like the other patients in the rooms on either side of me are hoping. I have just as good a chance as they do, right??

Sometimes helpless, but never hopeless

man in yellow flower  field under beautiful sky
This week has proven to be a challenging one for me because of how limited I am with my physical and mental capabilities. My system becomes overwhelmed very easily, whether it’s from sound, light or activity, they all seem to cause a shutdown of my brain and my body.

Aside from managing a chronic condition, life does go on and there are everyday mundane tasks that need to be accomplished. This week I had an issue with my cable service provider (Time Warner). I am disgusted by their lack of understanding for dealing with a person with a disability. After having a very frustrating conversation with the representative, which left me weakened to begin with, I had to go take care of a quick errand.

I went to my car, which thankfully was parked right in front of my apartment building, and the car wouldn’t start. I started to panic, which only exaggerated my symptoms and sat paralyzed for a few moments, running through every possible scenario in my head.

I finally gathered my thoughts and calmed down and called my insurance company for a jump. I waited an hour, but rested during this time, and then had to drive the car to a nearby mechanic. The car had to stay overnight and when I was driven home and was alone in my apartment, I became very anxious and felt stranded.

Now what a ridiculous thing for me to feel. I live in a very populated area, in a borough of NYC, in an apartment building filled with people, yet I was still anxious. What if I needed something, how would I be able to get it? Even though there is a supermarket and drug store one block away from where I live, the stores may as well be a mile away, as I can’t walk to them. What if my 85 year old mother, that lives around the corner from me, got ill and I wouldn’t be able to walk around the block to help her? I could come up with a lot of what if’s and believe me I did.

These feelings of helplessness overwhelmed me and I realized how silly they all were and that the likelihood of me needing to do anything but rest for the next 24 hours was remote, but I still felt helpless.

Of course I survived the night without any problems. My mom was alright and I had enough food in my apartment and I didn’t need anything from the drugstore, but I did realize how vulnerable I am to situations that I don’t have control over.

Healthy people don’t realize how lucky they are or how in control they are of so many situations, that they take forgranted. Not having a car for a day, is a big inconvenience, but it doesn’t create fear or helplessness. If I was healthy, none of the images floating through my mind would have occurred because I would be able to depend upon my body.

Just because I felt helpless that day, I was never and will never be hopeless. I still have hope that one day my body will be strong enough so that I can rely on it in any and all situations that I face.

Karma… Do good and good will come to you.


Earlier this week I was speaking with a very good friend of mine, probably my best friend, someone who knows my deepest darkest secrets and I his. We can talk about anything and everything and do. He brought up the subject of Steve Jobs and Apple and how he met someone who had a very high level position in Apple. This ex-employee said that all the rumors about Steve Jobs was true. He was a demanding, tough, nasty son of a bitch, yet his employees were extremely loyal to him because he made them all a lot of money.

My friend (Mr. X) said, “Makes you wonder if his painful death was Karma paying him back”. I quickly replied that I would hate to think that his Cancer was Karma, because if that was Karma, what did I do to deserve the 4 years of suffering I’ve been dealing with.

I have always conducted my life on a moral high ground. I always treat people with respect and kindness and always put myself in their situation. I was brought up by two parents who followed the letter of the law and never strayed from doing the right thing, even if it was to their detriment.

So it got me thinking, why am I suffering and is Karma paying me back for something I am unaware happened in my past?

I read alittle more about Steve Jobs and that he believed in Zen Buddhism, but in an interview when he was asked about whether he believed in an afterlife, he said 50-50. He wanted to believe that accumulated wisdom didn’t just die with a person, but somehow endured.

I looked up the definition of Karma and it stated that Karma is the sum of a person’s actions in this and previous states of existence. A human being is a subject with a consciousness and everthing is saved and this consciousness works as a spirit and when the spirit meets death, it separates from the body and then is reborn as another life.

The Buddha taught that one’s present condition, whether of happiness or suffering, is the result of the accumulated force of all past actions or Karma. So was my spirit reborn from someone who was cruel and hurtful and is my suffering the result of that spirit? If this is so, does that mean that I will never experience joy or happiness and that all my good deeds will help the person that my spirit is reborn into.

I would hate to think that I can’t reverse actions and do good in this life so that I can appreciate the goodness of my own actions. I would like to think that every action I perform has some effect now and in the future and that Karma is like “paying it forward”, so that you can do an act of kindness to someone else and then somebody one day in this present life will be kind to you.

I have never thought much about the afterlife until my dad passed away alittle over a year ago. When I go visit his grave, I know his spirit isn’t there and I know it’s just the shell of his body, so where is his spirit. If his spirit was reborn, I know he is now in a being that is kind, gentle and loving because that’s how he was every day of his life in this world where I knew him.


In loving memory…..


Today is a very tough day for our nation, but especially tough for us New Yorkers who personally experienced the tragic events of 9/11/01. I was one of these New Yorkers. I woke up that beautiful morning 12 years ago and headed to my job, a block from the WTC towers. Unfortunately I never made it up to my office as the first plane struck prior to me exiting the subway.

I remember the details of that morning, as if it were yesterday, and I have a feeling it will always be like that. The subway line I was on, stopped at Brooklyn Bridge and went no farther. All passengers where thrown off the train with no explanation. I walked up the subway steps and looked up in the sky and was in direct view of the WTC tower that had already been hit. All I could see was some smoke around the tower and thought to myself how strange that was to have such billowing smoke so high in the sky.

Unaware of what had happened, I continued to make my way south to my office location, but the city felt weird, very weird. Pieces of paper were flying like confetti and there was alot of chatter and groups of people gathering on corners talking with each other and looking upwards to the towers. I still had no idea and walked a few more blocks, until I heard the loudest explosion and almost got trampeled to death. People were running wildly to take cover and I was swept up in this stampede and was literally pushed to safety by the crowds. We stood between two office buildings on Liberty Street, waiting for things to settle down, yet none of us knew what was occurring.

Once things did quiet down, we slowly emerged and could see dust, furniture, papers, office equipment flying through the air and as I looked directly up at the sky, I saw something that will never leave my mind… I saw people jumping from the WTC and still couldn’t understand what was going on. I had about 5 blocks to go before I arrived at my office and I continued on because I was desperately looking to find someone I knew who could explain these events to me.

I finally arrived at my office and people were running out of the building. I was not allowed upstairs and finally an elevator filled with people I worked with emptied into to lobby and they told me we are under attack. Two planes hit the WTC and a third is likely headed for Washington, DC. We were all advised to leave the area quickly and get to our home destination. But with all the subways closed down, this would not be easy for most people. I luckily lived in NYC at the time and was strong and healthy enough to walk the 6 miles home.

I started the walk uptown, with people I worked with and the crowds got bigger as we walked further north. I was scared, as were so many other people, but unlike many other people I did not remain downtown and managed to get home just as the towers began to fall. Two friends came over and we went to a local restaurant and sat there all day, with hundreds of other people, watching in disbelief as the events of the day unfolded.

Every New Yorker has a story about that morning and the months that followed, as life in NY did not get back to normal for a very, very long time. National Guards; armoured tanks; trains with bomb sniffing dogs; checkpoint locations under bridges for buses with possible bombs; air filled with a stench that was death; smoke rising from the ashes of the WTC; and a dark, dark dust that had settled over the city.

I did not lose a loved one that day, but I do know people who did. I also know people who survived working in the towers and others who experienced things that changed their lives forever.

So today, I will not think about my pain or my illness or my suffering, I will be thinking of all those people who vanished in an instant and did not have a chance to finish their lives or to say good bye to their loved ones. You are forever in our hearts and minds.

Happy (and Pain Free) New Year


For some people, this week is the beginning of a New Year, as Rosh Hashanah is being celebrated around the world. Tradition teaches us that during the High Holy Days every person’s fate will be decided for the next year and whether one lives or dies or suffers is being determined. People are suppossed to make amends and fix any wrong doings, so as to enter the New Year with a clean slate.

I started wondering if that also includes oneself. Can we make amends with ourselves and accept our shortcomings and imperfections and move forward in this next year loving ourselves more? When one suffers with a chronic illness, we are often harder and more critical on ourselves than we would be on other people. I find myself getting frustrated and angry when I can’t remember something or fix something that I know I was able to remember or fix in the past. When my Brain Fog sets in, it is impossible for me to do the simplist of tasks, even add or subtract 2 numbers from each other. Yet, if a friend or loved one had a problem, I would just help them and not think twice, but I beat myself down when I forget something I should know.

I also wonder why I cringed everytime someone has wished me a Happy and HEALTHY New Year over these past few days. I get sad when I hear this phrase because I wonder how can I have a healthy year when I am not healthy at this moment. Maybe I would feel better if someone said have a HEALTHIER New Year. I started thinking why this bothered me so much and it brought back a painful memory from years ago, when my dad was quite sick and was in a Nursing Home. My mom and I went to visit him on his birthday and when we were leaving, she wished him a Happy and Healthy Birthday and he just broke down and started sobbing. As I’m thinking about this, I have tears in my eyes. I remember saying to her, “How can you wish him a healthy birthday when he is so sick” and of course she didn’t mean to hurt him with her words. My mom loved my dad more than life itself. Yet these words hurt him, as they hurt me over these past few days.

So with this New Year, I am also going to try and be more accepting of what people say, when I know their intent is well meaning. I do take offense sometimes to words my friends say because I think they are very uncaring but really, they just don’t have the same perspective as I do.

During this New Year I am also going to remember that even with a chronic condition we still can lead a good life. There are certain choices that we can make and certain courses of action that we can pursue, that have the ability to infuse our hard life with goodness and life, and there are others choices that can drain life. I am choosing the first option and choosing to be a person who embraces the kind of values, ideals, and choices that will fill my days with life, with positivity, with meaning, with goodness!!

Happy Labor Day


This is a long holiday weekend for those of us living in the United States and people are celebrating the end of summer. When you are living with a chronic condition and unable to work, holidays really don’t have much of a special meaning anymore except for the fact that it’s another day you don’t have to go to a doctor appointment.

Labor Day weekend does have a significance for me, as 3 years ago this weekend I had to go out on disability because I was unable to work any longer. I had gotten my diagnosis months before, but had continued to push myself. I also had a compassionate boss that was allowing me to work at home 4 days a week for a few months, but that compassion came to an end and when my illness started to become a problem for my boss as he was getting questioned about whether or not I was faking.

I had worked for this company for 12 years and worked for my boss for close to 20 years, as we moved to this company together when it was a start up. These people knew me and knew my character, my devotion and my desire to work hard but that didn’t seem to matter for too long once I became ill. I became a problem and companies don’t like problems.

After working at home for several months, I was called into the office to speak with the HR director. I was told that I would no longer be allowed to work at home and they would no longer make consessions for my illness. If I didn’t start coming to the office, they would have to replace my position and I was told to think about it. I immediately responded that there is nothing to think about, it is not possible for me to come to work 5 days a week, as it took everything I had to make it to the office 1 day. The HR woman was surprised that I responded this way. I think the company thought I was faking and they would force my hand, but I wasn’t faking. I was ill, terribly ill and the dedication I had given to this company had been forgotten.

What hurt most was the friendship I had with my boss over the 20 years was also severed. I had been with this man through many life events for the both of us, weddings, divorces, birth of children, anniversaries, deaths and when I became ill, he became distant. Since I have been out of work, he hasn’t called me once. He was a company man and his fear of getting in trouble outweighed his loyalty to me. He isn’t the first boss to sell out his employee, and I’m sure he won’t be the last.

So yes, Labor Day does have a significance for me, but maybe not the same as for most people. I wish for all my fellow sufferers, a Pain Free Day, that would make me happy and make this holiday a special one.