We each have a battle to fight

When I was fighting cancer I had two teenagers fighting their own battles, drugs. I am in the hospital, they are in rehab. As I am in surgery I am worried about them being out on the street using. I had my husband as a support system, but his Mother brought him up to believe that we are inferior if we get sick. He never went to a support group with me, he did go to my first doctor appointment when I found out that I had cancer, but that was the only appointment that he ever attended. I did the entire cancer experience alone. Please don’t allow any family member to do that. I consider myself a very strong woman, but that was a hard thing to do. I took care of my sister every day for three months after her diagnosis of matasis of breast cancer just three years before, up to the day she died, and here I am going through this alone. All my family lived out of state, my Mother was too elderly to come to my aid, my older sister just not there. I learned through this experience that if ANYONE I know is [...] continue the story

A letter from Jonny Imerman

I am a testicular cancer survivor. I was born in Saginaw, Michigan, in 1975. When I was just a baby, my parents divorced, and we moved to a suburb of Detroit called Bloomfield Hills. I attended Cranbrook Kingswood School from kindergarten through high school. After graduation, I moved to Ann Arbor, Michigan, where I earned a bachelor’s degree in psychology from the University of Michigan. After college, I returned to the Detroit area. I worked during the day while earning an MBA from Wayne State University at night.

Suddenly, one Thursday morning in October 2001, my busy world came to a standstill. At 26 years old, I was diagnosed with testicular cancer. I couldn’t believe it, so I went to another doctor for a second opinion. He confirmed that I had cancer. The testicle was the epicenter of the disease. I went right into surgery. My left testicle was removed. Although the surgery went well, my visits to the doctor did not stop there. It soon became clear that the cancer had spread (“metastasized”) from the testicle. The disease was making its way up my body. The form of testicular cancer I had was a “non-seminoma.” That means it was a mixture of many different types of cancer cells, as opposed to a “seminoma” tumor, [...] continue the story

A friend lost

I learned today that I lost a friend. We weren’t close friends… we’ve had drinks together at parties… he was more of my friend’s friend… people thought that we should be friends, and tried to get us to be friends because what we had in common was that we were both law school cancer survivors, and then young lawyers dealing with cancer. I think for this very reason we didn’t actually become friends. Because it seemed like we were supposed to have this connection… but in real life, when you are with your friends, and hanging out… that isn’t necessarily what you want your connection to be. Like so many things, I don’t know if that makes sense.

I think its the same reason why I’m no good at support groups. Why I can’t seem to muster the motivation to go to a cancer summit… talk one on one, or face to face with people. I don’t like this world in my real world.

And yet, even keeping distance between us… I find that I am still hurt, that apparently there was this connection… a silent acknowledgment that someone else had a general idea of what you were dealing with… even if [...] continue the story

The challenges of living with invisible pain or illness

In May of 2001, I got sick with what the doctors thought was an acute viral infection. But I didn’t recover. As the months went by and I didn’t get better, I felt as if I’d entered a parallel universe that I didn’t know existed. One reason this universe is largely invisible is that many people living with chronic pain or illness don’t look any different from those around them. We simply don’t look sick or in pain.

I should qualify that. The people who are with us all the time know that we are suffering. They see those subtle differences in our demeanor when our symptoms intensify. These are our caregivers (called “carers” in many countries) and they inhabit this parallel world with us. At the end of this piece, I’ll talk about the unique challenges they face.

I was surprised to learn how many medical problems are invisible to others, even illnesses that are life-threatening, such as cancer and heart disease. I’m sure that most television viewers who saw Venus Williams—recently diagnosed with Sjögren’s Syndrome— watching from the stands as her sister played in the U.S. Open tennis final, thought, “But she doesn’t look sick.”

What are some of the experiences [...] continue the story

Re-imagining my disease…

I like to make up stories to comfort myself. Today’s pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it’s because she’s battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that’s how she’s able to survive where others wouldn’t. I wish her well!

One of the most important things I have learned over the course of my disease is that there’s no use making excuses. People can’t see my illness, so they don’t understand what I’m going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I’m going through, and preoccupation with managing my symptoms. But that doesn’t change what it looks like from the outside. I could say it’s not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I’m a princess and will ask for the comfortable chair from you. [...] continue the story

After the Honeymoon: Chronic Illness in the Workplace

October is National Disability Employment Awareness Month (NDEAM). Therefore, it seemed like a good time to tell parts of my story relating to being “disabled” with chronic invisible illnesses as a young adult in the workforce. A lot of the patients I hear from faced the challenges of developing these illnesses in their 40’s (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce. At 45, it’s hard enough to give up your job – at 15 (age at diagnosis) it’s really not an option. Hopefully what these patients went through can help me in this challenge.

In my last post, “Once Upon a Time: A Tale of Disclosure”, I discussed my decision to disclose my illnesses to my firm before I was hired full-time. Now, I’d like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation. To be clear, I’m not suggesting all other chronic patients follow in my [...] continue the story

Father and son, doctor and grieving family member

The edges of Cameron’s lips rise undeniably toward the clear blue sky. His legs move methodically. One motionless on the scooter and the other periodically kicking to propel himself forward. He weaves in and out dodging my shadow as I jog beside him.

I struggle to keep pace. My breathing unsteady and labored. My joints aching. And my brain foggy from lack of sleep and replaying the events of the day.

***

The hospital was uncharacteristically quiet. Even for 5am. My eyes fluttered with fatigue as I willed my mind to focus after two nights of countless interruptions. I felt no joy in this early morning excursion.

The room was lit by a small lamp. A woman in her forties sat with a young child curled on her lap. A boy, Cameron’s age. My eyes adjusted to the absence of light.

The middle aged man lying on the bed looked far older then reality. He took deep irregular breaths. Each pause a question. His wife held his hand gingerly. I inhaled the seen cautiously. I couldn’t help but think of my dad. Were his last moments like this?

The woman dabbed her eyes with a tissue. She tried to move slowly to avoid waking up the [...] continue the story

The Vicious Financial Cycle of Chronic Illness

There comes a time in the life of a person with a chronic illness when a vicious cycle begins and the consequences of their temporary or permanent inability to work due to their chronic illness is compounded by their mounting medical bills. They get sick, so they can’t work; but they need to work, to pay for being sick. As the chronic illness becomes more persistent, it becomes increasingly difficult to stay ahead of this cycle. This is when the availability, or unavailability, of money and wealth becomes the sole determining factor of survival and happiness. On second thought, survival is not so much affected because of the mitigating and temporary stop-gaps provided by medical insurance and credit cards. However, living with the obligation to pay for these outstanding staggering and always increasing medical costs represents the “difference” between mere existence and truly living life and thus experiencing even occasional happiness. If you do not have the money and wealth necessary to keep up with this chronic illness cycle, some look to Bankruptcy as a strategy for negating this “difference.” But if the illness is indeed chronic in nature and/or incurable, there will [...] continue the story

Madness in the NFL – The Greg Montgomery Story

A glimpse into Greg Montgomery’s high school, college and NFL career. From his high school dream to play in the NFL to the manifestation of bipolar disorder in 1997 and his current coaching and advocacy work in the mental health arena.

I Had Cancer, A People’s History of the Disease. This is Heatheran’s Story.

Heatheran talks about her experience with ovarian cancer. She is a survivor but becoming one was not easy, this is her story.