Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis. Do you know that that is?

Robin Williams and the Ice Bucket Challenge are the two things that have been trending on my social media this week. I thought about writing separately about these topics, but I don’t know which one to pick first. So I thought I’d write about both.

I do not have a tribute to Robin Williams. I am deeply sadden by his death. When my husband said, “Did you hear about Robin Williams? He’s dead,” on Monday night I hesitated before asking how. When he said it was an apparent suicide I paused before saying, “That’s not surprising.” I had truly been wishing that he would say “heart attack” because, let’s face it, suicide carries with it the stigma of mental illness.

As the details of Mr. Williams’s death and medical condition come to light I am struck by the reality that mental illness is nothing more than a disease of the brain. When I say “nothing more” I do not mean to trivialize the severity of such a disease. Like cancer, it is serious. Apparently Mr. Williams had recently been diagnosed with Parkinson’s disease. One of the symptoms of Parkinson’s is depression. I say symptoms because it is not just a side effect. Think about it: Parkinson’s is a disease of the brain. So is depression. Again, it’s not surprising.

I personally know two people who are being treated for Parkinson’s and depression is very real. There are medications to counteract the depression, but often the depressed person does not even realize they are depressed. It is a vicious cycle and it is important that loved ones and medical professionals recognize it. I’m not a huge fan of big pharma, but in this case, please, take the medication.

Amyotrophic lateral sclerosis is commonly referred to as ALS, and known as Lou Gehrig’s disease. The Ice Bucket Challenge is supposed to “bring awareness” to the disease. It is actually more than that. If you accept the challenge you have to make a small donation to ALS research and dump a bucket of ice water over your head (no thank you). If you refuse the ice bucket you have to donate at least $100. I first learned of this challenge several months ago when my friend Joann posted a video of herself on FaceBook. The challenge has since become the summer past time here in New England.

Apparently donations are up. And this is a good thing. My mother’s best friend died from ALS. My college roommate’s father died from it. Recently a close law school friend passed away from the disease. According to the ALS Association, amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. [Source: www.alsa.org]. Another disease of the brain.

So while the two seem unrelated, both touch on diseases of the brain. And I’m pretty sure Robin Williams would be the first one to dump a bucket of ice on his head while spewing some wit that would make us all laugh.

To make a donation to the ALS Association, click here: Create a world without ALS.

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.

The Reluctant Survivor Redux

Whenever someone new finds my blog or FaceBook page I am always asked, “Why ‘Reluctant Survivor’?” I try to have a short, succinct explanation or I point them to my original post. Recently, I had a conversation with an oncologist who asked that same question. As I tried to briefly describe my “reluctance,” he said, “That’s a normal reaction. I think everyone who has been through a difficult experience feels that way at some point.” So what did I gain from that conversation?

I learned that my reluctance comes from not wanting cancer to define me, but I cannot escape the fact that the experience is a part of what defines who I am today. Without the experience I would not be “me” today.

And who am I today? I am a wife, a daughter, a sister, an aunt, a cousin, and a best friend. I am a lawyer, a writer, a poet, and a survivor. The experiences that I have had over the past 50 years define me as a person. What I choose to do with those experiences are the manifestation of that definition. As a lawyer I work in compliance. As a writer and a poet I share myself with you, my reader. And as a survivor I have become involved in activities that I believe God has placed in front of me for a purpose.

I still question this journey. I wonder what purpose God has for these experiences. What is it that I am to learn? What is God trying to teach me? Like the oncologist, I believe everyone feels this way at some point in their life. And that’s ok.

What I can share today is that I am still reluctant; I sometimes hesitate when there is an opportunity to share my story or knowledge. I am becoming more comfortable with the definition that is “me.” I still want to share my knowledge.

And while my story remains one of healing and hope, it is also a story of grace. Feel free to ask me about it.

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.

35 With 15 Years of Experience

I turned 50 this past month. I told people I was having a milestone birthday. Most guessed that I was turning 40. So, if someone asked, rather than guess, I said I was 35 with 15 years of experience. For me, it was, and is, an age worth celebrating.

I had originally wanted a huge party. You know the kind: held in a ballroom with 150 of my closest friends. It didn’t work out that way, but I sure did have a wonderful birthday. I decided to make it a week-long celebration.

Due to various constraints I ended up having two parties, complete with flowers, balloons (which are still inflated) and cake. My first party was held the weekend before the actual date. It was my local party; held in my backyard and invitations sent to select friends who live in the area. Some were not able to make it due to previous commitments or vacation plans. I think we still had over 20 people there and I’m not sure my deck could have held many more.

What I loved about that party was the guest list. As I looked around at my friends I realized how much each one of them meant to me for very special reasons. Some friends I’ve known since college. One friend, my husband’s college roommate, I’ve known for 30 years. Other friends are more recent. I’ve gotten to know them within the last three years. And some, like one of my college roommates, is a reconnection after many years apart. These were the folks with whom I truly wanted to celebrate my day.

(I also realized that we had a mini college reunion because seven of us had attended the same college).

My second party was the weekend after my birthday. I went to my mother’s for the weekend so that we could celebrate together. I had made reservations at a local restaurant and invited area friends to join us. This party was an amazing collection of family and friends; complete with a reunion with a dear friend that I haven’t seen in over 30 years. When I looked around the table I was struck by the fact that I have known each person for over 30 years. I cannot explain how I felt as I visited with each of these friends and my sister took pictures. A close friend who lives in Pennsylvania commented that “God is so good” after viewing the pictures I had posted.

Yes. That is what I felt. The pure joy of seeing how truly blessed I am.

 

 

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.

A Decade Passed

No, that is not a typo. A decade has passed. Yesterday, if you asked me how it felt to be turning 50 I would have immediately said, “The 40’s sucked.” But upon reflection, the 40’s were not horrible. True, 43 was a dark year, but the whole decade was filled with blessings, joy and reunions. I started 40 with a birthday dinner. Friends that were at that dinner were at my backyard BBQ that was held to celebrate turning 50.

During this decade both my great-nephew and great-niece were born. That was wonderful!

I passed the California Bar Exam and was sworn into the California Bar.

 

 

 

We adopted both Maria and Kiwi during this past decade.

 

 

I reconnected with childhood friends through FaceBook. The decade brought me joyous in-person reunions. And while I reflect on how blessed I am to have these friendships that span a lifetime, I also rejoice in the new friendships. Some that just started yesterday.

We moved into our beautiful new home. I still walk around in awe that it is ours.

In 2011, at the age of 46 I walked in my very first Avon Walk. And last year I walked across the Golden Gate Bridge. Twice.

 

 

 

I have traveled and made some wonderful friends along the way. I had the opportunity to visit London with my mother; something that was on both our bucket lists.

 

I was at my Goddaughter Kate’s high school graduation. I watched her blossom during her freshman year at college and am looking forward to that graduation.

 







My career has taken a turn that resulted in my “dream job.”

So, as I close one decade and embark on the next I realize that the 40’s, in fact, are a remarkable decade passed.



If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.

Faking It

I’m turning 50 this month, which has me reflecting on what it means to be 50. Or more importantly, what it means to feel 50. The truth is, I’ve been faking it all these years.

When I think about 50 I think about my parents. Granted, my parents were in their 40’s when I was a teenager but I wonder how they did it. I mean, adults make it look easy. They are strong, and brave, and know just how everything fits together. They know how to handle their jobs, and their responsibilities, and their daily schedule. They do not have fears or anxiety or question their own purpose. They don’t struggle with issues about themselves or their identities. They have adult friends and they certainly don’t have any problems.

My friend Jodi has a blog and once wrote about being a successful grown up. Chronologically, I’m an adult. But am I a grown up? I appreciate Jodi’s summation of “just because I can doesn’t mean I should.” Last year I heard Jodi speak on this very subject. Being an adult means I get to choose my own bedtime. Being a grown up means I know when to go to bed because I have to get up to go to work tomorrow.

I’ve been thinking about this distinction and finding joy in my choices. And when I choose to do something – like eat ice cream right out of the container – because I can, I tell myself there is no guilt or shame in making that choice. Besides, it’s one less dirty dish to go in the dishwasher. Did my parents ever make silly choices because they could? I bet they did. But as adults with three kids, they kept the routine and the discipline in order to give us a guide and make us feel safe. They chose to be grown up for us, making it look easy. I’m pretty sure it wasn’t, because at 50 I still feel like I’m faking it.

 

Simon and Garfunkel capture the sentiment in their 1967 hit.

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.

It's A God Thing

Lately I’ve been struck by the number of times that my life has been orchestrated in such a way that I am available outside of my routine at just the right moments. Back in November, my calendar was free on Tuesday and Thursday so that I could help Linda with transportation to her radiation treatments. When she started chemotherapy treatments at the end of January we thought her appointments would be on Monday, but the nurse and doctor’s schedule worked better for Thursday. And Thursday is my day off from work. Convenient?

In more recent weeks Linda had a difficult doctor’s appointment scheduled for a Monday. We didn’t know it was “difficult” at the time. However, for some reason my work schedule was different that week and I was not working on Monday. I was able to go with her and Tina to face the truth about her prognosis. This was followed by a Thursday (oh, that’s right, it’s my day off) appointment with the social worker, followed by one of two MRIs to determine the extent of the cancer progression.

And now we get to last week. I had originally put in for a day off on Friday, thinking I would go visit my mother. The need for four new tires on my vehicle changed those plans so I canceled my personal day. Thursday afternoon I received a phone call asking if I could take Linda into Boston for a treatment. It was my supervisor (yes, my boss) who suggested that I might be available since I was supposed to take the day off anyway.

As I shared this latest saga with my mother she laughed and said, “It’s a God thing.”

Yes. Yes, it is.

 

 

 

 

 

 

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.

A Pause In Time

A couple weeks ago I had the opportunity to make an impromptu visit to some lifelong friends. I was driving to Connecticut to visit with my mother and wondered what I would do with my evening alone. So I sent Seth a text asking if he and Kathy would be around later in the day. What started off as me stopping by to see the gardens and meet the rabbits turned into “Why don’t you come inside and have a drink?” (I had a lovely grapefruit flavored sparkling water). That turned into, “Why don’t you stay for dinner?” And only ended when it got late enough into the evening that I needed to leave in order to be back at my mother’s house at a reasonable time.

Seth and I have known each other for over 30 years. I met him and his brother Scott at a Church Youth Group in 1978. I have written about both of them in this blog. Seth was an “older brother” back then, and is still an older brother in my heart. As we sat in the living room catching up on the years in between, I looked at him and was struck by the deep friendship that I saw reflected in his face. I don’t know if I was smiling on the outside, but my soul was certainly smiling on the inside.

I rediscovered the friend I had so long ago. I was delighted to find that he had grown from a teenager with faith to a man of God, with some of the same opinions and insights that I hold. We talked about God’s timing vs. our timing. (We had tried to get together in April). How this time, this unexpected request, turned into a reunion that defied coincidence. I felt at home; I was with family.

At one point we started talking about the past, trying to figure out when exactly it was that we last saw each other. Our lives and families had been intertwined due to Youth Group and my friendship with his brother. As the conversation turned to those days in the late 70’s and early 80’s I was afraid I might be uncomfortable with the memories that surfaced. Instead, I found contentment and a recognition of the deep bond that childhood friendships create. Seth compared that bond to a rubber band that is stretched, but does not break.

For me, those years in between are merely a pause in time.

 

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.