The Human Body is a Frail Thing but the Human Spirit is Relentless
Scott Stricklin August 2004
NEVER GIVE UP HOPE AND NEVER SAY DIE
An Early Perspective late 2005
I am a Non Hodgkin’s lymphoma survivor but I have never
defined myself by my lymphoma. I have always seen my lymphoma as an invader that
didn't belong, an interloper that I was determined to forever annihilate. When I
was sick told very few about it. Not because I was ashamed of it but because I
didn’t want people to have pity on me or feel sorry for me. I believed in my
inner strength to survive. That inner strength was and continues to be enough.
After I reached remission there was the families response to what I had endured. I
had survived a serious and major surgery and I had
achieved complete remission from cancer. The family thought that I should be
thrilled… Right! According to my family I should just be happy to be alive. I
was that, but
they didn’t really "get it". To me something was still a miss, life was just "not
quite right" anymore. There was a terror and the memories of what I had lived
through and that always seemed to be with me. I was beginning to wonder if that feeling would ever
change? I couldn't find a way to accept what had happened to the life that
had once known.
This went on for several months and then one morning I woke up with a different
perspective. I don't know how it happened, but I finally
realized that while I had had lymphoma, nothing else was really that much
different then before I was diagnosed. While there had been physical and
emotional changes in the way that I looked at things overall -on the grand scheme of things- nothing that
really mattered to me had really changed. The people that I loved before my
illness still loved me. I still had my job-more fun than work. And I still had my friends. Other
than the emotional and physical hell that I had endured life was pretty much the
same. Normal was still there I just had to look a bit harder to find it.
Before I was diagnosed with lymphoma I had casually thought about the fact that I was at some point going to die. I had survived lymphoma and nearly died in surgery and I now really understood deaths finality. Before my diagnosis dying was all just a hypothetical thing that was going to happen to me sometime and somewhere. After being diagnosed with cancer, having chemo and surgery I had a different understanding. That understanding was that at some point reaching the end of life was the only true reality. However, dealing with that reality in a sane manner is the real trick.
A Later Perspective late 2006
When I was in chemo I though that when I heard the words "complete remission"
that would be the end of it and all would be right with the world. I have heard
those words and all was not right. Being a Cancer Survivor is a very complex
proposition. There are the family and friends that think that because you have
survived you should just be happy to be alive. They will never understand what
you have been through. They will never get that your life will never be the
same. All the love that they have for you won’t help them understand. They mean
well so accept their love and don’t expect anything more. Love them back and
find your own understanding within yourself. You will feel anger you will feel
violated and you will worry about relapse that is all a part of being a
survivor. You can never go back to what you had before your diagnosis so you must move
forward. Your life and your future is what you make it.
I have been doing some talk therapy with a therapist that deals with cancer
survivors. It has been helpful to talk about the last two and a half years.
Through our discussions about my lymphoma experience I now look at life like a
road trip. It’s a road trip where I can go anywhere and do anything. I can worry
I can not worry I can be up or I can be down all things are possible and all
things are my decision. When you’re on a road trip like that you should take
advantage and enjoy the great scenery. Enjoy the scenery and don’t worry about
the bridge across the river 2500 miles down the road. Now that bridge 2500 miles
down the road may be out but there is no point in worrying about it being out
until I get there .I will worry about getting across that bridge when I get to
it. Likewise, during my current road trip with life after NHL I may find myself
stressed about scans or worrying about a relapse. As of today those things
haven’t happened and so they are like the bridge way down the road. Should I
have a bad scan and relapse then I will cross that bridge when I have to. By
looking at my concerns this way I am finding a better acceptance of my situation
and that is helping me to live a better life.
I have a family, some friends, a job and a pretty good
life. I do the most I can to focus on that and be involved the experiences of
daily living. However, that not to say that I still don't get anise around scan
time or before an Oncologist visit. At the same time I know that what ever bad health
crap may be coming it will take care of itself. Today I understand that in the
end, I have no control over the finality of my life. Therefore, I should do the
most with what I have today.
In life, bad things happen to all of us. Sometime there isn’t any reason for it
and why it happened doesn’t make sense. I could spend the rest of my life being
angry about having had NHL and asking "why me”? I could do that but where would
that really get me? I could spend every minute of every day worrying about bad
scans and relapse but my worry won’t stop a relapse from happening. The cold
hard truth is that we are all going to die from something. I now think that
dealing with that reality is what is at the root of some of the emotional stuff
that many dealing with NHL feel.
November 2006
So I will be a 4 year cancer survivor this coming June. I
have been in remission now for 3 years 3 months. I am feeling good ,but the
last 4 years has indeed been a long and winding road. There was a time when
all I could do was worry, think and be consumed with fear about relapsing.
That was before I took some time and finally figured out that worry about
relapse is a really big waste of time. Worry won't stop a relapse or change a
thing having to do with my life's final outcome. The truth is that worrying
about what is coming in the months ahead is useless. It does nothing to lift
you up and it cheats you today out of enjoying your remission time. Remission
should be a grateful time that filled with joy. Worry is a thief that steals
that joyful time in the here and now. Worry about what ones health will be
down the road is futile. I am healthy today and that is enough.
So that brings me to a new beginning. A place where I am conscious of what I
have been through and what may still be coming somewhere down the road. I am
conscious of what is at stake-my life-,but I am no longer obsessed and
consumed with trying to or wanting to control the outcome. I have finally
arrived at a place where I have learned keep myself out of it and just let it
roll. I am grateful for today and with that comes the sense that the smallest
thing that I do is somehow a happy thing. It took a lot of therapy,
introspection and prayer to see that but I think that the time that I spent
was worth it. Beyond worry there is a place that is peaceful and glad. It is a
place that I think can only be reached through acceptance. Complete acceptance
of the fact that I have an incurable disease-SLL-. Accepting and understanding
that the body is a frail thing but the human Spirit is relentless. Accepting
and coming to terms with the fact that in the end there is no hope for me or
anybody else to survive forever. This has brought me a grounded sense that I
think can only come with the acceptance of ones finality. I now think that
unless one can make peace with the finality of it all then one will be trapped
in an endless cycle of fear and anxiety. Letting go of oneself and ones
mortality is I think a big step. Being diagnosed with NHL puts one in true
touch with the fact that life does in fact have an end to it. We always knew
it in our head that there was an end somewhere someday. With our diagnosis, we
are confronted with the thought that my life could really end. Accepting that
should not be not frightening but freeing. Like the last chapter in a great
novel we should enjoy every thing that we do.
What I am saying here does not mean that if you are relapsed you cant fight
for remission, or if you are sick cant hope and fight for better days. This
only means that I have made peace with my mortality and I have come to accept
the fact that there is a final outcome that I will in the end lose. By
accepting that I am free to live today with out regret, fear and anxiety.
There is really nothing in between me and what is life.
Hope you are well ...let it roll...down the road
June 2009 A Five Years Survivors Point of View
June is my anniversary as a 5-year survivor. From the beginning I have always seen my lymphoma as an invader that didn't belong. It was something that I was determined to survive, or at least give the fight of my life because I will never say die. Early in my diagnosis I decided some things. I decided that I was not going to se myself as a victim. I decided that I was not living with cancer it was living with me. I understood that I had cancer but cancer did not have me. Besides, I had people that needed me and so death was not an option. With that in mind I faced the enemy. I grew up in the 50’s and cancer was a word that instantly spelled fear since it was a death sentence. In June of 2004, I didn’t know if I would still be here in five–years. Back then there was a definite uncertainty about many things. That five-years have passed I am still here and so is the uncertainty about what lies ahead. The difference between then and now is how I have come to see uncertainty. Today I don’t fear this disease or anything that comes with it anymore. On the way from then to now I figured out one important thing. That thing was that living in fear of what could be would only rob me of the blessed time that I have left on this earth. Likewise worry doesn’t help either and only takes away the happiness that I have in the here and now. Happiness that I can spent with my family and friends. Therefore, I have chosen today over fear and worry. I have chosen to live and enjoy what I have today. Our lives are like a road trip, and like a road trip eventually it must end. It may not always be a smooth road trip but every minute has value. And because it has value until it is over I have chosen to enjoy whatever the road trip brings my way.
Keeping a proper perspective of my lymphoma is important too. Every day I take a minute and remember that, “The human body is a frail thing but the Human Spirit is relentless.” That thought came to me very early on in my fight. It has been the light to help me find my way for the last five-years. The Human Spirit is relentless and there is nothing that it can’t do. Finally, I have accepted that death is coming someday. I believe that dying is not a good or a bad thing. It is just the end of what will have been a great journey that I have taken. I know there are many that may read this will not really understand or accept what I am saying. For me it is the acceptance of death that helps me keep everything in perspective and live in the moment and enjoy today. I have died once already and I do not fear death.
To all of you that have recently been diagnosed or are not doing so well. To all of you are afraid of what lies ahead I can only say this. When you feel uncertain when you feel fear take a breath and remember that you have today and that is a gift. Tomorrow is another day a day that will take care of itself. Deal with tomorrow -tomorrow.
Be as happy as you can and don’t expect anything else and you will be free.