Living with a chronic disease
by Beatrice Larroque
One of the most devastating moments in one’s life is to be diagnosed with a terminal, incurable disease.
Add to that a statistical 3 to 5 year survival. That is simply unbearable!
I have always been at my best during a crisis – after all, my all life has been a string of challenges one after another – and I have a lot of practice fighting back. That’s what I do best: survival. From that day on, my computer became my best friend, day and night, whenever I had a moment, however long or short. I researched the disease, I researched treatment (how shocking to find out there is no approved line of treatment for MF, how is it possible???). I read every medical paper I could find on MF (I probably could get a PhD in hematology by now). I tried to read between the lines and manipulate the statistics – sure someone survived more than 5 years??
Through all this time spent on the computer, I discovered an MPN foundation, a support group, then a couple more, and a whole wealth of information, but no good news in sight. I wrote to several MPN patients who answered immediately, and I was so touched and uplifted by the incredible heartfelt support I received when my life seemed hopeless. But still, no good news in sight. Nevertheless, fighting has always been my way of life, so this was no different!
I met with fellow MPNers and compared notes, I went to New York armed with my huge medical file and discussed it with a few of the specialists present. I went to Scottsdale for the three-day conference and also talked to specialists and other patients. I did research to find the right medications and the ongoing medical trials, I fought so hard over and over with my insurance, read every available medical paper I could find on the subject and forwarded them to my hematologist. I was on my territory. Fight I know how to do!
But before I knew it a few years had passed, and there seemed to be nothing left to do! Despite a very active community of patients and some very dedicated specialists, a cure for MF is still nowhere to be seen, so what to do now?? How can I live with this impeding doom lurking around all day long, every single day? How does one simply live, knowing what we know? This has been one of the most difficult challenges for me.
I remember, at the beginning of my diagnosis, deciding that I would not let the disease define me, but this turned out to be a lot easier said then done. How could I do this when the fatigue is such that it limits my daily activities, when I see other people full of life and energy and do things I used to be able to do but that feel unattainable to me now? I feel like I live in a parallel universe, one that stands alongside the one I used to live in but that has rejected me. For a very long time, I have felt that I was sitting on life’s sidelines waiting for the end. After all, 3 to 5 years, it’s not that long to wait, right? But that’s the thing, I don’t want to wait, I want to fight, but what else can I do, I did everything I could, there is nothing left for me to do!!
My therapist told me once that I had to embrace my disease instead of fighting it. Are you kidding me??? Embrace a disease that is slowly killing me??? How can anyone ask me not to fight?? It sounded totally insane to me, so how can such an intelligent and wonderful therapist ask me to do something that sounded so crazy??
As it turns out, it was the most sensible and one the best advice that was ever given to me about this disease. There is nothing more I can do regarding MF, I have learned all I could about it, I have talked to many specialists, I keep up with the new developments… so what else is there to do? My therapist encouraged me to take classes, to do things I like, to discover new activities (thanks to her I discovered how much I love pottery making), and live life fully one day at a time. I have had to mourn my life as I have known it in order to embrace my new life going forward, my “new normal.” Still, at times, when I hear or read about what other people do, “normal” people, I feel so limited in my abilities that my stomach squeezes and tears creep up to my eyes; but I am getting better at accepting things the way they are.
Even after all these years, my head still refuses to align itself with my body; I still think I am able to do what I used to, but my body differs greatly. If I feel good in the morning, I make all sorts of plans for my day and everything seems so simple and easy, so I get started enthusiastically, that is until… I suddenly run out of gas, and then, all seems out of reach!
What I learned is that the fight is not spending day and night on the internet doing research, it’s not talking to specialists, it’s not learning about new drugs, it’s not even spending hours on the phone fighting with insurance companies. No, that’s the easy part, the part that keeps you busy, the part that allows you not to stop and think about the impending doom, the part that helps you not fall into the abyss of depression.
No, the real fight is a lot more challenging than this. The real fight is about being fully engaged in everyday life, it is about listening to your kids and laugh at their jokes, it is about taking them to school and visiting colleges together, it’s about going to a yoga class, and learn to quiet your mind while meditating, it is about going on vacation and delight in feeling the sun caressing your skin, it is about feeling the cold wet sensuous clay slip through your fingers and struggle to keep it on a potter’s wheel wondering what amazing shape will come out of it, it’s about letting someone hold you tight and not say a word.
The real fight is about doing all of this and not once think about being tired or sick, it’s about all of it and just be, just feel, just live. It’s about all of it, and then do it again the next day, and the next day, and the next. And this is the hardest thing to do, this is the real fight!
I am not ready to think about the end, I still have some good fights left in me.
I am not a religious person even though I was raised in Christian faith. I have no specific idea of what happens after I am gone but I remain open minded. Will I be reincarnated? Will I be floating on a cloud looking down at my loved ones? Will there be nothingness?
I do not know but I don’t worry about that, all I can do is try and be the best person I can, the rest will take care of itself. I would like to donate my organs to whomever it can help and my body to science, whatever can help. But until then, even though every day is a lesson in acceptance, I will continue fighting the good fight, and I will strive to live fully every day that is given to me, as if MF wasn’t part of my life.
Take me back to the Contents
© Beatrice Larroque and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Betrice Larroque and MPNforum.com with appropriate and specific direction to the original content.