This past week was hard for me.
I said a final goodbye to a great friend Maria who had fought breast cancer for 6 years, but whose liver could not keep pace with her treatments or zest for life. She faced her fear, and said “you are not getting me until I am good and ready.” I am not sure if she was ready, but she certainly lived life to its fullest and inspired those around her to do the same.
I woke up on Monday with discomfort in my knee. I have always had knee problems (they dislocate, now diagnosed with loose joints, I know there is nothing I can do about this) but the discomfort caused my age old fears to surface and invade my thoughts. Would I need to go to a doctor? Would I need an MRI? Would they tell me that my knees were just irreparable? Would my 5k in 2009 running ambition be called off?
And I had to comment on the following statement in my doctor’s letter to my employer about my nerve disease…
“The medium to long term prognosis of her condition: I can only make a general comment that her condition will slowly but steadily worsen.”
As I read this sentence I still do not know what to think. It is my worst fear, an uncontrollable unknown…
In 2004 I received my official diagnosis of Charcot Marie-Tooth disease. This all started because I had decided to walk the Moonwalk midnight half marathon in 2003 but had foot pain. To be able to do the full Moonwalk marathon in 2004, I knew I needed to get orthotic inserts in my shoes to manage my foot fall and eliminate the soreness I was feeling. I went to the orthopaedic specialist, who referred me to a neurologist. I learned that nerve conditions express themselves in the feet (and hands). And I had feet that cried out “nerve problem”.
I had always known that running was “not easy” for me, so much so that I quit it years ago, but with my diagnosis in late 2004 my lack of sportiness suddenly had a name. And with that name it seemed that life had fundamentally and irreversibly changed. The name did not come with a cure and it did not come with a path. It embodied my greatest fear – the uncontrollable unknown…
As far as I can see there are two paths to choose from when being diagnosed with an incurable disease – or indeed when faced with any life challenge. The path of surrender (or least resistance), or the path of fight. I have never been someone who surrenders – I thrive on goals and challenges, have large ambitions and believe that with perseverance and hard work anything can be possible. Armed with my own convictions, I confront my fears. But I know that I can control the starting point, becoming and staying strong physically so that any deterioration that I might experience will be from the base of a high physical level. How far deterioration will take me, I do not know.
That unknown is hard for me to deal with. The only way I have ever dealt with my fears is to face them head on. I’ve always done this. I am scared of heights – but I have bungee jumped and abseiled, and each time I pushed the lump of fear in my throat aside and replaced it with adrenaline and the glow of success when I have achieved my goal. With determination and strength I will go forth, battling my physical demons and with my end goals in site – running a 5k in 2009, and competing at the Olympic distance in my 2010 triathlons. Sure I have a lump of fear in my throat, but I am taking the journey one step and one day at a time…
Just like my friend Maria did for the six years that she fought breast cancer.
I am sitting here with my face in my hands which is what I do when something breaks my heart. But that isn’t the case here. As much as your story breaks my heart it heals it back by the end of the post. I am so impressed with your drive. I feel blessed to have met you and to be able to watch this journey. Thank you so much for sharing.
Thanks so much for your support and encouragement. My challenge is indeed a journey, and one that I am so excited to embark on, and to share. It is often said that triathlon is a sport comprised of three individual sports, and not a team sport. On the contrary I find that our networks make me feel a part of a team as I train, push and strive to achieve. Thanks for being a part of my team.
I love your thoughts about hardship and how we are defined by how we face them. I am going to add that to my mantra list! Thanks so much for your support.
WOW. I am impressed with your commitment to face this head on. We are each defined not by the hardships we face, but how we face those hardships. Right now you are tops in my book.