There are times that I feel low.  It is rare but it happens.  I laugh often and I love life.  But sometimes…

Sometimes I feel alone.

Everyday when I wake up I think to myself “Life is brilliant.”  I breathe deep and wonder how I can fit into the day all the things I want to do! But…

Sometimes… I wonder if it will it always be this way…

That is the problem when you have a progressive, degenerative condition.  A condition with no known path, no known final prognosis.

You just don’t know what the future will hold.  And staring at that unknown.  Well…

For me, anyway, it can make me feel alone.

The intense feeling of being on a solo journey arises at the strangest times.  Out of the clear blue, it will hit.

* When friends and colleagues have babies, it can hit.  Do I want to have children, knowing that I can pass along a condition whose path is unknown?

* When you ask for time off of work to go to a doctor’s appointment and are told that you need to take it as paid annual leave, because you are in perfect health.  Because they can’t see what you know is there. That alone feeling hits.

* A coach’s light-hearted poolside remark – “You guys are pretty slow” – triggers frustration.  I seem “normal” but am battling demons that I can’t control and that no one else can see.  My nerves don’t communicate well with my muscles.  By definition I am slow.  Such a small remark, triggering a big feeling of being alone.

Family and friends help.  A good hug at a random moment can mean the world.  But… Do they *get* my solo alone feeling?

The extraordinary thing about tweeting, blogging and opening up in public is that sometimes you get messages from strangers who let you know that you aren’t alone.  From people who fight their battles, and who share their pain.

“We know the loneliness that is sometimes there when one does not quit.” ~ lak1

You find words that resonate.  Words to pick you up, words that make you look inside of you.  To search NOT for what you don’t know, but for what you DO know. 

I KNOW that no matter what happens to my nerves, my spirit will remain.  Who I am, who I truly am, SHOULDN’T be dependent on my unknown physical future.  Who I am is about TODAY – how I approach living THIS VERY SECOND.  The unknown SHOULDN’T be important, it shouldn’t dominate my thoughts.  When it does… *That* is when I feel alone. 

I need to focus on what I will achieve today, and tomorrow.  I need to have goals.  To keep me going, to keep my spirits high.  To be true to myself…

Through blogging and twitter, much to my surprise, I have found words that make me stop and think.  Words that make me feel less alone.  Words that cause me to wake up and ask myself “what is my next goal, the thing that will keep me going”. 

Resetting my goals is fast becoming priority number one for me.  2010 looks like it is going to turn into quite the year – from the huge physical challenge I have set for myself with triathlon, to the emotional journey I am about to embark on as I search for the next path I will take.

“Be brave and true to yourself and know what you want.” ~ lak1

“The race is never against other people.  Never ever.  It’s against yourself.  When you set yourself a goal you challenge yourself and nobody else… …my race has always been with myself.  I think of each box ticked as a lap on a never ending track of life.  Stamina and pacing are essential in order to keep on running.  And keep on running we must, because it is this that makes us truly alive.” ~ Jevon O’Neill

“I’m thinking about the good things. The happy things. The things that make life seem so good. So no matter what I get told today, whether it’s good, or bad, or ugly…I know I will be OK. I have so much to be OK about.” ~ This Little Lady Went to London

“The best thing that has happened to me is realizing that I can do more than I thought I could. I felt weak and I felt tired and I found out that I am able. I have things that I can’t do, but I can still try.” ~ Anissa Mayhew

“We are what we create. And we can create and re-create ourselves all the time if we choose to.” ~ Venus in Balance

13 responses to “Alone”

  1. you are amazing, going forward one day at a time, setting not only physical goals but ones that will help you heal in the place that counts most, the heart. You are not alone.

  2. DonnaGreat piece.  Refocus and form your goals.  Forget what other people do or think.  Find what makes you fulfilled and pursue it relentlessly to your own standards.  You’re ‘faster’ in business than most others.  So what if you’re not Ian Thorpe in the pool.  As long as you’re going as fast as you can – that should give you satisfaction.J.x

  3. Powerful stuff, Donna. Most of us have an inner life that’s not visible to the world around us where we wage battles…but for most of us that’s a mental thing and therefore we can all relate on some level. When it’s an invisible physical condition, for some reason it’s less tangible and for some, harder to get their minds around.But you are out there, talking about it and helping people understand. This education process, whilst slow, is so very important.

  4. I m honored to be quoted. Like you I have “met” wonderful folks through the internet that have helped me survive pointless oncology appointments- where they don’t realise I know they are lying to hours of fighting NHS managers for treatment and successfully becoming 2 per 61 million in the UK and getting liver resection for my cancer. No we don’t know what tomorrow will bring but today was pretty damm good! Love your blog hang in there!

  5. Donna, no one can completely empathize with the individual who you are, but I do know this, you are going to be privileged to see life through a lens few others will see. Embrace who you are, your life, and know even when you feel alone you are not alone. Your friends are here.

  6. Hi Donna,I know how you feel, or rather I can imagine. Ultimately we are all alone; in the end it is only ourselves that can choose what to do with our lives. Sure, people can influence or inspire us but in the end only we can do the doing. No one can get inside our head and actually “be” with us to share life in that sense, it is the human condition, sometimes a blessing, other times a curse.When my Dad found out he was terminally ill but at that moment didn’t have a life expectancy, he was finding it hard to deal with. I said to him that all of us are going to die one day and we don’t know when, “The only difference, Dad’, I said, “is that you know what will eventually kill you and we don’t”.What I’m trying to say in my own clumsy way Donna is that none of us know for certain what’s around the corner. All of us are getting older and our bodies deteriorate with age. The only real difference in your case (when you think about it) is that you are sure what it is that will worsen with time.The rest of us haven’t a clue so we can’t even plan for it! Look at it as an advantage – you know what’s wrong and you can act accordingly, planning your future with a more accurate, informed strategy.All of us if we have any sense must take each day as a gift and live life to the full. Most of us are – you certainly are, I am and a lot of folk who Twitter are very mindful of how short and precious life is, thus we pack a lot into our lives.People make remarks all the time and they hurt us without ever knowing what they said to upset us so. Such is life, try your best to forget what people say, you know they never meant to hurt you. Take comfort in that most people would never intentionally upset you if they knew especially.I hope you take comfort in the fact that people do care. No, we can’t share each other’s lives other than in a virtual sense but we can give each other that little bit of support when needed and I think that is one of the wonders of Twitter and the Online World in general.Just keep doing what you are doing, take each day as it comes and remain strong. Naturally if I can help at all with training issues or anything running related or just for moral support, please feel free to drop me a line.Take care,Ian

  7. Thank you to everyone for all the comments.When I posted this entry, I did so because I had to find a way to express myself in order to identify the triggers that make me feel alone, and to look at ways to address the root causes.  The post enabled me to put my finger on a few key things, which I will seek to address in 2010. I can’t wait to see what the year ahead will hold.I never thought that the post would resonate with so many people.I feel overwhelmed by the support, reaching out, and understanding shown to me and expressed by so many people on this blog, via Facebook, Twitter, and email as a result of this entry.  I can only say that if there is one thing I learned over the past weeks of writing this entry, it is that the process of crystalising how I felt has been enormously cathartic for me.  I don’t often visit the “alone zone” but thought the time was right to explore it well and to tell others about it.Thank you all for allowing me the opportunity to share, and for taking the time to read and reply.  Donna

  8. Thank you to everyone for all the comments.When I posted this entry, I did so because I had to find a way to express myself in order to confront what I have never really acknowledged before.  I don’t think I have ever discussed this with anyone, ever. It was a big decision for me to “put it out there”.  I don’t often visit the “alone zone” but thought the time was right to explore it well and to tell others about it.  In writing this entry, I put my finger on a few things that trigger me to have these feelings, which I will seek to address in 2010. I can’t wait to see what the year ahead will hold.Blogging, you might say, is a self indulgent habit.  You write about you.  I felt compelled to write this.  I knew it would help me to get my head in order.  But I never realised that the post would resonate with so many people…I feel overwhelmed by the support, reaching out, and understanding shown to me and expressed by so many people on this blog, via Facebook, Twitter, and email as a result of this entry. I can only say that if there is one thing I have learned over the past weeks of writing this entry, it is that the process of confronting and crystalising my feelings has been enormously cathartic for me. Words can resonate – through reading and writing I have found inspiration, support and energy.  Thank you all so much.Donna

  9. Donna,I wish I knew what you are going through and could offer you more intuitive support. I admire your strength, drive and courage. You’ve taken on an amazing journey and even though the destination is unclear I know that the people you meet and impact upon along the way will be blessed by your strength and inspired in their own lives. I know I am.Sheryne x

  10. Hi Donna,I think everyone has these moments, and I respect you for ‘putting it out there’. I also have CMT (1B). So far I have been exceptionally lucky. I bike, hike, run, swim… albeit slowly! and your posts inspire me.I too do not know what the future holds. For many years I denied my ‘condition’ due to a fear of what the future might bring. I recently joined a local support group, and whilst I have greatly enjoyed the meetings so far, and have met some wonderful people, it’s also very frightening to look at people and wonder – will I face the same decline? will I have these same problems in the future.Just this week I signed up to do a 4 mile run with some good friends. I tell them I will be slow, and joke about them making sure they keep the finish line open for me! They laugh, but they don’t realize that I am being very serious! This has happened to me in the past! I am inspired by your courage and your goals. I wish you all the very best for 2010.Jude

  11. Hi Jude,

    Thank you so much for your message – and for connecting.  It is always inspiring to meet other CMTers who are active, motivated and who get out there and do what makes them happy.

    I am thinking of opening up a series of interviews on my blog with folks with CMT.  If you are interested please let me know.  My email is .(JavaScript must be enabled to view this email address)…  I would love to hear how your 4 mile run goes!

    In the meantime, keep in touch.  And thanks for keeping me inspired!


  12. Here’s a quote) 
    Maybe the most that you can expect from a relationship that goes bad is to come out of it with a few good songs. (c)Marianne Faithfull <a >idipic</a>

Leave a Reply

Your email address will not be published. Required fields are marked *