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when the tears come

30 April 2013
me holding the light in my hand and heart, California 2010

A fragile day is the term my husband uses when my eyes are particularly sore, I’m tired or just a little emotional. I like it. It’s a delicate phrase full of love, acceptance and understanding. I don’t cry very often (not even when I got diagnosed) – I focus on the positive, love my life, practise gratitude, appreciate the small things, maintain perspective, look after myself more, have a small but awesome call-anytime-do-anything support network, and soldier on with the challenges. But a few times a year those hurdles wear me down to tears and sobs. Fears that I face everyday suddenly pop up starkly clear and I realise the daily stresses I cope with quietly. My mum says that I’ve always been a strong, self-empowered, silent type who nuts things out internally. But I have definitely adjusted to sharing more, but still many people would never know the extent of my challenges, physically and emotionally. However, sometimes recognising stresses related to my degenerating conditions is a slowly emerging surprise even to me, such is my focus on living and loving life.

When the realisation arises it can hit hard sometimes as I embark on another period of adjustment and grief, such is the nature of an ever changing, unpredictable condition. A week of bright sunny days, lots of eye pain and headaches, along with searching for a new fridge and couch was the final straw this time. My environment is so important to me that buying such things comes with many stipulations on colour, size and design – I do not enjoy shopping for them! The long bright days now take their toll on my eyes given the sensitivity to light that has developed these past few years. Recently I wondered if it was my mind playing tricks on me but I have learned it is a normal progression of the retinitis pigmentosa part of my conditions. This information brings both relief and sadness. The pain I experience is intense and draining and quite hard to avoid when one lives in “a sunburnt country”! While I try to adjust my schedule as much as possible around light, I’m aware of not allowing my life to be totally controlled by it. But it is a hard, constantly shifting, sometimes elusive, balancing act.

After being diagnosed at age 19, my mum sadly but aptly described me as having become a “clock watcher”, the result of knowing I lose independence at night time when my vision is at its worst. Now nearly 32, I see that I watch for the light in different ways – I seek out early morning and late afternoon walks with filtered light, winter days with less harsh daylight hours, surroundings with the shadows of trees and buildings, cafe seats with the lights behind me, and even night time walks with my husband and dog with whom I now enjoy the mystery of the darkness in albeit familiar surroundings. I am drawn to a mild light, cloudy days make me ridiculously cheerful and I dream of where we could move to that has mostly this weather (any suggestions?!?).

In these moments of tears with my husband’s arms around me, I feel a flash of fear for my future struggles that I simply don’t entertain most of the time. I worry that my positive attitude and health-focus won’t have any affect on the damage that will continue to come. An old insecurity pokes its head up for just a brief second and has me asking my husband if he really wants to be in for the long haul – which of course he does, because (choking up again) gosh that man loves me so much, as I do him. I can’t imagine a better partner in life to hold my hand as I tackle this.

As the tears dry on my cheeks and my eyes beg for the moisture to come back, my thoughts switch to how much I still do now. I take photos that give joy, I constantly improve my cooking skills and nourish us with good food, I walk everywhere, I help with events and small businesses, I am honest, I laugh, I respect, I love and I wholeheartedly appreciate the lessons that my challenges give me. I also recently received the loveliest email from a blog friend who shared how much my words on here meant to her as she faced a difficult realisation in her own life – to think that these words might be helping others means so much to me. I pat myself on the back (not often enough) for being resilient, never losing perspective, and allow myself this extra fragile period. I forgive myself these rare times of overwhelm, fear, pain and grief, because damn it, I am not succumbing to self pity, being defeated or victimised by this. It’s ok for the tears to come. And even then I know that I will get up again and embrace this with everything I have. I’m not letting all the greatness I am blessed to have in my life slip by unheard or unseen, even if it’s not in the literal sense. The blessings are noticed and appreciated.

17 Responses
  1. April 30, 2013

    Obviously I don’t know you ‘in real life’ but I know you are incredibly brave and positive. I cannot function without glasses or contact lenses and at times I find this frustrating. I cannot imagine your situation and how difficult it must be at times.

    The way you describe your husband and your relationship is beautiful!

  2. April 30, 2013

    You have a beautiful relationship with a wonderful man.

    You are allowed to have a little moment’s breakdown because it is a tough challenge knowing what you are succumbing to. My degenerative eyes are different from yours, but I feel the sorrow ever so often, the unfairness, how everyone else around me does not feel.

    Thank you for being so brave and strong.

  3. April 30, 2013

    So beautifully written Lucent. – your positivity and honesty are inspiring. I think our fragile moments can make us wise. Go gently xo

  4. Megan permalink
    April 30, 2013

    The image of your hand holding the sunlight was incredibly moving but the words that followed have left me almost unable to express my feelings.
    It is not surprising that your courage and spirit are able to help others find the strength to deal with their own limitations or trials. Your capabilities with photography and cooking (and probably many others of which I’m not aware) are greater than most with perfect vision. The challenges you face have not diminished your awareness of the blessings in your life – and you are indeed a blessing in the lives of your readers.

  5. May 1, 2013

    Thank you for this wonderful post. Tears serve an important purpose I think.
    I do identify with ‘a period of adjustment and grief’.
    You could come and live in Scotland where we have lots of cloud!

  6. May 1, 2013

    In the Twilight stories, the author chose Forks, Washington because it has the fewest days of sunlight per year, and she figured her vampires would like that. I’ve teased other RP friends about being part vampire too. *wink*

    Hugs, friend. I’ve had fragile days.

  7. May 2, 2013

    let those feelings come! they deserve attention, too. meanwhile, please know how inspiring you are! thanks for sharing your beautiful thoughts and imageswith us.


  8. May 2, 2013

    There is beauty in truth even when it hurts. Very thoughtful post, Lucent.

  9. May 2, 2013

    You are so strong! It takes a special kind of person to go through what you must experience on a daily basis, and I think a lot of people (me included) can learn a lesson from you. I’m so glad you choose to share your thoughts and experiences with people on your blog, because it’s really powerful.

    Also, I can definitely recommend you a nice overcast city: Vancouver, Canada! It’s an absolutely amazing place to live, and 8 months of the year it is in fact quite overcast. It never rains too hard, and throughout the winter it’s generally quite grey. Most people don’t love that (I never minded because that meant snow in the mountains), but it might be lovely for you. I’d definitely recommend even a vacation there… it’s so beautiful.

    You really have a great talent for conveying feeling with your writing. I admire that, and I admire you for your strength. You are pretty amazing :)

  10. May 3, 2013

    I like your husband’s term ” a fragile day”, we have had a few of those recently and close support especially from those you love are so important and make such a difference.
    You are such a inspiration with your strength and enjoyment of life. Sarah x

  11. May 3, 2013

    I so marvel at all you do…your photos, your cooking, all of it. And that you have the courage to write about it and share it here, even your struggles and bad days. I love this photo of you capturing the light. As for cloudy places, the most beautiful one I know is Seattle. I think I would have a hard time with all the cloudy days there but it has everything, mountains, rivers, ocean, and people who seem to love the outdoors. And the temperature is moderate most of the time. I love visiting Seattle (which I get to do for my work occasionally). Sending you hugs.

  12. May 4, 2013

    What a beautiful post! Don’t worry all of us have fragile days, even when we aren’t trying to cope with something as serious as losing your vision. To be honest when I have looked at your blog and photos, I never realised that you were legally blind (I obviously didn’t read your bio in the top right corner haha) – you take wonderful photos!

    It must be extremely difficult to not be able to predict the future progression of your vision, it sounds like you have wonderful support in your husband and your family! You have a pretty amazing attitude to it all, and yes it is more than ok to have days when you feel overwhelmed – thanks for sharing it with us!

  13. May 5, 2013

    Such a wonderfully heartfelt post. I love your strength, your courage and your honesty.

    Simply put, you are amazing.

    x Jasmine

  14. May 7, 2013

    My dear friend, You are such an inspiration to me. I always enjoy reading your beautifully written posts and as much as I could never imagine your journey, I admire you for facing it head on. I came across this quote when I was going through my grief these last few months. You may have heard it before, but I want to share it with you anyway. It goes….. “Keep your head up. God gives his hardest battles to his strongest soldiers.”
    YOU are one of the strongest! ~Lea

  15. May 13, 2013

    Beautiful piece! I think you’re so strong and admire the way you approach life and your positivity; I break down for reasons very much less big than yours. I love the term “fragile day”, I think I’ll start using it since unfortunately I have quite a few of them.

  16. May 15, 2013

    I love both the tenderness and strength in your writing. All my heart with you – the good days, the bad days, and the tears that come with both.

  17. Jodarna permalink
    May 28, 2013

    My beautiful dear friend, you never cease to amaze me. You are always entitled to your fragile days, they are so few and far between. You are so dearly loved by so many, who feel your pain, and would in a heartbeat take it from you if we could.

    You know if you ever moved to Vancouver you already have family here. Pup would love it and would be welcomed by all – it’s the most dog friendly city I’ve ever been. Time for us to find a job for that beautiful husband of yours. My company may be able to help there…not sure Mumma Bear would be happy about it but I’d love to have her visit or move here as well.

    Love you sweetheart xx

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