You’re going to die, so live

Guest post by Linda Johnson (my mom)

I was asked to write this post by my daughter, Nisha Moodley.  I am immensely proud of Nisha.  She has sprouted wings and soars.  I am also proud of myself for being a strong woman who stood up for herself and chose life.

I turn 60 this year.  That is not exactly the age of the learned elder.  However, it is far beyond what was foretold for me.   I believe in the power of love and life. I’m so delighted to see Nisha embrace this belief and help other women find their power and freedom.  Breathe in, breathe out, live.

nisha and mommy

Mommy & Nisha circa 1981

I was 25 when I found out I was going to die.


At that age, most of us think we are going to live forever.  It was a gift to find out otherwise.

I had been diagnosed with an unusual and incurable disorder that causes bone marrow to produce too many red blood cells.  It is very unusual in a young woman.  I was recently married and busy and there was no internet to scare/inform me of the implications of my illness so I just worked around the symptoms.   However, I was seeing a doctor for fertility treatments and was getting frustrated with the lack of success.

One day, the doctor told me that perhaps I should rethink my plans to have a family as I would probably not live long enough to see them graduate from high school.  What!?!  Some digging in the local library confirmed that average life expectancy after diagnosis was 10 – 15 years.   Well, that was simply ridiculous.  I planned to live until I was 103.  I couldn’t possibly be dead by 40.  A week later I discovered I was pregnant.  My stubborn self decided I had even more to live for.

Such a confusing time.  I was pregnant and my marriage was falling apart.  I had an illness no one had heard of.

Was I scared?  A little – but it all seemed pretty abstract.  A lot could happen in 15 years and I wasn’t going to sit down and wait to die.  Besides, I felt pretty good and I didn’t look sick.  My family was numb, but there was little information about my illness and I was pretty busy with that baby.

Over the years the illness progressed and the symptoms became more intrusive.  I continued to work around the symptoms and treatments, determined to live a full and happy life.  I had a demanding career that I loved.  I remarried and had another child.  I traveled.  No time to sit around worrying about the ticking clock.  However, I was struggling with depression.  This was a life-long problem; always afraid of slipping into the abyss.  But when I started to feel suicidal I started taking anti-depressants.   I knew I had to choose life and I was determined to beat the odds.  Things would get better.

When I turned 40, my husband announced that I was in “the bonus round” and asked me what I was going to do.  I had to keep going and rise above the illness.  I was a senior executive in the public service, had two children, lived with depression and was an introvert.  So I made a clown suit and crashed the local parade.   Color outside the lines.  Life was good.

I continued working long hours, traveling, spending time with my family and enjoying my life.  Then, the walls started to fall down.  My beloved brother died suddenly of cancer.  A week later I started chemotherapy in an effort to slow down the progress of my illness.  I was in increasing pain and my heart was broken with the loss of my brother.  I knew I had to keep going – my parents needed my support and my family was depending on me.  In December 2008 my spleen had gotten so large it had to be removed.  My dad’s health was failing and I spent much of my recuperation visiting him in the hospital.  He died two months later.  Mom was devastated.  She was a strong, independent woman but had her own health problems and was increasingly dependent on my sisters and me for support.   Less than a year later, she was gone.

grandma and grandpa

My mom & dad

It felt like every time I got up I got kicked back down.

So much sadness.  My health was declining, but I wasn’t done yet.  People were relying on me and despite all the sadness there was so much love in my life and so many reasons to live.  Then I lost my job.

I was overwhelmed.  I had lost my brother and my parents, my health was failing and the job that had defined me for decades was gone.   I was so buried in despair that I thought I had lost my mind.  But I didn’t lose hope.  My belief in life and love lifted me up.  My family loved and supported me, the birds sang in the morning.  I wasn’t done yet.

I wanted a new start, so in 2011 we sold our house in the city and bought a beautiful organic farm an hour from town.  8 acres of forest, creek and fields with a large house and a view of the mountains and ocean; it was ideal.  The lab results, however, were less than ideal.  My bone marrow was so scarred from years of over-production that it was no longer producing enough red blood cells to sustain me.   A month later I started needing transfusions to keep going.   This was serious.  Average life expectancy?  Three years.

I was accepted as a bone marrow transplant patient, with the knowledge that there was about a 60% success rate.  It was 100% certain that I was going to die without a transplant, so those odds looked pretty good.  One of my sisters was a perfect match as a donor and in October 2011 I had a stem cell transplant.  There were some days that were hard, but I was always sure the next day would be better.  Or maybe the day after that…  I wore a tiara in my hospital bed and danced with the IV pole.  I put on lipstick every day.

mom bone marrow

Goofing off on transplant day

When I was discharged from hospital for my long recovery we celebrated each step forward.  I went bald.  It grew back.  On my 100 day anniversary we drank a toast to the future.

momandnisha

Me and Nisha, post transplant

I’m home now and love my life on the farm.  

I have a beautiful, productive garden.   I play with the dogs, feed the lambs and chop firewood.  Life is good.  There have been setbacks and my life is different post-transplant. But one thing has remained the same: my passion for life.  The love in my life, my desire to live in harmony with nature, the joy of laughing out loud – these all sustain me.

Here is what I’ve learned so far:

Life is short – even if you live to be 103.  When I found out that dying young was a possibility I didn’t start living every day as if it was my last day.  I started living every day as if it was my first day.  What would I discover and learn?   What could I do today that would make life better tomorrow?  Make your life a series of hellos – not goodbyes.

Choose life.  No matter how nasty things may seem, it will get better.  I don’t think life gives you more than you can handle.  It might feel like a stretch, but you can do it.  Breathe in, breathe out, live.

Create love.   Be generous with your heart.  Cultivate true acceptance and drop judgement.

Make peace with yourself.  Treat yourself as if you were your own best friend and worthy of love (because you are).   Set yourself free from unrealistic expectations and self-criticism.  As a perfectionist, this was hard to learn and live, but totally worth the effort.

Adopt an attitude of gratitude.  Appreciate those who love you.  I can’t imagine going through the transplant without the selfless support of my husband, Robert.  I’m so appreciative of the medical professionals who have helped me, my family who has supported me and my friends who have cheered me on.

Have fun.  Laugh out loud every day – even if it embarrasses your kids.  Be goofy and quirky and indulge the giggling child within.

Find joy.  Look at the incredible world around you; rainbows, butterflies, tiny plants growing in cracks in the concrete.  So much wonder.  Look at your reflection in puddles, smile at strangers, feel the sun on your face.

Believe.  In unicorns, God, Gaia, crystals, the future or the past – whatever helps you feel connected and supported.

Live like you mean it.  The dying stuff can wait.

posted in lifestyle + relationships + spirituality.

22 Comments

  1. Tracy

    Nisha, thank you for sharing and allowing us a peek into Linda’s world.

    Her story is beautiful and authentic and such an inspiration to keep going no matter what.

    What a true blessing to see the love you have for each other.

    Warmly,
    Tracy

    Reply
  2. Gayle

    Thank you for sharing this inspirational life! Nisha has had such a powerful role model. I want my daughters and granddaughter to be SO inspired by the choices I’m making so they can live their lives fierce and fabulous.–Peace and Continued Happiness!!!

    Reply
    • Nisha

      Gayle,

      You are so right — I have an amazing role model!
      I am sure you are doing the same for your daughters
      and granddaughter. What a blessing.

      Much Love,
      Nisha

      Reply
  3. Leah

    I can see where you get your spark for freedom, Nisha!

    I’ve really been wrestling my own impermanence lately, and this was a beacon for radical accpetance and authentic living. I, too, plan to apply the idea of, “Live every day as it is your first day, not every day as if it were you last.”

    I’m still in a panic that I’ll die without ever truly living (what does that even mean, anyway?!), but I’ll refer to this when I struggle.

    Thanks for sharing this story.

    Reply
  4. Courtney

    Profoundly inspiring. Thank you for sharing so openly and vulnerably…I also believe, “I don’t think life gives you more than you can handle.” Thank you for these words of courage. xo

    Reply
  5. Elisa

    Great post! I’m blessed to have an amazing mother as well. She’s been gone for over 20 years now, but I know she’s a key reason for why I’m so special too.
    Nisha, thanks for posting and keep up the great work. You are amazing too!!!

    Reply
  6. Sara

    Momma Nisha, gorgeous writing! Thank you for being so generous in sharing your story. My fav line among the many gems: When I found out that dying young was a possibility I didn’t start living every day as if it was my last day. I started living every day as if it was my first day.

    After experiencing loss of my dad a few years ago, I’ve adopted many of the mindsets you talk about. But the line above reawakened me in a whole different way.

    Thank you, N, for sharing your mom with us. Isn’t it true that strong moms create even stronger daughters?

    XOXO

    Reply
  7. Sora

    Dear Nisha and Momma Nisha,
    I too have an incredibly strong mother who battles everyday to stay positive, alive and healthy. It was wonderful to read about not only your story but your lessons on how to live. I shed a tear with gratitude and happiness for all mothers and daughters.
    with love,
    Sora

    Reply
  8. Nadya

    Such a great, authentic post! Thank you to both of you for letting us peak into your life and learn and be inspired. It made me think about my mom who had 3 girls after the doctors told her that her heart wouln’t be able to handle it. Let’s celebrate our amazing moms!

    Reply
  9. Kathryn

    Wow, thank you for sharing such an incredible journey. Certainly a reminder that we have to grab every second of life while we can…

    Reply
  10. Pat

    WOW what a amazing story. I was feeling down and after reading this I was starting to practice ..Thank you Linda you are such a inspiration to us all.

    You are amazing , loving and full of life. I feel so very blessed to be a part of your life.

    Reply
  11. Danielle

    This is one of my all-time favorite posts of yours. I’m so inspired and empowered by your mother’s strength. Thank you both for sharing this with the world. xo

    Reply
  12. Natasha Finch

    Wow! Breathtaking and tear inducing. Definitely trumps my daily dose of Tony Robbins. Thank you so much Linda! And Nisha!

    Reply
  13. Kelly

    My little 5 year old is named Nisha so that’s how I came upon your blog by googling her name. As I scrolled I got pulled into your mom’s beautiful story. We also have a mixed family. I can relate to your mom’s pain and strong fighting spirit not directly but it terms of feeling some of life’s pain. It’s inspirational to hear how she kept going when it would have been easy to succumb. Both your lives have meaning far beyond what the eye can see. Continue to live well always.

    Reply
  14. Dahlia

    Beautiful words and a beautiful story and lesson. Thank you to your mom for being so honest and telling it how it is. I am so happy that she is doing so well and I hope that this continues into the future for her. God Bless!

    Reply

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