The Fight for Family

Today was both a sad and happy day for me.  The anti-GMO bill disguised as an anti-pesticide bill, HB790, did not move out of the House of Representatives, which was the good thing of the day for the farmers.  The sad thing of the day was a phone call I got in the afternoon from a long time friend and former patient of mine.

For the last 8 years, I have sent my friend Christmas cards to keep in touch with her.  I had developed a wonderful friendship with her during her rehab stay for an injury from a fall.  I witnessed her start from not even being able to stand up or move in bed to walking out of therapy and going home.  There were  many days of tears during her recovery that we both shared and I gave her the support I could to help her get through it.  We maintained our friendship since then and she became a friend of my family too.

She called me today to let me know that she appreciated our friendship and that she enjoyed my yearly Christmas cards and seeing my children growing up.  We caught up on what’s happened over the last year.  She told me that she wanted me to know that she had terminal cancer and was given 6-9 months to live.  She said she thought she would feel scared of it but said that she was truly at peace with it.  She was going to catch up with old friends and tell them how much she loved them and do what she can in the time she has.  I was so touched that she called me and wished her the best on her next journey through life.

On top of my friend’s call today, the last month has been very emotional for me.  My brother Mike has been having lots of joint swelling, pain, and odd reactions that could not be explained by the doctors.  He went through many tests and found out that he has lupus.  It’s great that he found out what was going on and now a good treatment can be found for him to alleviate the symptoms.  He’s always had unusual allergic reactions as a kid to Tang drink and bee stings so this diagnosis really took us by surprise.  As we look back at what my grandmother went through with her rheumatoid arthritis, interstitial lung disease, and diabetes, we suspect she had some form of autoimmune issues that went undiagnosed.  On top of the lupus, they also discovered that it is attacking his kidneys too.

Last week Friday, I had a big scare when my mom called and said my brother had to be taken off the farm to the hospital because he was having anaphylactic shock.  He had gone down the field as usual to scout for pests and spray trees.  It was just a regular day.  However, as the day progressed, he began to swell up and his quick thinking coworker recognized the symptoms and called 911.  Luckily, the ambulance was able to get into the field to get him to the hospital to be treated.  He had a severe reaction to a new lupus medication he had taken the night before.

All I could think about was I wish I could help him.  I wish there was a cure where stem cells could restore his immune system.  I purposefully donated my son’s stem cells when he was born and got confirmation that it had made it to the cord blood bank.  I would even donate my organs or stem cells if he needed it.  If I can give the gift of life to him, I would do it in an instant even if it may cause temporary pain.  He’s my little brother and I want him to have his health back.  I would do anything for family.

At my job, I see firsthand what can happen when we lose our health.  There’s a lot of pain and suffering when a healthy person gets hit by a stroke, ALS, or some other life altering disease.  I so wish that science can help find a cure to stop symptoms and help people lead full lives.  Although I help teach people how to live with disability through compensation and adaptation, I see the consequences when bodies fail.

I wish that there would be high tech research happening in Hawaii to treat diseases like lupus.  Maybe one day there will be a genetically engineered treatment to help normalize immune systems.  Instead of chemotherapy, maybe cancer could be treated with some other medication that doesn’t have as many side effects.  What if people could get a easy screen to detect these diseases before people have to suffer symptoms?  There are so many what ifs but that can only happen if we dream and invest in that future.

As a parent, I want the best for my children.  Just like my parents wanting to best for me and my siblings, it’s a value that is universal.  I will continue to fight for science and hope that it will help my brother and others live a full life.  I will continue to push for education in Hawaii to help create innovations to have a brighter future for my children and others.  There are so many problems in the world and we need problem solvers, not protesters.

4 thoughts on “The Fight for Family

  1. Dear Joni, please give my best regards to Mike and let him know I am sending him my love and prayers. Take Care. Joy Gold

  2. Joni , keep the faith. My prayers are also with you and your family. Please let Mike know, too.

    Sorry, automatic corrections wrong spelling.

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