Michele

Michele - living with CVID

My name is Michele  and I have a long and rich history with Common Variable Immune Deficiency…. and a plethora of diagnoses which have been a huge influence on shaping my life, my personhood and will continue to influence and shape my land of tomorrows.

Chronic ill health brings with it amazing opportunities to understand and come to know life values. Love, laughter, courage, resilience, fortitude, humour, kindness, grace of heart, attitude of gratitude, appreciating joyful moments, well being and blessings that surround us each day. It is a means to develop empathy for those experiencing challenge, and it is a lesson in strength, learning to metaphorically crawl during tough times and keep crawling till one can walk again. A path of ill health being a path where one can, if one chooses, evolve within from the soul, the heart, the mind and the spirit.

My journey began as a teenager with a rip roaring vi rus that hit out of the blue…..and after that….my acquaintance with chronic health problems began. By the time I was in my early twenties I had notched up real health issues that no-one could accurately diagnose, plus continual infections, usually of the chest.

At 26 years of age, I gave birth to my son, Jason, in Los Angeles, and blood tests revealed a potentially serious problem. A bone marrow followed and fears that I might not be around to raise my beautiful and hugely hungry baby. The results showed a platelet condition and neutropenia, but ….that was 1981 when things were far less sophisticated in the knowledge and testing of Immune Deficiency.

Under advice to have no more children I quickly got pregnant and produced my beautiful daughter, Tania (no-one was stopping me having a second baby!!) back home in New Zealand. By this time, there was some understanding I had problems with my immune system.

My jewels of the universe, Jason and Tania are now aged 28 yrs and 27 yrs respectively. And I am still here, filled with enthusiasm and love of life.

Wow!! Have had my moments over the years with health issues…too many to recall. Many hospitalizations, infections, surgeries, and new illnesses to manage …they tend to clock up with age….and leave their mark. You never really recover from some of the significant bouts of ill health…but collect ongoing issues to manage to the best of one's ability. I do home sub-cutaneous infusions of normal immunoglobulin twice a week, having earlier this year performed my 1000th home infusion. I marked the occasion by drinking rum from a syringe. And making those gathered around me do the same. Was fun and so worth celebrating the moment!! My infusions took a long time to settle with my body…there was quite the journey and I realized early on that attitude was going to be pivotal. So from there on my infusions became my friends. Without them, my quality of life is seriously diminished so I am extremely grateful for their presence.

I work very part time and to be able to do so, I am thankful. I have also had the privilege of serving on the Child Cancer Foundation and the IDFNZ Board. Energy and wellbeing always a precious commodity with that fine line of balance between living each day well, being active, also resting, having excellent nutrition and staying as healthy as possible. My exuberance for life, sunshine, rainbows and simply being, whilst diminished when ill, is ever present. Strangely I am stronger in spirit after any difficult period of trials and tears. There is a saying that a good life is not necessarily an easy life. I have a wonderful, not so easy but "good" life.

It has certainly been a long, interesting and challenging path for me and my family. My son, Jason has suffered ill health since age 9 when he was diagnosed with juvenile diabete s and an IGA deficiency. The combination proved hugely difficult and he experienced multiple hospitalizations, so many infections it was a nightmare for schooling, surgeries, and endless needles of insulin injections every day of his life and IV Intragam P every 6 weeks.

He has the most amazing reserves of courage, strength, compassion, resilience and a cheeky, sense of humour. Fabulous human qualities which I so admire. He always picks himself up after being knocked down and carries on with a smile and is quite simply, my hero.

By the way…after losing 8 years of consistent schooling due to ill health, Jason is now at University completing his degree, plays competitive squash and tennis, sport being the passion of his life, at times races his car at the track……and too, his motorbike and has worked in Banking for years prior to university. He still has periods of significant health challenge and illness, which we navigate as a team effort but he more importantly lives every day to the full.

My daughter, Tania has had a lifetime of living with a chronically ill Mother and brother. Luckily Nigel, Jason and Tania's lovely Father is healthy and she got more of his genetic makeup than mine!! Because of her experience with Jason and I she has developed inner strength, compassion, caring and kind qualities. Tania has had a challenging journey and one not always appreciated. It is very, very difficult being the child or sibling of family members with ill health. Their path a minefield to tread and they are too often forgotten in the fray when illness strikes. She is a divine soul and a source of support and love and I feel amazingly blessed to have her as my daughter.

This path of chronic illness is quite simply a journey and one that touches family, friends, work and community.

I know that each of you reading this will have challenges unique to yourself and your family. We, in a sense, are a global family of those who experience chronic health issues and who walk that path each day to a greater or lesser degree. There is generally, no long term respite, and we need each other to share, inspire and learn from, so our lives can be enriched.

I wish you all, the colours of the rainbow as you live, love, laugh, learn and heal.

Michele x