Orin Lewis on focusing the mind rather than worrying about loss

Written by Suraj Shah. Conversation with Orin Lewis.

He was bold to shush them, all 3,500 Boyz II Men fans in a fairly-packed Brixton Academy, all waiting eagerly for the concert to start. Before the main act, Orin got up with his bucket and banner.  From the stage, with grace and strength, he told the story that brought the audience to stillness.

Orin Lewis, co-founder and Chief Executive of ACLT, gave a brief but impactful message about what the black and asian community can do to save and enhance the lives of family and friends affected by leukaemia and related blood conditions.

Together with Beverley De-Gale, he had worked tirelessly to find a suitable bone marrow donor for his step-son Daniel De-Gale.

After many years of holding onto hope and faith, they found a donor for a bone marrow transplant that enabled Daniel to live a full and fruitful life including successfully passing his exams at school and University.

“Focus the mind on what needs to be done. Rather than worrying and worrying and turning into a dark corner, come out with a positive attitude.”
– Orin Lewis

Daniel was in full remission and free of Cancer, but due to complications with his health that led to multiple organ failure, he died aged 21, nine years following the transplant.

In this conversation with Orin, we learn about the inner journey that he took, from initially finding out about Daniel’s condition and the rare chance of finding a donor, to successfully finding a donor and making the transplant happen, through to losing Daniel 9 years later, and now several years on, continuing his work, leading a calm and purposeful life.

When Daniel was diagnosed with leukaemia, what fears arose in you, and how did you overcome them?

Orin: It all started when 6-year-old Daniel developed flu-like symptoms. He was taken to hospital three times where he was prescribed Paracetemol. But Daniel continued to complain of aches and pains in his legs, raised glands and bruising on his body.  Beverley took him back to the hospital and insisted they carry out further tests.

Finally on the 7th April 1993 when after numerous misdiagnosis by various experts his numerous debilitating physical ailments were finally correctly diagnosed the tests finally revealed that Daniel was suffering from ALL (Acute Lymphoblastic Leukaemia) which is the most common form of Leukaemia in children.

Daniel was admitted to Great Ormond Street Hospital where he had a Bone Marrow check to determine how severe it was. The hospital said that if another week had elapsed that he probably would have died because the leukaemia cells had infiltrated his blood and bone marrow system very severely.

We were all in a state of complete shock and disbelief and were very fearful of the next stage. But we were told that about 70% of children can be completely cured after five years of intensive treatment.

I am old enough to remember watching the huge TV appeal in the early 1970’s for little Anthony Nolan, who desperately needed a matching Bone Marrow donor. Sadly he never found one and his mother started the world’s first Registry for unrelated donors to be tested for patients in need.

So when Daniel relapsed 9 months after finishing his 2 year cycle of Chemotherapy, we knew that the clock was ticking and time was against him finding a matching unrelated donor (since his younger sister, Dominique was not a match).

The odds of Daniel finding a donor was over 1 in 100,000 due to the lack of Black or Mixed Race donors, whereas if he was White it would be at best closer to 1 in 4 due to the large amount of white donors registered. Hence why the charity was formed.

Our lives had adjusted to his long battle against Leukaemia and dealing with the harshness of his Chemotherapy treatment and now we were thrown into this new world of searching for a life saving donor, whilst he started another 2 year cycle of treatment.

The ultimate fear now was that his body would not be strong enough and that we would run out of time searching and raising the much needed awareness in the UK and abroad via our newly formed charity, the ACLT.

We utilised the old Malcolm X positive statement of “By any means Necessary” as our motto for inspiring and motivating ourselves in relation to staying focused on the aim and objective of what we knew would be a potentially long journey into the unknown.

Also the very strong bond of love for each other as partners and parents gave us the fuel to take on and try to understand what was happening. We always knew there had to be “a method to this madness” that Daniel had to live through and we generally felt that from a negative situation a positive solution would eventually result.

For 9 years, Daniel led a full and fruitful life after the transplant, but then he passed away. What emotions presented themselves in you and how did you manage to rise above them?

Orin: Visually watching my son lose his fight to live in the Intensive Care Unit will ultimately always be the saddest and most disturbing day of my life. I saw the traumatic effect it had on Beverley and those closest to him.

Yet at the same time I knew that I had to be visibly strong in mind, body and soul for everyone especially Beverley and my step-daughter Dominique.

It was not easy but I had a feeling of calmness around me based upon what I believed Daniel would want me to do if he was physically around. Because he was always the one who could calm things down and get reason to break out of a dispute.

I always have and continue getting a lot of my “reality checks” from being around and observing Beverley and Daniel and it has truly had a positive effect upon my natural dour persona.

What impact did losing Daniel have on the purpose of your work?

Orin: The legacy of my step-son, the late great Daniel De-Gale, has been to increase even more the need for Black, Mixed Race and Asian people to hear, see and feel our messaging about stepping forward sooner rather than later as Bone Marrow, Blood and Organ donors.

BME people realize that his transplant was a success, but did not know that in later years due to unrelated health issues Daniel became heavily dependent upon receiving weekly blood transfusions from White people with the same blood group (Luckily blood groups are generally not as race specific as a bone marrow or organ donation, and not enough Black or Asian people are donating blood or carrying organ donor cards).

What is your source of strength for maintaining calm in your day-to-day life?

Orin: Beverley De-Gale (my Soul Mate) and also Dominique, my 2 sons Lutalo and Jelani and finally the groundbreaking and life saving work of our small charity, the ACLT where we have raised the BME donor numbers from approx. 580 to over 37,000 and found over 30 matching and life saving donors.

I feed off the energy (good and bad) from other people which enables me to stay calm and have a balanced equilibrium on my outlook towards life, despite the long term pain and heartache due to Daniel’s long battle against ill health which was then followed by his passing.

The negativity that I initially see and face on a day to day basis from Black, Mixed Race and Asian people on the subject of registering as a lifesaving donor, is the positive fuel that I use to stop myself being engulfed in sorrow and mental pain. I instead turn the negative vibes into positivity by informing, motivating and inspiring so that their minds are changed and they do go onto register and potentially save a life.

The bonus is when I speak to lots of individuals who on the positive flip side say that they have been inspired to register, because they heard our message. That always makes my day, or when someone says “Thank you for doing what you do” because it cements in my mind that we are “doing the right thing”.

I also get a calming reassurance from speaking to the many donors, patients and families linked to our work. And this is a combination of those that became donors, found a donor or sadly lost a loved one due to the lack of a donor. Their individual and collective positive thinking and frame of mind, especially people dealing with sickness and bereavement is so profound and inspiring to me that it enables me to help them whilst at the same time they are mutually helping me.

Any closing thoughts you’d like to share with readers of Live with Loss?

Orin: Daniel your mission in this world has been accomplished, you have helped save so many lives and helped inspire so many others to try and give the gift of life. So it is now for the rest of us to do the right thing as a true legacy to you and do likewise. And when obstacles arise, you just change your direction to reach your goal, you do not change your decision to get there. Remember the road to success is always under construction.

(Photo courtesy of ACLT)

Orin Cadogan-Lewis was awarded with an OBE (Officer of the Order of the British Empire) in the Queen’s 2012 New Years Honours List in recognition for services to healthcare. Find out more about the work his charity does to promote bone marrow and blood donation at www.aclt.org.

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