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.

4 stages of bereavement

Written by Suraj Shah. Inspired by greatness.

From shock to strength: it does get better

In our day to day lives, loss affects each of us on some scale.

There can be smaller losses such as dropping some loose change from a pocket, or a slight scratch on a brand new car.

At other times there may be significant losses, such as a house burning down, the loss of eyesight, or even the death of a loved one.

The type of loss we will explore here is the one you go through when someone close to you passes away.

Loss that leads to bereavement

Along with loss comes bereavement – a range of feelings over time that arise from that loss.

If you are facing a significant loss yourself, or are seeking to support someone who is going through a major loss, you may notice a pattern of bereavement that is common for many people.

The four stages of bereavement

There are four common stages of bereavement:

  1. immediate shock
  2. unable to accept
  3. depression
  4. renewal

However, keep in mind that we are all different. Grief is individual, and the way and order in which we grieve will vary.

Stage 1: Immediate reaction of shock

As soon as the death occurs, and over the following hours and days, you may be in a state of shocked disbelief.

Alternatively, instead of immediate shock, you may be rather calm and detached.

Either reaction is natural and understandable.

Stage 2: Unable to accept

At this stage, you may think that the person you have lost is still physically with you.

You are unable to accept the loss, and at some level are denying that the death has occurred.

You may make mistakes that may confuse or frighten you. Examples include:

  • waking up and expecting them to be lying next to you.
  • going downstairs in the morning and expecting them to be in the kitchen as usual, lovingly preparing breakfast for you.
  • laying a place for them at the dinner table.
  • calling the family down for dinner and calling their name out too.

This might freak you out a bit, but it is all normal. Daily habits are so deeply ingrained that they will continue to be part of your day.

Stage 3: Depressed and alone

No matter how many people are around you, or how much support you receive, you will have small moments or even long periods of time when you feel lost, alone and confused.

This could span across many many months.

You may question your own faith, your faith in God, faith in other people, and even faith in yourself.

You may lose interest in everything and may want to shut yourself off from the world.

You may question whether even your own life is worth living.

This may be a very heavy and lonely time.

Even this phase passes.

Stage 4: Renewed strength and focus

Eventually, as the pain eases, you find yourself being able to think about the person you have lost, without feeling sad.

This is a chance to recommence life with a renewed sense of strength and focus.

You could continue with old interests, or you could take up new pursuits.

Do you feel disloyal to the person who has died?

Remember that they are always a part of you, and you can allow yourself to enjoy the present.

There was a man whose wife had died. They had been married over 25 years. 18 months after she died, he took up salsa classes and started dating. He had discovered how to have fun again and his spirit was renewed.

From shock to strength: it does get better

From the moment the death occurs, you may feel grief and sadness, but you may also experience feelings of anger, fear, self-pity or even panic.

You don’t need to hide them – they are a part of your bereavement.

Share these feelings with a sympathetic listener – it does help.

Some of your friends may avoid you – this happens. It is most likely that they are embarrassed and don’t know what to say. Be understanding. Take the first step and let them know you need their support.

Grief is a very isolating process – we feel as if no-one could possibly experience what we are going through. But millions of people around the world have been through it, and they are doing fine now.

Whatever stage of bereavement you are at, remember that the pain will pass and life will again be full of strength, focus and joy.