Month: June 2019

#DreamOn

“It was Earl Bakken’s enduring dream that anyone who is given ‘extra life’ considers giving back – in big or small ways.” Making his dream reality can be achieved by developing a process which extends the invitation to those with the ‘extra life’ to try giving back.

Bakken Invitation Honorees are people who, with the help of medical technology, have overcome health challenges and used their extra life to make a difference in communities worldwide. Honorees demonstrate that with access to quality healthcare patients can become empowered, not only to manage their own health but also improve the lives of others. They are an embodiment of what the dream is, what is possible when you #LiveOn #GiveOn #DreamOn.

Imagining The Dream

Imagine for a moment, recruiting a small number of organisations (aligned with NCDs most probably) and the average membership comes to about 100 per group. –
Each organisation is given access to online resources designed to give the organisation improved recruitment capacity with respect to those who have an NCD. Organisations of this size typically don’t exhibit a sophisticated sign-on ramp. In addition the resources also facilitate the development of all volunteers within the organisation along the lines of the “empowerment ladder”.

Starting at this modest level and with the ambition of a) growing each organisation by 5%p.a. and b) signing up an additional 5% of organisations each year will yield a net increase of those in the #LiveOn#GiveOn group of some 3,300 after five years.

The UK alone could have well in excess of 100 organisations signed up as a nation, so the potential in the International Arena is massive.

Providing the branding and resources does have a cost, however it does not rise significantly with uptake. Making the materials open source would reduce barriers to joining, as organisations could elect to customise their approach (however having to acknowledge the rights of The Foundation). It would be anticipated that being open sourced the whole project could potentially become self-sustaining with sufficient interest.

In Summary

Medtronic Foundation obtain maximum impact for Earl Bakken’s Invitation to those with an ‘extra life’ to give on. Empowering Patients who go on to improve the lives of others.

The subscribing Organisations grow and maintain an empowered group of volunteers whilst providing continuing personal development.

The individuals recruited are given value and meaning in undertaking their roles as well as the ongoing opportunities to continue personal development up the “empowerment ladder”.

Bakken Invitation Honorees will be ambassadors of this wider project to demonstrate the benefits of giving on, as well as working with subscribing/interested organisations and The Medtronic Foundation to generate more interest in their home nations.

When I volunteered for peer to peer work, I did it to see the small efforts I made bring positive change and assistance to others. Removing fear and introducing the possibility of hope where little existed because of a medical diagnosis or event.

Over time I have met a lot of personality types with varied presentations but after a while I became attuned to who was sitting in front of me, even before they spoke. Common Sense told me to let them speak, as they were there to do just that. Probably the bigger part of peer support is letting people getting things off of their chest.

For me to be effective, I need to give a little of myself within a conversation, to show I have my vulnerabilities too and have been on a similar journey. It forms the bond of common experience that brings trust to the table and allows the “magic” of a simple conversation to happen. I’ll make no bones about it peer to peer support isn’t complicated its’ just time and chat.

Whilst I can talk to audiences, my biggest satisfaction is the accumulation of smaller victories by talking to people one at a time and helping them find the solution to their problems. Long term I’d like to develop some of those I have helped, so that they too might experience that satisfying moment when the table is turned and you are helping, rather than seeking help.

In helping others never assume that you will ever stop learning. If you do, you will soon trip yourself up. You also need to contemplate that some lessons will be harder than others. And some very hard indeed. I’ll let the message speak for itself.

Its 6:30pm on a Saturday night and I get a text on my phone, for me that is unusual

Hi, It’s Beth here we met at Cardiac Support Group with my husband Steve.

Sadly wanted to let you know that Steve died before he had his aortic surgery . He collapsed at home and nothing could be done he had a massive aortic dissection . He was due to have surgery but died on the 14 days before the scheduled date.

We are all devastated and all the more so as I know the cardiac team and feel incredibly let down by the system of waiting lists .

Thank you for the time you gave to him that evening he appreciated meeting you

Best wishes

Beth

These are people you have sat down with and shared time with, spoken to them about their future and how it might look? How do you reply, what do you say ?

As the title says “The Hardest Lessons Come Unexpectedly”.

WHY Is This Happening To Me ?

When dealing with the shock of learning of our chronic condition, either through diagnosis or an acute episode, the universal question seems to be “Why is this happening to me ?”. It can be all-consuming, diet, stress, not enough exercise, too much exercise, to much alcohol, too much coffee, the things that go through our mind in seeking the answer are almost endless. It’s partner is the “If” question both looking for an explanation for our condition.

Very often the Medical profession cannot answer this question, they might offer some suggestions but will admit that is often impossible to tell. What has happened has happened and we need to adapt our lifestyles to obtain the best outcome. I know from personal experience that this response just deepens the internal search for a definite reason.

It’s only when we accept we’ll never get a satisfactory answer and put the question behind us that we can move on with recovery and consolidate all those lifestyle changes we should be making. It is not so easily done, but when you can consistently starting looking to the future and not staring backwards, life can start to offer so much more.

#LIVEON

Why Me ?

As soon as we have managed to stop looking for the reason, we start looking for a reason. It’s a different sort of reason, a meaning, a psychological crutch to make it all seem worth while. It is an existential crisis.

With the body physically fixed, this is where some input and support helps as we review our past life, see where we are and what the future holds for us. It’s at this point exposure to the inspirational stories of other patients and involvement in positive projects shapes the road ahead. An illustration that through the negative process we can strive and find positives that didn’t exist before.

Being involved in something meaningful rebuilds our self-worth as we can see we are adding value to the world through our efforts.

#GIVEON

Discovering Why !

At some point we will turn and look back at our journey from that fateful day when our disease managed to get hold of us. We will have that date etched in our psyche but what will be the big surprise is how far we have travelled since then and what we have achieved. We will also look around and see the big community that we are now part of, and that so much remains to be done for others still on their path to this point.

The is the moment when you feel truly empowered, that you can make a real difference, but what ? and how? These are minor details, what you need to find is your why, the vital drive deep within you that activates you and gives you fulfilment. You might call it your mission.

Armed with a purpose you can then decide what you want to achieve, and how you might go about that. If your why is to help further medical research, you might decide to go out and fundraise for the national non-profit. Your why might be to help people in their hour of need and you might do that through joining a Patient Support Group and getting trained to help out there. The list is endless and you will find your place when you discover your why. Armed with your why you can think of creating a positive future. And making a small change to the world in which we live.

#DREAMON

Author’s Note

In January 2019, I was selected to take part in the Bakken Invitation run by The Medtronic Foundation. It took 12 patients from around the world and brought them together to participate in workshops developed to help us tell our stories and to help others along the path from diagnosis.

Earl Bakken, the joint founder of Medtonic Inc, who himself had overcome several medical issues, wanted the Foundation to encourage those who had gone through similar medical events to give back to their communities and to do good works. He felt the world would be a better place for this. The Bakken Invitation was established in his honour. The motto of the program is #LiveOn #GiveOn #DreamOn.