Designing my Own: An Interview

Linda came to me around 12 months ago, with an unusual enquiry. She had a life limiting illness and wanted to design her own Order of Service, rather than leave it for her family to do after her death. A brave, inspirational and truly lovely lady, she asked if I could help her, and it was a real privilege to do so. The booklet we were able to create was unbelievably special, and I felt strongly that such a personal farewell would give her loved ones huge amounts of comfort after her death – so I asked her if she would talk to me about her decision to do it, in order to inspire, reassure and help others who may be in a similar position and might want to do the same. Here she is, this remarkable and creative lady, in her own words.

Linda, this must have been a difficult and emotional task to undertake – one that’s hugely brave but also incredibly inspiring. What were your main motivations for wanting to do it?

Well, I wanted to create a really personal goodbye, with things that reflected my personality. I wanted to create a memory for others that would give comfort to them when they received it, because they would know that it was something that I had put together and really wanted to leave with them as a lasting memory of me. I have a lot of people in my life who wouldn’t be able to attend a funeral service, because they are ill themselves or too far away, so I wanted something special that could be sent to them too.

I had planned out a funeral service a few months before with my vicar, and I knew which hymns and readings I wanted, but I also wanted to add additional things like my favourite song lyrics and quotes. I wrote a poem myself to go in it, along with other poems that were important to me and bits of prose. Also a photo of a paua star I’d made from iridescent shell fragments from New Zealand, where my sister and husband lived for many years.

I also wanted to choose the pictures that would go into it, and for them to be ones of myself that I really wanted people to remember and that were truly special to me. For example ones of significant occasions in my life; my sister’s marriage, happy times that I was together with various members of my family and ones of myself that I particularly liked.

Linda as a child

Beaming for the Camera!

Maybe a bit vain, but I didn’t want my family to choose photos of me that I didn’t like! I chose one of me as a toddler for the back cover because it was taken in a photographer’s studio and I screamed all the way there and then when the photographer took his picture I beamed, and then I screamed all of the way home – so it always makes me laugh when I see that photo.

I didn’t want to burden my family and I didn’t want them having to guess what I would want. This way they will know that this is what I wanted and I hope that that will give them solace. There was also an element of wanting control over things. I think because I don’t have control over my cancer, I don’t know how it’ll spread or how long I have yet to live, it gave me some peace to find something like this that I did have control over.

Finally, visual things are important to me. Throughout my life colour and design have been a great love and I knew that despite it being a very emotional experience at times I would also find it satisfying and fulfilling at a deep level to help put it together and see it complete.

How did you feel when the process was complete?

Well, I did feel a relief that it was done and accomplished. I felt somewhat apprehensive when the envelope arrived with the proof copy, but on opening it, reading through it wasn’t as hard as I’d expected and I actually enjoyed it because it was so beautiful. It was a feeling of satisfaction. comfort and reassurance to see that it was just as I’d wanted it to be. I wouldn’t say it was exactly a pleasure, but it was a gratifying feeling to be able to do something that would make a positive difference to a very bad situation and make people’s lives easier and give people comfort; so there was satisfaction that I had achieved exactly what I’d set out to achieve. You were such a large part of helping me at every stage and the finished results were more than I could have hoped for.

I know that since we worked on your booklet together, your illness has developed quite a lot. Does the new prognosis change the way you feel about having done it?

Well, I was glad that we had worked on it and done it in the earlier stages of my illness because at that stage I felt more detached and distant about the prospect of my dying. Now, with my new prognosis I think it would be harder to do, but I would have still wanted to do it anyway, if I hadn’t done it previously. Now, when I know my time is really limited I want to spend it doing meaningful things both for myself and for my loved ones and I am very much focused on that in a way that I wasn’t before, when the prospect of my dying seemed quite remote.

In addition it was helpful for me to do it at an earlier stage before my health had deteriorated too much. If I’d have left it till the very late stages of my illness I wouldn’t have been able to manage to work on it so thoroughly and achieve what I wanted. So even though it is quite hard to think about your passing and what you want when you are relatively well, for me it was the best thing to do because I knew that I was capable of doing it.

You have said that you haven’t talked to your family about the booklet as yet. What were the reasons for not doing so?

A favourite Quote of Linda’s

I think when you know you have a terminal illness you have a natural instinct to protect your family from your more difficult and painful feelings and it is very hard to talk about your dying and what would happen afterwards. It’s deeply emotional and you fear upsetting them, and also it’s upsetting for you to talk about it. I think mortality is a difficult subject and painful for everybody to face. While I am still here and alive, myself and my loved ones naturally want to focus on my living, not my dying, although for myself I need to do some of that and think about it for my own peace of mind. I have always been somewhat of a planner! Something that I read in a Diana Athill book recently, (a memoir Somewhere Towards The End) was that we are fully alive up until the moment we die and so this is why I think it’s a very hard subject to broach. But I do plan to talk about it to them, when I feel the time is right – which will be probably when my health starts to decline dramatically and I know there aren’t really any treatment options left for me, and they will be thinking about the time of my death. So it’s a conversation that I fully intend to have and I think that although it won’t be easy, showing them the booklet will be a helpful thing because they’ll know that it’s what I want and it will help us feel closer to each other. When I show it to them we can talk about the photos that I’ve chosen and remember those happy and important times when they were taken and relive it together. I ultimately view it as a conversation that will be enriching and very positive, but it’s not one that I’m ready to have at the moment.

Did you have anyone else that you could go to for emotional support and discussion whilst going through the process?

Yes I did and it was absolutely vital to have somebody else who really knew me and was close to me – but who had enough distance that they wouldn’t find it too upsetting. You were an enormous help as well, but the person I chose to tell about the project was my helper who is my carer and helps me with other daily activities. She is a bit more detached and she is also somebody I could be totally open with and I knew I would get her honest opinion on things – and that she wouldn’t hold back if she wanted to say something. It was really important to have somebody there that I could talk to through the process who would help me look at the photographs and choose which ones to pick, and when I made decisions with you, someone I could discuss them with afterwards. She is a very artistic person so I valued her opinion on the design details as well as the emotional ones. I think it would have been very hard to do this completely by myself. I think you really need to take somebody into your confidence who you trust 100% and you feel close to so that you can share the ups and downs and the happiness and the sadness of putting the booklet together, and get that invaluable support.

There must be many other people in your situation who might want to do their own booklet, but don’t feel able to, or don’t know how to approach it, and to whom reading this will be a huge comfort and help. What advice would you give to them?

Well, I would obviously want to encourage anybody who feels that it would be a real benefit for them and their families for them to prepare a booklet in advance. It’s got to feel right for you to do it and you need to feel ready to tackle it. I would say don’t try and do it all at once. Take time to do it as and when you feel ready to, and do it in stages.

I had a break of a few months between deciding on my funeral service – the readings and the music – before I thought about the booklet. Although my cancer was Stage 4 I knew the treatment I was on was giving me some extra time, so I was able to do this. I think if you try and do too much in a short time it becomes quite overwhelming. So that’s another piece of advice – allow yourself breaks when you don’t think about it at all and then when you feel ready, come back to it.

I made a mock booklet and I printed out various photos to stick in. This was a big help to decide which photos I wanted where, and the beauty of having a bespoke arrangement is you can have everything exactly as you like. It obviously helped that I had planned my funeral service already so I was already able to add the readings and music in, but I don’t think it matters if you haven’t, just include as much of the service as you know.

Another favourite Quote

I would say also think about anything that will make the booklet particularly personal to you; your favourite quotes, song lyrics or poetry or family sayings – and when you’re thinking about photos, think about ones that are taken at significant life events, maybe ones when you were a child – and include ones with you and your loved ones in it where you were all happy and smiling, preferably!

And I would definitely say to take somebody into your confidence to help you. Somebody who won’t pass judgement on the fact that you’ve decided to do this but will be a help in making all the decisions and whose opinion you value. If you have a family member that you can talk to about it that’s great, but I wasn’t ready to do it as I earlier described – so I think a friend, where there’s a bit of distance, but who’s close enough to know you well and have love for you, and be able to be honest. It’s not an easy emotional process because it is difficult to think about your passing but for me it has been a rewarding and enriching experience and has given me a sense of fulfilment – and in a way, pleasure, knowing that when my life is over, I will feel easy about the fact that I have done this for people as a memento in the future and there will be no sudden last minute anxieties or decisions to have to make about any of it.

I found the process quite therapeutic in a way, in that going through the photos made me look back and re-experience all the good and happy times in my life and remember how close my relationships with my family are and that has balanced dealing with the illness. Making the booklet has shown me more about who I am and that I am so much more than just the illness, and this is something that can keep me balanced and strong, when faced with the fact that I don’t have control over my health.

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