She believed she could so she did! Meet Melissa

Celebration of Doers

30 May 2019.

A special event recently brought together a group of ‘doers’ helping to grow a movement of people who have a long term health condition or chronic illness in common. The idea of the event was simply to celebrate how far they’ve come over the past few months.

The Saturday afternoon shindig was hosted inside an impressive shop front theatre that inhabits a once disused retail premises in a Coventry arcade.

Celebration of Doers
Melissa (centre) at the Celebration of Doers

Setting the term ‘disused’ to one side, it could almost be a metaphor for the transformation undergone by the woman who organised the ‘Celebration of Doers’ – from teacher, to patient, to community organiser and social entrepreneur.

To tell Melissa Smith that in just four years she’d grow a community of thousands based around the idea that creativity boosts wellbeing – and have won an ‘Inspiring Entrepreneur’ award from Coventry University and Santander – would have been met with complete disbelief. It has been a long and often painful road.

Following a spinal injury after a routinely energetic gym session and subsequent injury at work, Melissa was diagnosed with a rare, incurable condition called Symptomatic Tarlov Cyst Disease – painful fluid-filled cysts rooted in the vertebrae at the base of the spine.

So rare in fact that it took many months and numerous appointments to convince specialists that the condition was the problem and not underlying stress from a recent close bereavement. Melissa also later developed ME.

Even with a diagnosis, Melissa’s life became a waiting game – for the next appointment, consultation or surgery and all the while focussing on every symptom. Her teaching career was over. But some tough love from her older sister (who also works for Grapevine) provided the impetus she needed to take a love of art and turn it into a business.

“I didn’t want to swim or do yoga. I wanted to put on my pink gloves, box, flip tyres and do wolf runs. But I couldn’t any more. I was living my story but without a call to action. I was struggling.

“My sister said I should focus on what I can do, not what I can’t. So my passion for using creativity as a tool to feel good became my reason to get back up. Doodling with my pad and pens had seen me through many dark times in hospital and at home.”

Self portrait by Melissa Smith
Self portrait by Melissa Smith

Armed with a grant from UnLtd and the community building tools she was learning from Grapevine, Melissa started to carve out a name for her Feel Good Community both on and offline.

Self Care Social came along a few months later with some funding from the NHS’s Integration Better Care Fund and Grapevine employed Melissa. The idea being that self-care when you’re poorly is hard to practice alone at home and much easier to share with others who understand. Although, it is sometimes hard to attend the social side of Self Care Social, no-one is ever ‘written off’ and they can come when they are able.

And now this is Melissa. A fully fledged community organiser, movement builder and social entrepreneur in the making. It may take her a bit longer than other people (her own words) but she will get there, altering direction slightly with new challenges but always on course.

She’s bringing a Festival of Creativity and Wellbeing to life at Coventry’s Herbert Art Gallery and Museum on 15 June with her friend Kerry. Feel Good product development and an online shop are also coming soon.

Melissa Smith
Melissa

Back at the celebration party, if anyone understands what it takes to show up and get on with things, it’s Melissa. Gathering these people together for a fun few hours of sharing games, food, creativity and stories seems a fitting way to mark everyone’s achievements thus far.

“I’m meeting more new and different types of people than I ever would have as a teacher.

“I think now that becoming poorly was a catalyst for creating change in my life. I had thought there might be a cure and that doctors would have all the answers.

“The challenges I’ve faced have brought creativity, community, positivity and a new outlook for me. A new way of doing things.

“It’s given me a voice and Grapevine has given me the platform to do all this. They’re willing to take the risk on ideas and people like me.”

We’re celebrating Melissa’s story as one of our 25 stories for #25yearsofGrapevine sparking community action, strengthening people and shifting power in Coventry and Warwickshire.

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Gaynor’s story – from self-doubt to self-belief

21 May 2019.

The third in our series of 25 stories for 25 years of Grapevine is the story of Gaynor Leech.

Gaynor was diagnosed with breast cancer in 2010 and as a result of radiotherapy treatment the following year, she developed Lymphoedema – a life-long condition that causes swelling in the body’s tissues.

Although there is no cure, it can be managed and treated but this has meant a huge change in lifestyle for Gaynor. It hasn’t held her back though from establishing a community of help for others with the same condition. And this is where Grapevine comes in.

Gaynor (centre) with Melissa and Dawn from Grapevine (left and right)

Her involvement with Self Care Social, Feel Good Ambassadors and the Collective Leaders Group has in her own words, “transformed the way I think about volunteering. I have found a way to incorporate everything I have learned from Grapevine into my lymphoedema support group.”

She admits her approach to running Lymph-What-Oedema (L-W-O) had previously harked back to a time before the internet where geography determined reach and having a platform to share stories on a much wider scale simply didn’t exist. Gaynor takes up the tale from her first Innovation Factory with Grapevine…

“I am fortunate, I do not have a problem in walking into a room full of strangers, but it was clear from the start that this was very different from anything I had ever attended before.

“I had struggled with both the business side and getting our voice heard in the community.

“I was so out of my depth and comfort zone on the first course but it really did change my thinking. There were so many ideas, the language used was different, the importance of storytelling, the pledges all very new to me.”

Gaynor is now a Self Care Champion

Helping people and communities use their untapped power to create better futures – strengthening through natural networks of community support that bring opportunity and help people take charge of their lives is what Grapevine is all about. This has certainly proved true for Gaynor.

“The most important aspect of working with Grapevine is the people I meet. Each and every one of them either lives with a long-term condition or takes care of someone who has a challenged life, and yet they are passionate about helping others with daily challenges.

“I come home feeling inspired and this then reflects in my approach to life and volunteer work. Through the storytelling, I can see how my writing style has changed.

“Living with lymphoedema can be very isolating so working on social self-care is very important to my group. A place where they will not be judged and a place where we can share knowledge, information and community. I do not want others to feel the way I did when I was first diagnosed.

“All of this progress aside, I was still surprised – and thrilled – to become a Self Care Champion for the Self Care Forum recently.”

For those in similar situations, Gaynor’s advice is to “look around at your local community, network – see who is out there, ask for help. See if there are organisations that are of similar size to yours or with the same ethos.

“The training I have received from Grapevine has been invaluable – the connections you make will be one of your biggest assets.”

And what does the future hold?

“The journey of living with lymphoedema and running L-W-O are things I would never have envisaged for myself. Even with all the knocks and frustrations, I love what I do, I love that I have a purpose in life and while I do take good care of myself, I love being busy. Importantly, I love that in a small way L-W-O has contributed to raising awareness of lymphoedema.

“Thank you to Melissa, Naomi and Dawn for the encouragement, help, patience, time and support that has helped me transform my thinking of volunteering in the 21st century voluntary sector.”

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‘Crafting’ community the Grapevine way

Bell Green library arts and crafts group

17 April 2019.

A purl-er of an idea from two women who met at a Coventry knitting group is blossoming into a network of friends coming together weekly to chat, craft and overcome isolation.

Even when one member is having a bad week or thinks they may not show up, the others rally round and they come anyway.

So how did the arts and crafts group start?

Michelle, from Grapevine’s Help and Connect project, met Tracy at Bell Green library’s knitting circle – a large, animated, all-female group who gather each Thursday to swap skills and put the world to rights.

Although beneficial for many, Michelle and Tracy felt the dynamics weren’t quite right for quieter voices who needed time to talk and get to know others first.

The ladies they were thinking of had learning disabilities, long term health conditions or different experiences with their mental health.

So the duo took a shared love of arts and crafts – plus a generous helping of Tracy’s personal craft supplies – and set up a new, smaller group on a different day.

Still at the library, the two-hour Tuesday session provides a space to create and catch up on the week’s events, lending an empathetic ear, advice or practical support as needed.

There are five core members (including a man now) of the purposely select group, meaning it remains safe and supportive – no posters on a notice board here. Everyone involved is accepting of one another’s differences.

Tea and crafts at the library
Members bring a contribution towards refreshments

Its need is undeniable as people regularly arrive early and leave later than the scheduled finish time. The session helps them feel more connected.

The library location has stuck because it is local and accessible even on days when it can be hard to leave the house. The library provides hot water and the group brings the tea, coffee and biscuits.

The five have also enjoyed Christmas lunch together at a local café and a cooked breakfast at another eatery across town.

Tracy windmill painting
Tracy’s latest painting

Encouragement was evident at the session we attended when painting was on the agenda (other crafts have included Christmas decorations and 5D art) as Tracy coaxed: “If you always do the same thing, you never stretch yourself and you never find out what you can do.”

A fitting way to sum it up we thought.

Michelle recalls another recent exchange with Tracy along the lines of: “Are we doing something good here then?” – to which Michelle replied, “You don’t realise the impact this is having on people!”

From small gestures, come big things. And when Michelle moves on to help others get connected, she can be sure the group will continue.

Help and Connect by Grapevine is commissioned by Coventry City Council.

We’re celebrating this story as one of our 25 stories for 25 years of Grapevine. Look out for more stories and a big event coming this October!

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No ordinary gig…

The gang

2 April 2019.

An early Spring evening in Coventry, the last Saturday of March. Crowds are arriving for a gig at a former coal storage bunker in the city’s Canal Basin, now a thriving music and arts venue.

Molly and Kirsty on the door
Molly and Kirsty on the door

But this is no ordinary gig – it’s months of hard work come to fruition to take one troubling statistic and make inroads into changing it.

This is the first Coventry Youth Activists (CYA) #CYASaturdays gig, a campaign aiming to challenge the fact that one in three young disabled people spend less than an hour outside their home on a Saturday. A day when most other people are out and about enjoying what the weekend has to offer.

The story behind the statistic tells how for some of these young people logistics can be the problem – wheelchair access for example – and for others, fear of the unknown, not knowing how to find the place they want to go to and what to do once they get there, stop the fun before it even starts.

Some of CYA chat before the gig
Some of CYA chat before the gig

So Grapevine’s youth democracy group set about doing something about it and everyone – CYA included – has been amazed by its success.

#CYASaturdays Presents SOLD OUT with over 100 gig-goers of all abilities coming to The Tin Music and Arts event on 30 March.

It showcased three acts, all donating their time for free, plus inimitable double act Rishard and Richard (referring to themselves as Coventry’s answer to Ant and Dec) compering the night.

Rishard and Richard
Rishard and Richard

Young people came from all over the city, finding out about the event through social media, events and meet ups and school mailers. Some came with family, others with friends and some had never been to a gig before. Three even got up on stage to sing!

One Mum commented that her son enjoyed the gig and for her “it was important as it provided an opportunity for him to be a 14-year-old.” And that’s the whole point really.

The CYA ‘crew’ wore their trademark yellow t-shirts firstly to offer a point of contact for anyone feeling unsure and secondly so they could rightly own the success of the night!

Izeidi Izeidi perform
Izeidi Izeidi perform

But they didn’t do it alone. So a big thank you to the venue, to the acts Izeidi Izeidi, Duck Thieves, Lily Hayes (from CYA), Rishard Beckett and Richard Walls. And of course, everyone who came and had fun! Until next time… [mic drop].

Photos by John Whitmore Photography.

About CYA and Grapevine’s 25th anniversary

CYA is a group of young people of all abilities who want to challenge and change inequalities faced by themselves and others.

Their numbers have grown from two when the group was first funded by the Henry Smith Charity in 2017 to 17 this month.

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We’re celebrating their story as the first of our 25 stories for 25 years of Grapevine. Look out for more stories and a big event coming in October!

CYA are meeting fortnightly to progress their next #CYASaturdays ideas into plans and action. Want to know more, get involved or offer help? Check them out on Facebook, Twitter and Instagram or email mgillespie@grapevinecovandwarks.org