A very special guest post from Julie Lawal
Life sometimes feels like it’s full of hard knocks making it difficult to see what's out there beyond the horizon. I'm facing the toughest challenge of my life and I can either let it get the better of me or I can find a way to rise with courage to change course and soldier on.
For the last 18+ months, my beloved husband Adewale (Wal), has gradually become severely ill with Sickle Cell anaemia, an inherited blood disorder. Recent advances in science and medicine means that curative stem cell treatments are possible for patients with bone marrow disorders. Wal met the medical criteria for a transplant and his clinician applied to NHS England requesting funding to perform the procedure.
After 5 agonising months waiting to hear of the life changing funding decision, we discovered that stem cell transplants are not NHS funded for this particular patient cohort.
This blow fell as hard as concrete. The gauntlet had metaphorically speaking been thrown at my feet. There had to be a way to help my husband; this cannot be the end of the road for us.
I fired the distress signal and publicly shared that this was too big to take on by ourselves. The only way to access this life saving treatment for Wal is to pay for it ourselves and this is costly.
Feeling vulnerable sticking my head above the parapet, I knowingly stepped out of my comfort zone, publishing our story on ‘GoFund Me’ . Exposing this online was a giant step for me learning as I went along Crowdfunding, FaceBook and Twitter all in the space of 7 days!
Initially thinking about asking for help was terrifying but I focused on Wal and saving his life. It doesn’t get much bigger than that.
That first step propelled me to keep walking. No matter how sleep deprived or emotional I became, no matter that I’m running out of ideas for what to do next. Friends soon make themselves known – they’re stepping up at the right time, with a great idea, with a contact, with a cuppa, with a hug, giving me hope that my target might just be achievable.
People were responding to my distress signal – they heard it loud and clear.
I'm feeling the enormity of what lies ahead and to avoid tipping myself over the edge, I think about what I could do here and now to make a difference. Feeling sad one Saturday morning, I jotted some notes, reached for my phone and started recording. Telling my story, straight from the heart.
Then it occurred to me. A video could help other people see and hear for themselves what we're facing. Which only means one thing – it’s got be shared online. And in case you're wondering, this put me in my uncomfortable zone right up to my neck!
I hadn’t realised how much of an impact that video would have on others, including amongst our immediate friends who already knew of our struggle. People felt my courage and bravery as they watched the vlog.
Throughout my life, I have not considered myself better than anyone else and am someone who is generally courteous and respectful of others. It matters deeply to me how people are treated and I stand up for that.
Until recently, I hadn't realised the impact my personal values and beliefs have had on others. I thought everyone behaved in this way too. Turns out, that’s not necessarily the case.
Particularly impactful was an email I received from a colleague, who said:
“There was no second for me to think about not to donate. We both spent so much time together and you will always stay unforgettable to me. We had such a great time and I have learned a lot from you. I'm happy you had the courage to go out into social media and to tell your story and to ask for help. That was the right decision.”
Embracing a positive outlook
I launched my fundraising campaign just over 3 weeks ago, starting from a fearful place of going online with our story, learning new tools, creating a CrowdFund page, creating a Facebook page, writing blogs, to creating a vlog! This builds my confidence to keep going and prepares me for what’s still to come.
Faced with a new situation (that is, little knowledge of fundraising, campaigning, creating an online presence with a very personal story) I found myself applying an effective technique Denise Taylor shared with whilst working together through my Highland Ability Battery assessment report. And that is, tackle one task at a time before moving onto the next; this prevents my mind from jumping too far ahead and becoming completely panic stricken.
I'm feeling ready to cope with the biggest test of my mettle that has ever come my way.
GoFund Me https://www.gofundme.com/donate4Wal