The most difficult part of my Lupus journey has been letting myself accept my vulnerability.
I love being in control. It is a lot more than being a control freak. It goes as far as avoiding feeling vulnerable in any way. It also means avoiding putting myself in a position of vulnerability. For example, I double check that I have the correct bus fare before I get into a matatu. If I’m meeting someone at a restaurant, even for a date, I’ll only order what I’m sure I can pay for. It can be exhausting!
When my illness started escalating, it became more and more necessary for me to let other people support and take care of me. You have no idea how terrifying this has been for me.
The problem with letting yourself need someone is that they can back off and leave you hanging off a ledge. It’s a risk you have to take. Chances are they won’t. Chances are they will.
The rewards out of letting yourself feel vulnerable, and accept the love and support of your family and friends is immeasurable. The sense of belonging interchanged, bolsters a network of family and support for not just yourself but others too who need it. For me, and my little family what it’s meant is more creativity, more co-designing, more growth on a personal and community level.
Let me break it down.
On September 20 2015, I had a major cardiac event as a result of Lupus (Systemic Lupus Erymathotus). In typical Juliet Maruru fashion, I was embarrassed by my illness and asked my mother not to tell anyone outside the family. I went through months of treatment for heart disease and for Cushings Disease without letting too many people know about it. I had asked my employers for time off from work for medical reasons but that’s about it.
In January 2016, I told a friend I was feeling lonely, and having a hard time being housebound because of the Lupus Flare. So my friends started visiting more.
In February 2016, I told 4 friends that I was broke and I couldn’t cover my medical bills anymore. In March 2016, they held a fun fundraiser that included poetry, reading, music and storytelling. KES 98,000 was raised that went to cover my immediate medical bills in Kenya. It wasn’t much but it was just enough.
In April 2016, the She Blossoms movement was born, and it morphed into the #SheBlossoms Lupus Awareness campaign in May, which culminated in the POP Lupus Awareness Walk on May 20 at the Nairobi Safari Walk. I had become the somewhat informal Lupus Awareness Ambassador.
Since then, there have been 2 stream of activities going on in my life. My health care, which included the first trip to India, and a second trip planned for mid September post-chemo is the first stream. (Please see details of my online fundraiser here.)
The second and very important stream, is the Lupus Awareness Campaign. To me, and to the people round me, raising awareness about this cruel disease and helping people get an early diagnosis are very important goals. Long term goals are to lobby for government support in healthcare reforms and lupus research. But baby steps, for now. There are other periphery interests for people living with chronic illness; employment, insurance, tax relief and so on.
It started with accepting my vulnerability, and it has grown into an inspired dream.
Update: Peter Elungat, artist extraordinaire, and an amazing human being, listened to my Lupus story and made the incredible decision to donate a painting called The Untold Story to my medical bills fundraiser. (Thank you so much, Peter Elungat!)Update 2: I am humbled and honored that a second artist, Ndeithi Kariuki, has been moved to offer one of his own paintings to be added to the medical bills fundraiser.
For viewing and purchase information for both paintings please contact Ms. Elizabeth Maruru on 0722580936 or email firstname.lastname@example.org
P.S. The She Blossoms team is a very small family that would be happy to welcome new family members who have skills/resources in events organising, photo/videography, web / graphic design, accounting, social media strategy & legal strategy. Go on write to us/me at 📩email@example.com
P. S. 2 : Please share this post with anyone who might be interested in volunteering skills or resources to a Lupus Awareness Campaign.