I've written before about my "Australian soulmate", but in case you missed it, here is Kate's spotlight, While there are many similarities between us (including Spondylitis), a central one is our endless love for family. Kate is in the middle of her two sisters, Emily and Meredith. I've joked that I'd love to be the fourth sister and somehow they've made me feel like I am.
Recently Kate suggested expanding my "Spotlight Series" to include not only people living with chronic illness, but to their loved ones as well. I thought her idea was fantastic, especially since a central element of my blog has been discussing the relationships that have sustained me. Luckily Kate's youngest sister Meredith hopped right on board and I'm grateful for her enthusiasm! While we may be the ones physically enduring our illnesses, it can often be just as hard on the people who love us. After watching my family, friends, and John this past year as I struggled with my health, I'm more sure of that than ever. I'm infinitely grateful for their strength and support no matter where life takes me.
Meredith is 14 years old and in the 9th grade. Soon after I began e-mailing with Kate last year, I was also in touch with Meredith. I've loved learning more about her plethora of interests, but the one we've discussed most is her love of writing. Her work truly illuminates what a uniquely beautiful soul she has. She has even sent me some original poetry, including this poem about my friendship with Kate...
Kate & Maya
Each day’s an unknown abyss,
So deep you can’t see the end,
You just have to stumble blindly through,
And make your way carefully round the bend
No one else quite understands
What you feel each day,
Well, that’s what it had been like
Till you found someone through the haze
Your pain, your anger, your shadow
Is the reason you found each other,
But neither of you would trade it in
For the refuse, the safety, the cover
On different ends of the world,
You live distantly, far away,
But the invisible force that connects you
Beats the distance any day
To get a text in the morning,
or an email at night,
Is better than any medicine,
That helps win the fight
You’re both wonderful people
Fighting the same battle
I will always look up to you,
Like calves look up to cattle,
Strong and courageous,
Knights in shining armour,
Believe it or not,
Who in your life is living with chronic illness? Please say a bit about the disease itself and when they were diagnosed.
The person in my life living with chronic illness is my sister, Kate Brabon. She was diagnosed when she was 22 years old with Ankylosing Spondilytis (AS), which is a form of arthritis that primarily affects the spine, although other joints can become involved (what other joints can become inflamed vary from person to person). It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort.
Our relationship is very strong. Kate means the world to me. I don’t know what I could do without her, without having her by my side everyday. I know that I would be a very different person if I did not have her in my life. We do heaps of things together. Now that I’m back at school, I can’t see her during the day, but often at lunchtime I’m on my phone, and my friends don’t even bother to ask who I’m messaging because they know what the answer is going to be. Kate.
I think it has. I think that there was a period of time when Kate’s pain controlled her, which put a wall between us. But over the past year, this wall has been knocked down, and now we are closer than we have ever been. I think in a way Kate’s illness is a blessing in disguise for a number of reasons, one of them being that now she feels she can talk to me about anything. And the same goes for me.
Feeling like you can’t do anything. Watching them in pain, and not necessarily being able to say that everything will be alright, because you have no control over it. Talking can be hard too, as it’s not easy knowing what to say, or what the right things to say is. But just keeping positive is the best thing you can do. You just need to learn that there are actually ways you can help, as little as they may seem.
Where do you get your strength?
Music, writing and other people. And from learning new things.
What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?
Don’t distance yourself from them. Even if you feel like they don’t want to be around you, or even if you feel uncomfortable being around them, they need you and they want you there. When Kate’s pain was first especially bad, I felt uncomfortable because I didn’t understand. I didn’t know what to say or do. So I didn’t do anything. I distanced myself from her because I thought she didn’t want my company. But I learned. I realised that just being in the room, giving a hug can help. When we were away on holidays, there was severe humidity everyday, which Kate’s body does not cope well with. I think she was in more pain that I realised. But because I was on holidays, living in the moment, I wanted to have fun. So I stayed with her, being cheerful and helping wherever I could. I realised that having a good mood, and spreading it around is a great way to get her to feel happy.
If you could send one message to medical professionals around the world, what would it be?
Be supportive and straight to the point. Don’t let your patient feel like you don’t care, or like they are a bother. And let them feel welcome to ask questions. So basically, overall, remember that they are not just a patient, but a person, and you need to be as helpful as you can, giving the best help you can both medically and morally.
I'm hopeful that Meredith's spotlight will be the first of many. Do YOU love someone who is living or who has lived with a physical or mental chronic illness and/or disability? Would you like to tell your story? If so, please contact me at firstname.lastname@example.org. I'd love to hear from you!
Meredith: Thank you so much for your thoughtful answers and for supporting Kate the way you do. Your presence is a true blessing in her life (and in mine too!)