An article I wrote about medical marijuana was published today on The Mighty – CLICK HERE TO READ IT!
If you are an avid reader of this blog you may recognize the initial story, but dig a little deeper – there’s a lot of information. Medical marijuana has been a life-changer for JackO. I hope sharing our story helps other people dealing with chronic pain/spasticity/anxiety/digestive issues – the list goes on and on and on.
Love, Jess
I got a little taste of my old life last weekend.
Two former clients reached out to me about taking some photos. I’ve had the pleasure of doing a few projects over the last ten years, but my days of steady photo work are long gone. Another victim of Adrenoleukodystropy. Occasionally, I get calls from old clients and I usually explain that I’m focused on other things, but these customers wouldn’t take no for an answer, so I dusted off my camera and I crossed my fingers.
Two shoots in one day. It felt strange to be behind the lens again, but as I looked through the work this morning, I smiled. I still got it. I’m not planning on going back to weekends full of families and babies, but it sure felt good to dip my toe into my old life.
I try not to spend much time focusing on what ALD stole from us, but there are some days that remind me of things that we’ve lost. Saturday was one of those days. I’ve been thinking a lot about it and I’ve realized that although I miss my camera, even without working as a photographer, I’m still using that side of me.
I have substituted photography with writing. I approach each in the same way. I have an idea and I troubleshoot until I find a way to achieve my goal – whether it’s catching the sparkle of a giggling baby or sharing a story. And, both photography and writing are about connecting with people. I was a decent photographer, but I think my biggest strength was how I approached my clients. I’m good at reading people and I’m a good listener. I usually managed to make my clients comfortable. When taking portraits you need to have the client feel comfortable with you – otherwise you end up with that lame, awkward smile that we all had in our ninth-grade school photos.
I’m also aware of the comfort of people who read my blog/book. I’m a decent writer, but certainly not trained. I think what people respond to is the voice in my writing. It’s approachable. Whether I am taking about watching JackO win his race at the Special Olympics or how it feels to fight with Social Security or what it’s like to shower your eighteen-year-old son after he has soiled himself, your sofa and the floor (have I written that yet? It’s a common occurrence around here) – I think (hope) I am able to bring people into our lives for a brief moment.
As much as I loved picking up my old life, I think I have settled comfortably into my new one. I’ll take my computer over my camera for now. I need to write to help myself process our experiences and I love sharing with people who are going through similar challenges. I’m putting my camera back in it’s case. Not that I will always say no when old clients reach out. I might dip back into my old life every now and then. Maybe two or three shoots a year . . . maybe four or five.
Love, Jess
PS While I was writing this, I got an email that a piece I wrote about medical marijuana is getting published on The Mighty. I get my share of notes that start with, “Thank you for sharing your piece. Unfortunately . . . . “. It feels great to get a note that starts with, “Thank you for sharing your story “Our Family Secret” with us! We’d like to feature it on The Mighty and make you an official Mighty contributor.”
I do some of my best thinking at night. Thanks to a small (kinda broken) bladder, I wake up often and before I fall back asleep, I often have these brief moments of genius. Sometimes I wake up and laugh at the absurdity of my late night ideas, but sometimes I think I’ve actually stumbled onto something good.
I’ve been fighting a wicked cold and have found my late-night-mind-spinning-time has increased exponentially. Lying in bed, cursing my cough and trying to find my way back to sleep, I’ve been thinking a lot about our boy, ten years and ALD.
I’ve shared our story from the beginning of our journey with ALD for a lot of reasons. Initially, it was to keep people posted on Jack’s progress, then it was for me to process the madness in our lives. BUT I’ve come to realize that one of the biggest reasons that I continue sharing is that I want people to see what our lives look like.
Adrenoleukodystrophy is not a disease you can picture by Googling the word. What you find when you Google Adrenoleukodysrophy is words like “demyelinating” and “metabolic,” and “long-chain-fatty acids”. If you dig a little deeper, you find statistics about boys who develop Childhood Cerebral ALD and men who develop Adrenomyloneuropathy (AMN), the percentage of Addison’s Disease reported, even the effects a carrier can develop. But ALD is not just about these facts — it’s about the people that it touches. They each have a story. Some good, some horrific, some somewhere in-between.
In order to really understand the disease you need to meet the people.
I went to a seminar a few weeks ago (run by Maplewood Cultural Affairs) and the cool, young, hip speakers spent a lot of time discussing the importance of social media in promoting your work/causes/etc. Apparently my time on the Facebook (even calling it THE Facebook) was getting a little dated. The seminar gave me an education on Instagram, Twitter and hashtags.
I came home and tried to figure everything out and thanks to my personal IT person – Anna – I got some extra schooling on Twitter and Instagram and finally understand what a hashtag is (FYI #hashtag is not a cool thing to tweet).
I started not just adding #smilesandducttape to archive my writing/photos, but I added #THISiswhatALDlooks like.
A few nights ago while coughing uncontrollably I thought – wouldn’t it be cool if all the other ALD families did the same and we could have a giant archive of who we are? Not just the boys post-transplant with complicated lives, but the boys who have hope thanks to New Born Screening, and the boys on Lorenzo’s Oil, even the boys who have lost their battle but are still alive in the hearts of their friends and family. AND, I picture it being not just our boys, but their siblings, their families, their community.
I’ve come to know many families with our disease and each has a story. I would love it if we could band together and introduce ourselves to all of you. I think if the public can SEE our disease they will understand it more.
Let’s see if we can get this to work – could all the ALD families out there use #THISiswhatALDlookslike to show the public the PEOPLE behind the disease?
Love, Jess
OK – awake Jesse has done some digging now that I understand this whole hashtag thing. #savetheboys #adrenoleukodystrophy #fuckALD and #aidanhasaposse are 100 steps ahead of me. Not just archiving family photos, but starting a movement to save our boys. Not sure if I am helping or adding to the confusion here. You tell me.
#THISiswhatALDlookslike
I have all these words swimming around my brain today – audience, organic, engagement, analytics, platform. I’m trying to quickly sort out everything I learned at the Blogher15 Conference before my brain returns to focusing on my usual words – laundry, diapers, groceries, medications, and reality television.
When my friend, Brooke Lefferts http://www.carpoolcandy.com, encouraged me to sign up for the conference, I was intimidated. Then I remembered that she had motivated me to audition for Listen to Your Mother and that seemed to go well, so I dove in.
Friday morning I boarded an early morning train with Brooke, our new friend, Christine Carlisle http://www.chewnibblenosh.com, and what seemed like thousands of commuters. We found our way to the NYC Hilton, signed in and were given our badges. I felt like an impostor, like at any moment I would be asked for proof of being a “real blogger”. Luckily, there was no security or verifying of site stats.
I believe strongly that people laughing WITH me is far better than people laughing AT me, so I played the role of naive newbie as I stumbled around the conference. I did get more than one laugh referring THE Twitter and asking how one would find their “analytics”. Truthfully, I didn’t need to put on much of an act — I was out of my league. But what option did I have? There is no Blogher for Dummies. So, I laughed my way through the speeches and sessions and managed to get a ton out of the experience. I left the conference with a pile of knowledge, a huge amount of motivation and some new friends.
Introductions are constant at any conference and this one was no exception. Cards were thrown around like confetti at every opportunity. I quickly learned that “parenting” is a very crowded space, so in an attempt to differentiate myself form the “twenty ways to pack a healthy lunch” category, I started to describe myself as a “special needs blogger”. That was greeted with sad faces, so I changed my approach. “I write about my family. How to have a normal family with a special child.” Positive, upbeat and honest.
The conference was full of incredible speakers and activities, but the most meaningful moment for me came at a session I attended called Storytelling about Special Needs Parenting and Disability. The first speaker was not a blogger, but a parent. She’d lost a child and has another with special needs. She referred to herself as “a silent reader”. Wandering her way through the internet searching for people who could relate to what she is going through. I was that person eight years ago. Desperate to find my peers – people who understood me, people who could help my family navigate through this new and rocky territory. My goal for Smiles and Duct Tape (both the blog and the book) is to help people learn that even when life takes crazy turns, that it doesn’t need to derail your family. You CAN HAVE A NORMAL FAMILY WITH A SPECIAL CHILD.
So, it’s time I broaden my reach (sounds fancy, right?). Please help me spread the word.
Thank you Brooke!
Love, Jess
After two long days we enjoyed a great dinner. Meet two other great ladies and incredible writers — Amy Byrnes http://www.amynameisamy.com and Emily Nichols Grossi http://www.em-i-lis.com.
smiles and duct tape 