a little taste of my old life

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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.”

 

 

Do as I say – not as your brother does

The response to It Shouldn’t be a Secret has been a little overwhelming. I went from not being sure if I was ready to share the news that Jack was using medical marijuana, to having over 4000 people read the post and fielding tons for phone calls, emails and texts filled with stories and questions.

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Overall, there has been very little judgement. In fact, it seems that everyone has a friend or family member who has used cannabis for medical reasons. Some of the most conservative people I know seemed almost relieved to share their stories that they had hidden away as if they had done something criminal. Wait – in much of our country marijuana IS criminal – THAT’S part of the problem.

The one hint of criticism came in a question asked repeatedly. How did we explain to Anna that her brother was going to experiment with pot?

First – Jack is not “experimenting with pot” – he’s trialing the medical benefits of cannabis (that sounds way more official).

We did approach the conversation carefully, but we were honest with Anna from the start. Anna is only sixteen, and by all means we do not condone the use of any substances by young people, but — BREAKING NEWS — teenagers have seen more than you think. Anna knows people who use pot for other reasons than trying to alleviate the spasms in their feet. She was not shocked by the word “marijuana” and she understands that what’s good for her brother is NOT good for her (or her curfew).

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Also, people need to remember that Anna is not your average kid. She was six-years-old when her family scattered and she was told that her brother might not survive. She has witnessed the reality of life changing overnight and the fact that there is often not a right and a wrong answer when searching for solutions. Instead there is often a “maybe if we . . . “ and “let’s see if this works”. Anna is interested in studying biomedical engineering. It took me a while to truly understand what that means other than many, many years of education post high school. My limited understanding now appreciates that Anna wants to help create treatments to save lives. ALD, cancer, ALS – watch out. When Anna sets her sites on something, she’s all in.

Now that medical marijuana has been a success in our house Anna seems to be wondering less about the smell in our kitchen and more about what in cannabis is helping Jack. The scientist in her is fascinated. Lucky for us, because I’m more interested in the fact that it’s working then why — it’s probably good to have one person in the house who understands the science behind it.

As far as the stigma on marijuana – we’re getting over that. The more research we do, the more solid we are in our belief that marijuana is a remarkable drug with a host of benefits. Just last week, top scientists at the National Academies of Sciences, Engineering and Medicine weighed in on marijuana and it’s health effects. After considering more that 10,000 studies, they concluded that marijuana is helpful for pain relief, muscle spasms related to MS (a disease similar to ALD), and for treating nausea and vomiting associated with chemotherapy. I think it’s time we all take a look at our medicine cabinets and realize they’re filled with far more harmful things than cannabis. Hopefully we will continue to see positive change in policies regarding marijuana (although after today, who knows?).

So, that’s how we handled the Anna situation. We were honest. I’m not sure how Dan and I would have parented teenagers under different circumstances, but we have ended up be the kind of parents who answer questions honestly and openly. Anna might not know every detail of our histories or every decision we make now, but she knows her share, and Anna has turned into quite an incredible person – I guess we’re not doing such a bad job.

Love, Jess

Anna’s not completely without complaint. When I am baking for Jack, she always reminds me that I NEVER bake for her. Sorry.

A Room Full of Duct Tape

I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading

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The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!

I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!

Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.

If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.

The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.

Love, Jess

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another week walking on eggshells

Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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the book, social security and magic

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It’s been high excitement over here for a couple of days. The book is approaching the finish line and there have been head shots, cover art and websites. And, there’s been social media – Facebook has been like a birthday, only better.

In the middle of all of this, I got a phone call. “It’s the Social Security Administration. May I please speak to John Torrey?”

Deep breath, “I’m sorry, John doesn’t speak. This is his mother, Jesse.”

“Mrs. Torrey, John is over 18. I need to speak with him.”

Count to ten, “Sure. I can put him on the phone. You might get a smile out of him, but I can assure you that he will not speak to you.”

I could hear the shuffle of papers in the background, “Okay, sorry. John got approved for benefits. Can you come in tomorrow morning to finish the paperwork?”

My mind raced thinking of all the things I had planned, but I found myself saying, “How early should we arrive to make this as painless as possible?”

That’s our reality. We have priorities that can’t be put on the back burner.

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So, this morning Jack and I left early enough to be there before the Social Security Administration office opened. Determined to get in and out quickly enough so that Jack didn’t miss too much school and I didn’t miss my very important hair appointment. Unfortunately, we were far from the first in line, so we sat. And sat. Jack and I were busy taking selfies and making each other laugh, when I noticed the couple behind us admiring him. Jack has a way of making friends wherever we go. The man offered Jack some gum, which Jack grabbed without a thought and popped into his mouth (yes – Jack takes candy from strangers and I let him). We started talking to the couple and before too long they shared that their son had Down Syndrome and that they felt so blessed that he is not just doing well, but is happy, “Just like your son.”

We talked and talked – enjoying our visit so much, that I was almost disappointed when we got called to meet with our representitive. We exchanged goodbyes and off we went. As Jack and I sat waiting for the paperwork to be done, our new friends stopped by to say goodbye. The man reach into his pocket and handed Jack his pack of gum, “This is for you Jack. Enjoy!”

Jack gave him a high five and I thanked our new friends and wished them well. Then, as he walked away, the man turned around and said, “Oh, and Jack – take your mom out to lunch.”

I looked down at the gum in Jack’s hands and there was a twenty dollar bill stuck in the pack.

Our lives are complicated, but sometimes I feel like magic follows us around.

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We made it home in time for Jack to go to school for a couple of hours and for my hair to get back to being sassy. Now I have the task of reading the book one last time before it gets printed. As I travel back to the early days of Jack’s diagnosis, I am trying to remind myself of all the magic in our lives and just how lucky we are.

Check out my  “author page” – this is really happening!

Love, Jess

PS  We made a donation to CaringBride today. We love to “pay things forward” and without CaringBridge there would be no book.

Being “liked”

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Yesterday I went on Facebook and asked people to “like” Smiles and Duct Tape. I need to explain. I wasn’t asking people to “like” me (not really). I was trying to get more information about who reads this blog. WordPress give me facts about country/age/gender, but I’ve been curious about specifics. I’ve wondered how many were friends, family, Maplewood folks, ALD families, or random people who like counting their blessing that their lives are easier than ours.

As soon as I hit send on my status update, I thought, my family is really going to get a kick out of this one. I have a reputation for needing a lot of positive reinforcement, and this seemed to prove the point. I’m not sure where my insecurities stem from, but since I was a little girl I’ve always needed more than my share of pats on the back. Although I am holding to my “need for information” excuse, there might be a little part of me that wanted to know if my words are worthy.

The most significant reason I write is because it helps me to process this life. Finding the right words is like working on a puzzle. I sit down with something on my mind and write without much thinking – like throwing all the misshapen pieces on a table. Then I start to organize the mess. As I work, I see the picture start to form as the story comes together. I know when the piece is finished, because the picture is clear and I feel lighter. If I can explain what we are going through, it means I’ve solved that puzzle.

But it’s not just for me, I also write hoping that this blog helps other people. Whether they’re families like ours who are looking for their peers or “typical” families trying to better understand what it’s like to live in our shoes. I think people respond to the blog because it’s real stories about a real family. And, there’s nothing complicated about the way I write. I fell into writing without much training and hopefully that makes my style approachable (although my lack of schooling may explain part of my insecurity). A friend once said that she could hear my voice when she reads my blog. That was the best compliment I’ve ever received.

So I write for survival and to help others, but I’d be lying if I said that I didn’t care about numbers and compliments. I do look at the stats every day and smile when I see a new reader or another country pop up on my stats page. I do like when someone reaches out to tell me that they enjoyed my latest piece – like I’ve been able to create some good out of this nightmare we’ve been through. It doesn’t make it worth it, but it helps and I guess I am still that little girl who needs validation.

Smiles and Duct Tape received 130 “likes” yesterday. Thank you! Now, if you can hit “follow” on the bottom right corner of this page, I can really feel like this whole blogging thing matters AND I promise to stop begging for love for a while.

Love, Jess