Last week I received an email from one of Corey’s best friends, Amanda Stoerman. During one of Amanda’s routine visits to her dermatologist she found out that she had melanoma, which can be one of the most deadly forms of skin cancer if left untreated or not caught early enough. I asked Amanda if I could share her story on my blog in hopes that her words will save someone else and she said yes.
I think of you and your family very often and read your blog regularly. You have such an amazing ability to capture your experience and inspire others to live a life of grace and make the most of the time we are given, which makes me want to share a story of mine with you…
I think I mentioned once when I was visiting that this past March I was diagnosed with Melanoma, which can be the most deadly form of skin cancer if left untreated or not caught early enough. Needless to say, it was a very scary time. However, because I get regular skin checks with a dermatologist, we caught it very early and they were able to cut it all out. All I have now is a decent scar on my back, check-ups every three months, and a new appreciation for sunscreen!
At first I didn’t really tell anyone (minus close family and a couple friends) about what was going on because it was scary and emotional for me to talk about. But then one day I read your blog and realized how special and important sharing experiences can be. So I made a post on Facebook sharing my story along with an impacting video of people wishing they could tell their 16-year-old selves to be more proactive with their skincare. It felt good to share my story and spread the word about proactive health and regular dermatologist visits, and many people liked and commented on the post.
However, I did not realize the real impact my story had until last week when I received a message from a Facebook acquaintance who had seen my post and because of it, scheduled a visit to the dermatologist. At his check-up he had three moles removed and one came back positive for Basal Cell Carcinoma, a form of skin cancer. He told me how he was able to catch his skin cancer early because my post prompted him to make that appointment and thanked me for taking the time to share my story. Wow! This made me realize how important it is to share our stories because we never know how it can impact others.
So Rosemary, please know that your posts and stories are doing the same thing for so many others. It’s amazing what meaningful words can do to inspire and motivate people. I’m so thankful for you. I love you and your gracious heart.
After the Supreme Court’s same-sex marriage ruling last week Corey wrote a post on his blog about what it was like to grow up gay and it made me feel the same overwhelming sense of sadness that I felt five and a half years ago when he first told us. I felt so sad because he thought that he needed to keep this secret to himself for most of his life for fear that no one would understand. I’m so glad he’s happy now but I still wish no child ever had to feel the way that Corey did.
This morning in a place where laws are made a handful of people in robes decided that men can marry men and women can marry women in every single part of this big and beautiful country that I live in and my Facebook and Instagram and Twitter feeds exploded with rainbow-colored messages of hope and love and pride and I was happy and I liked a lot of things and I favorited a lot of things and as I got under the covers tonight in the guest bedroom of my parents’ house in the small town that I grew up in I thought about how, for a great long time starting when I was very young, I was at war with myself because I knew that I was different and I didn’t know anyone else who was the same kind of different and I didn’t want to be different in this way and so I hid it for years and years and years and then one day too many years down the road I decided that I couldn’t hide it anymore and I told someone and then I told another someone and another and another and another and soon every someone that I loved knew this thing about me that made me different and every someone that I loved still loved me back and suddenly I wasn’t at war with myself anymore and I felt lighter and a great many things felt easier and I started to think about my future in ways that weren’t sad or scary but happy and hopeful and so now, on days like this one, when anything and everything seems possible, I’m reminded of that sad little boy who carried so much hopelessness around in his heart and I get overwhelmed for a moment as I recall the dread and the fear and the tears and the wasted time and the worry and then I take a breath and remember that because of days like today some other little boy from a town just like mine will grow up never hating a great big part of himself so much that he’s scared to tell even the people who love him most and my heart glows for that little boy and for the little boy that I was and I guess all I’m trying to say is I’m very lucky to live in a place where I can be different and gosh today was a really good day.
A few weeks ago Corey was home for a short visit but extended his stay to help Mark care for me while I was so sick. We spent a lot of quality time together and he happened to be here when my Wednesday night girlfriends came to visit. Corey has a beautifully written blog of his own and in one of his posts he described perfectly what our Wednesday nights are all about so I asked him if I could share that post on my blog and he said yes.
Earlier tonight, much like they’ve done on most other Wednesday nights since ALS bound my sweet mother to a wheelchair, three of her best friends journeyed to my parents’ condo from the far side of town for a visit. They used to hike and jog and throw outrageous backyard dinner parties together, did the four of them, but now, because my mom can’t do much else, they mostly just sit around my parents’ dining room table keeping one another company. Sometimes they laugh, sometimes they cry, but always, without fail, they show my mom and dad a rare and dazzling and inexplicable kind of love that blurs the line between friends and family and makes me wonder how we got so damn lucky to know so many of these kinds of people.
“Some people care too much. I think it’s called love.”
A. A. Milne
When our kids were in fifth and sixth grade at St. Michael’s they had an amazing opportunity to attend Camp Pendalouan to meet and bond with their future classmates from St. Francis and Sacred Heart before the three elementary schools came together as one class in the seventh grade. Chad and Kelly had already been through this great camping experience so Corey was excited for his fifth grade class to go and was hoping to get in the same cabin as his older cousin Matt Grimm who he loved and admired. Matt was one of the MCC high school students chosen to go as a camp counselor. The bond that developed between the elementary and high school students during their week at camp was always so amazing. While at camp the students were challenged physically and mentally on a difficult ropes course with the goal of encouraging each classmate on their team to finish the course, even the weak and the frightened. They learned silly new things like watching sparks fly while chewing Life Savers in the dark. They experienced first-hand what it was like for a large group of kids to eat everything on their plate and not to waste a single morsel of food. And they were guided spiritually in a beautiful but simple environment.
One evening at a St. Michael’s Home and School Association meeting principal Elaine Bertram informed us that a parent complained about inappropriate behavior at night in one of the cabins so the administration felt a need to cancel the overnight part of camp for the fifth and sixth graders. I was so disappointed so I decided to challenge it. The next day I talked with Elaine and told her I didn’t agree with the decision that was made and asked if she thought it would do any good to challenge it. Within hours Elaine had set up a meeting with three principals, a teacher, the parent that had the concern and me. I thought to myself, “Oh boy, what have I done.”
On the day of the meeting I was really nervous but I was prepared to state the value of keeping the overnight part of camp. As we gathered together at the high school for the meeting I believe we started it with a prayer. Everyone had a voice in the meeting and then someone suggested having a parent stay in each of the cabins. We all agreed this to be a great solution so we were able to resolve the overnight camping problem by having a parent stay overnight in the cabins with the students. I felt really good about the outcome and I believe everyone else did, too.
Thankfully, today the concerned parent and I are friends and some of our kids actually went on to become high school camp counselors themselves when they got older. Wouldn’t it be nice if all differences could end in a peaceful outcome?
Last month Corey sent an email to the Food and Drug Administration and a handful of US senators asking them to grant accelerated approval to GM604, a drug that’s had positive results with ALS patients but hasn’t been released to the public yet. He sent the email never thinking he’d get a response, but a few days ago he did.
My beautiful mother.
Dear decision makers,
GM604 is the first bit of hope that my family has felt in more than two years.
My beautiful mother has ALS and in just two short years she’s gone from an unwavering source of light and energy to someone who can no longer walk or speak or do anything for herself. I don’t really know how to make you understand how heartbroken my family members are, so I’m going to ask that you visit my mom’s blog, which she writes using her eyes, and spend ten minutes experiencing what it’s like to be trapped inside of your own body.
I’m begging you to please approve this drug.
P.S. If you’d like to speak with me about this, please call me at PHONE NUMBER.
The FDA’s response:
Re: My beautiful mother.
Thank you for sharing your story with us at the FDA and taking the time to advocate and write on behalf of people who are affected by ALS. We are very sorry to learn about your mother and the challenges she and your family must face every day. We understand the importance of making medications available to help ALS patients like her.
FDA is working closely with the sponsor on the investigational drug GM604. While a drug is being investigated we cannot comment on its status (21 CFR 314.430). At this time, information about GM604 is considered confidential and is only releasable by the sponsor. For the most up-to-date information, please contact Genervon directly: firstname.lastname@example.org.
We truly appreciate being able to read your comments regarding this investigational drug and your mother’s blog. Thank you again for writing.
Catherine Chew, PharmD
Deputy Director, Division of Drug Information
Center for Drug Evaluation and Research
Food and Drug Administration
No matter what happens, thank you for your beautiful email, Corey. I love you.