During Corey’s senior year at NYU he lived in a small one-bedroom apartment in Brooklyn Heights with a classmate of his named Danielle. During the year that they lived together they became very close (partly because their apartment was so small) and have continued to keep in touch even though now they live on opposite sides of the country. Mark and I never got the chance to meet Danielle, but we’d heard a lot about her from Corey over the years and she started following my blog after I was diagnosed. On an early blog post I mentioned that I was grateful for the smell of lilacs and then one day a beautifully-packaged lilac-scented candle arrived in the mail. It was from Danielle. A few months later another one came and then another and then another, each with a beautiful note attached.
Last week I received an email from Danielle explaining that tomorrow she will undergo a bilateral mastectomy after having some tests done and discovering that she’s at an 87% lifetime risk for breast cancer. In part of her email Danielle said:
I would like you to know that you have hugely impacted my decisions since the moment I received my result. A positive BRCA1 gene mutation leaves me with an 87% lifetime risk of breast cancer and a 44% lifetime risk of ovarian cancer. In that moment, one of my first thoughts was of you. I had to consider: If someone had told Rosemary before she was ever diagnosed that she was at risk for this terrible disease and that if she removed her left arm/right foot/whatever it may be, it would decrease her risk to 1%, would she do it? I have to imagine the answer would be yes.
As life-altering and devastating as these circumstances are, I count myself so, so lucky that the research and ability to determine this gene mutation does exist so that I can do everything possible to prevent cancer from invading my body at some point in my lifetime. It breaks my heart that this is not available to you and I hope with everything in me that someday a cure or genetic blocker is discovered for ALS.
All this said, I want you to know that while I am enduring these procedures to safeguard my future and that of my future family, it is also in large part as a tribute to you; as well as to the mother of my dear friend Meghan, who lost her battle with ALS in 2006; and to my cousin Olivia whose diagnosis and illness allowed me to be proactive in my own treatment.
Thank you for inspiring me, and so many others, every day.
I replied to her email with this note:
Thank you for sharing this part of your life with me. I wish I could sit down to talk with you and give you a hug. You seem to be so brave with the decisions you have made. Wow, I’m in awe of you. Now you are entering into a world that may be foreign to you, at least it was for me. My new world caused me to be an emotional mess but after the ALS shock sunk in I began to see unbelievable love and beauty. Love and beauty I hadn’t fully seen before.
I will continue to pray for you. Please keep us posted.
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 May while attending my quarterly appointment at St. Mary’s ALS Clinic we met Dr. John Mulder who was new to the clinic. During that visit Dr. Mulder said he likes to visit his patients in their homes to get to know them better. In January he made a house call to our home. It was so nice. Mark, Kelly, Harrison and I had his undivided attention as we sat and chatted for over an hour in our living room.
Thank you Dr. Mulder.
For the last two weeks I’ve been really sick with a respiratory bug and at one point I thought I was going to die. The first night I was sick I saw Mark sitting in a chair next to our bed with his head bent down praying. My breathing was so labored he wasn’t sure I would make it through the night. During that time I asked God to take me to a place that had no more suffering and sadness, to the place he took Liz and Maryanne a short while ago. Yes, at my weakest moment I wanted to die.
Gratefully I am feeling so much better but during those painful two weeks I thought about one of Richard Rohr’s daily meditations. In his April 13th meditation he wrote “You come to God not by being strong but by being weak.” At my weakest moment I couldn’t find the logic behind this statement but today I can.
Imagine not having a voice and trying to get someone’s attention. Now imagine not having a voice or the use of your arms and legs and trying to get someone’s attention. Losing my voice is harder than I thought it would be. The first time I tried to wake Mark up after I lost my voice was pretty scary. I was sitting in my wheelchair next to him while he was taking a nap in a La-Z-Boy recliner and I was watching TV. My arms were by my side and falling asleep so I tried to wake him but my voice wouldn’t speak. Even though we were sitting next to each other and within touching distance I couldn’t move my arms and legs to touch him and wake him up. I know I didn’t have a life-threatening plea for help but it still was scary. Mark woke up on his own and I survived my first time without a voice and the grim reality that this is how it’s going be for the rest of my life so I better get used to it or die, but it’s really hard.