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C.M.V.: At ConnectMyVariant, we talk a lot about helping relatives get genetic testing. But one of the things we don’t talk enough about is helping relatives get treatment after that testing is done. Your book is a memoir of a family helping each other, especially helping you, get treatments and major preventative surgery. In what ways did your family show up that made a difference in your experience?
M.C.: Throughout my childhood, they were always keeping an eye on things that may be markers. When I was a kid, I had teeth issues, which might not sound relevant to FAP. It actually is. That was the first warning sign, but they wanted to wait until I got older to make sure. Then my grandparents were there as a resource for when things got rough and I had questions. My grandma specifically, my aunt and my mom, we’ve all bounced our experiences off each other. Any time I have something going on that feels a little off or unusual to me, I can always go to them. When I first had pouchitis [a painful potential side effect of surgery], I didn’t know what was going on. But when we explained it to my aunt, my aunt said, “Oh, I know what this is.” We were able to diagnose it, and I was able to get better. We all just lean on each other in regards to questions and answering them. And if we ever need to go to a doctor’s appointment for anything, we drive each other.
C.M.V.: What unspoken values guide you in how you support each other?
M.C.: A lot is attitude and how we choose to view things. Obviously if we have bad days, that’s fine. But we try to remind each other to not be stuck up on the bad emotions and to remember the good days and the good times that do eventually come.
There was a time where things weren’t going well. It wasn’t always sunshine and rainbows, and I could’ve gone down a path of self-pity and not taking care of myself. If I had gone that route, things would be totally different. My mom was one of those people who swore she would never get operated on again after a certain age, and she was at peace with whatever happened to her. Then, after years of me making these decisions and just being really open about what happened to me, my mom decided to get checked. She actually found out that she would have to get what I have, which was a reversal of her surgery. Suddenly she was about to go through a year of recovery, two surgeries. I remember she was telling me, when I was helping take care of her one day, “I probably wouldn’t have done all of this if you didn’t do what you did.” My little choices over the years were able to influence my mom’s decision-making. And her decision-making ultimately is the reason why she’s still here. We’ve seen how much just changing your attitude can really add up to big things happening down the line that are positive.
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C.M.V.: In what ways do you think that your experience has changed how your family members relate to each other or trust each other?
M.C.: Going through life-and-death circumstances, and being there with each other through surgery and having to laugh through the hard moments in recovery, it brought me closer together with my family than perhaps I ever would have been if I didn’t have this situation. When my grandma was alive, we did have a genuine, real buddy friendship that brought us closer on a level that not every family gets to experience. When I was at my lowest moments, some of the happier memories I have were going to my grandma’s house and her sharing stories with me and just painting a different lens on things that I didn’t necessarily appreciate before.
Because we all grew up in different generations, we were able to share our experiences with each other, which were vastly different in our perspectives, and it was really nice to have that. I’m thankful for that in a weird way. Because FAP brought us that. There’s a lot of bad things that happened with it, but at the end of the day, that was a positive thing that got us through the hard times. And still to this day does.
C.M.V.: As well as bringing you close together, are there ways that it has increased tension in your family?
M.C.: There was a small point that I wrote about. My rock bottom moment was me telling my mom that I wish I was never born if I knew this would happen to me. I attribute that to being depressed and having mental illness speak that way—because in my head I thought that was going to make them feel better and would liberate them, which was incredibly foolish. I know a lot of people could think that could be interpreted as animosity toward them, but it really wasn’t. It was actually a necessary conversation for us to have. Afterward I remember my dad telling me that he and my mom had been stressed out through all this, too, and they were battling their own weight of negative emotions like guilt. That was all new to me. I was only thinking about myself and what was going on in my own view. That’s when I started to actually make the changes in my life regarding my attitude and how I viewed each day-to-day, and not trying to be super negative and not trying to be so closed off from them.
C.M.V.: How does your family balance honesty and shielding each other from pain?
M.C.: For the most part, we’ve always been very honest. The only time when there was really any shielding was during my childhood. My grandma probably knew I had it, with the teeth issue that I mentioned. I was 10 or 11 at the time, and she was thinking about telling me. This was a conversation I never knew happened at the time, but I would learn years later that my mom and my grandma would have a strong disagreement here. My mom said, “We’ll keep tabs on him, but he’s allowed to be a child, and he doesn’t have to worry about that.” That was a decision I agree with. The second I found out in my senior year of high school, it pretty much dominated every waking second of my mind. And if I found out at 11 years old that I may have had this horrible thing, I would spend seven years waiting for surgery, thinking about it and looking it up online, and I wouldn’t have had a normal childhood. So when I was a child I was shielded, but once I became an adult, there was really no shielding.
C.M.V.: What would you want others to understand about helping loved ones get treatment?
M.C.: Just how you respond to their negative emotions. If someone has to go through a major operation, there’s going to be a period where things aren’t fun. But the important part is just to be consistent, to be stable, even if that person feels like their world’s falling apart—and maybe it is for a little bit, because I know mine was. To not judge them when they’re feeling bad, to not be toxically positive, to let them feel what they need to feel and to just be there as a shoulder to cry on, someone to drive to surgeries or appointments. Don’t be a pushover either. If the person doesn’t want to do the things to get well, you’ve got to maybe give a little tough love. So it’s just about being that stable figure that they need even if it feels like everything else is not stable or coherent at all.
C.M.V.: What do you hope that people with hereditary disease take away from your book?
M.C.: I think the biggest overarching message I would like for people with hereditary disease to realize is, it doesn’t mean that it’s the end of your lineage. People are curious about how I feel about having children. I feel like a lot of people think that you can’t have kids if you know you have something in your bloodline. Tying it back to attitude, everything is how you view it. I wouldn’t think my grandma’s life was wasted. I knew she was happy about her life and the impact she was able to make. And I know my mom’s happy with her life. From my family’s perspective, we have this one thing, but we know how to handle it. We have a group of doctors. Yes, this could happen, but if it does happen, we’re prepared.
I know a lot of people who have hereditary diseases, they struggle with that thought. I know my family did, too. It’s a guilt thing they battle. But my grandma, if she chose to give up and not have four kids, then my mom isn’t here, my aunt isn’t here, I’m not here, my brother’s not here. My dad doesn’t meet my mom. My cousins aren’t here, and now they’ve had kids. So this whole big family that we love would cease to be here based on one decision. When you see the interconnectivity of decisions you made, good or bad, it really reshapes how you view the world.
C.M.V.: Thank you so much for sharing your story, both to me and in your book with everyone. It was really great to talk to you. |
