Brugada Girl ™

I want to start a new post about something that is brought to my attention often. It’s about how family members suffer in the diagnosis of Brugada as well. Patients can get a little selfish and forget about the impact this has on many levels, especially on other people. It’s what I call the “domino affect.” You knock down a domino and the rest fall. One person is diagnosed and the others will fall. And I don’t mean the other people who will get diagnosed through genetics. Although that DOES count! After all one of us gets diagnosed and then others get diagnosed with us. What I am specifically talking about, getting messaged about and seeing with my own family, is the psychological impact on loved ones. Put the shoe on the other foot. What if we weren’t the ones with Brugada? What if our spouse or parent said to us “My life has just been put in an hourglass. When that sand runs out, I’m done!” How would we take the news? Wouldn’t we walk on egg shells now? Death is usually a surprise. In old age it isn’t so much a surprise. Im not saying it’s not devastating but we usually ARE prepared when someone is old. Brugada leaves no preparation.Its a thief in the night, pun intended!! Take it from me…I wasn’t ready for my father’s death. Even in the funeral parlor, I sat in the very back so I didn’t have to look at him up close. Maybe If I couldn’t see him, he wasn’t really there. When I went to the coffin to pray, I wouldn’t look at his face.This is just someone else laying here, not my healthy father! I didn’t believe it. I felt like he was sleeping. Matter of fact, the denial was so deep, when the whole thing was over, I was the last person in the room. They stripped the flowers and decorations away and he was just alone there in an empty room. I was horrified and stayed there telling my husband “We can’t just leave him alone! Why are they taking all this stuff away? Leave it here!” As if he was still alive and sleeping and it was his bedroom. I felt like I was hurting him by leaving.I felt like he would know I abandoned him when he “woke up.” My point is, no preparation for death is devastating. Absolutely horrible. Brugada does just that. We the patient have to sit around and wait for “the big one.” But our family does too!! Imagine the emotions and guilt they must feel daily. I’m just guessing but I’m pretty sure they walk through life saying ” What if this is our last birthday? Our last Christmas? I shouldn’t have fought with them this morning, what if he/she dies tonight?” Not just us, but our loved ones are walking around holding their breath wondering if tomorrow will ever arrive. So that aspect, of unprepared death, is extremely traumatic.Not just for us patients, but our family.

But what about on a different level…our inability to live normal or even think normal? I have changed certain things about my life. I’m afraid to be majorly active. I’m afraid to be alone in public. I’m afraid to drive. Does my family think that’s sad? Or is it frustrating? I’m sure it bothers them in some way. I have been so anxious since my diagnosis. I was put on an anti-depressant. I admit it. I’m not ashamed to admit it to you all. Life is bad enough with Brugada but the anxiety and depression is a killer. I felt it was best I seek help so I can get at least some of my life back. I feel guilty about all this and its impact on my family but for the most part I brush it aside. I’ll admit it…I don’t think about the impact on others often. I don’t wonder if they are sad or crying or fretting over me. Maybe I should. Maybe WE should. I never really considered it. What I DO consider is feeling like a burden. When I have limitations, I feel like a child that needs babysitting. Like I’m a ball and chain on my family’s ankle and maybe life would be better for them If I wasn’t here. At times I wonder if their life would be easier if they didn’t have to worry. So yes, Brugada patients think about their family but on a different level…we worry we burden you, we don’t worry if we sadden you. Does that make sense? And I can’t speak for everyone. I can only speak for myself. And speak for the emails I received in regards to this subject.

Ive discussed the mental aspect in regards to family. We stress them. We don’t mean to but it happens. For the most part we aren’t aware of it, so lets try to be aware of it to our best ability. This diagnosis has to be a group effort 🙂 But what about the PHYSICAL impact? Some of us won’t work out, we have no hobbies, stopped living and stare at the wall. We are afraid to move, exercise, practically walk… And what does it do to our family when they see those limitations? Are they understanding? Sad? Angry? Maybe both? I personally, at first was afraid of everything. It took damn near a year to get up and about. I danced and rode my bike at the gym a few months after surgery. But something big like horse back riding was a 9 month wait!!! But I’m here to talk about it! Nothing happened! I swim, dance, take walks, exercise, gave birth to my son! Hell,thats bigger than any activity I can think of lol! My family encouraged me to do things but never forced it on me to the point I was uncomfortable.They understood it was all in my timing. Even today, 2 years later, it’s my timing. When I’m ready to do things, I’ll do it. As frustrating as that may be for family, patience and understanding is imperative. Like I said, it’s a group effort…we need to keep living so our family members can live. But our family has to be patient. I asked a few of my family members how they cope with my diagnosis and limitations. My mother feels that she can cope well because I have an ICD. Although she cringes at the thought of what Brugada does, she knows the necessary protection is there. She’s happy I’m an advocate for it and learn and research so I’m fully educated about what to do and not to do, not just for me but for my kids with Brugada. Other family members say faith in God and his plans for me trumps all..he’s in charge and just accept that and be at peace.I know not everyone has religion but I am Catholic and I couldn’t handle Brugada without my faith so I agree with them. They also cherish each day with me. I sat with my husband to ask him how he feels. The day I was diagnosed he bust out crying hysterical which is highly unusual. The man never cries. The scariest part for him was my life WITHOUT an ICD, waiting for surgery. But like my mother, he rests easier now knowing I’m protected. Yes, he’s aware of inappropriate shocks and electrical storms but he said his coping mechanism is simply, don’t think about it. He feels if he dwells on it he will become neurotic and that will affect me and our children as well. He hopes for the best and takes one day at a time like me. He just doesn’t think about it. I can say one fear of his he won’t put to rest is me driving. He’s down right terrified of me driving. He won’t allow me to drive with the kids unless absolute necessary. He’s uncomfortable with me even driving by myself…I will faint, crash and die.That is what he envisions. If it’s possible for him to drive me somewhere, he will do so. But I don’t want to add to my anxiety so I DO drive myself because I also don’t want to become a neurotic. Am I scared driving? Hell yeah. But at some point caution has to be thrown into the wind and say…screw this! I’m alive and I have to live. Its essential. Its essential for physical health, mental health, our family members health and children’s health. Cope! Get up and get out! No one is immortal. How do you feel about the impact this has on your family?