Can we talk about grief for a moment? We all experience loss, and each loss impacts us differently. There is no rule book for processing grief, and that’s a beautiful thing – processing grief is unique to the individual it happens to. Grief is defined as a specific type of suffering that is often tied to loss. Grief is healthy to process, and I believe it is essential to discuss.

I have lost many loved ones, starting at a young age. At six, it was my maternal grandmother; at seven, my maternal grandfather, a dear great uncle at 16, an uncle at 21, a sister at 26, and many other family members and dear friends; many were like family. My parents were both gone by the time I was 46. 

It is June 15, 2022, when I am writing this; tomorrow will be 27 years since my sister’s death. Each year the memories of the events of June 12, 1995, the day of the cardiac arrest, through the next 30 days mess with my soul. I find my thoughts distracted, am melancholy, and out of nowhere, there are tracks on my face as memories turn into tears of all that was lost and all that never was.

I am sure this is a form of PTSD, and I have tried to work through this for years, and while it is easier every year, there always seems to be a new twist. Life moves on, and my sister was supposed to be here with me going through all of it, the good, the bad, the sad, the joyful, the silly, the petty, the everyday life, all of it, and she is not.

Dates trigger many people; in this, I know I am not alone. This year the new areas that have impacted my grief are the new grandchild my sister should be with, and the reality is that this new wonderful little boy will never know his grandmother.   The next issue is that my daughter is the age I was when my sister died; she was born a month later and never knew her aunt Lori. Looking at my daughter and thinking I was her age when we pursued custody of my niece and nephew – I was 26. OMG, I was only 26 years old. A few months later my life would take turns in my personal life, my work life, and my relationship with friends – EVERYTHING changed – like it or not, it changed forever.

This point was somehow lost on me all these years; I was only 26. When other late 20-somethings were my age, they were out partying, traveling, or starting their own families – BAM, I was in a whole new space and one I had never seen anyone manage before. I found no support, no resources, and no online community to gain input from, it was just “figure it out.”    The reality that NOBODY created a system of support for families like mine was at the core of starting the HCMA.   So yes, the HCMA was born from grief – and I see that as a positive thing.   Grief brought positive change. I have to be honest and say it was not all good change.

My family changed. We lost contact with her step-children, who were very dear to us. We navigated new custody agreements, new schools, new conversations with doctors, new family dynamics, and so many other shifts in normalcy – it was the “After Lori Normal.” I still see the world “with Lori” and “After Lori.”

My friends – well, there wasn’t much time for that. I grieve the loss of connection and the time let fade without a call, getting together, group vacations, and all the fun things you do with your friends as adults. There was no time left in the day for a social life. There were three children then at 13, 11, and newborn. I would not change for a moment the time we spent together, the new family we created from the broken pieces. Did I do everything right – oh, hell no, I am sure I made a ton of mistakes. I hope they now understand how we tried to be “normal” in an” abnormal situation  

But then, if I see the HCMA as a positive, how do I hurt so much each year when I think of what our family lost that day in 1995? I think it is partly because I believe Lori would have been a fantastic partner in building the HCMA and servicing this community. In April 1995, we began talking about starting a support group, so the idea had already come to life. I wish my sister were here to see how much things have changed in 27 years. I also know that each year at this time, I think of all the other families around the world that have experienced loss from HCM, and my heart and soul hurt for each of them.

My grief this year is processing a bit differently than it has in the past. Maybe it’s the number 27 – I lost an aunt at 27, I turned 27 the summer Lori died, and my daughter will be 27 in a few days. Maybe I see myself in my daughter’s young 27-year-old face and wonder how the hell did I survive, did my marriage survive, did the kids thrive, did my parents manage the loss, and how did something as beautiful as the HCMA come out of such a fucking disaster.

Grief brings so many things, and I now see it as an evolution. Maybe we process little bits of grief when we are ready, and perhaps it takes a year, a decade, or a lifetime to process it all.   When I grieve my sister’s death, it is more than just the grief of her loss; it is grief for all the things that changed without our consent or approval – life just happened, and we were forced to make it work. I used the word PIVOT a lot in the office, and I am great at a PIVOT. What is a PIVOT to me? Plan A is no longer viable; try plan B – won’t fit, pull out Plan D.  The moral really is to always think of plan B, C, and D when planning anything and KNOW your options.  

The definition of “audacity” is a wiliness to take bold risks.  I took a risk of putting my grief to work to bring about the change in the world that I believe would have provided my sister with the chance for a future.  Lori is gone, and so are many others, too soon, and with your help, we can ensure no other is lost to HCM when care is within reach.  We continue to learn about HCM, the patient journey, and the science evolves, as does our understanding.  I have the AUDACITY to believe the future can be better and that suffering is not a requirement of the diagnosis is HCM.

Lori left this world far too soon, but she also left a legacy. I am sure she would be proud of all that has been done. Lori was a giving, caring, and wonderful mother, sister, daughter, and friend.   She was also a single mother who worked hard to support her children and keep a roof over their heads and good healthcare available. We understand that funding to get quality healthcare might be complicated, so in In my sisters’ memory, we have created the Lori Fund to provide micro travel grants to the HCMA community.

So I am going to turn this blog post into a bit of a fundraising request – hey, I am a non-profit Founder; we always look for ways to help the mission.

In memory of my beautiful sister Lori, would you please make a donation to this critical fund? Click here

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