Standing on the wooden platform of the Chicago “L,” I wondered if I were strong enough to face the AFTD Annual Conference. AFTD is the non-profit for Frontal Temporal Degenerative diseases. Interestingly, flying by myself and navigating the public transportation system did not concern me at all. Attending the conference did. A friend had forwarded me information about the conference and a way to apply for a grant to attend. It seemed like an opportunity that I needed to make happen despite my misgivings about leaving the three kids with their dad (bvFTD diagnosed 16 months prior) and my personal anxiety about meeting others much further along in their FTD diagnosis.
A GPS misunderstanding (proving once again that GPS’s make you stupider) sent me to the O’Hare airport to ride the free shuttle to the hotel rather than hiking across the parking lot from the Cumberland station. Things really do happen for a reason. It placed me next to my first conference attendee. It set the precedent for what was to come in terms of meeting some of the most amazing individuals. The conference was truly about making connections with those in the trenches.
Over 350 people from 32 states and multiple countries were in attendance at the conference. One thread connected us all – FTD. There are various forms of the disease but it was shared that bvFTD (the behavior variant – my husband’s diagnosis) is the most challenging from a caretaker’s perspective. Deep breaths. Information presented about the disease and the progress in terms of research was bleak. Donate the brains. Participate in clinical trials. Try these few drugs and see if any help with the symptoms. Take care of yourself. That was it. Truly. There is one outcome to this disease right now. One. And it’s cruel and unforgiving.
My husband texted me multiple times from Alabama asking for updates. What he really wanted was word that I had learned of the magic pill to cure him. It was another heartbreaking phone call to him at the end of the conference explaining that, no, there was nothing new in terms of a cure or way to slow down the disease.
There were several beautiful speakers afflicted with the PPA (language variant) version of the disease and a vignette showing the love between spouses as they battle this disease together. Honestly, this is not our reality. It is something I am still struggling to reconcile. There is love without a doubt. But, it is challenged by hurt, fear, frustration, worry, anger, and loneliness. Adding to that is the care of three children. It is overwhelming on a good day.
So, it’s the individuals I met and the gifts they gave me who have my focus – not this insidious disease. All were truly remarkable people who are now part of my FTD journey.
Linda, the nervous wife from the Midwest: She had not traveled alone in forever and asked 4 times if she had the right transportation to the hotel. After giving her reassurances, she and I bonded over educating a shuttle full of college students on FTD. We both needed one connection to feel good about attending the conference – to know it would be ok. We gave each other that gift. Thank you Linda – we did it friend.
The social worker from New York, Marisa, who invited me to dinner after the first meet and greet: We had a lovely dinner discussing our lives and what got us to this conference. It was Marisa who inspired me to request a social worker to be part of our care team. She and I ran into my first bvFTD inflicted individual other than my husband. It floored me. No one acts like my husband – until now. Her gift was companionship when I needed it. Thank you Marisa.
Mary and Phil, the couple from Kentucky that received a recent diagnosis in Phil: Both had this infectious energy and hope that I couldn’t help but gravitate towards. Mary and I connected over being warriors in this battle. Neither giving up to find answers. Neither giving up on our spouses. Phil gave the most heartfelt hug while saying goodbye. Despite having this disease, he showed compassion for me. That touched me deeply. Keep fighting Phil and keep giving your compassionate gifts to others. Thank you Mary and Phil.
The sister and daughter from DC and NJ who were at the conference for their loved ones: These women both seemed so young yet so mature to take on the challenge of care taking for this disease. Their resilience and eagerness to learn warmed my heart and gave me the gift of hope for our young people. Thank you ladies.
The regional volunteer coordinators, Michelle and Katie, who advised and guided me through the conference: Katie has been fighting for her father with this disease but seemed entirely too young to be so wise. She left me with small nuggets to ponder like grieving and saying goodbye to my old husband and building a new relationship with my new husband. He is the same man, but the old and new personalities are not the same. She did it with her father. It can be done. Love is that strong. Katie also kicked me in the pants telling me that my well being needed to be a priority, too. Her gift was believing in me. She’s got my back. Thank you Katie.
My special Canadian friend who sought me out after the spouses’ breakout session to talk about having kids and dealing with this disease: She somehow knew we had a deeper connection. We discovered that both our husbands have the same extremely rare gene mutation. We cried over our grief and worry for our children getting FTD. It keeps us up at night. Her husband passed a year prior, but she was at the conference still learning and fighting for her kids. Her gift was reminding me that I’m not alone in my grief that goes beyond our spouses. Thank you my Canadian friend.
The man with bvFTD that told me a corny coffee joke and made me belly laugh: He gave me the gift of realizing I have more grace for others than for my husband with the same disease. I can do better. I will do better. Thank you corny joke man.
The man sitting next to me in the spouses forum that turned to me after I stood shaking and voice quivering telling the other spouses that writing was my therapy for surviving this disease as a caretaker: He said he had written every night on his journey across the country in his camper to attend the conference. He didn’t know what had compelled him to write. He now had his answer. His gift was showing me that I could provide someone clarity in this bubble of confusion. Thank you fellow writer.
The mom from CA who was also in the spouses forum that sought me out at the very end of the conference: She wanted my blog. She sensed our paths were similar. Our brief conversation and shared tearful eyes confirmed her intuition. She gave me hope that my voice might be important and help others. Thank you my California friend.
There were others. I may even have some of the names wrong. It doesn’t diminish the impact of the few minutes we spent together at this conference and the importance of the connection. I have renewed strength. I have new perspectives. I have fresh priorities. I have sadness wrapped with hope. I just pray that I left a little something with you, too. Thank you friends. You’ll be in my heart as our journeys continue.
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