Utah Hemophilia Foundation

"Voices" from the Past Five Years of My Life
by Sean Dahl

When I was asked to do the “Voices” article for this month’s newsletter, I didn’t know what I would say. I thought about all the wonderful articles that I have read over the past several months, and how I have been touched by the many stories of the struggles and hardships that many of you, my friends from the “bleeding disorders” community, deal with. I felt like I didn’t have any stories that even compared… and I really don’t… so I thought I would share how YOU, the “community,” have touched MY life.

First, let me tell you how our family came to be involved with the bleeding disorders community. Our oldest daughter, Chelsea, used to have regular nose bleeds, when she was an infant (and into her toddler years). After testing, she was diagnosed with von Willebrand disease. We didn’t know much about it, but we did what was necessary to get the nose spray that would help to control her nosebleeds. As Chelsea grew older, we noticed that her nosebleeds had stopped. Somehow, we ended up on a list at the Utah Hemophilia Foundation. I remember my wife, Tiffany, taking the girls to a family picnic of some sort, when the kids were all younger. I was working and did not make it to the event. I still knew nothing of the “community.”

Fast-forward to October, 2004. We received a letter in the mail, inviting us to the Utah Hemophilia Foundation’s Adult Retreat at Snowbird’s Cliff Lodge. The price was incredibly cheap, considering it included meals as well as a room for the night. I was enticed by this wonderful deal, considering we were on a budget, and didn’t get the chance to go out much. I told Tiffany that it would be a great deal, and that we should sneak into the thing, doing our best not to be noticed, and then sneak out before the evening’s program was concluded. What a great plan!! A cheap get-away, and we’ll be INVISIBLE!! Or so we thought…

As we approached the room where dinner was to be served, we were greeted by (then) UHF director, Susan Soleil. We were immediately welcomed with a handshake and given a name tag. Susan also suggested that we sit with the Winslow family, who are the community’s von Willebrand experts. We were nervous and somewhat intimidated. I sat next to Dave Winslow, who had a demeanor that was very difficult for me to read. With very little outward emotion, Dave asked me about our experiences with our daughter and then explained how his family had been affected. Wow. Our daughter’s case was SO insignificant in comparison. I felt a tad bit “unworthy” to be at the event.

We went through the rest of the event, enjoyed a nice night, and tasty breakfast, complete with a guest speaker. It wasn’t until after the speaker, as we were preparing to check out, that the tide turned for us. Enter Linda and Anna Ohlson and a mutual appreciation for the music of a British band called Porcupine Tree. Fast forward another two hours (of mostly music related talk… and if you don’t believe me, just ask your kids that have attended Camp Valor, as they may know me as the Music Man), and Tiffany and I were completely comfortable with our new “associates.” By the end of that initial conversation, Linda had suggested that I serve as a volunteer at Camp Valor. I had no clue what Camp Valor was, but sure… I’d be willing to help out, especially if it would benefit these new friends.

So, during the summer of 2005, I spent my first week at Camp Valor. I may not have felt worthy to be a member of this community that struggles with so many health issues, but by the end of the week, I was at a point where I didn’t want to leave… either Camp Valor OR the community. Tentative arrangements were made for me to return to Camp Valor the following summer and help with the music program. I have been back every summer since.

Since my first year at Camp Valor, I have seen and heard how bleeding disorders have affected people. I have heard stories about how some lives have been cut short because the medicine wasn’t available that you are blessed with, today. I have witnessed how some of your lives have been forever altered because of your bleeding disorder. To those of you of whom I speak, you are my heroes. And for you younger people, ALWAYS be grateful for those that have gone before you. Because of what they suffered, your life has been made better.

Camp Valor has been a wonderful experience for me, and even though I will be forced to be involved in a much smaller capacity (so I can spend more time with my family), I will always be thankful for the friendships that have been made over these past five years. For those of you that I have had a chance to interact with at Camp Valor—and for those of you who are parents of those wonderful kids—I thank you. I thank you for sharing your lives with me. My life has been so enriched over these years. To see some of those campers grow up—and to witness their determination to live their lives, and not let a bleeding disorder hamper them in ANY way—is one of the most touching things that I have encountered. I will ALWAYS be humbled by the sweet spirits that I have dealt with.

So, in essence, how has a bleeding disorder in my family affected my life? Not in the way that it has for most of you. For us it was the inconvenience of an occasional nosebleed for my daughter, or slightly heavier bleeding and excessive bruising for my wife (who was “officially” diagnosed with von Willebrand disease in 2006). But where it has REALLY impacted my life is through the associations I have made with all of you. Thank you for being the examples that you are—for showing me that we can move beyond the trials that life has to offer.

In closing, let me just say one thing. I’d like to speak to those of you who actually deal with a bleeding disorder. First and foremost, I admire ALL of you. I admire your ability to adapt to what life has dealt you. Always think of yourselves as a unique individual, and one that is very special. All of us have our own problems that we deal with, even if you don’t see it on the surface. Never think of yourselves as “broken,” even if you may not be able to participate in activities that many of your friends are doing. You have everything in the world going for you, both with modern technology and wonderful breakthroughs in medical science. Yes, you may need to infuse after a wild day on the playground, but that’s okay… you are unique, and you won’t let anything prevent you from living a wonderful and prosperous life.

Again, I thank you for the wonderful associations and friendships I have experienced over these past five years. These experiences have been some of the highlights of my adult life. And I never would be the person I am today without having you all as part of my life. Thanks for letting ME be part of the community… even though, sometimes I don’t feel worthy to be part of such a brave and noble group. I am happy to report, however, that on a couple of occasions I have been able to get Dave Winslow to laugh out loud. THAT, for me, is one of the highlights of my adult life. See, Dave? I bet you just laughed again…