My 37th birthday today… only fitting that Bertha the machine made it home today. Tucked in the back of a dusty truck, swaddled in blankets and behind cellophane wrapped pallets, Bertha finished her motorcycle saga proudly displaying her battle scars. Side boxes scuffed from our road worn boots, the faring and windshield coated with a fine film of grime, she arrived quietly with no fanfare to mark her voyage. Silently with a smile, I watched as men uncomfortable with her size struggled to safely park her as it is only fitting that Bertha finishes her journey on her terms, still in control. It was always planned that the motorcycle lovingly called Bertha would be shipped across the country and the irony is not lost on Terry or I that she arrived home on my birthday, especially as she was projected to arrive 4 days prior (since she was shipped out from Irvine, Ca on 8/23). On an iconic day such as a birthday where life is always evaluated and one looks back on the past year, having Bertha come home today only underscores the significance of our journey.
It is only fitting that I briefly speak of the United Ostomy Association of America national conference- the reason we risked life and limb to cross the country with only leather and metal between ourselves and the unforgiving road. I have spoke of this organization multiple times as it has been life-changing in my life and thousands of others. Ostomy and continent diversion surgery is challenging at best, physically and emotionally regardless of age, sex or circumstances. Terry will tell you that I probably cried every day for the first 6 months going though surgery and he is correct. However, my marginal sanity was saved by meeting with other individuals who just “got it” and my struggle is the reason I started my ostomy support group and now serve on UOAA’s management board of directors. The conference is held every 2 years with a different theme and location and this conference was no exception. 4 days, 53 speakers (most are physicians with topics ranging from sexuality, urology, gynecology and cancer to sessions for family and caregivers and all the latest medical advancements), 28 vendors of ostomy suppliers and lifestyle adaptations available, a separate 8 hour session led by yours truly for all support group leaders (90 in attendance) discussing all that is involved with improving each support group, a President’s reception with drinks and desert, a Superhero themed ice cream social planned and hosted by myself and one other board member, a barbecue and fashion show featuring only individuals with ostomies or continent diversions ranging from teenager to 80 somethings (and yes I was the party planner for this as well as party host), a dinner cruise, 100 free appointments for anyone to spend an hour with a certified wound and ostomy nurse if they are having appliance fitting or skin issues, and 400+ instant friends for life …. that is conference and almost all done by volunteers. The best way to describe it – daunting, exhausting but exhilarating as you feel like you finally belong. It’s the only place where your ostomy or continent diversion no longer matters because hey, almost everyone there has one. For many, it may be the first time they have met individuals in person with an ostomy and often the first time they discuss their issues openly and honestly. For me, they became my sister or brother, my aunt or uncle, my friend. They laughed with me at my silly stories, comforted me as I discuss my struggles and become my encouragement as I am dealing with new health issues. I could count on their friendship, their cheers during the fashion show as I was one of the “models” rocking my biker gear (see one of the pictures above as I pose with a bit of attitude with Cheryl another board member), and their support as I continue with my role on the board of UOAA. Though the days are long, stretching often to 14 + hours as a volunteer, each night as I collapsed into bed, it was always with a smile because simply, it was worth every terryifying moment on the motorcycle.
Multiple people have asked Terry and I the same questions so I will briefly answer them.
*What was the best part of the trip? He and I will have different answers but for me, it was the life lessons along the way. Though the scenery was amazing and the people we met along the way from around the world were kind and considerate, the lessons from the road will remain my favorite part. I’ve written about it in the past but the simplicity of the road teaches you what is important. When you live out of a 10 inch bag for 9 days, life as you once knew it changes. You realize why people push themselves to their limit-climb Mount Everest or jump off cliffs. It’s in those terrifying moments that you are alive, that no illness or life stressor can lay claim to you and you overcome all. For me, in those daunting moments on the mountains, as my life lays in my husband’s hands that were involuntarily shaking, I realized that that moment is all I have. It was up to me how I chose to live my life and I was again reminded that there are 2 types of people in life-when knocked down, you either stay down or stand up and fight. Every day on that motorcycle, I fought my fears, my pain, my body and simply refused to give up. Every day we were choosing to write our own story and pursue our crazy dream-not going by society’s expectations. Despite extreme sickness, pain, fear or heat, Terry and I never missed a stop or a site we wanted to see and we arrived on time despite going an additional 231 miles than originally planned. As I said at the closing ceremony, I didn’t pick my illness or surgeries, but I do pick how I live my life-and I chose to live it on the back of a motorcycle screaming down a mountain.
*Would we do it again? Well…. maybe not the mountain parts of Arizona and California but absolutely! The next UOAA conference is in Philadelphia in 2019 so stay tuned because yes, we are planning another run.
*Did all your gear come home? Sadly no. On day 7, I took a rock kicked up by a passing car to the side of my helmet that instantly busted the plastic frame that held on my face shield. Fortunately I was wearing a helmet as I shudder to think that we would have a very different story if I wasn’t wearing it. Terry’s helmet also was falling apart at the end so both helmets were left behind purposefully in Irvine. Also, the picture above of Terry’s gloves shows the permanent curvature of his gloves based on the continuous sweating and gripping of the handlebars so that may need to be replaced as well as they will not lay flat.
*What would you do differently? I would take even less clothes (despite only having about 6 shirts, 2 jeans, and undergarments, it was still too much). Definitely we would research the road conditions more… and avoid anything with Mountain in the title.
*What surprised you the most? I am surprised at how close Terry and I became during the trip. We squabbled a bit early on but by day 5, that ended as we realized we needed each other to survive. He needed me to navigate and keep up the encouragement and I needed him to just not drop the bike!
*What was the hardest part? Mountains…mountains…mountains. Oh, did I say mountains? The heat definitely rivaled with being the worst part as well but yep mountains and declines from said mountains.
*Are you glad you did it? Simply yes. We have raised money with it for a great organization (please consider donating even just $10 or $20 by clicking on the link on this page for donating), our relationship was strengthened and we overcame our deepest fears. For me, I was no longer the “sick” one in the room. After 16 years of a chronic illness with multiple invasive scopes, 4 surgeries, months lost in the hospital and more medications that I could count, I was given 9 days of freedom. Though my crohn’s still played a significant role on the trip (see the Santa Fe report day 5), the road refused to be ruled by my disease and I will forever be appreciative of those days. My illness and surgeries did not win!
*Do you know how crazy you both are? Yes we do… and we would do it again in a heartbeat. Everyone should have the chance to have a road renewal once in their lifetime.