Tuesday, April 16, 2019

I Still Grieve My Marriage Years Later

Today is my wedding anniversary. It would mark 8 years of marriage and 10 years together. As I look back over the memories that my wedding anniversary brings forth I remember that within a month of dating, I knew I was going to marry him. I had found my perfect match to create a life with full of our hopes and dreams. I had finally found the one for me.

Our wedding was perfect for us. We had a Blues Brothers themed wedding that was fun and light hearted. We had details of the movies interwoven into our wedding from handcuffs, converse shoes for the ring bearer, black suits and sunglasses for the men, and dancing down the aisle to Blues Brothers music by every member of the wedding party. I made my dress from my grandmother's wedding dress and my jewelry from that of my great aunt's. There was a lot of thought put into our wedding ceremony and reminiscing on my wedding day still brings me joy as I cherish all the memories of the details of that day.

I made the decision to end my marriage over 3 years ago now. It was a difficult decision to make but I fully accept my decision and I have no regrets regarding that decision. Even though I am no longer in love with my ex husband, I still find myself grieving my marriage in spite of my acceptance.

I was shaken and heartbroken when I awoke from a recent nightmare. I dreamt my ex husband and I were engaged and we lived in a busy, small town. The town was devastated by a plane crash and my ex husband died from smoke inhalation from the fire that was started in the town by the crash. My life had been torn apart before we were even wed.

I realize this dream was symbolic of the loss of marriage I experienced with my now ex husband. I can't escape the loss even in my sleep. I find myself wishing circumstances had been different to prevent our divorce. We made a great couple, we were great together until actions caused trust to be betrayed. I was unable to re-establish trust in our relationship, it no longer was a partnership, and I didn't want to live like that with another person. I didn't want to live with the risk of liabilities placed upon me by others. But I still wish things had turned out differently.

With the loss of my marriage also came the loss of goals, dreams, and a lifetime together. Events without my partner remain emotionally difficult. For example, vacations that would have been taken with him are now taken with different people or by myself. This year will be the first cruise I've ever taken without my ex husband. Traveling to new places has been emotionally difficult without him. I relied on him to navigate and drive us where we needed to go when visiting new places.

My parents recently celebrated their 40th wedding anniversary. As happy for them as I am, such celebrations remind me of what was lost within my own marriage. Not only were dreams lost but the future was lost as well. Now I create my own future without him, without a partner. I still long for a future spent with a lifetime partner, even though it will be with someone different. I was fortunate to find someone I wanted to spend my life with once but will I be so fortunate again? I don't know the answer to that. I hope I will be but not everyone finds someone to spend their lives with and so it may be the case for me. Only the future will tell.

In the meantime, I continue to work on my own personal growth and acceptance of how my life is now post divorce and the countless possibilities that the future may hold. I cherish the interpersonal relationships I have with others even if those are not romantic relationships. I hold tight the good memories of my wedding and that of my ex husband as I look to the future and what it may hold for me.

Tuesday, April 2, 2019

Exploration and Rare Disease Awareness in Philly

I recently was provided the honor of serving as a member on the Familial Adenomatous Polyposis (FAP) Patient Advisory Board Meeting in Philadelphia, Pennsylvania and was able to explore this historic town while I was there.

Independence Hall
I arrived on a Thursday afternoon and met with a fellow FAP patient and friend who I had the opportunity to meet in 2017 at the Hereditary Colorectal Cancer Family Day. Our hosts had arranged our stay at the Windsor Suites. My friend and I spent the afternoon and evening walking around Philadelphia. We visited the Independence National Historical Park where we saw the Liberty Bell, President's House remains, and Independence Hall. For dinner we visited the Reading Terminal Market where we enjoyed official Philly Cheesesteaks. The Reading Terminal Market is one of the largest and oldest public markets dating back to at least 1893 where you can find a variety of food merchants, locally sourced produce and meats, and vendors with various items for sale.

Liberty Bell
The following day we joined the FAP Patient Advisory Board Meeting. Janssen Pharmaceuticals and CISCRP (Center for Information and Study on Clinical Research Participation) came together with a local marketing research data collection company to discover the experiences and perspectives of FAP patients and their caregivers. The panel of participants included a mix of 10 patients/caregivers as well as doctors, clinical scientists, researchers and Global Trial Leaders associated with Janssen and CISCRP. It was a unique opportunity to not only meet others living with FAP but also a chance to share our experiences and opinions with these professionals for future clinical trials for FAP.

After the completion of the meeting, my friend and I explored the

Mütter Museum, at the College of
Mütter Museum
Physicians of Philadelphia, which showcases medical history. The museum houses collections of bodily specimens, models, and medical instruments. Among the two story exhibit rooms full of interesting objects, we saw Mega Colon, a colon with FAP, and even slices of Albert Einstein's brain! Photography was not allowed in the museum unfortunately. Outside was the  beautiful and serene Benjamin Rush Medicinal Plant Garden where more than 60 different medicinal herbs grow. Following dinner again at the Reading Terminal Market, we joined a few of our newly met FAP friends to visit over drinks before we all headed our separate ways that night or the following day.

Philadelphia City Hall

It was a whirlwind visit to Philly but it was full of historical significance not only of the United States but also an opportunity for patients and caregivers to make a difference in the future of clinical trails for the treatment of FAP. It was an honor to have our voices heard and to meet an amazing group of individuals fighting their hardest against this disease.