I’ve always had a happy-go-lucky temperament. Not one prone to anxiety and dark mood swings—I’ve considered myself fortunate because I do have loved ones who struggle and I know their journeys are arduous. Lately, however, I have been grappling with sadness and I’ve had difficulty managing the pain I experience as a result of having a genetic disorder (vascular Ehlers Danlos Syndrome) that is both deadly and painful to live with and the resulting surgeries that have disfigured my body. The last few days have been a little better though and as I feel more like myself, I’ve been able to step back and look at what may be triggering some of my hopelessness and feelings of loss.
Having lost my independence and the ability to work—my concept of time can feel a bit like I’m in a bubble and locked away from the world I used to be very much a part of. Because of that, social media can be both a blessing and an antagonist. It’s wonderful staying in touch with loved ones and meeting others who share interests—especially when chronic illness makes it hard for me to spend time with people. Connections can be made and true friendships can be forged. But, social media sites also bring bad news. Friends are enduring travesties; strangers with vEDS like me who become a part of an internet family pass on or have children that do, not to mention the state of our world and the injustices in our country. It can add to the straw pile that breaks the camel’s back.
Digging even deeper though, June has always held mixed blessings. My daughter’s birthday is always happy. She’s a shining light in this world. There’s more sunshine and school ends and there are graduations going on. But, it’s also my mother’s birthday and I miss her. I’ll always miss her. It sucks not having her in my life. It will be 20 years in October that she’s been gone and the pain still lives on.
I also have the anniversary effect going on for my diagnosis. On June 28th it will be five years ago that I was first admitted into the ICU in Hartford. On the 30th will be the anniversary of my aortic dissection surgery—one that I almost didn’t survive because while on the operating room table, my wonderful doctor who I only have love for, accidently tore apart my iliac artery. I was in the hospital for ten days and then back less than 24 hours later because I was in the worst pain of my life and had emergency surgery for what they suspected was a large hematoma but instead turned out to be a massive seroma infection right on top of my femoral bypass graph. I was left with a softball sized gaping hole in my groin. They couldn’t close it up because they had to remove all of my destroyed flesh. Twenty-four hours later I endured an attached muscle flap surgery that the surgeon said was even more painful than open heart surgery. They cut me from my knees to my hip bone, removed my outer thigh muscle—bent it sideways and filled in the hole. My poor skin kept dying and tearing so after putting me under in the operating room several days in a row with no success, I was given a wound vacuum and sent to stay at a rehabilitation hospital for a month. I had to learn to walk again while at the same time I had massive wound care needs and a new diagnosis that was confirmed by genetic testing—my vEDS. It was a dark time. I was lonely and isolated—missing my family and confused about the future. I still thought if I worked hard at recovery, I would get all better and go back to the job I loved.
My doctors didn’t want to tell me how dire I was at first—that or I just couldn’t listen. Finally, I went home on Aug 28th – two months after first being admitted. I had visiting nurses still trying to help me heal. I needed a walker for around the house and a wheelchair. I quickly learned that I was weaker than I wanted to accept. September 10th came and I awoke with agonizing abdominal pain. Jerry rushed me to Hartford and a CT scan revealed the large aneurysm on my splenic artery was rupturing. Another ten day stay in the hospital and my mobility worsened and my dreams for the future were finally shaken when my team of doctors finally explained that I had aneurysms everywhere and that my surgeries were too traumatic for my body to handle and that I’ve appeared to be on a downward spiral system wise. A body can only endure so much tampering. I went home and was back in five dayslater because both of my lungs developed blood clots. I wondered if the cycle of running to the hospital and then home only to return to the hospital was going to last forever.
It was hard—no surprises there. Not just for me physically, but I could see what was happening to my three children and my husband. It was traumatic for all of us. My youngest who was 8 at the time developed conversion disorder shortly after that. For him—the trauma has left deep emotional pain that his brain suffered to cope with. Even with the amazing support of the VNA and the counseling we all participated in, we’ve never been the same. My diagnosis has changed all of us and I am finally at a strong enough place where I can talk about it without fear of judgement and shame. My two oldest were tested and Justin tested positive. So, not only did I realize that this genetic disorder has damaged my body, but my sweet son will face challenges from it, too. Also—the geneticist on my team said it was likely that my mother, who had all of the symptoms and died from a brain hemorrhage, had it also. The news was a blow. I grieved the loss of her all over again—but this time I had vEDS as the culprit who took her from me and I hated myself for not having done enough for her in life. The guilt I carried for passing my mutated gene onto Justin has been the hardest part of all of this. I know it was always out of my hands, but it came from me just the same. My perfect child would endure a lifetime of pain and fear.
The year came and went and I was hospitalized with more emergencies than I can count. I almost drowned in my own blood when my lungs bled while on Coumadin and I had a foot of intestines removed (NG tubes are not a good time). More aneurysms were discovered. I entered hospice when my doctors could no longer stop the mini strokes and I had multiple periods of lost consciousness a day. I lost the ability to eat from severe gastroparesis and I was tired. So very tired. Tired of falling, tired of hurting, tired of constantly coughing up blood and dealing with the partial paralysis that I was trying to accept as my body’s process.
Mostly—I was tired of this new life. I was tired of hearing I was a “ticking time bomb” from doctors. I was tired of having the “you won’t see 50” from my specialists in the back of my mind or the news that I’d likely die from sneezing or vomiting from the two carotid artery aneurysms that were inoperable. I wanted to be the wife my husband deserved and the mother I used to be. I got a little stronger than had another setback and was back in hospice. But, I just kept working through it. It was hard, still is hard, always will be hard. Eventually, I graduated from hospice a second time and I’m still finding my life with vEDS complicates things, but I want a future. I want to see my children all graduate college and get married and have children of their own. I want to see my husband grow old and be the type of elderly couple you see holding hands and flirting in public. I want to finish my latest novel, which will be my fifth. I want to travel. I want to go to rock concerts and the beach. I want to move far away from where I live in Connecticut because I love the West coast.
So, I have periods of getting down. I struggle, but more than anything, I dream. Often it occurs to me that because of what has happened—I am a better woman for it. Five years ago this June, I was chased out of complacency. Because of what happened I could no longer live life assuming I had forever to figure out what was important, to forgive others, or to make things right. I learned to live in the moment. Love stronger. Say I’m sorry. I spend as much time as I can with my children and pass on all of my crazy stories, my passion for all art forms, and sage wisdom, but mostly, I pass onto them my love and acceptance. I don’t want them to wonder if they were enough—if they were loved. I pass on my truths.
I guess my point of sharing all of this is that we need each other in this crazy world. No one’s life is easy. I think talking to friends and loved ones about what we are enduring is the first step towards healing. Maybe I’ll feel compelled to tell my anniversary story for the rest of my life. I know sharing it helps me feel better. It takes away some of the negative power it holds over me. By taking back that power, I’m able to decide which direction I want to move forward in my life and also it allows me the clarity to count my blessings. I’m here. I have an awesome family and the greatest friends a medical zebra like me could ask for. We can face these hard times together.
By Bonnie Wheeler
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