The 1 Year Anniversary of The Worst Week
I have been through some extremely tough things in my life. Up until this time last year, I refused to say that any particular day or week or month was the worst of my life. It wasn’t worth thinking about, really, lots of it had been bad, but lots of it had been life-shaping, wondrous, or a learning experience, and it all balanced out in my mind.
Last year, this same week, I was sitting in a hospital sobbing, begging the universe to give us back my boyfriend’s father, who was in a coma after having a stroke. He had been rushed to the hospital within minutes of my boyfriend’s mom, Pat, noticing that his speech was odd, and that in the bathroom there was shaving cream everywhere on the walls and the floor. She was so on the ball, and we are so lucky that she was, because he had been about to get in the car to drive them both to our house. Who knows what would have happened, but it would have been so much worse and more traumatic for my boyfriend if they had both been in the car when he lost control of his body. We rushed to the first hospital he was taken to. He couldn’t speak, but he kept smiling, which was weird and scared me, he rarely smiled unless it was for a very important reason. I told him with the least tears in my voice that I could manage, that he was the best dad a girl could ask for, and he smiled at me and nodded a little, and I do not know if he understood me or not, but I am glad that the next and last thing I said to him was “I love you dad.”
He was not the normal stroke case, they were limited in that they could not administer the regular drugs because he had platinum in his head from a surgery to correct an aneurysm a decade prior. But the fact that he could indeed wiggle his toes and fingers these first few hours, and move his face and nod at us, even stand and follow some basic commands, it all seemed so promising. We were sent home by Pat to get rest, and within hours I came down with a violent case of the swine flu. That was Sunday, and it was the last day Dave knew who we were. We had no idea what was happening or what was going to happen, what it all meant. There was only shock.
That week, every morning we would go to the hospital as the sun was coming up, there were no visiting hours so we just got up and went there straight out of bed. I didn’t shower, I was in a horrible pain flare up and my body was playing host to a gnarly bug and just couldn’t manage through the whole routine, but I did pull on a dress every single day for some reason, and I do not know why. Every day I was not allowed to go back and see him at all, because of the swine flu. I sat outside the ICU on a bench with a bucket and a box of tissues and cried my heart out for hours at a time. No one looked at me or paid any attention to the girl directly in front of the ICU doors, crying and taking rounds of pills every two hours.
That Friday my boyfriend was scheduled to have his third major hip surgery in as many years. We obviously did not think it was a good idea to put him under while his father was in a coma. He cancelled the surgery he had waited almost a full year for and arranged his school schedule around, because there was just no way. And I am so glad that he didn’t go through with it.
Sometime towards the end of that week of fear, shock, and grief, I had an appointment up at OHSU, the teaching hospital in Portland, at the Frida Fibro Clinic. I was so delirious and sick. The pain from days of sitting on benches in front of the ICU in odd positions had overwhelmed me, and then the sadness for my boyfriend, his mother, and the father I had for five years all crashed around me louder than anything else. My aunt and uncle drove me to the appointment so my boyfriend could be with his mom. I was already not driving because my arms were not strong enough and did not always respond to my commands, and the side effects from the meds plus brain fog were so great that I often did really stupid things even if my body was working. I felt crazy and I was baffled at that time, because I had been the first girl able to bench 160 in my middle school. I had been effortlessly stronger than most people my entire life, and now… nothing in my body seemed to be obeying me.
Up until that point I had already been dealing with chronic pain for two years and one month, but I knew nothing about living well with a chronic illness yet. To my sorrow and guilt, it was difficult for me to even snap through the pain and be there for my boyfriend emotionally. That was so unlike me. I have always been there for those I love in their times of need, not just when it was convenient, but always. For some reason I couldn’t understand at the time, it was like my brain was wrapped in layer after layer of cotton and nothing could get in or out. Mainly out of fear and desperation, I kept my appointment. I wanted to find an instant fix that meant I could go home and help my boyfriend, support him in every way possible. I knew I was doing a terrible job and it was breaking my heart.
At this appointment I was kind of expecting to find out if I had fibromyalgia or not. It had been discussed briefly as a possibility in my previous appointment at OHSU’s Pain Center. I didn’t understand that there was no further test than the quick poke test I had done a month prior at the pain clinic, which I had heard her and her PA mention I “failed” but that was all. They had sent me to get a bunch of blood testing after that appointment, testing that got seriously screwed up by their clinic. After telling me the blood draw had not been done correctly, there had been no further news from anyone in between appointments. So I was completely horrified when the nurse practitioner that I was seeing glanced at a chart and said bluntly, “I see you have fibromyalgia, I’m sure you have prepared a bunch of questions to ask me. We also need to find out if there seems to be anything going on in addition to the fibro that needs to be handled by a rheumatologist.”
My brain kind of exploded. I saw rust colored shadows closing in around me, started sweating profusely, felt dizzy and my stomach went sour instantly. I didn’t connect any of that to the fibromyalgia she had just discussed, but rather I was still trying really hard to believe all the doctors prior who had told me it was all in my head. If it was all in my head, I could just… snap out of it, right? To have a name for it though, and one whose meaning I understood only a fraction of (but which seemed ominous even then), and to experience that in the middle of the grief I was already feeling hollowed out by… I was in no way prepared to hear my diagnosis that way. There’s no good way to receive life-altering medical news, but there are some really terrible ways, and my pain doctor somehow forgetting a whole month earlier to tell me she had diagnosed me then and there with fibromyalgia was one. If I had known I could have researched, I could have digested the news far better in a time when overwhelming sadness for my family was not my constant concern.
All I remember from the rest of the appointment is being sick. Nothing she said made it into my distracted, shocked, grieving brain.
A year later, a lot has changed, but grief for my boyfriend’s father’s passing is not any less present, any less sad. We miss Dave terribly, but we have done so much to make him proud this year. My boyfriend has since made it through two semesters of full time course loads, passing everything, getting some solid A’s on half his classes! I am so proud of his strength. At the same time, we finished up the basement to our house, and by “we” I mean all the pressure and responsibility that Dave was taking on with our house remodel fell on my boyfriend, who did not have the depth of knowledge on engineering, or building experience, that his father had. All the plans for the remodel were up in Dave’s engineer brain. We knew nothing about permits and where everything was and who to call, so it is entirely a testament to my boyfriend’s strength of character that it got done by October so we could rent it out.
When Dave passed, even the concrete was partially ripped out, every wall was gone, the plumbing wasn’t done, the electric was started but not finished, there was literally nothing down there. Now it is a fully functioning separate apartment, complete with electric fireplace, beautiful 6×4 ft shower tiled in stone, and an updated kitchen. We finished it while our roommates were moving in, so I do not have any pictures of the final project, but it’s a lovely two bedroom home. My partner also had to replace our vanity and sink upstairs in our bathroom in that time, plus fix up the other apartment that is attached to the back of the garage, a one bedroom cottage -style house with it’s own fenced part of the yard.
It has been a tsunami of change. The poor guy also rescheduled that major hip surgery in March, which took a brutal four months of recovery. I slept on the couch for all of that, so I could be near his recovery bed which was set up in the living room. Some of the things that have been accomplished in 2014 seem impossible. That one week exactly a year ago brought about so much change, so much grief, so much pain, personal strength and family closeness.
Though this week is the anniversary of the worst one I have ever been through, the week we lost a father, and the week I learned of my diagnosis of fibromyalgia, among other events, to my surprise we are still standing a full year later, and thriving even, though the grief is real and ever-present. Every day this year has been a struggle. Yet, there is still so much left to be thankful for, and we have done such a good job of finding those things. I feel blessed to be able to look back on a deeply sad year and still see the good, the progress, and the positive changes within both myself and my partner.
This holiday season, I hope everyone is willing to look back on a year that might not be perfect, and still see how it fostered (or forced) growth, resilience, and self-respect to blossom inside each of us. This was not an easy post to write. The changes this year brought about were not ones I would have chosen for myself, or my partner, but I am proud that we have done our best and we have always kept going, just like Dave would have wanted.
In loving memory of a devoted father, the man who built the foundation the rest of our lives are supported by.
Nothing will ever be the same without you, Dave. We miss you terribly. Most of all, we celebrate all of the wonderful things you did for your family. We are learning to talk openly about your accomplishments, the amount of time you got to spend with your son working on this house, and all the times you made us laugh; the things we miss the most about you. I hope that you are as proud of us as a family as I am of your son.
About Jessi Finds Out FibroHi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.
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