Pictures can be beautiful. They serve as reminders of fun things we have done. We can go back and revisit the past to see how we have changed, places we have been, celebrations we attended, people we once knew, or memories that bring up all sorts of emotions.
In the past several months as I have been able to get the assistive devices I have needed to move again, I have found lots of joy in having forearm crutches custom built for me by a company that makes them so people with disabilities can enjoy the outdoors. My custom pink wheelchair allows me to get around my house and go out without fear of falling over and to engage in life as my legs get numb and weak. I get to play wheelchair basketball.
My body doesn’t always cooperate. In fact, it rarely cooperates how I wish it would. When it does, I still take pictures, but I also take what I call “emotional snapshots”.
Yesterday, I saw a new doctor. I didn’t think much of the fact that they called the evening before to switch my telemedicine appointment into an in person appointment. I fully expected to have a conversation with him about my best route of immunosuppressants with the complexities of taking them during COVID-19.
That isn’t what happened. He said he wanted to see me in person as we had a lot to talk about after he reviewed my imaging and my troubling symptoms that I hadn’t found a medical professional too concerned about.
I look REALLY healthy. I also take exceptional care of myself and the me that is out is a me that feels well enough to go out. I’ve been on a strict anti inflammatory diet for almost 2 years. I have been diligently practicing Iyengar yoga for 1 year beginning May 7. I move. I manage my stress. I have some wonderful connections, yet I still feel very sick. My imaging of all sorts shows abnormalities.
This doctor was highly intelligent and printed my PET scan radiology report and explained it line by line with me. He told me what the numbers and medical words meant in regards to me. I reiterated my very horrible symptoms to him. I told him doctors/friends/family have a hard time understanding how sick I get as I just look so “good”. I’m proud of how great I take care of myself. I’m proud I smash through boundaries thrown at me. My doctor was proud of my efforts too. He also said to me, “you have worked your ass off to be healthy and still feel like shit. I’m sorry those are sometimes the only words I have sometimes”. I felt very validated.
I’m know I didn’t make this up in my head. Having troubling medical imaging backs my claim. I left the office with a promise of a phone call to schedule my urgent surgery to figure out what’s going on along with scheduling of multiple other tests. I asked when the surgery would be. He said, “I’m hoping for Wednesday”. This was just yesterday, Thursday. I left the office feeling relieved that I was heard.
I got home and the gravity and implications of this set in. I became a little anxious. My trauma tells me that everything about my health is “dramatic” as my mom felt sick children were a nuisance and dramatic. It’s something I have struggled with in navigating and advocating for my healthcare for years.
I got my phone call. Less than 24 hours after my appointment with this doctor, I had a pre op appointment at the hospital, which was early this morning. I also have to get a COVID test as the new protocol in these times is that it must be negative to have anesthesia. I have to have a CT scan so he can get to all the lymph nodes that showed up on my PET scan and others the day before surgery.
I got up very early. I was exhausted to get myself to my pre op. Hospitals are strange and not friendly places to go in these times. I won’t explain the process to even get access to the building, but it was weird. The tension was palpable. You can’t see anyone’s face anymore due to masks and protective gear. Leaving the building was weird too. I felt weird. The next order of business was to go get my CD of the actual images from my PET scan from the other local hospital system. I called and nothing about the message said they were closed. I arrive to an empty parking lot. I finally call and am on hold awhile where the lady tells me they have been closed a couple months and “should have planned ahead”. I explain my surgery was literally scheduled yesterday and have to have it for my surgery in 5 days. She said it would take 2 weeks. I have to get my best advocate self out even though I’m exhausted and finally get a phone number my provider can call to hopefully get the imaging in time. I go to the pharmacy to pick up my prescriptions that were called into a pharmacy across town. I’m so exhausted.
I finally made it home after what feels like a useless morning. I get a phone call from the hospital that I have to pay nearly $500 dollars Wednesday as my copay prior to my procedure for just the hospital part. Inquiring about a payment plan sends me to several people who know nothing except I have to pay. Squeezing blood out of a turnip while I’m fuming that I can’t afford to be healthy and get answers. I’m in an extremely frustrated and kind of helpless place.
I curl up in my little ball for a bit and fall into a deep sleep for about 45 minutes to wake exhausted. A couple more minutes of feeling sorry for myself motivates me to get up, throw on my hiking boots and load up my backpack with snacks, sunscreen, and water. I need an attitude adjustment.
So this is where my concept of “emotional snapshots” come in. I’m finding the best way for me to discharge very frustrated energy isn’t to calm with yoga. I like to take my crutches that allow my disabled body to march up hills and off I go.
So I take a handful of physical pictures, but this is going to be a rough week. I needed my emotional snapshots too. So this is where I’m doing something that brings me joy or peace or something in the range of positive feelings. I take in that mental memory to file away so when I feel awful, pained, ick, whether it be emotionally or physically, I can go back to my emotional snapshot of a time where I was flooded with peace, joy, or sometimes even pride.
I went out today as the coming week or weeks means I need plenty to remember emotionally as I recover and anxiously await my results.
I wish I could say my hike today brought on lots of positive emotional snapshots. They weren’t plentiful as I’m overwhelmed as well as grateful for what’s coming medically. I will say my emotional snapshot today was more about my strength to not just lay in my bed when that’s what I was telling myself was all I could do. I hold the emotional snapshot of my courage to be so exhausted and get up instead of just sink into what could have been a very justified pit of despair.
My photos might be wonderful. I can share them with others. I have my feelings of strength and courage to genuinely get me by that will stick in my mind.
Can you take an emotional snapshot of when things are easier to hold onto when life feels more rough or unfair? It’s honestly what gets me by.
I know I’m pointing to my hat where it says, “life is good”. Life isn’t always perfect and definitely full of pain for some more than others. I embrace the concept of life being “good enough” and what a wonderful thing to be alive and present in a body that hurts, a heart that feels heavy, and an entire mind/body/spirit that has feelings of fear for the upcoming weeks, as well as a body that has been severely abused. Life is good as I’m trying my best to live it as well as possible even in angst and limitations.
Never in a million years would I have found the “good” in a life that has thrown just a little too much. I also realize it’s ok to have joy in rough times. It’s our basic human right to have joy even when it’s hard as I can honor my grief simultaneously.