Health, Mental Health

The Little Deaths

Many people understand that receiving a diagnosis of a chronic, painful, incurable illness, is much like dying. Before you had different needs, goals, and limits that must now pass away before the new version of your identity can rise, and take shape.

However, disease progression can hit at any time, stealing your sense of self, and starting the cycle of grief anew. Once I was able to just keep pushing myself. I would be sore the next day, or two, but that was it. Now, the consequences are much more extreme, and overdoing it could cost me a few days in bed.

While writing helps me make sense of, and purge negative emotions, it was never something I aspired to. I spent 6 years up to my eyeballs in environmental, wildlife, botany, and sustainability research, as I worked on my Bachelor in Environmental Science, with a concentration in fish, and wildlife. I planned on graduating summa cum laude before pursuing my Master of Science, and Doctorate in Sustainability.

I wanted to help the world make some needed changes to reverse environmental damage, and move towards a sustainable future. I had spent much personal time in research of sustainable design practices I wanted to share with the places that need them most. I accept that this dream is not in the cards for me now. It took time, but I finally felt good about letting go of what is no longer right for me.

Being on long-term chemotherapy, and with the full knowledge that I will have to continue this, and more aggressive types of treatment for life, is reality. The me on the Dean’s List with a 3.98 GPA isn’t here anymore, and isn’t coming back. The me who was accepted to RIT (MIT’s little sis) does not exist.

I tried to be her. Tried my best. My new brain just cannot process that much new information anymore, or keep pace in a classroom setting, even with extensions. I was forced out 3 classes shy of my degree, but I had tried to take each of these classes three times each. I did my best, but could not get through the first weeks of classes without going into a flare. It was time to give it up, at least for a while.

I try to use my time to heal now. It may be soaking my sore joints in a bath, taking time to nap, staying hydrated, doing light physical therapy, or going to therapy. I’m not just waiting for the days to go by, I’m trying to look at this as an opportunity to slow down, and do all the things I never had time for before.

I have lost passions, hobbies, goals, and dreams, but I am still me. I am still alive, and I can fall in love with a new pursuit, try new hobbies, and dream new dreams. I survived all the little deaths, and there is still time. But if told me this a year ago, I’d only be able to list what I was losing. Now I’m trying new things, pushing the edge of my boundaries, and have an appreciation for life that might not have otherwise ever have developed.

Going through the stages of grief because of illness? Made it through the dark, and have a positive suggestion? Leave it in the comments!

Best. X


All the king’s horses…

Every time something scary happens with my health, I am forced to take a step back, and examine my treatment plan. The way we treat my disease changed significantly over the last year, since the symptoms of Behçet's Disease are not well controlled. The last few months have been quite the roller coaster ride, to say the least. I have been on chemo infusions every 3-4 weeks, and immune suppression for a year, but I still have the same swelling I started with.

When your doctor agrees treatment is not working, and it is time to try the big guns, it is kind of like a "holy shit, I was right!" moment, but it brings no joy. Instead I got extra blood work before I left that day, to make sure the drugs they wanted to try on me wouldn't kill me. I was so detached that I felt like I was floating next door to the lab. My pulse was roaring in my ears.

Normally, I am a pro at blood work, to the point where I barely even feel a butterfly. Not so much that day. I must have jerked as the phlebotomist went to remove the needle, but it's not like blown veins are not something I'm used to. (That's why my doctor suggested the power port in my chest.) I felt dizzy. The phlebotomist told me to stay in the chair while she grabbed me some juice. Typically it's not a big deal, but I guess my body was irritated about giving up nine tubes of blood before breakfast.

I tried to be a "normal" and thanked her for the juice. Two seconds later I tried to take a sip, bumped the ulcer on my face, which immediately started bleeding, and poured the mini-can of apple juice mostly down my shirt. I got a tissue, applied some pressure, tried to go crawl under a rock to die, but my partner was waiting. He sat so patiently while I tried to collect myself. I got the bleeding stopped, and used the few tissues I had left to mop up my soaked bra, and chest.

I wish in these moments I could remind myself that "normal" is a setting on the dryer, and everyone who was staring at me had their own bad days too, but the weight of my previous conversation with the doctor was heavy on my mind. They were going to get me IVIg. There was a good chance it could put me in remission, or at least quell my pain, and symptoms. I thought, "what have I got to lose?" and, "it's just another infusion," but within 24 hours of treatment, I knew I was wrong.

Most of the next two weeks were in, and out of the hospital (where I was admitted at one point), and doctor's office. It turns out the IVIg Infusion had caused aseptic meningitis. I am no stranger to headaches, I have had my share of migraines too, one lasting 9 days from elevated intracranial pressure, caused papilledema. They all paled in comparison to this pain. At one point my head, neck, back, and spine all hurt so bad I was being given intravenous dilaudid.

However, about 10-12 day after the IVIg infusion, my joints were feeling better than they had in over a year, and some of the swelling in my mouth went down too. I had to choose if I was willing to risk the pain of meningitis again in order to get that tiny window of payoff. I'm still on the mend from a hospital acquired infection, but here I go again… Chemo is this Friday, and IVIg is about two week from then. It will be two doses this time, given over two five+ hour infusions, two days in a row. I won't lie and say I'm not scared, but I'm willing to risk it once more just for the hope of a bit more time feeling "normal."

Fingers crossed!