*You cannot un-see these pictures.*
Journal Entry #53
Its been almost 8 months since those sand fleas infested my body.
I can’t believe it has been that long, but I also can’t believe how fast the time has gone either. As the pain recedes, and I look back, I am able to acknowledge that I have been living with both physical and mental pain since early February. I didn’t admit it, didn’t succumb to it, didn’t give it the time of day…I just ignored it. But now that I am experiencing moments where there is no pain at all in my foot, I realize just how much I had been ignoring my body and its warning signs.
That’s a tough pill to swallow.
I mean, I teach people how to look after their bodies as I help them look after theirs. I talk about giving yourself time to heal and feeling 100% before getting back to work post-surgery or accident. And here I was, trucking along…ignoring my own. For someone who prides themselves on living what they teach…I was blind to my own way of being.
You may be able to sense my frustration with myself? I am not where I thought I would be. Naively, I thought, I’ll do the 28 days of Chemo, and then be back to work the next week. I don’t have cancer, and the side effects aren’t supposed to be that bad…I can push through and get this thing done, kill these bugs and get back to work and life. It has been 65 days since the last dose of Chemo and I am still not 100%.
Fun fact. Miltefosine typically stays active in the body for 48 days after the last dose. And, here I am, still cramping in the stomach, aching in the head (10+week headache), bleeding from my ass (thank you haemorrhoids), tired as fuck and anxious over everything.
For instance, a bug stung me on Sunday…is its stinger still in my neck? Did it lay eggs under my skin? Why is it still stingy and itchy? It has been over two days and it is still annoying me! It is freaking me out. For the record, I have never feared bugs before or even given them a second thought. I have been known to set spiders outside, slay scorpions, swat and shoo insects calmly…never, in my 40 years have I had an issue with bugs.
So, an interesting transition is taking place. Throughout this journey, I have been working on healing in all planes – physical, mental, emotional and spiritually. As the physical symptomology becomes less, I have more space to address the other planes. As this transition unfolds, a whole new stigma is revealing itself. The other day, someone said to me “Oh my God! You look amazing!” and they gave me a big hug, commented on how great my foot looked and as the conversation progressed, it became clear that there was an expectation that because I looked so good, I would be returning to work soon. Here’s the thing; you can’t see the healing that I am doing now.
You can’t see the headache.
You can’t see the fatigue.
You can’t see the anxiety.
You can’t see the heart palpitations or the increased resting heart rate.
You can’t see the painful, bleeding haemorrhoids.
You can’t see the stomach cramping.
You can’t see the brain fog and lack of concentration.
You can’t see the jumbled thoughts and dropped thoughts that can’t be re-traced.
You can’t see the internal stress that is happening because the outside of me doesn’t match the inside of me, right now.
I feel like I need to say that again.
The outer me doesn’t match the inner me right now.
I believe the body is a remarkable, miraculous healer. It can do things and heal things in such intricate and coordinated ways that we as humans cannot duplicate. The body’s ability to heal itself is greater than I have ever given it credit for. It truly is an incredible machine. I believe that this ability to heal is not just physical but it exists for the other planes as well. The thing is, we can’t see that healing as it happens. And so, again, I find myself leaning intopatience. Because, this amazing meat-suit that I am housed in is taking its sweet time getting back to its regular operations.
I had a very open and honest conversation today with the Insurance Company. They want to know when I am going back to work? Let’s be clear. I have temporarily closed my business and haven’t seen any clients for 5 months. The Insurance Company has supplemented me for 1 month at this point. One month. And the supplement is ¼ of what I would be bringing in if I were to be working.
I will NOT be pressured to return to work before I am ready. This was the exact expectation that I put out to the adjuster today:
“It would be negligent of me to live and make choices that are not in alignment with what I teach and treat in my practice. I encourage my clients to take the time that they need to be well when they are recovering from illness, accident and surgery, and I simply cannot go back to work if I myself am not well. It is important to be able to manage my own health before I return to work to manage others health.”
I don’t care how much they are supplementing, I will NOT go back before I am ready. I don’t care how little or how much they are supplementing me. I must learn from this experience, and actually LISTEN to my body this time.
Otherwise this is all for naught!
Remember that transition piece that I eluded to earlier? Here is where it comes full circle. The Insurance Company and the Doctors can’t measure anxiety. They can’t measure fatigue. They can’t measure all those things that we cannot see. There is NO measure for FEELINGS. There is NO measure for MENTAL WELLNESS.
I know my body, my mind, my emotional state, my Spirit. And I know, I am not ME right now. I don’t need an Insurance Company or a Doctor to tell me I am well or not. I know. I know I am not mentally or emotionally or physically the ME that I have come to know and love, right now.
But, every day, I am returning. Slowly.
So, I am happy to report that on the outside, I look good! Other than the extra pounds that I am carrying around thanks to Cortisol and Cannabis. The wounds on my right arm and hand are scars now, with secure tissue formed and healed around the areas that were once craters.
The wound on my right foot is closed this week. It broke open last week due to the humidity and a foot soak. This week it is closed and the tissue although fragile, has darkened around the edges and has become itchy – a good sign that the cells are regenerating permanently.
Yesterday, Tim and I spent most of the day at UHN again. Dr. Boggild is encouraged by my progress and doesn’t need to see me again for 3 months. She has laid out the basic plan for the next decade, where I will see her annually and the ENT Specialist, Dr. Shah at UHN annually as well. Anytime, I have so much as a common cold, or anything sinus related, I will doctor at Toronto General as a preventative for reoccurrence. Leish is known to resurface when the immune system becomes compromised and if it decides to rear its ugly head again, its tissue preference is the nasal cavity. Of course, she said the likelihood of reoccurrence is low, I will be monitored for the rest of my life as a preventative measure. She has cleared me for travel, and encouraged me to always visit a travel clinic before venturing outside of North America. And, when I am ready to travel again, she encourages me to be of optimal health before leaving the country.
In the meantime, as I continue to heal, she has referred me to my family doctor to further investigate the headaches and the anxiety. Because those are not a direct result of Leishmaniasis, it is out of her “scope” and falls under the care of my primary care physician. Her wait times are long, and her specialty is bugs not side effects of Chemo. It is kind of a weird situation. I am a chemo patient without an oncologist because I don’t have cancer…but I also don’t have a doctor that follows the total care of the body as it heals from a drug not recognized in Canada. It truly is a unique situation.
I continue with IV Therapy bi-weekly to build up the micro nutrients in my body with Dr. Katrina, my Naturopath. Over the last few months, she has become a lifeline of support and healing help for me. She treats the body as a whole and understands the process and path of the Miltefosine drug thanks to her colleague in Germany who works with patients there who take this drug. It has been an integral part of the process for me and I am so grateful to have her knowledge and support.
At my last visit, she ran an extra bag of fluid through me, admitting that perhaps I have been more depleted than we originally suspected. She leaned in as she adjusted the IV in my arm and said, “you know that the hardest part of the journey happens now, right? Physical healing is a breeze compared to the mental, emotional and spiritual healing that happens next.”
She gets it.
This next phase of healing, you won’t be able to see.
This next phase of healing, we can’t measure.
This next phase of healing, will be internal, personal and transformative.
This next phase of healing is where all the lessons I have learned over the last 8 months get integrated, employed and calibrated to a new normal.
I probably won’t get it right the first time. That’s okay. I know me. And even though I can’t measure these next steps of healing, I trust that those around me, that love me and know me, will help keep me on track…gently reminding me when I falter, encouraging me when I am frustrated and foggy and loving me whether I fail or succeed. I must be clear though. This next phase, is my responsibility…and I will only be successful if I continue to do the work.
As C. G. Jung says, “I am not what has happened to me. I am what I choose to become.”
I am committed to do the work.