“Struggle” by Kaykay Halle

You’d think it would be easy­ — just accept what is so, embrace it, and carry on, right? There’s the roadmap! Noooooo — “Many a slip twixt cup and lip” — as my grandma would say, and she would be right.

So began my stumble back into life. 

It was unexpected and unforeseeable that allowing myself to lie down and simply be sick would be the start of the most profound journey of my life. The infinite passage from broken to being made whole again, the chasm between wanting to live and wanting to die, seemingly insurmountable from either side, had been bridged by acceptance and surrender.

Even though my spirit had turned toward new hope, there was still a crisis in my body that needed direct addressing: I was functionally disabled. It might be a different set of joints every few days, but collectively they did not work.

I gave myself permission to be selfish, putting aside all my drive to be responsible and do the right thing. I took on nothing and cancelled all commitments. All output ceased. The world was judged through the filter of how it could ease my condition, and nothing else. That took a lot, giving myself permission to be selfish and self-indulgent, a new way of being, which jarred against my upbringing and understanding of what a good person, a good man, should be. Patience, man, patience! It was going to take a while to adapt to this new way of being.

Accepting help and support proved a huge challenge for me at first, and asking for it was inconceivable — until I could no longer fully care for my son. I dared not ask my former spouse and jeopardize the partial custody that had been so hard won. It was a humbling experience with a shadow of shame to have to confront the fact that I was no longer capable of managing, no longer able to respond to the needs of my child, as hands, elbows, shoulders, hips and knees flared up with breakout pain, but that was what I needed to finally prod me into asking for help in all the fetching and carrying and minding that goes with parenting an infant.

Many people showed me incredible generosity and even outright charity during that time. Good, kind people provided care in the face of my wounded snarling, and patience with my pigheaded approach to getting well.

Through just a few years of being sick I had become more acquainted with what was happening to me and was beginning to adjust my patterns and habits accordingly. I was now beginning to distinguish which body sensations meant a flare coming and how soon, what activities would set my body off, which foods seemed to exacerbate things and which were benign. It was a slow and sometimes tedious process of turning inward and becoming self-aware and body-conscious that felt often like being abandoned in a wilderness. This all occurred inside of the cloud of information, misinformation, unsolicited advice, alternative remedies, doctor shopping, interminable appointments, applications for aid, and toxic sludge of chemicals that were supposed to help. 

I planned trips to town to be short and low-stress, and became panicky if I left my pills at home by mistake as they represented my lifeline. It took a conscious effort not to fear any body twinges I felt, lest the fear itself add to my stress. Learning to relax felt like hard work at times.

The internet ‘chat rooms’ of the early days for ‘sickies’ like me were inhabited mostly by sweet ladies that seemed to accrue co-morbidities with terrifying symptoms at an alarming rate and then disappear from the room. It was tragic and depressing more than supportive, and so, in the spirit of “Only What Is Best For Me”, I stopped going and looked further afield to assemble a team to help me as there was no way that I was going to manage on my own. My physician was the chief, even though she had reached the limit of what she could do for me, she was kind and supportive, and I needed every straw I could grasp. I found a massage therapist that I really trusted and liked (read:  took pity on me by offering ridiculously discounted rates while still delivering relief), and a friend stepped in to help with nutrition and manage various appointments.(Read:  picked up the logistical ends of my life without which I could not survive.) Other folk helped with babysitting and favors here and there, and by their mercy, I gimped my way through the crisis.

I had a team. I was not alone. I would do this thing.