I spend time in person and online with people who have serious, ongoing illnesses who I greatly admire. From their attitudes and experiences, and my own struggles, a few survival techniques have become evident. Putting on a fight face, becoming a researcher, focusing on one moment at a time, and having a strong faith life seem to be some commonalities. I invite any readers to comment with their coping techniques and means of gaining ground. The more we connect and share, the less isolated and scared we will feel. There is power in information and connecting.
#1: We Become Researchers
I put on my fight face. I go to battle. I investigate, research, fight. Though polite, I am an inquisitive patient. I don’t trust any prescription, supplement, or therapy until I have thoroughly looked into it and spoken to others who have tried it. Binders of notes sit on shelves in our basement, alongside many medical books and texts. My mom started these records, including side effects and reactions, what worked well and what didn’t. Later, when I was stronger, I took my health into my own hands and began to unravel the mystery. It pays off. I am not 100% well but better than anyone predicted I could become. I am even creating a new life that is kicking and stretching as I type. I am happy to have such a little fighter inside of me. Looking back causes me to shake my head at the hell I’ve gone through and smile in astonishment that I came out on the other side. Others who keep digging, keep questioning, keep learning seem to feel empowered, too.
A new appreciation for life and its intricacies came to include the bacteria, parasites, and viruses that invaded my body. I needed to understand them in order to work against them. The art of war requires one to know the enemy. I spend hours online, and reading books to understand every infection and every disorder with which I have been diagnosed. This removes the fear on days when I am knocked back down. I study biology, medicine, pharmacy, and naturopathy. I learn the genomes of the infections. I learn how they survive and even communicate. I discover which herbs and medications have a synergetic relationship. I phone researchers, hounding them with questions about their findings. (It must be stated that this time and energy spent on research is really only possible because of all the help from my mom and husband. If I did not have caregivers in the first few years I do not know what would have become of me. But to have people making meals, cleaning the house, driving me to appointments, and helping with note taking, I may not have had the strength to research .)
I love social media for this reason. I really appreciate all the information people are sharing, especially via Instagram. Each day I learn something new from someone. The sharing of information is helpful.
Not only does researching new developments, old traditional herbal remedies, and the make-up of the diseases empower me, it leads to effective battle plans. And they are working. I may lose a battle from time to time, but I won’t lose the war. I do not understand patients who do not study their illnesses, connect with others with similar health issues, and keep up to date on the newest developments. I cannot passively do just what the doctors suggest. They are all excellent physicians but I need to know why we are doing certain treatments, the intricacies of how each works. By becoming an integral member in this fight to survive I can say I am doing all I can. No matter what happens I have peace.
#2 Put on Your Fight Face
I witnessed many people suffer with terrible diseases before mine hit. I marvelled at their ability to get up each morning and face a terrible existence. The audacity, the drive, the strength! I had no choice but to follow suit when I fell ill. There is always someone worse off. I know I am fortunate compared to many, many others. I fight for myself, but also to honour them. Their examples really got me through the worst days.
There was a stretch of six weeks where I only saw my husband, Marcel, for one day. My treatments took me out of country and out of town for months. When he did arrive I was too weak to enjoy the visit. I had lost weight, was pale, hair thinning, too weak for conversation or a dinner date. All energy had to go to treatment and resting. Yet I didn’t have a heavy heart about facing this first phase of diagnosis and medications without him. I became logical and militant in a way. Sadness and self-pity would serve no good purpose. He had responsibilities and work at home. He did not have the ability to become my out of town caregiver (that fell to my poor mother, once again). During these initial days of finally having a diagnosis and the start of the protocols, I pushed Marcel away, turned my emotions off, and just wanted to deal with the poking and prodding and pain without his attention. I didn’t begrudge him working and holding down the fort, I didn’t dwell on any sadness. It was easier to become methodical, logical, militant in the early days of battle against illness. After a few months I did return home, but kept the fight face on.
I mixed IVs, ensured a sterile environment when breaking open glass vials and drawing the liquid into a filter needle, then switching the syringe to a lower gauge needle to inject the medication into the IV bag. The multiple systemic infectious disease syndrome that created whole-body conditions resulted in the need for various treatments, no cookie-cutter protocols. Being sick and homebound is one thing, having multiple illnesses with no set cures is quite another. There was much room for freak outs but I kept pushing fear away and thought about it like going to battle. It was honestly easier to learn medical skills of injections and IVs and medication scheduling than to drive to clinics every day. Many times I donned a mask and gloves to fix my central line or clear a clot from within. Minor surgery occurred quite often in my kitchen. I removed myself from fear, from an emotional side and took on a split-personality. In those moments I could become clinical and formulated. I thought about all the painful procedures others endured, the intensity of treatments and told myself to buck up and do this. Oh the strength I have witnessed in others!
#3 Break It Down
As awful as this has been, I can’t say I am surprised. Decades of infections are being killed off. Serious damage to muscles and organs require time to repair. It took me years to become this ill and I am prepared for it to take years for me to get well. So first, I drew inward and found deep focus, then I broke down painful moments into manageable segments. I just got through one minute at a time. Then the next minute. Until six weeks of minutes passed. Then four years.
I focused on the minute I was in, then the next. I pretended nothing existed beyond that day. Depression rates are high among the chronically ill, but somehow the silly lesson I took from my shampoo bottle provided a purpose. Instead of wash, rinse, repeat I decided to wake, struggle, repeat. Open eyes, swallow pills, do injections, hook to IV, force breakfast down, lie on couch, take more pills, eat lunch, more pills, injections, another IV, more TV, supper and pills, IV and injections before bed. Repeat every day for months, then a year, then another year. I felt confident in the process and treatment to repeat this over and over.
A rhythm began, and my idea of time changed. With extreme illness and days and months in bed one reassesses beliefs. The clichés that “the year flew by” and “life is short” became insults to me. My time was measured by a medication schedule and doctor’s appointments. For months I lied looking out a basement window, watching the sun as the earth rotated through its cycle. My personal world rotated slowly. In being too weak to engage in activities, I forced myself to delight in the way the sun shone off the floor at two in the afternoon, and became more golden at four, and then pinkish against the far wall at five. In concentrating on nature and evaluating the passage of time by nature, I found a deep peace. The sun kept me accountable in a way, and I had to keep going until it became white, then golden, then pink again.
The people who inspire me are the ones who don’t take anything for granted. They notice the beauty of all the little things. They find symbols and encouragement in nature. Their sense of time and peace is different than proverbial sayings of plaques and coffee mugs. I am quite well compared to many people I follow on Instagram or met at the clinics. I read books by people bedridden for years and I feel selfish for getting stronger, for returning to some normalcy. But I hope to honour their struggles and lessons by remembering all I learned from my time in the trenches.
This isn’t an “Everything works out in the end” or “Everything happens for a reason” cliche. Accepting pat phrases like this endangered me into becoming passive, irresponsible. Questions of “Why?” and “How can a loving God allow such suffering?” also have no place in my search for health. I don’t need a deeper answer to “Why?” and I certainly never allow myself to say “Why Me?” nor do the people who encourage me each day through their battles with pain, fatigue, and illness.
From the writings of Toni Bernhard to the online explanations of Buddhism for the Disabled by a wonderful blogger, I learned to be mindful and patient and to determine the difference between pain and suffering. I encourage everyone to look into these ideas. They are extremely helpful. Mostly, as I have mentioned in the past, the daily devotionals of Joyce Meyer strengthened my faith.
I learned to ask for wisdom to get me through. Even on the darkest days I called out to God for wisdom to make the right choices, to lead me to the right physicians and researchers, to guide each step, to give me strength and patience. A few times I slipped into dread and worry, and I know it was God who provided peace and brought me back into the light. There have been many random acts of kindness, strange coincidences, and even miraculous events where God showed His presence.
One such episode occurred in early 2015. I had always struggled with hypoxia and air hunger, but this particular morning was really bad. I could barely breathe and it felt like my chest would explode. Suddenly a great push of air entered my lungs. I began breathing without gasping, without chest pains. I had just cried out for help and breath was blown into me. I haven’t suffered an episode of intense air hunger since. Another time I had a terrible reaction and within minutes of asking for direction I did an online search and found a researcher. He lived over 5000km away and just happened to be in his office on a Sunday morning, able to take my call and explain his findings to me. Because of speaking with him, his generosity and kindness, I was able to deduce I had grown toxic from one medication and needed to stop taking it. He always sustpected that a possible parasite was causing my new symptoms. I later tested positive for said parasite and found proper treatment.
Another day I woke not feeling strong or steady. It was too early for the check in phone calls from my mom and husband that came each morning and Marcel had already left for work. I couldn’t remember Marcel’s phone number or how to find him in my contacts. I just stared at my cell phone. If you aren’t sick and you don’t have brain fog this may seem unbelievable. My blood was thick; I could feel “lumps” passing through my chest. My joints ached, my limbs felt really heavy. I forgot to fill the syringe of Lovenox the night before, but desperately needed to do a blood thinner and rehydrate. I needed a painkiller before I could start my normal regime. Although the Bell’s palsy and immovable legs had resolved, my body was not really in conjunction with my mind. Walking was possible but I couldn’t necessarily feel my legs. I wobbled around, bumping into the door jamb, then the hallway wall before descending down the stairs to the kitchen.
I needed a glass of water, but again, due to brain fog and hypoxia, could not recall which cupboard contained the glasses so I opened numerous cupboards. Then I found the bottle of painkillers, but I couldn’t grasp the bottle at first, I kept missing it. I saw it clearly, my arm moved towards it but my hand took time to connect. Then nightmares of all nightmares…it had a safety cap. By now the room was spinning and I had stabbing chest pains. My uncooperative hands finally got the lid off with quite a violent maneuver which caused pills to fly out of the bottle and land all over the kitchen floor. I knew bending over would cause too much pressure in my head, it was just easier to crumple onto the floor and grab one pill while seated on the linoleum. Thankfully I had brought the glass of water to the floor with me. I sat sipping water and leaning on the stove. I was not cognizant of how to phone Marcel for help. And just in that moment, two hours earlier than the usual check in, my phone rang. I saw the green phone symbol and remembered to tap it. Voila, there was Marcel on the other end.
I muttered something about needing help. When he opened the door a few minutes later I heard his surprise. “Were you wrestling with a demon or a pill bottle? This place looks like a poltergeist entered!” Cupboard doors stood ajar, drawers remained open. The glass had tipped over, water streaming next to pills scattered across the linoleum. I guess it did look like quite the struggle. But he knew to call at that moment and was able to leave work to help. I could have been left sitting there for quite some time without help but he felt the urge to check in early.
These are just a few instances where God made His presence and caring known. In praying for direction and wisdom, in asking to hear God’s voice and to have His help, really makes a difference in my fight to get well. I never feel alone. Death does not scare me, nor does getting well and forging a new path. Each day has a purpose and I can even enjoy my everyday life. My priorities have changed and what makes life worthwhile isn’t any of the things disease has taken from me.