Now What

This post wasn’t the plan. I'm working on other posts about navigating the medical system and testing, but I fell down the rabbit hole again...

Four. Four times I have had to take a leave of absence from work over the last three years. Last week I had to take another leave of absence from work, leave for the rest of the year. This is the longest leave I have ever had to take (not counting the year I didn’t work). A few years ago, I used to never call in sick to work. Despite working hard to keep up my energy and stamina this summer, I only made it through a week and a half this Fall semester before I started to hit The Point of No Return—the dreaded long period of being bed-ridden after having to push myself past my limits. 

The semester didn’t start well. My teaching schedule included 9 hour days with driving and teaching hours in a row without a break. Something has changed. This time last year, I had almost this exact same schedule. I struggled, but I could do it. The difference now is shocking to me. I decided to no longer stand or walk while teaching (something I should’ve been doing last year). So I would sit and try to teach, but it wasn’t enough. I could barely move and the disabling, new symptoms I have been experiencing this last year—losing my mobility, intense weakness, difficulty breathing, etc—were getting worse. Driving has gotten much more difficult and a little scary, which makes commuting complicated. 

I had been mentally preparing for having to take a leave of absence all summer. After the sheer brutality of last semester (including hitting The Point of No Return twice during it), I knew it was a definite possibility. I just didn’t expect to only make it a week and a half. 

My health has gone downhill this year, and I'm in disbelief with how much less I am able to do compared to just a year ago. But I am learning how to accept this and try to work around it. I feel incredibly guilty about having to go on leave but realistically I didn’t have any other choice. I’m thankful for how supportive my work has been and that I can have this time to focus on my health.

So now I am trying to speed along the endless appointments and tests I have been doing this year. I believe they are getting closer, and I am currently being tested for Myasthenia Gravis, but nothing is for sure. I am trying to rest. I made myself a schedule to work on other projects like writing, painting, music, cooking (while sitting of course), hobbies and passions I haven’t had any energy for the last few years. But I already miss work. I am a workaholic to the core. I told my husband I’d even take a stack of essays right now and he said, lovingly, “you have a problem.” Yea, probably.

I’m still fighting. I’m still pushing forward. Despite these struggles, I have a good life and I’m working on being well enough to enjoy it more. Adversity, ain't no thing. As Maya Angelou said, "Still, I rise."

The Long Haul

This post is filled with some brutal honesty and thoughts that have been going through my head for some time now, and I want to be authentic and post it. I think often about what I wish I would have known when this thing started a few years ago. There are many, but most of all I wish someone would have told me that this would be a long haul, a battle without an end. I was completely ill-prepared for the endless questions, suffering, progression of symptoms, testing, appointments, grief, and slowly but surely losing my ability to do the things I love. I wasn’t prepared for the stamina required to fight so hard.

Since this started in early 2011, I have always had this thought running through my head: “It will get better. My doctors will figure it out, I’ll get better treatment, and then I can get back to my life.” When I got ill and left school, I expected to go to a few appointments, get some answers, and move on. I had no idea what a behemoth Western medicine is, a convoluted matrix where the patient must coordinate his/her own care and grasp for anything meaningful that appears. I had no sense of the excessive amount of time from onset of symptoms to diagnosis and treatment. No idea how much energy I would need to read through piles of bloodwork and notes from doctors to find anything tangible, figure out which appointment and test is next, which doctor to add to the perennial, growing list of specialists, research to see what other patients are doing. Baby steps and waiting. The endless, soul-sucking waiting that never ever ends. I had no idea. 

I discussed stamina in another post and it’s something that I have been thinking a lot about this year, particularly because my health has taken a sharp left turn and I’m back on the long road to diagnosis again, rapidly losing my mobility. I’ve been thinking about how much I just want a day off. One day where I don’t have to fight so hard to do all the right things: take all the medication and vitamins at the right time, exercise, drink enough fluids, get enough salt, rest but push myself just enough, get enough sleep, eat the right things, go to all the appointments and tests and be willing to do whatever they say, try to have a life. Work so hard all the time, yet continue to go downhill. But I work hard every day because I need to know that I am doing everything in my power to try to have some semblance of quality of life. I like to be in control and it gives me—to some extent—a feeling that I am a participant in my own health. 

When I heard the news recently that Robin Williams had been diagnosed with Parkinson’s disease before he committed suicide, I felt so much compassion for him.  I don’t know what it is to battle addiction, but I have dealt with depression my whole life and chronic illness will take you to even darker corners of your mind. On the worst days, the thoughts that run through my head are unmentionable. When I look into the future right now, I don’t see the horizon. I see the edge of a cliff. I wonder if that’s what he saw too. Chronic illness and depression go hand in hand, and depression can magnify illness. The real battle is not the illness itself; it’s keeping a stranglehold on hope.

Yet, the future is not pre-determined, and many times I believe we think that when the worst happens we won’t be able to deal with it. The human body and mind are designed to survive and thrive and people can amaze themselves with what they are able to overcome. Chronic illness is no different. Hope and perseverance is all we have in life because there is no alternative. The stamina it takes to thrive and keep going in the face of illness is grueling but it’s possible. I won’t mention any hackneyed phrases about “staying positive” because I can’t always manage it. Illness is a long haul, but so is life. It is possible to have some faith in yourself and your body to sustain the muscle memory to keep going—to wake up every day and just keep going. You can look into the future and see the edge of the cliff, but you can still make the most of the walk before you reach it. 

Stamina

I said the next post would outline what helps, but I have had something else on my mind for some time now. I’ve been having some dark thoughts lately and struggling to keep my death grip on hope. When this deal started in 2011 and I had to leave school, I thought I would go to some appointments, get a handle on whatever was happening, get some rest, and get on with my life. Instead I went to many many appointments and battled to find doctors who would believe me. I thought when I got the diagnosis and a medication regimen that I could move into the maintenance stage and get back to living. That hasn’t happened yet. Then I started having trouble walking and they told me it is unrelated to my condition. It’s something else. Something else to diagnose, test, and define. My heart sank. I thought about all the time and energy I had spent to get to where I was and that I was going to have to start over. Three years straight of appointments and tests, and now that I’m working I have to figure out how to manage my health and do these appointments. Can’t I take a vacation and have some normalcy? Just go to work like normal people and not have to ask myself  every single day “Am I going to make it today?” I have to accept that the chaos has become my normal. 

 

I had an appointment at Stanford this week and I cancelled it. I keep thinking “What is this all for? What am I getting out this? Am I going to have to do this forever?” I know there are more tests on the horizon, more medication changes, more trying to figure out how to do all of that while working and maintaining a semblance of a life. I am stubborn and determined to an absolute fault. The first two years of this thing I went to all of those appointments and fought hard to rebuild my life without question, but I feel that fight fading right now. This isn’t me. This is not who I am. I am a fighter to the core. How do I keep up the stamina to keep doing this?

I can imagine a better life where my symptoms are managed, where I’m not going to constant appointments, where I'm not missing work because I’m ill, and I have a life with hobbies and passion again. I can see it and I will keep fighting for it. My stamina is waning but I have the muscle memory of courage and perseverance to rely on. I can press on. The fight will come back. I know it will. 

I’m going to share some of the writing I’ve been doing for myself the last few years. Here’s a poem I wrote about the very first test I did in September 2011 before I was officially diagnosed. It was an echocardiogram. It was the first time I had to intimately experience the fragility of my own body and life, an intimacy you have to learn to get comfortable with in the battle with chronic illness.

Echocardiogram

She said lie still, pressing sound waves into my chest

Wrapped in linen, I saw the open of my heart

Bouncing, auditory unrest and electricity

Black and white fabric of innervation

I stared into the Gorgon of mortality

Oh—that’s all?

I could bite it. Rip the skin. Tear the flesh

Taste finality in song

Unfurl this skin and find the final gate

Heard the swirling of blood, the violence of life

I looked inside

And gaped with savagery. It was unknown to me. A figurative lesson no more.

I saw the open of my heart and wanted to crawl inside

My essence—like coming home