Learning to Walk Again

Stay focused. One foot in front of the other. Go slow. You can do this.

These are the encouraging remarks I whisper to myself as I wobble down the street. I can barely walk straight. Everything around me is bouncing and shaking. The ground feels so unstable. In reality, it’s just me–I’m the earthquake. So this is 30, huh?

I knew my 30s would be harder with my health, but this I did not see coming. My body is now literally rejecting gravity. And there’s nothing I can do about it but wait.

A fair warning: If you’re looking for an inspiring or amusing blog post, this isn’t one of them–so I suggest you keep browsing. I’m fresh out of snark.

Rarely do I complain about my chronic illnesses. Rarely do I dwell in depression. Rarely do I fill with anger. Rarely do I fret or cry or snap over my terminal disease. Rarely do I take a day for granted. And then shit goes so far south that I begin to lose it. All of that gratitude and peace and positivity that I cultivate year-round starts to fray. Now, it takes a lot for me to fall to this point. But here we are.

I took a bold risk when I went on a solo trip to Paris to celebrate my 30th birthday. (I’ll finish that series later when I’m in the right mental space). The irony is the trip was all about appreciating my life and gratitude for everything I’ve overcome and for even making it to 30–an age that was once the average life expectancy for someone with cystic fibrosis. I knew I’d get sick after and have to go on IV. That’s par for the course.

But this time I went on some new IV medications. One of which happened to be a high-risk medication. It isn’t common, but the drug can cause permanent damage to the kidneys and inner ears. I always talked my way out of this class of drugs before because I’m a diabetic and my kidneys are already under strain. But it was Thanksgiving and I was so sick and the doctors said I had new types of bacteria in my lungs. So I read the warnings on the paperwork, eyed the consequences with trepidation, took a deep breath, and signed on the line. It probably won’t happen to me, I thought.

Two weeks later my lung infection cleared up. I hooked up the drug for the last time and I went to bed. When I woke up I had this strange vertigo. I could barely walk. Admittedly, I had this a couple times before but it usually went away within minutes. Except this time it stayed. Three weeks later it’s still constant.

In my gut I knew it was from the medication. It damaged my ears. My CF doctor dismissed it as some viral infection. Because those serious side effects rarely happen, right? 1 in 1,000 they say. A week later, after decongestants did nothing, I went to an ENT. Essentially the answer was they can’t prove the exact cause, but the timing with the high-risk medicine is awfully suspicious. “My hunch is it’s from the medicine. All we can do is wait to see how your body recovers. Eventually the brain learns to adapt and adjust.”

Right. Real cool, Universe. As if I didn’t have a hard enough time fucking breathing and keeping my sugars down and avoiding certain foods. Now I have to worry about walking up stairs, or standing up from a chair quickly, or car rides, or weaving through crowds.

What the hell. I’m sick of this shit.

Deep down I trust God and the Universe so completely. I also believe everything happens for a reason. I know somewhere in this muddled mess is a lesson. But for the love of God I can’t see it right now. All I know is I’m pissed off and upset. Every day I’m on the verge of tears. Frankly, I have a right to be. I’ve learned that it’s OK to get angry and to be sad. You have to acknowledge and accept and feel those emotions.

The what-ifs are killing me. I’m trying to prevent my thoughts from spiraling into despair and anxiety about the future. How will I learn to function like this? Will I be able to run or do yoga again? Can I swim or walk on the beach or have sex or dance like I once did? Everyone tells me this won’t be permanent. While I do believe them, I’m also not sure how well I will recover. I doubt I’ll ever be the same again. Permanent damage is permanent damage. What’s done is done.

What’s giving me hope is that I have seen some slight progress in the past two weeks. Granted, it’s also been Christmas vacation so I’ve been resting more and haven’t been in my routine. But I’ll take any progress at this point.

The two things this “situation” is teaching me: patience and presence. I have to be patient while my body heals itself–to whatever extend that may be. I have to be incredibly mindful of every present move I make–literally, so I don’t fall over. And yes, this is also teaching me a new level of gratitude. In case you’re wondering, there’s nothing more humbling than losing your equilibrium.

OK, I guess this post does end with a little positive spin. My mood and body fluctuates day to day, to be honest. The other day I was in a very bad head space about all of this. Then my friend and old roommate Laura invited me to dinner. I knew continuing to sulk was a bad decision. So I got off my ass and I’m glad I did. Laura and I started reflecting on the year and how fantastic it was personally for both of us.

And I have to remember, even though it’s ending on the sourest note in many years, 2017 was a great year for me overall. I need to hold on to that–now more than ever. In fact, this summer I wrote this on my Instagram post: “There’s been so much good lately and I’m enjoying and appreciating this time because I know it’s all temporary.”

God I hope I get there again. But for now, 2018 is going to be a year of healing.