Please Allow Me Time to Grieve the New Realities of My Chronic Illness

Recently, my health has taken a drastic change for the worse. There had been a slow decline for the past seven months with my overall health, that unfortunately has gotten to the point where I’m losing my ability to walk again.

Ten years ago, my life was forever changed when I was finally diagnosed with Lyme disease, around eight co-infections, and several autoimmune conditions (chronic inflammatory demeylinating polyneuropathy, autonomic neuropathy, postural orthostatic tachycardia syndrome, to name just a few). It was suspected that I was sick since I was 3 years old, and my immune system finally saluted me with its middle finger and began violently attacking itself, and it sucked.

I slowly lost the ability to walk over a few months and ultimately became paralyzed from the hips down at 16. The paralysis lasted around nine months, and all together I was unable to walk properly without any kind of aides for three years.

Now, it’s happening all over again.

And no, having been through it once before doesn’t make it any easier.

What healthy people miss when something devastating happens to your health is that there is an inevitable grieving process that takes place. You go through the stages of grief, which consists of denial, anger, bargaining, depression, and finally acceptance.

The first time I lost the ability to walk, I had my heart and mind set on overcoming every obstacle that came my way in order to walk again. It was a long, grueling process to not only to learn how to walk again. It was a journey that consisted of learning how to sit up by myself. It consisted of re-learning how to stand with machines and contraptions for as long as my body would allow, which was a few seconds at a time. It was re-learning how to stand on my own, move my feet properly, how to go up and down stairs and how to jump. It was how to walk with braces and aides like high heels, which helped my legs stay straight…something I couldn’t do on my own. There was a lot of falling down, trying relentlessly to get back up while crying in sheer frustration, only to fall again.

What kept me going through my journey were some very special people I’m blessed to call my family, and friends that have become family – including the very strong and courageous Lyme community. But aside from my incredible support system, my aspirations kept me going. I wanted nothing more than to kick Lyme in the spirochetes, walk again, and become a firefighter paramedic.

Yes, you read the last thing right. A female, standing at 5’1” with the world on my shoulder in chronic illnesses, causing me to use a wheelcair, wanted to become a firefighter paramedic…one of the most gruelingly intense occupations around.

Eventually, the day came where I proved everyone wrong and walked again without any additional help. Regardless of my pain and fatigue levels, I worked out every day, sometimes multiple times a day at home, because I was going to accomplish every goal on my list. And when the time was right, I did it all. I earned my paramedic license and I pushed like hell through a firefighter program to earn my firefighter certifications. I became a volunteer fireman in the town I was born and raised in, and I loved it.

It was a struggle for someone like me. I was fatigued, in pain, but with determination, I was making the impossible, possible. I was doing what I loved every chance I was physically able to. Until my autoimmune conditions reared their ugly heads and I started losing the ability to walk again.

The first few days, I was in denial that it was happening. How? I knew that it was possible, but why me?  I had felt my legs getting progressively weaker for months upon months, but why now? Why now, when I was trying to earn my career? Then, the anger set in. I was angry at myself. I was angry I am out of options to treat my neuropathy and that my body can not tolerate the treatment for it, yet my body desperately needs it. Maybe there were more supplements I could’ve taken, or maybe I could’ve exercised even more to stay strong, though it wouldn’t have mattered. I was angry that this setback caused me time I could be spending on becoming healthier and stronger so I could make a career as a firefighter paramedic, something I worked so very hard for. At times I began bargaining – I promise I will never complain about how much pain I’m in or how fatigued I am again if I just get my legs back so I can go back to what I love, back to my life with friends and whatever little socializing there is. Back to planning for future endeavors in advancing my education both medically and in fire science. I was excited for the future, regardless of how sick my chronic illnesses made me feel every single day.

Now I’m somewhere stuck between the “depression” and “acceptance” stages. I am going to say I am upset rather than depressed, because I am thankfully able to pull myself out of this stage. Though I still remain relentlessly hopeful, I’m upset. I’m upset I’m in even more physical pain, I’m even more fatigued, and that I can barely walk with a walker at this point. But I am beginning to accept more and more each day that this is my life right now, and if I overcame this before, I am determined to overcome this again.

What astounds me is that though I only became unable to walk not even two weeks ago, some people do not believe I should be upset over things. That I should solely focus on healing.

People with chronic illnesses aren’t robots. We can’t turn off our abilities to feel emotions that comes along with the rollercoaster journey that just unfortunately happened. We aren’t happy that we are chronically sick, but we sure as hell make the best of it. We aren’t happy that we don’t know how our bodies will be one day to the next, but we sure as hell use our time wisely. We aren’t particularly thrilled over the fact that some flares are extremely catastrophic, and we don’t know when that will happen. It’s hard when your life is altered in difficult ways, and you have no control over it; no matter how positive you are, no matter how many supplements or treatments to take or try…it is the nature of the beast that we tirelessly try to tame. You have no control over your health deteriorating, or the severity, or for the length of time. You have no control over when the next time your life and health will fall apart again.

But that’s the thing about chronic illnesses – you don’t know when things like this will happen. So when you are at a point where you can physically go after something you want to do, you do it, because you never know when the next time you’ll be able to again. I wasn’t anywhere near remission. I completed most of the paramedic program with a peripherally inserted central catheter (PICC line), enduring treatments that made me even sicker. Even throughout the firefighter program, I endured treatments that made me very sick, a bout of aseptic meningitis, and no one knew it. But I was walking, so in my heart I knew it was my time to make the absolute most of my life, because I never knew when the next time would be where I wouldn’t be able to walk again. I worked so hard to manage my health and accomplish my dreams because I didn’t know when the day would come when I wouldn’t be able to. I made the best of my time that God allowed me, and I’m so beyond grateful that I had that time to accomplish as much as I did.

So, to the healthy people out there who have a friend or loved one who are battling chronic illnesses, please support them and allow them to grieve. Understand that it’s not that simple, that we are trying everything – not only to improve our health back to baseline, but to muffle through the initial grief. Don’t belittle their emotions. They will go through phases of grief, it’s to be expected and believe it or not, it is a part of healing.

Here I lay, watching the sun rise. It’s a beautiful thing to be able to witness the sun rise again after darkness. There have been more rough patches than I can count throughout my journey, and this is one of the more difficult ones. I have a long journey ahead of me, but nevertheless, I persist. Just like the sun will surely rise again, I too, will rise again.  I will rise again from the ashes and destruction that my chronic illnesses causes. But this time, I will rise with the whole f*****g fire.

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Gettyimage by: MarinaZg