Sorry I haven’t posted in a long time…I’ve been really busy sleeping (SO CRAZY, I know!) and expending much of my remaining energy trying to care for sick family members, help my mom, and get my life back on track. Anyhow, I was getting my hair cut a couple of months ago for the first time in a very long time. When you’re as sick as I was, things like a haircut seem so trivial and are the absolute last thing you think of or care about. I finally felt well enough to start doing things like that again, so I went.
As the hair stylist was playing around with my hair and asking me about what I wanted done, she blurted out, “Did you just have a baby?” I was a little surprised by this question, and jokingly responded, “No, not that I’m aware of…” I then proceeded her to ask her why she said that to me. Did my hair really look that unhealthy? Yes, it had been falling out in clumps. So much so, that I felt like a cancer patient going through chemo. I was even starting to seriously consider rocking the Mr. Clean look with my daddy, who is currently undergoing chemo. Anyhow, she responded by saying that a lot of women lose a bunch of hair when they go through a pregnancy, but she was seeing a lot of re-growth, which was a good sign. I then gave her the cliff notes on my life story, and she reassured me that it was growing back and starting to look healthy again!
I should also mention that I’ve put on a good 10-12 lbs or so (which may not seem like a lot, but when you’re down to 91 lbs and looking like skeletor, that’s more than 10% of your body weight, which is a huge improvement). Also, my body temperature is up by at least a couple of degrees. At this point, most of my symptoms have lessened dramatically or completely gone away (for the most part). I still have bad days, rough mornings, and the occasional really bad day, but over all, I’m doing so soooo much better! My memory is even coming back- sometimes I can even remember things that healthy people don’t! I feel like remission is so close, I can taste it!!!
My biggest complaint at this point is debilitating fatigue (which I’m totally fine with, as I look back in disbelief at how bad things were just one year ago; when I really think about it, it seems like such a hellish nightmare that it couldn’t have really happened, but it did). The fatigue I’ve been experiencing lately is to the point that I am literally unable to move, and it’s baffling that as a former insomniac I just cannot stop sleeping. I’m not complaining by any means. I’d waaaay rather sleep like crazy than be tormented by my mind and body all day and night, unable to sleep or ever escape it all. Perhaps my body has finally reached the point where it feels like, ok, now I can really heal.
First of all, let me emphasize that I would NEVER EVER EVERRRRRR want to re-live the last few years of my life (in regards to all of my health struggles and medical obstacles). At the same time, there are things I’ve experienced and learned (both good and bad) that I wouldn’t trade for anything: people I’ve met because of my illness whom I’ve grown to love and admire deeply, old friends I’ve reconnected with, new friends who have come into my life, and true friends who have really come out of the woodwork to help me and care for me. And then there are the paths my quest for healing has taken me down: the connection to a community of the strongest, kindest, most genuine, loving warriors (as well as healers) whom I would never have known, had I not been stricken with this life-shattering illness. It’s something that has provided me with so much wisdom, and a richness to life that I wouldn’t want to know life without (as much as all of this has sucked beyond most people’s comprehension). The perspective I’ve gained on life and loss and grieving and healing is truly beautiful, through all of its pain. It has comforted me in times that prior to this journey, would have completely destroyed me.
I’ll never forget the day I was finally diagnosed, and the words Marge spoke to me that still stick with me today, and probably will for the rest of my life…
“You’re going to lose a lot of friends and loved ones because of this disease.”
Immediately, I brushed off what Marge said and tried convincing myself she was wrong, but I just couldn’t get the those words out of my mind. I didn’t want to believe she could be right. Maybe it was true of a lot of people’s friends and loved ones, but not mine. Mine were different. I knew them well enough and wanted so badly to believe that their love for me was unwavering…that they were somehow superhuman, and therefore, would have the strength to stand by me through the darkest, most trying times of my life. Some of them were, and words would only diminish the love and respect for those incredible beings- the ones who have continued to love me unconditionally and have remained the most genuine of friends and family; the ones who have always understood when I’ve had to cancel plans at the last minute, or have picked up on my wincing in pain…trying to hide my symptoms as much as I could. They’ve known when I’ve reached my limit and needed to rest, and never faulted me for doing so. You know who you are, and I hope you know I would do anything for you in the blink of an eye- but I’ve always been that type of person…it didn’t take my illness to soften me or make me more compassionate.
After I was diagnosed with Late Stage Lyme Disease, almost immediately followed by a giant hemangioma on my liver, so many of my closest friends and acquaintances rallied around me and were extremely sweet and supportive. Unbelievably, there was opposition I faced by certain individuals who I truly believed would have my back for life- ones who actively tried to prohibit my efforts increase awareness about the fastest growing infectious disease in the world, and also tried to stop me from raising funds so I could pay my ever-growing stack of medical bills, as well as afford continued life-saving medical care and treatment.
Most people went out of their way to show their care and concern for me- they sent sweet messages, flowers, and donations for medical bills; they took me in when I needed a place to stay, gave me rides, accompanied me to medical appointments, and even helped to educate and spread awareness about Lyme Disease. I have been moved to tears many, many times by the kindness of my incredible family, friends, clients, acquaintances, and even complete strangers. To this day, I still am, and I will never forget anyone for their help, kind words, encouragement or support…or even for simply believing me.
Unfortunately, over the course of my illness, I have lost many people I loved dearly. I honestly believed these people loved me, too, but you don’t just bail on someone you love when things get tough- especially not when they’re at their lowest point in life and they need you more than anything. For some ‘friends’ there comes a point when the initial shock of your diagnosis wears off and they start to resent you because you aren’t getting better fast enough (it’s almost like how could you possibly STILL be sick, or how could yet ANOTHER thing go wrong in your life?), but you are still very sick, and it is one thing after another after another after another. It doesn’t seem real to you, either. This isn’t what life is supposed to be, is it?
Some people start judging every little thing you do, or say, or buy, or eat, or don’t eat (we have very restrictive diets), or how many pills you swallow in one large gulp (yes, I’ve made a game of this…oh, the joys of being a Lymie), or the crazy treatments you’ll subject yourself to because you are so desperately fighting to survive. Maybe you aren’t treating yourself the way they think you should (although they have very little knowledge about Lyme Disease). And if you try to pull it together, paint on a smile, go out for a night like a normal human being, and attempt to have a bit of fun, then you either aren’t really that sick or you aren’t taking your disease seriously. No matter what, you lose.
Maybe your life becomes too depressing for them to deal with, or they’re sick of you getting so much attention. Well, you can gladly have all the attention that I never wanted anyway, along with my Lyme Disease!!! I’ll trade you for your fancy job (that I worked so tirelessly to educate myself to have someday), your nice apartment, your designer handbags, your social life, your health, your energy, your physical strength… But honestly, I would never want anyone to suffer the way Lyme patients do. I would never want you to understand our pain.
Perhaps these people just want you to be the fun friend you once were, but unfortunately, that isn’t reality and that’s not how this disease works. Chronic means ongoing…that it doesn’t end, and although remission is possible, it’s a long and terrifying road to make it there. There isn’t a cure or an easy solution. Unfortunately, we don’t just ‘get better’…especially not overnight. To even get a proper diagnosis, it often takes an army of doctors years to figure it out (or a Lyme patient a matter of seconds, but we have no credibility; no credentials on the wall)… Neurologists, Gastroenterologists, Cardiologists, Rheumatologists, Endocrinologists, Nephrologists, Dermatologists, Opthamologists, Lyme Literate Medical Doctors, etc. I could keep going, but you get the point. Then, there is the ever perplexing puzzle of how to treat this multi-systemic, multi-pathogenic disease. We’re fighting for our lives, we’re fighting for access to medical care, and we shouldn’t have to fight for our loved ones to keep loving us.
I’ve had to teach myself how to let go, and I’ve never been good at doing so, but there’s something so freeing about it. Something about not giving anyone the power to hurt you or cause you any sadness, distress, or grief beyond the initial wound(s). I cannot explain the amount of loss we as Lyme patients endure: the loss of our once healthy bodies, our once brilliant minds, our ability to communicate, our memories, our independence, our confidence, our ability to work (and along with that, our income), our ability to socialize or speak coherently, or even get out of bed and complete simple tasks like showering or feeding ourselves.
There was a time when managing my meds was my full time job, but I was still trying to somehow work so I could pay for my bills, meds, and supplements. I spent most of my days in waiting rooms, doctors offices, hospitals, and ERs, and almost every other second of my life writhing in agony in my bed. It was a miserable existence, but I did everything in my power to not allow it to break my spirit. I still tried to maintain relationships as best I could, and really tried to have a life outside of my illness.
I realized early on that I could not control my circumstances, and that I had two choices: to be a victim or to be a victor. I could quickly become someone who was pitied (which was the last thing I wanted) or I could become a source of hope and inspiration. I could transform my suffering into something positive- something so much greater than it was, and that is exactly what I chose to do. I decided that no matter how much I was hurting (physically, mentally, or emotionally), I was going to rise above it. There’s a saying that goes something like, “Everything in your life is either a blessing or a lesson,” but I decided to take that one step further and convinced myself that everything in my life was both a blessing AND a lesson. No matter how difficult, I’ve been determined to find the blessing in each and every lesson. Once I began to do that, my life became much easier. I began to heal more quickly.
I no longer felt the need to harbor any sadness, anger, or resentment towards those who had hurt me. I still cherish the fun we had and the great memories we shared. I just see them very differently, now. I actually feel bad for them. People like that must be very unhappy with themselves and their own lives. If you can sit there and watch someone you loved for years hit rock bottom, sobbing uncontrollably, on the verge of a breakdown and a relapse, and you have the power to help or even just comfort them, but instead, you do absolutely nothing but listen to them cry, then I truly feel bad for you. You will never know true happiness, because happiness is found in giving, helping, and making someone else’s struggle a little easier. It is not found in taking joy in their misfortune.
Letting go is much easier said than done, but I’ve had a lot of practice at this point, and I’m getting much better at doing so. I’ve also come to understand that some people don’t deserve one of those coveted spots in my life, and their actions (or inactions) are in fact a blessing, for they are making room for others who are much more deserving. Certain ‘so called friends’ may never understand the depths of sadness and despair I’ve felt, or the additional pain they’ve caused me, but I’ve put it behind me; it does not serve me, so I’ve let go of it.
Those people will probably also never know the gratitude I have for the wonderful, deeply caring individuals who have come into my life, or the ones I have become closer with as a result of this healing and transformational journey. I have Lyme Disease to thank for weeding out the people who didn’t deserve to be in my life, and making room for all of the people who do…the ones who are full of love, light, compassion, and selflessness. Life certainly isn’t easy, and if it is for you right now, it won’t be forever- I can promise you that. I hope you are as lucky as I am, and that you find yourself as blessed by all of the challenges life brings your way. When you’re faced with the choice, I hope you choose to be a victor.