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No More Lyme Lives Lost

My heart is broken and I am filled with anger. In just this past month I have heard of three more deaths due to “complications of Lyme Disease.” And the saddest part is that these “complications” could have potentially been avoided. All three took their own lives. Unfortunately, suicide has been becoming an all too common cause of death within the Lyme community. Can you imagine how intense the pain, suffering and emotional hurt of this disease must be that sufferers see suicide as their only source of relief?

I would be lying to you if I didn’t admit that this alternative was one I had seriously considered multiple times throughout some of my darkest days living with this debilitating disease. I always prided myself on my Type A personality, my many accomplishments, all the things I did for others. This disease, without warning, stripped me of everything that I believed made me, “me.” I went from being able to do just about anything I ever put my mind to – to being mostly bedridden.  Where was the value in that? What was my purpose? I felt useless, worthless, and a burden to all those around me. Then add in the actual physical symptoms. Excrutiating bone, joint and muscle pain. The intense pressure within my head, face and chest. The weakness and exhaustion. The vertigo and dizziness that made me walk like a drunk bouncing into walls when I turned the corner. Needing to hold onto furniture and chair rails as I made my way from the one room to the other; and that was on the days I could walk. I had multiple periods where I completely lost the use of my legs; and other days where the best I could do was literally crawl from my bed to the bathroom. 104 fevers many days of the week for almost 2 years straight, causing drenching sweats, rigors, full body tremors and seizures that hurt like hell. The panic and anxiety attacks. The feelings of depersonalization – as if I was living outside of my own body in a dreamlike state.  The fizzing and tingling that alternated with raw, burning sensations. Looking like some kind of freakish monster with half my face drooping due to the recurring Bell’s Palsy. One hospital stay after the next. Having to live away from my family for the better part of two years due to the fact that no doctor in my area was qualified to treat what I had.  Worse yet – no doctor in my area who actually believed that Lyme Disease and the many coinfections I was infected with could actually really be causing all of these crazy symptoms. Multiple IV’s and over 82 pills to be taken every day.  To this day I still find myself awakening in the morning from what few hours of fractioned sleep I could reap thinking, “oh shit, here we go again.” As soon as my eyes open – immediately after thanking God for another day – I begin to take inventory of what my body is feeling that day. I could go on and on with the physical horror of this disease, but what is even harder for most Lyme patients to endure is the way they are treated. Or should I say, mistreated.

To be feeling these things physically but to not be believed is more than anybody could possibly bear. To have doctors say that you couldn’t possibly be feeling these things because you’ve already had your course of antibiotics and “should” be better. To have family and friends look at you in disbelief because you “look so good” and accuse you of being lazy or just looking for attention. I couldn’t even imagine.

I have been beyond blessed with such an amazing support network of family and friends – and I still struggle with these thoughts some days. I couldn’t even begin to imagine what it must be like to deal with this illness completely alone – with nobody believing you, nobody caring for you, nobody supporting you, and nobody loving you. If I can have periods of feeling worthless and invaluable even though I have an army of loved ones reminding me of the opposite truth; If I have days where I feel defeated and ready to give up even though I am surrounded by people assisting me and cheering me on…how in the world could anybody do this alone? In all honesty if it were just me, who knows – I might have followed through on one of my dark thoughts during one of my roughest periods.  But I am so glad I didn’t. Look at all I would have been missing.

What saves me from taking such a drastic permanent action to end the pain? Keeping my focus on my blessings. As I look into my husbands tired and weary eyes – wondering how he keeps a smile on his face and a continuous upbeat attitude with all he endures as my partner and main caretaker. He continuously cheers me on with such love and encouragement. How could I possibly throw in the towel and stop fighting when he constantly fights so hard on my behalf? When my beautiful daughters tell me how thankful they are for my love and then go so far as saying I’m their inspiration and role model – how can I teach them to be fighters and then give up on myself? My precious grandbabies, breathtakingly beautiful grandbabies! I would have missed being present at both of their miraculous births had I followed through on that momentary thought of ending it. And I would be missing the joy they constantly bring to me – they are my heart! What would it have done to my parents? I would have missed being there with my dad during the final days of his battle with cancer…loving him through to the other side. I wouldn’t be here today to hug my mom and be the loving supportive daughter she needs and so rightly deserves. What would it have done to my brothers and sisters who have been my best friends my entire life? My nephews, nieces, friends, and fellow Lymies? All I can say is that I am so very glad that I reached out for help and did not follow through on what seemed and easy way out of the physical and emotional pain.

I think aside from the anger I feel about these latest deaths, I am honestly feeling a bit of fear. Fear of the very real possibility of that thought someday unexpectedly resurfacing. If you knew the history of these latest victims of these senseless deaths, you would see that they were well known in the Lyme community as true warriors. They were strong supporters of their fellow Lymies and some of the biggest advocates for the much needed change we are seeking. Change they were hoping for not only for others – but for themselves as well. I don’t know for sure, but I imagine as they were being upbeat for those around them, running their support groups, working on their latest campaign, bringing awareness to their communities – suicide was the furthest thing from their minds. They probably had no idea that in the days ahead something would distort their thinking causing them to decide death to be the only way out of the endless pain and suffering. Quite frankly, as someone who has been sick and riding this awful rollercoaster of hellacious symptoms for a dozen years, that scares the crap out of me. How do I know that one day down the road my own mind is not going to go down a deep hole and in a moment of pure physical and mental pain and agony, I might make a decision that can’t be undone?

That is why we all must unite and continue to fight for change and why we must continue to talk about this subject.  We need to make it clear that we are here for each other. We need to make the necessary resources known and available to each and every individual who is struggling.  And I’m not talking exclusively about Lyme Disease sufferers here.  I am talking about EVERYBODY EVERYWHERE GOING THROUGH ANYTHING! Even though our minds might like to tell us we are alone and this is the answer to our pain, we need to know that none of us are ever truly alone.  There are people…there are resources…and your life absolutely matters!  We need to make it our common goal that no more lives are lost to suicide!


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