Very few people know what I am about to share. It will remain that way unless you have chosen to read this. Not because it is a secret or that I purposely kept it one, but because I didn’t know what to do with the information and needed to spend a very long time processing it. I am not entirely sure why I am sharing it now other than there has been this weird internal push to do so. Almost like a voice saying, “if you would just get this part out of your way, you can move forward.” Which is weird because I feel like I was moving forward.
At the end of 2019 I got very sick. A lot of people did. We probably had Covid before it was believed to have arrived in the US. You were hearing about it happening overseas and apparently it didn’t get here until February of 2020 but whatever. I had never been as sick as I was that fall/early winter. Multiple viruses at one time. Enough that my Dr was seriously concerned about my body’s ability to get through them. She ran some tests and I can remember exactly where I was when they called to tell me the results. Sitting at work. I answered my cell phone which I shouldn’t have because well, I was at work, but I knew it was her office calling. The nurse said one sentence and it completely devastated me. You have the same thing wrong with your immune system that your Mom has. It was not the immune system comment that shocked me, I have been dealing with autoimmune issues since I was 7. The comment that shocked me was “the same thing wrong with your system that your mom has.” In simplest terms my body (blood) does not produce antibodies needed to fight infections/bacterias or viruses. This happens for a lot of reasons, the best we can speculate at this time for me is that it was genetic. I knew this news would crush my Mom who I knew would blame herself. I also knew that at the time I learned this she was in the hospital fighting for her own life. What I didn’t know is that her life would end just a few short weeks after learning this. I did tell her what we found out, but honestly at this point she was too weak to put up much of a fight about it or beat herself up too much. Her little body was already throwing in the towel. My very first thought was my God, is this what is going to happen to me?
I immediately called Kristina who came right to my office and held me. Said we would figure it out. We would do whatever it took, go to whatever lengths necessary. There were two co-workers who immediately learned this news as well, I will never forget their compassion. Thank you Kelsey V and Tara C. I called my Sister who handles bad news almost the same as good news but she simply said one thing to me. “You are not Mom.” She knew that my brain immediately went to what was happening with our mother.
My Dr sent me to the Illinois Cancer Center as this is considered a blood disorder, to begin receiving transfusions. That was one of the biggest wastes of time in my life. The oncologist basically didn’t want to deal with me because I didn’t have cancer and she also said my levels were not low enough for her to deal with me needing to receive transfusions. She recommended I see an immunologist. I won’t post her name because she could be the Dr of someone I know and while I thought she was one of the most heartless uninterested physicians I had ever encountered, that is not the point of the story. It was a horrible experience and one I think back to often. Onward I went to the only place that has ever provided answers or at least options if there were no answers, the Mayo Clinic.
Sadly, we live in a world where if you are lucky enough to have insurance, that company still dictates your care. What we learned at Mayo was simply yes, my body is not correctly producing these antibodies but insurance will not pay for the transfusions unless it stays below a certain level for consistent periods of time. In easier to understand terms, the best level I have had in years was 4 points above the insurance line and because it rose above the line they will not cover the transfusions. While I know I would feel a million times better if I could get a transfusion, I was less concerned about this news as I was that there was very little I could do on my own to increase the levels. They are what they are.
The day that we found out that I basically had to live this way and to do the best I can to take care of my body, was the same exact day my mom agreed to go into hospice. She was done fighting. She was done with tests. She was done with tubes, drugs, Drs, hospitals all of it. We were sitting in a hotel room in Rochester, Minnesota when my mom decided enough was enough. The parallels were overwhelming. I honestly didn’t know what any of it meant. I just knew I absolutely positively hated my body. And I clearly had no clue that my mom’s decision meant in just a few short weeks she would be gone. I had stupidly believed that she would “get better” getting off all of the drugs.
Then Covid happened. And I shit you not, I spent 2 years healthier than I have ever been in my life. Part of it was that we were sent home to work remotely. That was weird and awkward at first but life saving really. Mom passed away about two weeks after Illinois went into lockdown and I had no idea who I was anymore. I didn’t want to be around people. What a little blessing. But mostly I was healthier because I was not around germs. I stayed in my own little bubble and we did the best we could to keep ourselves well. Had groceries delivered, etc. The boys didn’t know the depths of why we were so adamant about them not going over to friends because honestly they don’t probably see the severity of my illness nor was that something they should be worried about. I am immunocompromised. It is not a word I like. It took me a long time to accept it. Also many people are so what is the big deal right? I didn’t have cancer and as a society we only have empathy for immunocompromised people who have the C word. There are many reasons why a person would have immune deficiencies, the C word is just one of them. So I kept this to myself. Put it in a nice little storage box and put it in the back of the closet. Having this problem with my blood means I will catch every single possible thing I can catch, specifically upper respiratory infections. Getting them isn’t the problem, we all get them. I can’t fight them like everyone else can. And the longer I have to hold on to one, the greater the damage to my internal organs are. Specifically my lungs. The very organ that finally gave up on my mom. So, Kristina and I kept me in a nice little bubble, sanitized my hands like a mad woman, and wore my mask religiously even when surrounded by friends and family who didn’t believe Covid was real or that masks were necessary and we lived in perpetual fear of what would happen to me if I got it. It was a shitty way to live, but it freaking worked.
Fast forward to present day and time. I got lazy. I stopped wearing my mask, I stopped sanitizing my hands, I clearly started running more errands and going to many places. We moved, it was extremely stressful, zero stars, don’t recommend. Just kidding it had to happen, but I hate moving and packing. HATE IT. In September I got one of the worst head colds/sinus infections of my life. It took me almost 6 weeks to fight. I got a little break. Ruptured my eardrum due to the sinus infection, that took forever to feel normal and I still have massive ringing. Got a few days break from that and then got the Flu. So more or less I have felt like complete garbage since September. I had to cancel meetings. I stopped my research, I stopped reading. It was enough just to get my client sessions done. Some I had to move until I felt stronger. My clients are amazingly understanding, even though none know the full details until now if they read this.
That was a lot of information to share with you to get the real reason for this blog. In the middle of all of this and when I had a few days of feeling like me again one of my very dearest friends lost her battle with cancer. There was never a question that I wouldn’t show up for her services. I drove back to Illinois (in horrible weather because it apparently snows in Wisconsin everyday until March) but the entire drive I was just so grateful I felt good enough to go. The visitation was Friday night, I like to go early. I have been to many and after so many hours it is a blur. I wanted to have a minute with her husband. It was after our embrace and some tears that he asked me if I was coming in the morning to her memorial service. I said of course. And then he asked me to do something I didn’t see coming. He asked me to speak at her service. Of course I said yes because I could tell that it was very important to him that someone do so, but I can assure you I was not prepared. I never believed in a million years the friendship I had built with her would end with me speaking at her funeral. It just was not part of the landscape I ever saw coming. What an honor and a privilege to speak but how the hell am I going to say what needs to be said about this amazing human being who spent entirely not enough time on earth? How can I sum up a life as beautiful as she was?
Dana didn’t publicly or even privately wax the “woe is me” prose. If she felt it she never said it. She took the news and made conscious decisions about how she was going to move forward with it. I know she had no idea how short her time was and that she truly believed that she could extend it, whatever it was. She did all the right things. Continued putting good stuff in her body, taking care of herself best she could. And it was obviously too late and not enough. When I returned home, I got the flu. And for 3 days I laid there feeling sorry for myself because I got a body that absolutely will not work correctly. Like a moth to a flame it will find germs and it will devour them and then I get to watch it devour me. Yes, SOOOOOOOOOO many people have the flu right now. But my problem is that I get to get the flu on cocaine. Much of my life I have never felt like I fit in or belonged anywhere. This is part of the reason. My body does not work like it is supposed to. It never has. And I hate it more often than I love it. And I ask myself why a lot? What is the purpose anyway? 75% of my life is spent feeling like I am coming down with something. It is wholly and completely awful. Could it be worse? Absolutely and there are many people fighting much much worse things than this stupid hand I was dealt. But here is the deal. I cannot compare my battle to someone else’s because it only leads to worse feelings about myself and my body’s consistent ability to want to beat itself up. It is a full time job to practice mindfulness and gratitude towards a body I cannot stand. And sometimes I fail miserably at it.
As I was leaving after my friend’s service I grabbed her husband, told him I loved them and was there for them if they needed anything. You know stupid words we use to offer help when really what he needed was his wife back and I couldn’t give him that. He stopped me and said wait. I want to give you something. Dana was a reiki practitioner. She believed very deeply in the power of clearing chakras and the enormous healing power of stones and crystals so naturally they were scattered all around her memorial tables. He reaches for one of the most beautiful pieces I have ever seen. A tree made out of amethyst. It was her birthstone. “I want you to have this,” he says. I say, “Jason, I cannot take this. I just can’t.” Of course he says “yes you can and you will.” I was honored to speak for her, never been so nervous in my life honestly and I don’t mind public speaking. But I was more honored to be gifted one of her favorite pieces. Where was she when she found it? What did it mean to her? What did it represent?
Here is where things get crazier and if you don’t believe in signs you should.
Amethyst Meaning and Symbolism:
Natural amethyst stones are connected to the third eye and crown chakras. The purple color to reddish-purple hues of amethyst has long been a symbol of peace, cleansing and calming energy. The crystals represent purification and connection to spiritual and divine beings. The meaning of amethyst is attached to serenity, understanding, trust and grace.
Amethyst Healing Properties:
Amethyst is believed to have healing properties that protect the bearer against negative energies. Some believe that the stone’s calming properties produce soothing dreams by making us more in tune with the divine.
The stone also brings clarity and peacefulness to the waking mind, as they help the mind flow freely in both the mental and metaphysical dimensions. In ancient times, it was thought that natural amethyst could purify the body of all toxins.
Ancient Greeks believed that the stone protected the wearer from drunkenness and enabled them to keep a balanced mindset. Wine was sipped from goblets incorporating amethyst stones to prevent inebriation, and stones laid on the sick to draw out infection.
Benefits of Amethyst:
It is said to dispel rage, help manage fears and anger, and calm rage and anxiety. Other believed benefits of amethyst include the ability to alleviate sadness and grief and dissolving negativity. The color of this gem is also connected to activating spiritual awareness, welcoming intuitive energies and enhancing one’s psychic abilities.
Initially it was only words I saw. I had to keep re-reading to fully understand. But what I first saw was peace, serenity, understanding, trust, grace, purification, toxins, infection, manage, fear, anger, sadness, grief. All things I needed to remind myself to do or have, or things I was constantly feeling.
I have spent so many years of my life trying to figure out why God would want me here if I was broken. If I didn’t work correctly, if I didn’t have the same tools as everyone else. I don’t often break down over my body’s inability to fight anything, I think Kristina has maybe seen me at a breaking point twice. It is awful when it happens. What happened in production to make me malfunction? Why can’t my body work like it is supposed to? I have grieved my body and its brokenness for most of my entire life. That is a long time to grieve.
A very profound shift happened after I returned home from saying goodbye to Dana. After I got well enough to move around and walk into my office where I put the amethyst tree. I stared at it for a very long time. What do I see? What do I feel? What does this conjure? And one thing rose to the surface. I didn’t become a Life Coach because I hated my job. I very much loved my job. I very much did not love the environment in which I did it. I have spent all of these years dealing with “what was wrong with me” on the inside, only to be in an environment that constantly told me I needed to change. That I needed to learn how to speak to people. The irony is not lost on me that I now spend my life doing exactly what they told me I needed help doing. I became a coach because I didn’t want other people to spend half of their lives figuring out what sparked joy for them. What makes them happy? What fills their cup? What blind spot are they telling about themselves so often that they truly believe it? Such as the one I tell myself on a consistent basis…that my body is junk. That I am junk because my body is junk. It is not and it is very far from the truth. I am a really good friend. I am a fantastic wife (everyone needs a wife.) I am a great cook. I am a great bonus mom. I am a great writer and I absolutely freaking love writing. I am a great organizer and I am very efficient. The list goes on. The problem is that this list comes into my mind very few and far between. The list that comes in daily is the one that tells me my body is junk. So every single day I have to make a conscious effort to believe in the good list and not the trash list. Every day I have to remind myself I was put here for many reasons and one of them is not to hate myself. I am a human being. I will have days where I really do hate my body. On those days when it is really hard to believe it has gotten me through many horrible things I try to remind myself of one positive thing that I am good at and hold very tightly to that.
This tree. This tree will forever be a symbol of hope for me. A symbol of not just a dear friend but of something to believe in. Something to hang on to. Something to remind myself that I have many branches and while my core may struggle and I will still be incredibly vulnerable to all of the elements, at the very root of who I am, I am an amazing human being.
I did not share this with you for sympathy, empathy, compassion or any other self serving reason and please don’t extend any. I shared this because it was time to get it out of my way. Time to admit I am human because I am. Time to show clients and potential clients I do not have this all figured out. I struggle too. But I am here. I am listening. I care. And most importantly I understand. Our paths may not be exactly the same, but I understand more than most people can comprend about self loathing.
Jason handed me this tree as a token of his appreciation. But what he did was provided me with a symbol of how resilient I am and how much more I will probably have to go through before it is all said and done. And I will get through it with one simple thought.
I am enough. I am more than enough. I have always been enough.
Exactly the way God made me.