I’m proud to present to first contributor to Share Your Story. Nechama Sklar is a chronic illness warrior and writes at The Life You Gave Me. After her story is a small bio about her. I encourage you to jump over and check out this young woman’s blog. I’m sure you will become a follower just like I am.
I am Nechama and I have a chronic disorder known as MCAS, mast cell activation syndrome. Basically, my cells are having way too much fun done, treating many things that should be harmless as dangerous invaders.
When I am exposed to one of those triggers, my body desperately tries to get rid of it, any way it can. It usually doesn’t go for the typical reactions. Coughing fights, muscle spasms, flushing, and chest tightness are more its style. On some occasions those tiny little cells that are supposed to protect me even send me into anaphylaxis, a life-threatening allergic reaction that can kill if not treated properly. And for some reason no one understands, my spasms can get so bad I cannot eat or drink.
Because my body is so busy trying to get rid of all the false threats, it doesn’t have time or cells left to deal with the serious things like infections. The way my doctor explained it to me, it’s like the police officer who is so focused on stopping the old lady from jaywalking that he misses the robber robbing the bank across the street.
My severe immunodeficiency means I pretty much never go more than a few days without an infection. And not just strep or sinus infections – though I get those too – all my infections seems to spread throughout my body, and I’ve gotten some crazy infections that required weeks of antibiotics, including an infection in my heart that landed me in the hospital for four weeks.
I also have some other disorders, like GERD (acid reflux), asthma and lots of other symptoms no one can make heads or tails of. So now you know you know a little bit about me.
How do I keep going every day? I tell myself one crucial message I think anyone who a chronic illness or any kind of hardship needs to hear at least once a day: even if I were to fall a hundred times in one day, I would still get up. It’s a line from Rabbi Nachman of Breslov.
Because no matter how hard our lives are, no matter how many times life throws us to the floor, we stand everything to gain by getting up again. I have a strong support system that i made to fall back on at times like these. My support system is my family, my friends, my blog, my journal, groups on social media, mentors.
They have taught me that you can not choose your circumstances – only how you respond to them.You cannot choose your battles, you can choose how you fight them. And that keeps me going – knowing that I choose to take control over the one area where I have control – my reactions to circumstances.
You see, I used to believe I was a victim. But I’ve learned that I am a handpicked warrior.I have learned just how strong i can be when put to the test. I have learned that i can fight, fight to the death. I have learned that even though this illness has taken so much from me, it has given me strength to endure – well – anything really.
Now, don’t get me wrong. How many times have I cried? How many times have I wanted to put my hands up in defeat and say, “I can’t any longer”? How many times have I told God that I am not strong enough, that I can’t take it anymore?
Many, many times. There have been days where I was sure that I would just break. Days where I really did break. Those were the worst times in my life, days where I felt I had no one to turn to and nowhere to run. So I cried. And I moped. And some days I just stayed in bed and watched movies.
There was one time when I was in-patient in the hospital. The hospital couldn’t figure out why I couldn’t eat, so they thought I had made it all up. They came into my room and told me I had an eating disorder and that they would send me to an eating disorder clinic for a few months, however long it took, until I would “let myself eat again.”
It was the most awful time in my life. Worse than the times I was going into anaphylaxis every three days. Worse than the time when they told me I had a heart infection and could go into septic shock at any time. Because there is no place lonelier on earth than when people don’t believe you.
After the hospital told me that, I went completely mute. I refused to speak to the doctors who could make such an awful, distorted accusation. My family and I were horrified at the claims. There was nothing in the world I wanted more than to eat! But my body just would not let me.
I just cried and cried into my prayer book. I cried until the pages were soaked. I turned to G~d and said, “How could you do this to me? I have no one left who believes in me. No one left who cares about the truth. No one but You. You carry me, and you hold me because I have nothing but rocks to walk on.”
And He did. The hospital sent in the head of the psych team to get me to talk, and when I saw he was listening, we had a good talk, and he believed me. He gave me an antispasmodic medicine and within half an hour, I was eating. (So much for the eating disorder claims.)
I quickly learned that there was a team of doctors from a different hospital that had believed me all along. Many of them were certain that I did not have an eating disorder.
Not long after came the Jewish holiday of Passover. It is the time were need celebrate our miraculous exodus from our bondage in Egypt.as a orthodox Jew, me and my family and the many other religious families in the hospital celebrated.
Never had I felt more free. I knew then, that miracles do happen. ~and no matter how tough it seems~ we can all have miracles~ if we believe.
Is my journey over? Not by a long shot. My cells and me fight every day. The flares never seem to end and there always seems to be more problems than solutions.
But deep down, whenever I feel like giving up, I know that all hope is not lost.
Another thing that has really been transformative for me is an incredible idea that I hear in a shiur by rabbi yy jacobson that i have carried in my heart. He says that challenges are Hashem’s way of giving some of himself to us, connecting to us in the deepest way. When he draws us close, it is too much for us fragile humans. We shatter from being so close. That is the pain of yissurim .
So be strong. And hold on tight to Hashem. Our challenges are not an act of torture, they are an act of love. An act of being brought close to Hashem.
If you believe in yourself, in your loved ones, in G~d, you just better believe it~ there are miracles. And they come to those who stay strong and believe.
I’m a 17-year-old teen ultra-orthodox Jew who lives in Brooklyn, NY. I have MCAS , or mast cell activation syndrome- an allergic disorder that makes me allergic to- well, just about everything.
I have a primary immunodeficiency – a very long word that basically means I am also sick with one kind of infection or another.
I also have asthma and some form of autonomic dysfunction we are working on a diagnosis for.
I started my blog at a really low point in my life. I was in the hospital, physically unable to eat or drink. I would have given anything to eat or drink just one drop then.But the doctors in the hospital told me it was anxiety and were going to send me to an eating disorder clinic. I felt totally alone. I needed to share my feelings. I needed someone to hear me. And so, i let out my feelings to the world wide web. Thankfully, i got out of there safely, eating and drinking and not another word about eating disorders. Since then, my vision for my blog has expanded to include spreading awareness for all kinds of chronic disorders and providing support, coping skills and health tips for others with chronic illness.
I also run 2 online groups on facebook for those with chronic illness:teen mast cell warriors– for support, advice and encouragement for others teens and tweens fighting with a mast cell disease and let’s stay positive with chronic illness – a group with positivity challenges and quotes for staying happy with chronic illness.