Erek is sitting between me and my Mom.
Yesterday was my youngest brother, Erek's, 34th birthday.
When Erek was a little kid he looked (and acted) JUST like my son, Max. I was so protective of him, often taking his side over my other brother's in sibling feuds. He made us laugh constantly and was definitely the family comedian. When I think of him, I still picture him as the 4-5 year old little boy with blonde hair (that is now brown), big eyes, and sweet soul. One time when he was really young, he had an allergic reaction to bee stings and his whole body swelled up like the Stay Puft Marshmallow Man. I remember that even during that time he managed to get me and our other brother laughing by acting like a chubby little "alien baby."
One time while we were on vacation, I got one of those prank gum shocker toys from a souvenir store. I asked Erek (he was probably 5) if he wanted a piece of gum, and when it shocked him and scared him, he started crying. I immediately started crying too and wishing I could take back what I had just done.
When we were at a State Fair in upstate NY, our mom bought us some candy apples. Erek was eating his and it was making such a mess all over his face. Some little girls started pointing and laughing at him, making fun of the fact that he had it everywhere. An anger boiled up in me over those bratty little girls' making fun of my baby brother, and I GLARED at them until they got uncomfortable and walked away. I have always been Erek's protector, and I will continue to be until the end.
For the last 9 years he has dealt with what medical experts have named possibly the most devastating chronic illness for a human being. Schizoaffective disorder is essentially schizophrenia AND bi-polar disorder. Schizoaffective disorder unmedicated is a horror story where reality is warped and twisted through visual, auditory and tactile hallucinations, persistent delusions, extreme paranoia, extreme mood swings, and inability to perform the basic functions of daily living to the point that many suffering in this state resort to suicide.
I have watched my brother go from being a perfectly happy baby, child, teenager, and young man that graduated from Fire Academy with plans to be a firefighter, to experiencing unexplained seizures, personality changes, hallucinations, and eventually full-blown schizoaffective disorder. I have seen him at his lowest low where he was throwing up violently from hallucinations and medication trials, falling asleep in public like he had narcolepsy, and being so depressed he could not lift his head up off the kitchen table on Christmas morning, which required our intervention and hospitalization.
I have cried and cried and cried over the pain of seeing this happen to Erek. It's incredibly painful to watch someone you love be sentenced to a hell that they cannot escape or control.
When Erek's medications were working he was stable enough to have good days...but then they would stop working. Or he would start feeling better and stop taking them, which would of course cause symptoms to reappear with a vengeance.
I have listened to Erek mourn the fact that he will never be a husband or a father, or even have a career. I mourn the fact that my baby brother has accepted his fate. I tell him constantly that he is so strong and that he handles his diagnosis so much better than anyone I know. He still finds ways to frequently bring laughter, fun, and meaningful conversations into our lives, despite feeling like a burden on all of us.
He is the BEST uncle to my kids, and you can often find them all cuddled up together on the couch, watching a movie or playing Minecraft together. He is 100% disabled and will never be able to hold a job--and trust me, he has tried. Over and over. He requires constant support and care from family and his medical team, and my mom has ALWAYS been there for him, even when he pushed her away at the peak of his illness.
Medication is life saving for some and Erek has been fortunate to have found medication that helps him live life while still coping with persistent symptoms. The fact that he celebrated his 34th birthday yesterday is a miracle considering what he has been through before finding the medications that stabilized him. But, the facts are indisputable. Life span is reduced significantly for people with this disease and the probability that he will need greater assistance as he ages is high. Our family wants to make sure he is always cared for, especially if something happens and we are not here to do it. This is an extremely severe, horrible illness that honestly could have been my own. Unfortunately, it claimed my brother as a victim instead. It is not an illness that deserves to be made fun of and it is highly stigmatized. No one would ever make fun of or shame someone with terminal cancer, yet chronic mental illness has been grossly misunderstood and mistreated. Please share this blog post and help me spread awareness.
ABLE accounts are a great way to prepare for the future care of your loved ones and donors can claim their charitable donations on their taxes. Find out more about ABLE Accounts for people with disabling conditions diagnosed before age 26 here: (https://www.ablenrc.org/)
You can read more about schizoaffective disorder here: Schizoaffective disorder - Symptoms and causes - Mayo Clinic
Erek holding my son.
Erek at age 17
