Caring for the Carvers

"We're not meant to do this alone."

J has a neurological disorder called Neurofibromatosis Type 2 or NF2. Neurofibromatosis 2 (NF2) is a rare genetic disorder that is primarily characterized by noncancerous (benign) tumors of the nerves that transmit balance and sound impulses from the inner ears to the brain (bilateral acoustic neuromas/vestibular schwannomas). Essentially, it is a condition that causes benign tumors to grow on the nervous system. The estimated incidence of NF2 is 1 in 33,000 people worldwide. NF2 can be passed on or, as is the case with Jasen, it can be a spontaneous mutation. He has hundreds of tumors throughout his entire body at present with 8 of them being brain tumors. NF2 does not have a cure and there is no way to prevent growth of these tumors. People with NF2 have to learn to live with these tumors which cause constant pain or have them removed as they become problematic. Not all of the tumors are operable as they can cause more issues if removed based on where they are located. We'll talk about surgeries in a separate post but, know that he has had 30+ in the past 30 years. His next upcoming surgery will be March 10th.

We don't talk about it to anyone really except for with family and even that is minimal. No one really understands the extent of his sickness, myself included, there is so much unknown. We usually have not shared anything unless someone asks because he doesn't like to talk about it. He lives with NF2, he is not NF2. I find it inspiring how positive and giving he has remained while living with NF2. Despite it all, he has always been upbeat and looked on the bright side. He constantly chooses to focus on how blessed he is, and putting stock into his strength to overcome and persevere. That's not to say there aren't times when it is so heavy for him.

These tumors and their constant pain are a lot but, they have been manageable for him. I believe it is mainly due to his mindset and strength. He is super man. However, often times the tumors and their effects can be overwhelming. He is unable to fully be present at all times like he would like to be. Sometimes they cause him to operate at half capacity or put him in positions where he has to put on a front and make him feel like he has to "act normal" even though he is at such a low. J is amazing, he absolutely thrives when he is at full capacity! NF2 is a condition he lives with and it has taken a lot from him over the years. It has caused him to miss work, to lose opportunities and to miss events to cope with the pain that ultimately doesn't go away. His medical debt is in the hundreds of thousands of dollars and always increasing yet, his need for surgeries, doctor visits, procedures and medications never cease. To say Healthcare in America sucks for those who really need it is an understatement. That debt is always taking and burdensome, especially when he is unable to work due to the effects of NF2 or recovery time. All of it piles up and drowns you while trying to make ends meet with monthly expenses at the same time. There is an overwhelming amount of stress on him in many areas of his life because of this.

Recently, we have felt extremely discouraged with his lack of care and honestly feeling hopeless, not having any direction while we have attempted to seek help. Those words, "We are not meant to do this alone.", have been screaming at me. We talked about making a post to begin the discussion of NF2, specifically Jasen's life with NF2. I feel it is important to share as this is something he deals with daily and impacts his life significantly.