I knew when I married my husband over three years ago that he has neurofibromatosis (NF), a genetic disorder that affects approximately one person in 3,000. Some people with NF go through life with few complications other than having a few extra birthmarks that look like spilled coffee. Others have so many benign tumors on their body that they are afraid to leave the house. Most people fall somewhere in between. NF can cause learning disabilities, increased cancer risk, chronic pain, disfigurement, vision disturbances, social isolation and much more. I wrote a much more detailed article about NF entitled “There’s Nothing Wrong with His Face, What’s Wrong with Your Manners? ” if you are interested in learning more about NF. For this article, I want to focus more on the emotional aspect of loving someone with a progressive medical condition. That means that the manifestations of the disorder gets worse as a person ages.
Instant Advocate
My husband told me about his NF a few months before we got engaged in 2010. I couldn’t get to my computer fast enough to learn what it was. For a common genetic disorder, doctors and the general public are surprisingly ignorant about NF. I have not stopped researching it since that day. Even though it afflicts several members of my husband’s family, he didn’t know that much about it either. I was heartbroken by what I learned, but I was determined that I would continue the relationship. Darrell was too special to let go over something he can’t control. No one can predict what illness we come down with or how long we will live. NF even plays out differently in the same family.
When my brother-in-law died in 2012 from a NF tumor that grew on his lung and became cancerous, I suddenly became an unintentional advocate for NF awareness and for my husband. I joined two support groups online and got involved with raising funds for the group NF Upper Midwest. We have gone on a three-mile walk the past two Septembers to raise money for NF advocacy and research. I never envisioned myself in this role, but it’s as simple as the fact that I love my husband dearly and hate NF with the intensity of a thousand burning suns.
Managing My Own Anxiety
I make my living as a freelance article writer, which means that research comes pretty naturally to me. It also means I can go overboard with it. I already know that NF can cut 15 years off the average lifespan and that it has taken two lives in my husband’s family. When I read about the seemingly dozens of complications that can arise because of it, it makes me more anxious than I already am. I had issues with anxiety before I met him and this sure doesn’t help. However, most days I don’t think about NF at all. When I do, I tend to get plagued with thoughts like:
- I wonder if he will make it through his 50s. (He turns 50 in two months; both family members died in their 50s.)
- I mentally plan his funeral in my mind.
- I think about how I would go on without him and how it would impact my children, who are his stepdaughters.
- I curse at the thought that I wasted so many years in the wrong relationship and wish we could have met in our 20s instead of our 40s.
- I wonder how I will take care of him if he becomes disabled.
- I wonder what will happen to our quality of life if he can’t work.
- I imagine that every time he has an ache or pain, it is because there is a new tumor forming inside of his body.
If I don’t derail this “what if” train after a few minutes, I start crying. I simply can’t allow myself to imagine all of the worst-case scenarios.
I Treasure the Present and Prepare for Battle
I will be honest. NF scares the heck out of me sometimes. The only way I can deal with the anxiety is to know everything I can about it and insist that my husband vet out new symptoms with a doctor. But in one way I am grateful for NF. It has made me appreciate the simple things in life, like my husband’s company even when we aren’t doing anything special. His genetic disorder, coupled with the fact that we were 42 and 46 when we got married, makes me not take a single day for granted. Sure, I have times when I forget how blessed I am and get crabby about inconsequential things, but those days are few and far between. We have had four wonderful years together so far, and I wouldn’t change a thing even if we don’t end up with as much time as I would have liked.
