By: Christina Coates

Many of us arrive at an HOD diagnosis by the usual ways. It could be from a meningioma, a glioma, a cavernous malformation, a stroke, a brain bleed, or some sort of trauma to your brain. There are some of us who just happened to wake up one day with no balance, go to our doctors, and wait months or even years to receive a diagnosis of HOD. It doesn’t really matter how you get here, or what happened to bring you to the spot, but what does matter is that it requires an excessive amount of resources to live a normal-ish life.

The most common resource of mine that is consumed is time. Time for physical therapy and rehab therapies. Time for doctors appointments. Time for imaging. Time for medical studies. Time to help support and console patients who are recently diagnosed and terrified. Time to conceive and plan fundraising events. There really is no price that you can put on time.

I have had to buy a cane, a Rollator, a recumbent bicycle, many pairs of eyeglasses with prisms in the lenses, and invest in more plastic cups! Some items are covered under insurance, but many are not. I asked the community to tell me what kinds of things they’ve had to buy to help them live a normal life. Answers range from adding grab bars in the shower all the way to tearing down their existing home to make it more accessible. You can’t really understand how inaccessible homes are until you have the need for accessibility. I would’ve never considered the size of a doorway or the height of a shower step before my brain surgery and subsequent HOD diagnosis.

One of the more frustrating parts of all of this is our inability to be able to claim disability. Even with disability, you can’t really afford to live or buy the things that you need in your home to live a normal life. People on disability in the United States tend to be looked upon as lazy and just wanting to take money from the government unfairly so they don’t have to work. There is nothing that could be further from the truth. Folks that I have met in the disability community are some of the most hard-working and determined people I’ve ever known in my life. They have to work so much harder for everything that they have. Not only that, but they desire the ability to work and lead a normal life. Stereotypes are generally unfair and untrue.

Not only are people with disability having to work harder in life, but many times, especially in the rare disease community, we are asked to put ourselves on parade and fundraise constantly just for the ability to hire a research group to help us gather more information about the disease and how we can possibly treat its effects on us.

I was recently at an awareness event, and though it was my choice to be there, I felt like a token disabled person. You start to feel as if unless people feel sorry for you or guilty that they are not disabled, they will never contribute to your cause. I personally do not like feeling that way and I like to believe that humans are generally good and want to do good for others, but sometimes it’s difficult to see that. I am not any more brave than anybody else. If this was your brain and your life on the line you would do the same. What is the cost? Sometimes, it’s your dignity.

Whether your finances are consumed purchasing a new wheelchair or donating every last penny to an organization that can help you learn about your disease, the cost of rare brain disease can never be fully measured.