There are many losses to grieve during a brain tumor journey.

Grief is so hard and so personal. Everyone moves through it in such different ways. I was very surprised by how non-linear my grief was for the things that I lost in my brain surgery journey. I expected the grief to work more like my physical healing, to slowly get better each day. It just doesn’t work that way. I am eight years out from my surgery and I am still occasionally surprised by moments where grief sneaks up on me for my losses from my brain tumor. I feel the following analogy is the best one I have ever encountered for how grief works for me.

The other part of mourning my losses that was unexpected was how delayed my start on processing my grief was. I was in pure survival mode for the beginning of my brain tumor journey. I was making doctor appointments, researching, planning my hospital stay and recovery, going to vestibular therapy appointments, etc. I was very much living day to day and only handling the thing right in front of me. I found that about six months or so after my surgery was when I really was starting to feel like I made it through the eye of the storm. Then all of the sudden the grief just dropped on me.

When I was in that huge initial grief it really enveloped me. My whole life felt like it was my brain tumor diagnosis and that my changes to my hearing, balance, etc. were impacting everything. It got better. But it was important for me to take the time to sort through my thoughts and emotions. I needed to let myself grieve all the things I lost, and be okay with experiencing that sadness. It helped me move on, let it go, and work towards recovering important parts of my life.

For me, there were several things that helped with my mourning. I find movement and getting outside to really help my mental state. I also utilized micro goals and celebrating small successes to help give me something to look forward to and feel achievement. I found actively working on my disabilities and struggles really helped with my grief. It helped me feel more in control when I could do balance exercises to improve my balance, and getting my bone anchored hearing aid helped me not despair over my single sided deafness. Also, when I am grieving I find myself extra grateful for my children. My children helped ground me and remind me to be present in the moment instead of lost in my thoughts. The children also gave me a reason to get out of bed in the morning.

These days I am mostly content with my life. I will typically call myself healthy (that took years to change my thinking on). I have a better relationship with my body. I am able to give myself grace and be thankful for what my body can do. I work hard to plan out my life as much as possible to make it accommodating to my needs and help me to succeed. But at times I still run into an unexpected barriers, such as being completely left out of the conversation because the room has terrible acoustics. And I will grieve anew at my losses.