There are many challenges that affect survivors, but one of the hardest has honestly been the unknown. There was no warning of things that I should look for or expect. No social worker came to talk to us in the hospital about how to handle this new life I had. It literally was “congratulations on surviving. Go live your life.” But…how? How do you do that after such an event? Care instructions were provided regarding medications, limitations, and follow ups, but long term “life” information was ignored.
There are so many organizations that focus on raising awareness for prevention and raising money for research, but who helps the survivors navigate this rocky path with sheer cliffs that we encounter on a daily basis? Who is there to help us prepare for the anxiety, depression, PTSD, and the grief over losing the person we once were? Research to improve survival rates is vital, but so is caring for the survivors.
Recently, a story surfaced in the NY Daily News about a husband and wife who tragically died in a double suicide after the wife survived a rupture, but they were unable to cope with the needs and loss of self. It’s a heartbreaking story that is repeated, over and over again. Where was the support for these survivors? How did the system fail them so completely that they didn’t feel like they could go on? More importantly, what are we doing to help others avoid this same fate?
I am 22 months post rupture and my journey has been hard. Others have it far worse, but everyone’s journey and response is unique. I have had to quit my job. I left a successful career, with a substantial salary because I could no longer do the tasks that job required. I had forgotten a lot of the technical aspects of the job. I can’t focus for prolonged periods of time. I struggle with vision issues, forgetting words, constant dizziness, exhaustion, and a migraine that has been present since my brain started bleeding the month before it ruptured. I have literally had a migraine every single day for 23 months. It doesn’t end. It is my horrible reminder that my life is different now. I have night terrors, flashbacks, and suffer from PTSD to the point that it can become debilitating. I wasn’t warned about these risks. I wasn’t told to pay attention for signs of depression. I was just told to be happy I’m alive and live my life. Some days it’s harder than others.
Four weeks ago, the headache was unbearable. I was tired…emotionally and physically. I was tired of fighting. I couldn’t stop the tears from falling because the pain was too much to handle. As I laid in my bed that day, I had decided I was done. The only option I saw, was to end my life. I truly believed that I had become a burden to everyone around me…my husband now had to support me, we had gone from a 2 family income to one. I struggled with doing things around the house so he had to take care of the house on top of working more than full time. And I was constantly going to doctors and needing medication, adding to the financial burden. Add all of that to the emotional toll this was taking on me. I don’t recognize myself anymore. I’m not sure who this person is inhabiting my body. When I look in the mirror, I see my reflection, but my thoughts are so different. My reactions to things, my emotions, my needs. It is scary and unnerving and I couldn’t do it anymore.
These thoughts have crept in a few times during my recovery. Each time, it was attributed to new medications I was taking. But this time…there were no medications to blame. This time, it was all me. This day, the more I thought about it, the more sense it made. The answer just seemed logical. Everyone else would be better off without me. I had nothing to offer this world but heartache and burden. As I laid there, I formulated a plan. Tears slowly fell down my cheeks as I thought about those people I love. I knew they would be hurt, but their pain would fade and they would be better off. I was making the right decision. That afternoon, I would do it. Before my husband got home from work. I hated the idea of him finding me, but I kept pushing that out of my mind. I had to.
After lunch, I went downstairs to get what I needed, at which point I was just numb. I had pushed all thoughts out of my head, except the occasional “it would all be over soon and you’ll be at peace.” As I stood in my kitchen holding one of my cats and telling him that I love him, the garage door opened and in walked my husband. I slowly put Duncan down and stared at my husband. I asked him why he was home and he simply told me he decided he should work from home that afternoon.
In that moment, I realized how terribly broken I had become. The tears didn’t stop. I sobbed uncontrollably as I told him what I was planning to do. I hurt and I didn’t understand how to make it better. I didn’t know how to get my life back. All I knew was that we needed help.
My story isn’t unique. It is far too common among survivors and caregivers. This isn’t an easy journey for any of us. What makes it harder is that we have no roadmap and no support to help us navigate. Many of us struggle emotionally and financially, but organizations are consumed with raising money (often asking survivors to donate) to help more people survive, but they seem to forget that there are survivors who need help now. We need to focus some of that dialogue on making patients and families aware, while they are still in the hospital that this will be an arduous journey. More importantly, help people realize they aren’t alone.
Let’s focus on helping survivors figure out who they need to talk to, how to work with financial burdens, and how to navigate the medical system. Let’s provide information and support before they leave the hospital…before it’s too late. Yes, we are grateful we are still alive, but what good is that life if we struggle with burdens that aren’t acknowledged or taken seriously? How do we help caregivers relate to the physical and emotional challenges, while still maintaining their own health? And finally, how do we help survivors create a new life when they realize their old life is a memory?
Can we please work together?
