Behind My Smile.
I am home from work, late, again, traffic was terrible. Homecare is still here helping my husband relearn how to manage daily tasks with his brain injury. I have a few minutes to relax before I must start my second job as his caregiver. I plunk myself down on my ratty old chair, with my nuked cup of coffee from this morning, grab my old tablet and open social media to see what my “friends” are doing today in the hopes I will feel more connected to my past life. After a few minutes of mindless scrolling, I need a reminder about why I do this to myself? I look at one friend having lunch on the waterfront, another at a concert, someone else sunning themselves in Hawaii, and then reality sinks in. This will never be my story. Just the same, I look at the photo I posted earlier that day of my husband and I sitting, drinking coffee at breakfast. I wish the photo were to say things are going well here, look how happy we are, but really it was me just trying to lighten my mood. I read the few comments which are mostly, “you guys look great!”, “nice to see things are going well”, or hearts and kisses emojis. I scroll to see who liked my photo in the hopes I will feel less forgotten by my “friends”. Living with a brain injury is terrible and today was terrible, just like most days. But I will feign a smile and post about my “perfect life” in the hopes I can keep up the happy appearance, or maybe even fool myself into thinking everything is great. What I take great lengths to hide is the pain behind my smile.
Five years ago, my husband was involved in a horrific accident driving home from work. To this day I can not look at the photos, and I can still hear the doctors voice when he told us that it was a miracle that he survived. Maybe I am still angry that this happened to him, to us, but is this really surviving? 5 years ago, our world changed forever.
The Ugly Truth About TBI
The first few weeks were bad, but our friends gathered and supported us. Our village of people made us meals, helped with the kids and getting them to their activities. But as time passed and his recovery plateaued, or he experienced setbacks followed by slight improvements, the help evaporated. On the outside he looked better. The bruises, cuts, broken bones healed and slowly he started to move again. As people saw his physical progress, they congratulated us on his “recovery”. What they did not see was the invisible injury that is still affecting our lives. There is not a day that goes past that I wish it were just a broken leg. If I am being honest, some days I imagine what my life would be like today if he had died in that accident – I do not really wish for anything to happen to him, but some days are so very difficult. That is the problem with an invisible injury. If you can not see it, it must not exist. Well, let me tell you this is not the case. A traumatic brain injury will never go away, and in my case, as with many, the person you committed to spending your life with is gone. I am now staring at a stranger I love, but at times, do not know, or like.
Living With Someone With A TBI
This is the hardest thing I have ever had to do, caring for someone I love with a brain injury. The man I promised to love in sickness and in health is not that person anymore. He looks the same on the outside and there are glimpses of who he once was but for the most part he is gone. The injury changed everything about him. My smart, fun loving, thoughtful, helpful, and compassionate person is gone. I am left with someone who is now angry, confused, forgetful, anxious, depressed, and sometimes violent both verbally and physically. He suffers with headaches, light, and sound sensitivities. Sometimes, if the headaches are bad, we are all required to sit in the dark making little sound. That is not easy for the children. I wish I could take them to the park, but someone must be at home watching. His personality changes are overwhelming. One minute he will joke around and laugh but the next moment be crying. On bad days he has violent verbal or physical outbursts. He has not physically hurt us – yet. The verbal abuse is terrible, name calling, degrading, abusive language and threats. Explaining his behavior to the children is painful for me, and them. This is not the person I married; this is not the life I signed up for. I am frightened when he explodes and worried that one day, I will have to seek a home for him that can meet his needs and manage his outbursts. But how does that work? How do I pay for that type of care while still supporting the children and myself? His depression and moods are overwhelming, and I barely sleep at night as I feel I must watch his every move for fear he hurts himself, or worse. I am exhausted.
He used to have a good job but since the accident he has not worked, and I am not sure that he will ever hold another job of any significance. The financial stress on the family is creating anxiety and I find myself squirreling away any extra pennies I have, just in case. The insurance money only goes so far and with his increasing medical needs like counselling, therapy, and prescription medications it seems to disappear faster each month. I am the only income and leaving him alone in the day is not an option. I have had to hire support. We modified our home so that he could have a quiet spot for the bad moments.
I wonder, as the children get older and their needs increase, how will I make all this work. He can not help. His license is suspended until he is medically cleared. Just thinking about all the responsibility I have is frightening, and overwhelming. I have a job, two kids, a home to maintain, medical schedules to stick to, bills to pay and a disabled husband who appears completely normal – at a glance. What about the future for the children, for us? I can not even let myself think that far. Some days it is just more than I can take.
Hindsight is 20/20
I am sorry I did not seek legal counsel after his accident. I trusted the agents and health care workers and I really believed that they had our best interest at heart. I was wrong. I said things I should not have, signed off on things I did not understand . We had no idea what our life would be like living with a brain injury. How were we to know that this was going to be a forever thing. The rosy glasses needed to come off, but I was clinging to the hope that things would get better. I needed someone who was experienced, educated, and not emotionally crippled to advocate for my family. My family needed someone who knows the road we are travelling on and that could help prepare us for what we are going to face in our new lives. With the right guidance from the beginning, there would be greater happiness, and less pain behind my smile.
Wishart Brain & Spine Law is here for you
Wishart Brain and Spine Lawyers are experienced, educated, successful and compassionate lawyers that know the road you are on. We have helped families just like yours. Your legal case is not just about a financial win its about you being able to live your best life possible. Our holistic approach to law means you get the help and support you will need now and for the rest of your life as you recover from your traumatic injury. You are not alone on this road. Let Us Guide You.
If you need help contact the Brain Injury Society of BC for guidance or speak with your family doctor for help.