I consider myself a unwavering idealist. There is a certain way that I want the world to be, and because it is so far from it, I have always struggled with feelings of hopelessness and despair. My inability to “be realistic” though, is also what has allowed God to work amazing miracles through me. I have worked very hard for instance, to make this blog a place of eternal hope. I have purposely not shed light on the internal struggles that we face within the framework of TBI, but those struggles however, are daily; minute to minute, and even moment to moment.
Partly I’ve told myself that relationships are private, and what happens within them should be as well. And partly, I believe that. Surely there are things you wouldn’t share. However, lately I’ve been feeling that there is a desperate need for a naked realism with regard to how TBI effects our lives. The struggles we face, surely are understood without explanation by those who live it. But what about the those who live on the outskirts of TBI? There is such a lack of education, which leads to either unrealistic expectations of recovery for the obviously injured, complete ignorance of the invisible injury for someone who “looks normal”, and/or typically a total lack of support for both of them. With 1.7 million people suffering brain injuries a year, isn’t this more than just a private problem… isn’t this a societal issue?
So the question remains—How real, is too real – when talking bout TBI?
I suppose I have refrained all this time, (except within the confines of my online support groups), from talking about our struggles out of a sense of loyalty to Patrick. After all, my amazing, warrior boyfriend is not in a coma. He is not vegetative, nor minimally conscious. He reads my posts, and we discuss them. He is aware of what TBI has done to him; both good and bad. He has very dark moments of struggle, and so I’ve wondered if he would perceive my writing as an act of betrayal to him. There is also the question of how he would process my words – would he comprehend them – and would any acknowledgement of our struggle trigger his anxiety, abandonment issues, or feelings of worthlessness? I mean, when your daily job as caregiver is to be a fierce protector, but your daily job as a voice for the TBI community is to speak the truth of TBI, where do you draw the line?
Up till now i have drawn the line at keeping it all to myself. And that is what most caregivers do. We live in silence. But as I continue to see the daily anguish that TBI caregivers and survivors live with, it is becoming harder to remain silent. Because I know that my experience could help others realize that they are not alone, and perhaps help them hold onto their relationships.
My one friend, who we will call “Ms. S”., has a husband who looks completely normal, but has suffered two TBI’s. She is trying to raise six…SIX children while dealing with his daily seizures, and an audio processing disorder. He struggles with being anti-social, over-stimulated, and a whole host of other things. The other night he had a panic attack so severe that she almost called 911, which was followed by an “aura” that caused him to feel he was swallowing water and drowning, and then a seizure. Afterwards he was exhausted and slept for hours. This is her life EVERY. SINGLE. DAY. Yet her husband “looks normal,” and so, she goes without understanding or support.
Then there is my girlfriend, “Ms. N”, who’s 22 year old son is non-verbal and struggling between minimally and fully conscious. Despite the advice from doctors to put him in a nursing home, he lives at home with her and his siblings, and is total care. This mother, who works unbelievably hard to fight the insurance companies to get him the therapy he needs, has lost the support of her family, who due to a lack of education, believe this young man will just “wake up;” that he will “snap out it.” They do not understand the arduous, unbelievably slow process of healing, or what “recovery” even means for a TBI survivor at its best. They feel she has “given up” on her son. She feels isolated, alone and abandoned, and yet still finds the strength to work with her son every single day in his recovery.
And then we have Patrick and I; who live somewhere in between. Patrick presents as a person with TBI; he is missing half of his skull, walks unbalanced and with spasticity, speaks with mild Dysarthria, has a tendency to be verbose, and has mild weakness of his left side. He is not treated the same way Ms. S’s husband is.. (i.e “he looks fine to me”), nor Ms. N’s son is (i.e. talks about him like he’s not in the room). For us, it is more like we are aliens. People have no idea how to act around us, as we are not your typical couple. People always assume we are mother and son, therapist and client, or brother and sister. It seems that it alludes most people that a disabled person such as Patrick would have a girlfriend, and that of course, can sting badly. He struggles with reasoning, problem solving, processing, physical limitations, and so on. We battle his TBI together, and it always feels like its trying its damnedest to turn us against each other, and tear us apart. Yes, he’s come so far, but the struggle remains very real.
I want people, both within our TBI community and outside of it, to find inspiration in our story. I believe it is an amazing love story. It is not, though, some romantic chick-flick. Our story is a gut-wrenching, unholy mess of struggle and sickness, that was made sacred and redeemed only by our choice to love each other in spite of it. I want people to understand the gut-wrenching, unholy mess part. Because I think that is the part that makes what we’ve achieved so special. I believe it could help other couples, who look at us and say to themselves, “we could never have that – we could never be like them” to know the intensity of our on-going struggle. I want to show the suffering, and show how it can purify and intensify romantic love, instead of sweeping the pain under the carpet.
After all, is not the intensity of our struggles that makes the glory of our successes that much more brilliant?
I think so. And that is why I want to draw the line in a new place, and get more real, when talking about life with TBI.