20 Comments

  1. Sharon szasz

    Beautifully written and as always so true. So glad there are people like you to understand all of us. I don’t feel so isolated. Thanks.

  2. Kim

    Tears flow as I read your blog that I just stumbled along. It hit home and resonated with me deeply. My husband of 33 years is 16 months out of a ruptured brain aneurysm. We are so thankful that God chose to let him stay here with us even if it’s been a hard journey. It’s the “new normal” that we’re having to get used to. I hate that tern sometimes. But you’re so right about losing the old and finding the new. I’ll strive to be patient, loving and always thankful for having this wonderful man in my life. Thanks for expressing what so many of us are feeling.

    • Anj Granieri

      Thank you for opening up and sharing your feelings and experience. I’m sorry for your husband but very happy that you are still together and living life

  3. Elise

    once again absolutely spot on! Thank you for putting into words our experience. My TBI happened almost 6 years ago. The sentence you wrote “it is nearly impossible for outsiders to understand the ambiguous loss of something that never died, and yet goes missing” – THIS is profound on so many levels. Again thank you!

    • Anj Granieri

      Elise… thank you for your comment. Congratulations on 6 years of recovery! You’re practically a veteran! Any advice on us at almost the 3 year mark? What has recovery been like for you in the last three years? Also, I am glad my words have touched you. I hope you’ll keep reading our blog and comment more often. <3

  4. Renee Brown

    I cried to the black duffle bag story. When my 33 year old son went into surgery a year ago to have a tangerine size tumor (craniopharyngynoma ) removed, little did I know I was saying goodbye to my son as I knew him. I was expecting him to come out the same, minus the benign tumor, and be returning to work six months later. Since his wife left him, he lost his job and home, I have his personal belongings here. There are many things that he probably will never need again, like his extreme weather clothes for his job outside..now I will get rid of them. Patrick so reminds me of my son, except he was fortunate that you stayed with him. Matthew only has about a two minute recall memory and he has diabetes insipidus He is blind in one eye. I enjoy following you and Patrick as I can identify with so many of the things you write, God be with you both and keep up the great work. Find inspiration and strength knowing there are many finding strength from your stories.

    • Anj Granieri

      Renee… I am moved that my words made you cry. Though I am sorry if they caused you any pain. I cannot imagine the shock and horror of having your son stolen from you and replaced with someone new through a procedure that you felt certain would go smoothly. I am SO SO SO sorry to hear about what happened to your son as a result of his TBI, and that his wife left him. Unfortunately, that happens all too often. It is not easy to get rid of those belongings. Don’t rush it, and if it never feels right, don’t do it. And please know that I DO FIND STRENGTH more than I can say, in knowing that my blog is helping others out there.

  5. Gina

    So when I was cutting Bruce’s nails at the nursing home I asked him what do you miss the most? He said cutting my finger nails. I laughed. I said. That’s not what you miss the most. He looked at me and said.. I miss allot of things. With a serious look. I stopped laughing and said. “I know you do. But I don’t think cutting your finger nails is what you miss most!”. Then he said he sees the mail clippers on his bedside table at the nursing home and he can’t use them. Long story short. He is so different. .. I don’t think he knows his different nor what he misses the most.. he just knows things are different. Yes it’s very difficult. And to the ones that do know can hurt the most. I wonder what it’s like to be in that head… What goes on. Did he remember what it was like? If not.. God has blessed him.. to not have the awareness of what is missing. And hope to embrace the new life. Nursing home life at 51 State paid is not fun. But somehow you just have to keep on.. Leaning on God not thyself.

    • Anj Granieri

      Gina I cant say if Bruce has awareness about what is missing, but my guess is somewhere inside he does. I know Patrick does on some level as well… and as time passes he is more aware. He sort of forgets who he was, and that is probably best, but he knows that things are different… there is a feeling of floating at sea.. without a compass here. And no, nursing home life does not sound fun at all. Perhaps Bruce’s life can be a testimony and a voice to what is important in terms of brain injury treatment reform.

  6. Michele Murch

    I am dealing with this but with my son. It’s such a heartbreaking test of patience and love. I will never stop loving my son with all my heart, but he is a changed person now. The easy going, funny, good natured person has become a creature of habit and controlled by OCD. All new to me. He is still wonderful, but a different kind of wonderful. Thank you for your openness and for sharing. I think it helped alot of us!!!

  7. “Paul was right when he said that Patrick would be a new man, but he forgot to mention that I would be a new woman too. We both died that night, and we were both reborn. ”

    I love your way with words and how you describe my experience so perfectly. Thank you.

    • Anj Granieri

      Michelle, I am so grateful to be a voice for you and for so many others. It is one of my life’s greatest privileges! Thank you. And I hope you will keep reading and following our journey.

  8. I know exactly what you are saying. My daughter died and a new little girl emerged. I would always compare and I had to let her go and embrace the new daughter I had. It was really unhealthy for a while. I still go back and think about her but I try not to compare as its not fair on anyone. Thanks for the read.

    • Anj Granieri

      It is very very very hard not to compare. I still do it sometimes too. But you are right. The quickest way to happiness is to let go of comparison and learn to love our new people for who they are, while recognizing that much of who they were is still there as well. I hope you’ll continue to follow our journey to recovery!

  9. V

    your words and open honesty speak so directly to my heart. it’s as if you have lived some parts of my TBI recovery process as well. nothing compares to having to learn the “new you” at age 35 when most people have their identity and personality established by then. I don’t know where I’d be without my Husband (then Fiancée) especially when immediate family made things about themselves instead of trying to understand the deep impact TBI has on the survivor and their caregiver. thank you for sticking by your partner’s side when most people take the easy way out by so quickly putting labels on the survivor or by treating them like an outcast. none of them cared to ask how they could help or even how I was doing since the accident. I think that speaks volumes about what loving familial relationships should look like. showing unconditional love is what is needed for a healthy recovery process and for the survivor, knowing a loved one is rooting for your recovery makes a huge difference.

    • Anj Granieri

      Thank you for sharing such an open and candid response. I am sorry to hear you suffered a TBI, and what you are writing about is very real and true and people need to hear it. The loss of self is such a huge thing, and I cannot imagine what that feels like, what you and my boyfriend have gone through is horrific, and NOBODY should have to go through it. But you are warriors and have a message to deliver and awareness to spread and a purpose that is bigger and bolder than most. I hope you know that. I hope you’ll keep following along on our journey and commenting on these blogs. Hugs to you. xo

  10. Amy

    I was 35 when I had my stroke and brain surgery. I am 2 years and 8 months out. It was interesting to hear the other side of the reality. How crazy to find out my husbands feelings could be the same as mine. I felt I could relate to every word you wrote. I feel misunderstood and so confused at times how I could looked the same but feel so different inside. Your words helped me better pin point own my feelings. Thank you for your words.

  11. Anj Granieri

    Patrick is 2 years 9 months out. How are you doing? Its always interesting for me to hear as well from your side of the coin. And yes, I can almost guarantee you that your husband has similar feelings that you have. I am not sure Patrick feels as you do. I’m not sure if he feels a loss of self? But I know that I do, and I know that I grieve parts of him as well. I really do appreciate your comment, and I hope you’ll follow our journey and continue sharing and commenting on these blogs.

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